beth67
01-27-2009, 09:20 PM
I was diagnosed with a Gitelman's variant in October. Had been feeling bad for quite awhile with muscle pain and weakness, brain fog, muscles twitching, not sleeping well, tingling around mouth and various other symptoms. Saw a kidney dr. and he put me on spironolactone and amiloride to stop the large loss of potassium. Still don't feel right.
Beth
Beth
Sponsor
wildgoose
01-31-2009, 11:39 PM
Hi Beth,
Just wanted to let you know that you're not the only one with potassium problems.
Been diagnosed tentatively with renal tubular acidosis without further testing since the potassium and spironolactone I'm on seem to do a good job keeping the potassium up.
I typed a longer response, but somehow the system wouldn't let me reply.
I've had problems for years and it's frustrating dealing with the side effects of low potassium.
I hope you get the right combo of meds working for you and start feeling better soon.
Just wanted to let you know that you're not the only one with potassium problems.
Been diagnosed tentatively with renal tubular acidosis without further testing since the potassium and spironolactone I'm on seem to do a good job keeping the potassium up.
I typed a longer response, but somehow the system wouldn't let me reply.
I've had problems for years and it's frustrating dealing with the side effects of low potassium.
I hope you get the right combo of meds working for you and start feeling better soon.
beth67
02-01-2009, 03:41 AM
Thank you so much for replying. I've been searching the net for people with low potassium and your the first one that has responded. This whole thing has really changed my life. I used to be an avid gardener, hiker, camper and was always doing activities with my kids but it has all come to a screeching halt. I hurt my sacro iliac joint about two years ago and I just wasn't responding to strengthening and physical therapy which is unusual for me. I was progressively getting weaker and weaker. My physical therapist would get more aggressive with me an hurt me even more. It took me awhile for it to click in my head that something was really wrong. Looking back the signs were there even before I hurt my back I just thought it was part of getting old even though I'm only 41. I saw a couple of doctors and they said nothing was wrong with me despite my sodium, calcium and potassium being low. Sometimes it would be red flagged on the labs and sometimes just in the low range. They acted like I was just a stressed out person and couldn't relax and wanted to prescribe medication but I didn't take it. I knew something was really wrong when I ended up in the emergency room with a high heart beat and uncontrollable muscle spasms. Even the er doctor said I was just having a panic attack. I went to a couple of more doctors and finally one said your right, things don't look normal on your labs. I was so relieved. She sent me to a kidney dr. and he first put me on spironolactone 50mg last October then Amiloride 5 mg in December because my numbers weren't getting high enough. The heart palpitations are gone but I still get skipped beats, tingling around the mouth and the muscle weakness is still present. Most of all I hate what it has done to my mind. I used to be very quick minded and organized and now I have trouble finishing a sentence. I really have to work to communicate. I feel fuzzy headed all the time. The kidney dr. said it would take six months for the muscle fatigue to get better. I really think all this has delayed my bodies ability to get over the sacro iliac joint problem because to help it you need to strengthen the core muscles. What were your symptoms with low potassium. Did you have the heart problems, muscle weakness and foggy brain. Are there any tricks you do to help your potassium get up when you feel bad?
Thanks,
Beth
Thanks,
Beth
wildgoose
02-01-2009, 08:56 PM
Hi again Beth,
I started feeling really weak, my legs ached and i just totally lost my oomph. I'm not a really athletic person but not a total couch potato, but I worked where I had to park several blocks away from my work and all of a sudden, I'd get part way there or to my car, and felt like I needed to sit down I was so weak. That was my first big sign.
I sit for my job, and when I stood, sometimes I felt like I was going to pass out, and I was really short of breath. I couldn't hardly finish a sentence without being really breathy.
Like you, my potassium was at the bottom edge of normal or slightly low but when I went in for pre-op testing found it was way too low. They gave me a huge amt of potassium to take before surgery, and it hardly moved. At the time I was taking the smallest amt of hctz and from the week before surgery to surgery day my potassium moved only .01 points. They had to infuse me the day of the surgery or the surgeon wouldn't operate.
They took me off the hctz (my bp was fine anyway).They had me do a stress test, holter monitor etc... all normal - the palps were from the low potassium. They took me off a new med I was taking thinking that was causing it. My potassium continued to drop after stopping it without any potassium supplements. It was a fluke appt with a different doc who put me on the spironolactone to help with leg swelling - telling me it wouldn't cause me to lose potassium but would help with swelling. I wanted to say, well hello - why didn't anyone else think of that.
The only problem is that I hate the spironolactone. It has it's own set of side effects - so I take a combo of potassium and spironolactone. It's not perfect, but it seems like I'm in a holding pattern since 2 docs have basically told me it doesn't matter what is causing it, the meds control it. (translation - they have no idea)
Anyway, I take roughly 75 mg of spironolactone a day and take 20 meq of potassium every other day. I don't have any suggestions - sorry. I can always tell when mine gets low, and I just take one extra potassium. I let my doc know that I do that, and every time I've gone in, my potassium has never been even close to high from an extra pill here and there.
Wish I had some words of wisdom, but like you - I've never really felt the same. Until the time all this started, my potassium had been totally in the normal range. Suddenly it went south... I'm in my mid-40's and just thought I was feeling the effects of "getting old" at the time this all started. Now, unfortunately, I'm de-conditioned, have other problems which don't help things, but other than the ever-present palpitations the numbers look ok on the lab work.
I started feeling really weak, my legs ached and i just totally lost my oomph. I'm not a really athletic person but not a total couch potato, but I worked where I had to park several blocks away from my work and all of a sudden, I'd get part way there or to my car, and felt like I needed to sit down I was so weak. That was my first big sign.
I sit for my job, and when I stood, sometimes I felt like I was going to pass out, and I was really short of breath. I couldn't hardly finish a sentence without being really breathy.
Like you, my potassium was at the bottom edge of normal or slightly low but when I went in for pre-op testing found it was way too low. They gave me a huge amt of potassium to take before surgery, and it hardly moved. At the time I was taking the smallest amt of hctz and from the week before surgery to surgery day my potassium moved only .01 points. They had to infuse me the day of the surgery or the surgeon wouldn't operate.
They took me off the hctz (my bp was fine anyway).They had me do a stress test, holter monitor etc... all normal - the palps were from the low potassium. They took me off a new med I was taking thinking that was causing it. My potassium continued to drop after stopping it without any potassium supplements. It was a fluke appt with a different doc who put me on the spironolactone to help with leg swelling - telling me it wouldn't cause me to lose potassium but would help with swelling. I wanted to say, well hello - why didn't anyone else think of that.
The only problem is that I hate the spironolactone. It has it's own set of side effects - so I take a combo of potassium and spironolactone. It's not perfect, but it seems like I'm in a holding pattern since 2 docs have basically told me it doesn't matter what is causing it, the meds control it. (translation - they have no idea)
Anyway, I take roughly 75 mg of spironolactone a day and take 20 meq of potassium every other day. I don't have any suggestions - sorry. I can always tell when mine gets low, and I just take one extra potassium. I let my doc know that I do that, and every time I've gone in, my potassium has never been even close to high from an extra pill here and there.
Wish I had some words of wisdom, but like you - I've never really felt the same. Until the time all this started, my potassium had been totally in the normal range. Suddenly it went south... I'm in my mid-40's and just thought I was feeling the effects of "getting old" at the time this all started. Now, unfortunately, I'm de-conditioned, have other problems which don't help things, but other than the ever-present palpitations the numbers look ok on the lab work.
flowergirl2day
02-01-2009, 11:54 PM
Great care must be taken with spironolactone and other potassium-building/sparing agents when they are used in people with reduced kidney function. Whether used singly or in combination with other potassium-sparing/building drugs, the risk of developing hyperkalemia (high potassium levels) increases greatly. Of course, one's potassium levels must be closely monitored. (This might not apply in the Gitelman's disorder.)
I have been struggling with potassium issues as well. It has taken two years to bring my potassium to a normal level. I was on up to three potassium sparing/building medications at a time, worrying constantly about becoming hyperkalemic. A potassium-wasting thiazide diuretic offset the accumulation of potassium sufficiently. Taking the K supplements would have worked faster, but it is not recommended for people with reduced kidney function. I am glad to hear the K supplements with Spironolactone seem to be working well. :)
I have been struggling with potassium issues as well. It has taken two years to bring my potassium to a normal level. I was on up to three potassium sparing/building medications at a time, worrying constantly about becoming hyperkalemic. A potassium-wasting thiazide diuretic offset the accumulation of potassium sufficiently. Taking the K supplements would have worked faster, but it is not recommended for people with reduced kidney function. I am glad to hear the K supplements with Spironolactone seem to be working well. :)
wildgoose
02-02-2009, 12:58 AM
Hi Flowergirl,
I was really nervous when they first gave me the spironolactone along with the potassium. We immediately cut the potassium in half, then after testing a few months later raised the spironolactone and at that time cut the potassium in half again. Later we reduced the spironolactone a bit because of the side effects. So far it seems to work fairly well. I've used the combination for over 2 years now. Sure beats nothing but way too many huge potassium horse pills that I took for 3 years prior. :D
My kidney function has tested great every time thank goodness, and my doc hasn't indicated a need to see a kidney specialist yet. That's why I questioned the RTA diagnosis.
The tentative diagnosis of renal tubular acidosis is what brought me to this website. I'm still clueless as to definitely what's causing it to drop. If my endocrinologist wants to send me though, I'll go to try and solve the mystery. If I'd always had low potassium I wouldn't even think about it, but suddenly going from a mid 4 range my whole life to below 3 is not normal - at least for me. Now I'm happy if I reach 3.7-4.0 - I feel better mid 4's though.
Thanks for the heads up on the potassium/potassium sparing meds combo though. Luckily I'm in healthcare so I know the risks (know just enough to make me worry) but not everyone who reads these boards is.
I'm glad you finally found a combo of meds that worked too.
It's all just trial and error isn't it?
I was really nervous when they first gave me the spironolactone along with the potassium. We immediately cut the potassium in half, then after testing a few months later raised the spironolactone and at that time cut the potassium in half again. Later we reduced the spironolactone a bit because of the side effects. So far it seems to work fairly well. I've used the combination for over 2 years now. Sure beats nothing but way too many huge potassium horse pills that I took for 3 years prior. :D
My kidney function has tested great every time thank goodness, and my doc hasn't indicated a need to see a kidney specialist yet. That's why I questioned the RTA diagnosis.
The tentative diagnosis of renal tubular acidosis is what brought me to this website. I'm still clueless as to definitely what's causing it to drop. If my endocrinologist wants to send me though, I'll go to try and solve the mystery. If I'd always had low potassium I wouldn't even think about it, but suddenly going from a mid 4 range my whole life to below 3 is not normal - at least for me. Now I'm happy if I reach 3.7-4.0 - I feel better mid 4's though.
Thanks for the heads up on the potassium/potassium sparing meds combo though. Luckily I'm in healthcare so I know the risks (know just enough to make me worry) but not everyone who reads these boards is.
I'm glad you finally found a combo of meds that worked too.
It's all just trial and error isn't it?
flowergirl2day
02-02-2009, 02:17 PM
Hi, :)
like you, I hated spironolactone at first. It had an immediate effect on my hormones and caused my periods to stop - a very common side effect. Another thing that bothered me was that this drug, like so many others, has not been tested for safety when used over a long period of time. I feel that because it also helps with cardio issues, besides conserving potassium and having weak diuretic properties, the benefits are greater than the risks and don't mind taking it now. I have been on spironolactone (and other drugs) for two years now. I agree that finding the right drug combination is trial and error and takes time. I experienced the side effects of low potassium you mention, including tingly/numb arms and hands. This really bothered me because it was present 24/7 for months at a time, and made even simple things like using a hair dryer extremely unpleasant. Luckily, these symptoms went away when the potassium level normalized. :)
As far as your diagnosis....well, I would also question it if I were you. If there is a slightest chance that you have RTA, (based on whose findings?) you should be under a nephrologists' care. In many kidney (and other) disorders, no "damage" or loss of kidney function is evident initially. It can take a long time for the damage to progress to the point when it becomes symptomatic. With early intervention a lot of problems can be avoided. Good luck with those potassium levels!
flowergirl
like you, I hated spironolactone at first. It had an immediate effect on my hormones and caused my periods to stop - a very common side effect. Another thing that bothered me was that this drug, like so many others, has not been tested for safety when used over a long period of time. I feel that because it also helps with cardio issues, besides conserving potassium and having weak diuretic properties, the benefits are greater than the risks and don't mind taking it now. I have been on spironolactone (and other drugs) for two years now. I agree that finding the right drug combination is trial and error and takes time. I experienced the side effects of low potassium you mention, including tingly/numb arms and hands. This really bothered me because it was present 24/7 for months at a time, and made even simple things like using a hair dryer extremely unpleasant. Luckily, these symptoms went away when the potassium level normalized. :)
As far as your diagnosis....well, I would also question it if I were you. If there is a slightest chance that you have RTA, (based on whose findings?) you should be under a nephrologists' care. In many kidney (and other) disorders, no "damage" or loss of kidney function is evident initially. It can take a long time for the damage to progress to the point when it becomes symptomatic. With early intervention a lot of problems can be avoided. Good luck with those potassium levels!
flowergirl
beth67
02-03-2009, 02:56 AM
The test that really pinned down my condition was a 24 hour urine collection. I always go to the lab a few days later to get my own copy of the test so I can see what the doctor is looking at when I'm on the phone. I looked at the results and immediately thought oh my gosh that doesn't look good. The range for 24 hour potassium a normal person should lose is 24-125mmol. I was losing 839mmol a day. My doctor sent me to a kidney specialist and the results from this test and my other symptoms pretty much convinced him what was going on. He said what I have doesn't have a name but I was close to being like someone with Gitelman's. You might want to see a kidney doctor just to have an extra set of eyes of someone who specializes in kidney problems. Like you my kidneys are not failing they just have their signals messed up. I take 50mg of spironolactone and 5mg of amiloride and I don't know if what I'm experiencing are side effects or just other strange effects of low potassium. I was in the store the other day and I was trying to focus on something on the shelf and it felt like my eyes were fluttering and the object looked like it was shaking. I also felt a little loopy when this happened. It was a very uneasy feeling. I just basically feel strange all the time. How long did you guys start to feel the muscle weakness and fatigue go away. My kidney doctor said it would take six months. I've been taking the meds for three months and feel only slightly improved. I have Klor-con 25 meq the doctor prescribed but I'm afraid to take it because I read it can be hard on the stomach and I have a tendency to get ulcers. Have you guys tried it. As far as my potassium getting too high my doctor said it would be very hard with my condition so I'm not too worried about hyperkalemia. Thanks for your feedback. It's nice to know I'm not alone.
Beth
Beth
flowergirl2day
02-03-2009, 03:21 AM
Beth,
I am not sure about the muscle weakness, mine has been around for two years. I have various muscle aches and pains, which I attribute to my other medications. Muscle problems are a very common side effect of many prescription drugs. Also, some of them and the fatigue are due to aging and other medical issues (such as anemia), no doubt. As you suggest, I will read up on the Gitelman's syndrome. I've just had a renal biopsy which, hopefully, will shed some light on what is going on. To date, all other tests have not been able to determine the exact cause of the problem, though they've helped rule out several possibilities. I have had a good nephrologist for a couple of years now. I don't know anyone with my type of problems, though I am sure there are many. That is why it's so nice to be able to come here and share our experiences. :)
flowergirl
I am not sure about the muscle weakness, mine has been around for two years. I have various muscle aches and pains, which I attribute to my other medications. Muscle problems are a very common side effect of many prescription drugs. Also, some of them and the fatigue are due to aging and other medical issues (such as anemia), no doubt. As you suggest, I will read up on the Gitelman's syndrome. I've just had a renal biopsy which, hopefully, will shed some light on what is going on. To date, all other tests have not been able to determine the exact cause of the problem, though they've helped rule out several possibilities. I have had a good nephrologist for a couple of years now. I don't know anyone with my type of problems, though I am sure there are many. That is why it's so nice to be able to come here and share our experiences. :)
flowergirl
wildgoose
02-03-2009, 10:56 PM
Beth,
When was your potassium last tested? I would take the Klor-con/potassium - it'll probably make you feel better, but make sure you get your potassium tested after a couple of weeks or so. That might be what's making you feel weak. What was your potassium level the last time it was tested? Everyone has a point that they feel better, but it helps to keep a check on it regularly.
As far as stomach problems go, I'm the queen. I just make sure I take my potassium with food - I haven't had any problems so far, and I've been taking a lot of potassium for years now. (knock on wood) I do take prilosec though too. That's one reason I was originally happy to go on the spironolactone - to avoid taking so much potassium. For a long time I took 40 meq a day.
Like flowergirl though I had period problems with the spironolactone - except I had too many too close together. Beats me how one person it works to stop cycles, and others to have too many. Cutting back the dose helped me though, and I have less aches and pains from less spironolactone now too.
I've done several 24 hr urine tests, but it was for a couple of other things that were ruled out roughly 3 yrs ago. I don't know if potassium was even monitored in it. They tested me for several endocrine problems. I've also had cT scan to check for adrenal gland problems and truckloads of bloodwork. Nothing is glaringly obvious. (so I've been told)
In the middle of everything I had thyroid problems, and an unusual cancerous tumor removed, so everything's complicated.
The two of you are making me think I need to ask about seeing a kidney doc. I'm so tired of paying for tests though - I should take stock in my medical group. :D
Here's to finding answers to questions so we can all feel better. And I agree, it does feel good to know I'm not the only one with unexplained potassium problems.
When was your potassium last tested? I would take the Klor-con/potassium - it'll probably make you feel better, but make sure you get your potassium tested after a couple of weeks or so. That might be what's making you feel weak. What was your potassium level the last time it was tested? Everyone has a point that they feel better, but it helps to keep a check on it regularly.
As far as stomach problems go, I'm the queen. I just make sure I take my potassium with food - I haven't had any problems so far, and I've been taking a lot of potassium for years now. (knock on wood) I do take prilosec though too. That's one reason I was originally happy to go on the spironolactone - to avoid taking so much potassium. For a long time I took 40 meq a day.
Like flowergirl though I had period problems with the spironolactone - except I had too many too close together. Beats me how one person it works to stop cycles, and others to have too many. Cutting back the dose helped me though, and I have less aches and pains from less spironolactone now too.
I've done several 24 hr urine tests, but it was for a couple of other things that were ruled out roughly 3 yrs ago. I don't know if potassium was even monitored in it. They tested me for several endocrine problems. I've also had cT scan to check for adrenal gland problems and truckloads of bloodwork. Nothing is glaringly obvious. (so I've been told)
In the middle of everything I had thyroid problems, and an unusual cancerous tumor removed, so everything's complicated.
The two of you are making me think I need to ask about seeing a kidney doc. I'm so tired of paying for tests though - I should take stock in my medical group. :D
Here's to finding answers to questions so we can all feel better. And I agree, it does feel good to know I'm not the only one with unexplained potassium problems.
beth67
02-04-2009, 07:02 PM
I had my blood tested on Jan. 8 and the potassium was 3.5. The range is 3.5 to 5.1 at the lab I go to. I have had nine tests since last June and 4 times it was below 3.5. The lowest I've been is 3.1 and from what I've read people can get much worse than this and probably feel worse than me. What is interesting is that when I did the 24 hour collection which showed a huge loss of potassium, I had a blood test done the same day and my blood potassium level was 3.6, in the normal range. If the doctor hadn't ordered the urine collection they would have probably looked at my blood test and thought nothing is wrong with me and I would have probably thought maybe all this is in my head like one doctor said to me. He even wanted to prescribe prozac because he thought I was too stressed out. You would think with the urine test showing such a large amount of potassium leaving me that my blood test would also reflect that. The kidney doctor hasn't order anything but blood tests since I started the Spironolactone and I'm thinking of requesting another urine test because I think that gives a better picture of whats going on. My potassium numbers haven't really gone up since being on the meds. I sure don't feel much better despite being on the the Amiloride and Sprionolactone since mid October.
You said you have thyroid problems. Do you take Synthroid? I'm on it and keep wondering if I should investigate bio-identical like Armour brand. My endocrinologist won't even discuss bio thyroid meds. She sticks to the established doctor views and is not into alternative stuff. I'm wondering if I would feel better on Armour.
Beth
You said you have thyroid problems. Do you take Synthroid? I'm on it and keep wondering if I should investigate bio-identical like Armour brand. My endocrinologist won't even discuss bio thyroid meds. She sticks to the established doctor views and is not into alternative stuff. I'm wondering if I would feel better on Armour.
Beth
wildgoose
02-04-2009, 10:45 PM
Hi again Beth,
I only have time for a quick reply, but just wanted to tell you I sympathize with you. I'd start taking the potassium - I think you'll feel better. Unfortunately a lot of the side effects of the spironolactone are the same as low potassium - at least the side effects I get. So you could either be feeling the effects of the spironolactone OR the low potassium.
Your potassium is at low normal - just like me. Mine doesn't drop drastically over night or anything. Meaning, if I went off my meds, it would take a little while for my potassium to start to drop, so you might lose more quickly than I do. I've never taken only spironolactone, so I can't comment on how I felt without the potassium along with it. The potassium was my only med for a long time. I think my lowest level without anything was 2.8 or something like that.
I always think, hmmm - what med could I NOT live without on a desert island. It would be my potassium. :D
Good luck, and if that same doc prescribed the potassium and the spironolactone - I'd take it.
Hope you feel better soon. :)
I only have time for a quick reply, but just wanted to tell you I sympathize with you. I'd start taking the potassium - I think you'll feel better. Unfortunately a lot of the side effects of the spironolactone are the same as low potassium - at least the side effects I get. So you could either be feeling the effects of the spironolactone OR the low potassium.
Your potassium is at low normal - just like me. Mine doesn't drop drastically over night or anything. Meaning, if I went off my meds, it would take a little while for my potassium to start to drop, so you might lose more quickly than I do. I've never taken only spironolactone, so I can't comment on how I felt without the potassium along with it. The potassium was my only med for a long time. I think my lowest level without anything was 2.8 or something like that.
I always think, hmmm - what med could I NOT live without on a desert island. It would be my potassium. :D
Good luck, and if that same doc prescribed the potassium and the spironolactone - I'd take it.
Hope you feel better soon. :)
Sunshine008
02-15-2009, 11:42 AM
I have finally found others with similar potassium problems! I'm sorry to hear that many of you are feeling bad just like me.
It's been going on for 3 1/2 years now and is continually getting worse. No explanation even though I've had loads of tests. Even my 24 hour urine tests were normal. Sometimes the low Pot. shows in blood. Sometimes not. Sometimes I feel terrible and know it's low potassium but the b/w looks normal. Cardiologist said that it could be a shift in the cells and not show up in the blood. He has seen me at my worst with heart arrythmia and all.
I also have bad joint problems - all started at the same time. Clicking, popping, sublexing joints...all joints...very painful...and they are getting worse with every shift. Anyone else experience the joint problems in terms of the symtoms above?
I'm frustrated. After fighting to figure this out for 3 1/2 years, I feel somewhat defeated. I've been to many docs and Mayo Clinic. Some say I have anxiety, but most say there is something wrong that they just can't catch. Even mayo believes that and asked me to fly back (from Japan) in June for one week (I was there 3 weeks last year!!!).
Any insight? I'm so happy to meet you. I need that about now! ;)
Sunshine (expat in Japan)
It's been going on for 3 1/2 years now and is continually getting worse. No explanation even though I've had loads of tests. Even my 24 hour urine tests were normal. Sometimes the low Pot. shows in blood. Sometimes not. Sometimes I feel terrible and know it's low potassium but the b/w looks normal. Cardiologist said that it could be a shift in the cells and not show up in the blood. He has seen me at my worst with heart arrythmia and all.
I also have bad joint problems - all started at the same time. Clicking, popping, sublexing joints...all joints...very painful...and they are getting worse with every shift. Anyone else experience the joint problems in terms of the symtoms above?
I'm frustrated. After fighting to figure this out for 3 1/2 years, I feel somewhat defeated. I've been to many docs and Mayo Clinic. Some say I have anxiety, but most say there is something wrong that they just can't catch. Even mayo believes that and asked me to fly back (from Japan) in June for one week (I was there 3 weeks last year!!!).
Any insight? I'm so happy to meet you. I need that about now! ;)
Sunshine (expat in Japan)
beth67
02-17-2009, 03:33 PM
I know how you feel. I hunted the net for months trying to find people like me. I just continually posted on this board until someone replied and my persistance has worked. I also have terrible joint problems. The last two nights have been awful. Lately my feet hurt so bad at night they keep me awake. I'm not walking or standing at night so I can't figure out why they hurt so much. Stepping on the floor in the morning is very painful. My joints in my low back, hip and mostly my sacroiliac joint go in and out all the time and I'm in constant discomfort. The low potassium thing I have causes muscle weakness and I hurt myself bad about a year and a half ago and I think my muscles are just too weak from not getting the proper treatment for so long because doctors thought it was all in my head, that the injury just hasn't healed. I've been doing alot of reading about fibromyalgia and I think I have that. I think the back injury then the kidney problem plus I've been dealing with thyroid cancer for four years with the doctor messing with my Synthroid has triggered the fibromyalgia. I'm hunting for a good doctor who can give me a lagitamate diagnosis but I'm pretty sure I have it. Anyways, I'm so sorry to hear your having a bad time. It's been nice coming to this board to vent concerns. Hopefully it's helpful for you.
Beth
Beth
Timber
04-17-2009, 02:47 PM
Any of you guys still reading this thread? I too have had a long history of potassium problems.
beaglema1
04-22-2009, 05:58 PM
I am having a hard time getting my posts to go to the right page, hopefully this one will go where it is suppose too.
My son has Gitelman's Syndrome, he was diagnosed when he was 10. He had low potassium, chest pain, abnormal EKG's, low magnesium, muscle aches, and poor concentration. With potassium, magnesium, and amiloride his condition is being controlled.
Be glad to help anyone with questions about this condition. Anyone having information on Gitelman's Syndrome please post, I need to learn all I can about this condition.
beaglema1
My son has Gitelman's Syndrome, he was diagnosed when he was 10. He had low potassium, chest pain, abnormal EKG's, low magnesium, muscle aches, and poor concentration. With potassium, magnesium, and amiloride his condition is being controlled.
Be glad to help anyone with questions about this condition. Anyone having information on Gitelman's Syndrome please post, I need to learn all I can about this condition.
beaglema1
beth67
05-06-2009, 11:29 PM
Hi all, I've been gone for awhile and I'm glad to see this thread still going. beaglema1, you said your son has Gitelman's. He had the exact same symptoms as me. Poor guy, I know how he was feeling. It really can wear you out. I'm now taking 50mg of spironolacton and 10mg of amiloride. I'm not taking any extra potassium. I haven't got a blood test lately but I think it would show my potassium going up because I'm finally starting to feel a little better. Doctor said it would take about six months after getting the dose right before the muscles stop feeling weak. I'm almost at the six month mark. My magnesium was a little low and I'm taking about 500mg a day. What type of magnesium do you give your son? I wonder if the kind I'm taking is good quality.
Beth
Beth
tired47
05-07-2009, 01:35 PM
beth67,
So glad to see you are back... was worried you were either feeling really bad or hoping you were feeling so good you did not have time- catching up.
Keep us posted on your news.
I take magnesium, it really helps my heart. I take magnesium citrate. It is better absorped. Magnesium oxide is the worst absorbed and can cause diarrhea. I tkae 600- 800 mg daily.
Hope this helps you!!
:)
So glad to see you are back... was worried you were either feeling really bad or hoping you were feeling so good you did not have time- catching up.
Keep us posted on your news.
I take magnesium, it really helps my heart. I take magnesium citrate. It is better absorped. Magnesium oxide is the worst absorbed and can cause diarrhea. I tkae 600- 800 mg daily.
Hope this helps you!!
:)
beth67
05-11-2009, 01:11 AM
I'm glad you let me know about the magnesium oxide. I've been having intestinal cramps and bowel problems for awhile. I looked at my magnesium and it is oxide. I'm definetly going to look for the citrate and see if that makes things better. Wow, all this time that could be it. I'm taking 500mg a day but I think I'll up it because I was reading that it helps with the fibro. Thanks for the advice.
Beth
Beth
plash561
05-24-2009, 04:06 PM
I was just diagnosed with Gitelman's last Wednesday. there is so little information. My dr. suggested going on the internet to find more info. Whatever anyone could tell me would be so helpful. I was prescribed spironolactine and mag-oxide. thanks.
beth67
05-25-2009, 02:45 PM
Hi, glad you found us. I know what you mean. Gitelman's is such a rare disorder it's not like someone with heart disease that can call a toll free 800 number and within a week get a whole envelope with info from the american heart association. I went undiagnosed with this thing for over a year thinking I was going mentally insane. Ended up in the emergency room a couple of times because the low potassium was messing with my heart and each time the doctors would say I was just anxious and wanted to prescribe me sedatives which I never took and luckily I finally found a doctor that would listen to me. It was so refreshing to finally have someone say that yes, your blood work doesn't look right, I'm sending you to a kidney doctor. I'm on 50mg of spironolactone and 10 mg of amiloride. My magnesium was a little low so I make sure I take supplements for that and my vitamin d and calcium are low so I'm taking 3,000mg of d and getting it checked regularly until it is stabilized. Also my ferritin and iron saturation is low so I take extra iron and vitamin c to help it absorb. I'll tell you what I know about the disorder but I may not use the right medical terminology but I'll try to explain the basics. Gitelman's is a genetic disorder. You get one gene for it from your mom and dad. The cells in the kidneys get confused and they don't retain enough potassium and let alot of it go out your urine. Normal urine potassium excretion should not be over 125mmol/day. My excretion was around 890mmol/day. Too much was leaving my body. I think the normal blood range for potassium is 3.5 at the low end of the range and I was around 3.1. Some people from what I understand can have much lower blood levels. I felt bad enough at 3.1. I can't imagine being lower than that. The spironolacton and amiloride are potassium sparing diuretics. They help the body to retain some of the potassium that could otherwise leave in the urine. My doctor says that my urine potassium excretion will always be high but with the medication we are kind of playing a tug of war with my kidneys. Letting them let potassium out but trying to pull some back by shutting down some of the cells that are letting too much out. My worst symptoms were muscle weakness, confusion, muscle spasms and twitching, muscle pain, tingling around the mouth from my chemistry being off, dizziness, skipped and rapid heart beat. The doctor said it would take about six months after we got my blood levels up using the medication before my other symptoms went away. It's been about four months since we finally got my dose right and I'm just now starting to feel a little bit better.
Are you seeing a kidney doctor or a general doctor. How were you finally diagnosed. With a urine potassium excretion test? What were your symptoms and what finally led you to the doctor?
Beth
Are you seeing a kidney doctor or a general doctor. How were you finally diagnosed. With a urine potassium excretion test? What were your symptoms and what finally led you to the doctor?
Beth
plash561
05-25-2009, 07:57 PM
Beth,
I am seeing a kidney dr. My regular dr. was stumped, she couldn't figure it out but knew something wasn't right. So she sent me to a kidney dr after about 6 months of trying.
I am at a really low point but trying to be positive about the situation. At least I know I'm not crazy. I am a small business owner and under stress all the time, thought the heart palps were just stress and all the muscle aches and feeling awful was due to over work overweight and getting older, I just turned 48. I'm worried that my two children could have this, I also have a 3 year old grandson. I told all of my family over the weekend so that my sister and her kids can get tested. I still need to talk to my brother. Our mother has been battling kidney disease for the last couple of years, she is in end stage kidney failure and is now on dialysis 3 times a week. So all of it is pretty scary right now. I really appreciate the information from everyone. I wish there was more. I'm going to print out as much of this as I can find to show to my dr. She has me on the mag-oxide instead of the mag-citrate, saying that my levels indicated that would be better. What do you do when you are in pain? Do you take anything or just suffer through it? I was taking ibuprofen since breaking my foot 4 weeks ago and found out that it is a definite no-no. So i'm off that and just taking tylenol but if there is an extra vitamin or something I can add I would rather do that. I know it's early in the game and it will tke quite a while to get my potassium and magnesium up to a good level, the dr. said it could be up to a year before I start feeling like my old self, I'm not looking forward to waiting that long. I'm glad you are feeling better at 6 months. That gives me hope that it might be sooner for me too. If you think of anything else you could tell me I will check back. Thanks.
Patti
I am seeing a kidney dr. My regular dr. was stumped, she couldn't figure it out but knew something wasn't right. So she sent me to a kidney dr after about 6 months of trying.
I am at a really low point but trying to be positive about the situation. At least I know I'm not crazy. I am a small business owner and under stress all the time, thought the heart palps were just stress and all the muscle aches and feeling awful was due to over work overweight and getting older, I just turned 48. I'm worried that my two children could have this, I also have a 3 year old grandson. I told all of my family over the weekend so that my sister and her kids can get tested. I still need to talk to my brother. Our mother has been battling kidney disease for the last couple of years, she is in end stage kidney failure and is now on dialysis 3 times a week. So all of it is pretty scary right now. I really appreciate the information from everyone. I wish there was more. I'm going to print out as much of this as I can find to show to my dr. She has me on the mag-oxide instead of the mag-citrate, saying that my levels indicated that would be better. What do you do when you are in pain? Do you take anything or just suffer through it? I was taking ibuprofen since breaking my foot 4 weeks ago and found out that it is a definite no-no. So i'm off that and just taking tylenol but if there is an extra vitamin or something I can add I would rather do that. I know it's early in the game and it will tke quite a while to get my potassium and magnesium up to a good level, the dr. said it could be up to a year before I start feeling like my old self, I'm not looking forward to waiting that long. I'm glad you are feeling better at 6 months. That gives me hope that it might be sooner for me too. If you think of anything else you could tell me I will check back. Thanks.
Patti
tired47
05-25-2009, 09:44 PM
Plash561,
Hi! I was on this site because the drs. thought I had Gitelman's.. but I do not. I have some similar symptoms.. heart palps, tachycardia, muscle aches( which are now better). I have high urine ouput of magnesium.. but they say its just normal for my body since I have low normal mag levels. I take mag cirtrate to help my heart issues because mag oxide caused diarrhea.
I went to Cleveland Clinic and the drs. there made decision I do not have Gitelman's. I do not know how far that would be for you if feel you need more answers. I understand your fear for your children.. that is the first thing I thought of when they said I may have it.:confused:
My dad is also end stage renal disease . He has been on dialysis for 7 1/2 years. That is a really long time according to his drs...he is not a candiadate for kidney transplant due to CHF of heart. It has been a very up and down road but he is holding his own (after spending a week in ICU two weeks ago.) I hope your mom does well too. Take care and good luck to you.:angel:
Beth67 has been thru alot so she can reallly help you. And Beth, I am glad you are finally starting to feel better. Keep us posted on your progress.:wave:
Hi! I was on this site because the drs. thought I had Gitelman's.. but I do not. I have some similar symptoms.. heart palps, tachycardia, muscle aches( which are now better). I have high urine ouput of magnesium.. but they say its just normal for my body since I have low normal mag levels. I take mag cirtrate to help my heart issues because mag oxide caused diarrhea.
I went to Cleveland Clinic and the drs. there made decision I do not have Gitelman's. I do not know how far that would be for you if feel you need more answers. I understand your fear for your children.. that is the first thing I thought of when they said I may have it.:confused:
My dad is also end stage renal disease . He has been on dialysis for 7 1/2 years. That is a really long time according to his drs...he is not a candiadate for kidney transplant due to CHF of heart. It has been a very up and down road but he is holding his own (after spending a week in ICU two weeks ago.) I hope your mom does well too. Take care and good luck to you.:angel:
Beth67 has been thru alot so she can reallly help you. And Beth, I am glad you are finally starting to feel better. Keep us posted on your progress.:wave:
beth67
05-25-2009, 10:08 PM
Patti, I am in pain still. I think I developed fibromyalgia because of all this. I've read a couple of books and they talk about how fibro sometimes develops due to an injury or some type of other shock to the system such as vitamin deficiencies and stress. I hurt my back two years ago around the same time I started to notice the weakness. I thought the other symptoms were due to being overweight and my back injury but when it never really got better I started to think something else must be wrong with me because it's not like me to not get over an injury. Can't believe it took so long to get a diagnosis. All the time I was waiting for someone to figure out what was wrong with me I was losing potassium which is very important to the muscles. My whole system had a huge shock and I think I was the perfect storm for fibromyalgia. I got a book by Dr. Titelbaum called From Fatigued to Fantastic which is about chronic fatigue and fibromyalgia. I bought some better quality vitamins and I'm following his protocol in his book. He says fibro is a lack of energy in the mitocondria in the cells and it's kind of like a system failure. He talks about getting blood tests to see if your blood chemistry is o.k. because that can perpetuate the fibro. Goodness knows mine was out of whack for a long time. I'm experimenting with a diet that takes out all pro inflammatory foods that cause pain and inflammation. I'm pretty much eating like the caveman diet. I've taken out of my diet sugar, flour and other grains, milk, cheese, soy, caffeine, chocolate, potatoes. I buy organic everything when possible and eat a lot of wild caught salmon. After three weeks I started to see a real improvement. Started going for longer walks and longer shopping trips. Then I went a little crazy for a couple of days and ate pasta, cheese, milk and chocolate. The next day I woke up in pain and had a headache and the foggy headedness was back. Obviously something I was eating was perpetuating my pain. I'm going back to the cleaned out diet but I've been cheating and kicking myself about it because I know how much better I could feel. I don't like to take ibuprofen because it really doesn't take away the pain and I get really fuzzy headed and my ears ring. I stick to tylenol which barely takes the pain away. I find if I stay concious of my posture and don't overwork myself and do gentle physical therapy that helps the best. I also joined weight watchers. I need to lose about 35 lbs. I know that extra weight is just more work on my muscles that have gone through a hard time. It's slow going but at least I'm losing a little each week. Also, I've started a striked bedtime routine which is a challenge but I really do feel better when I get a good nights sleep. It will get better. I know a few months ago I was in a very dark place mentally and physically. I never really let my family know how bad I felt. I was a very good actress. From what I read I knew it would eventually get better and I just tried to hold it together the best I could. What was the alternative. I'm 42 and have two teenagers. I had to hold it together. It is starting to get better so now I can see the light at the end of the tunnel.
Beth
Beth
Beth
Beth
plash561
05-26-2009, 12:20 AM
tired47, I live near St. Louis. My Mom isn't a candidate either she's 80. But she is willing to do what she needs to do to stick around. My kidney dr. seems very sure this is what I have. My mag levels are very low along with the potassium. I've known for a year that the potassium is low but have been on potassium meds for it to raise it. It didn't work and I kind of just let it go thinking alot of it was in my head. I didn't know about the magnesium until last week. Having a business to run I have always been the last one I worried about. The symptoms have just kicked my rear end a lot in the last 6 months so now I am paying for not paying myself enough attention. That is what I have to work on now, putting myself in the right perspective. I'm trying to get as much info as possible. The reply's I have gotten from you and Beth help, I hope others will send information and suggestions too. It's nice to know there are people who understand and are willing to listen. And that any info is better than not knowing. I can't believe the lack of information available on the web, it's ridiculous. Thanks so much to you and Beth.
plash561
05-26-2009, 12:30 AM
Beth,
I get the whole actress thing, I never wanted to whine about how awful I feel. I always thought it was whining if I did it, never when anyone else did. That double standard thing. I was wondering about the things I should or shouldn't be eating. I have a very busy schedule with work and with the lack of energy it makes it hard to think about anything besides work, let alone working on a new diet. The dr. told me to add the potassium staples to my diet more, potatoes, salt, tomatoes.....but I would like to hear more about what works for people going through this. Sounds like you have really been through it with a lot of health issues, but you sound like a tough one to me. If you think of anything else please post it. I really appreciate it.
Patti
I get the whole actress thing, I never wanted to whine about how awful I feel. I always thought it was whining if I did it, never when anyone else did. That double standard thing. I was wondering about the things I should or shouldn't be eating. I have a very busy schedule with work and with the lack of energy it makes it hard to think about anything besides work, let alone working on a new diet. The dr. told me to add the potassium staples to my diet more, potatoes, salt, tomatoes.....but I would like to hear more about what works for people going through this. Sounds like you have really been through it with a lot of health issues, but you sound like a tough one to me. If you think of anything else please post it. I really appreciate it.
Patti
beth67
05-26-2009, 07:38 PM
I actually stay away from anything from the nightshade family of plants because in some people they can put you in more pain. They include tomatoes, potatoes, eggplants and I'm forgetting one or two. I think bell peppers are one of them. My doctor said not to restrict salt. I eat alot of it and still my sodium is low on my blood tests. I love celtic sea salt. I've kinda gotten a little radical with the whole paleo caveman diet. I've read most of the books about it at the library. The diet is supposed to boost energy and help you maintain a healthy weight without feeling hungry. Basically I don't have any simple high glycemix carbs. I'm feeling pretty bad today though. Over the weekend I stayed up really late two nights in a row and to try and boost my energy up over the next few days I had strong coffee and chocolate. Not very cave woman of me. I'm really paying for it now. I feel so lethargic. I'm trying to have three servings of a fruit and 4 of a vegetable a day and having nuts and seeds with my fruit to snack on. If I have just an apple alone I'm so hungry an hour later. I really need the fat to sustain me. Tired and I have chatted a lot. She knows I like to experiment with vitamins and diet to hopefully find something that will turn me into wonder woman. I really think in the end it all boils down to the potassium problem and I'll eventually be better again.
This is really off subject but there is the most beautiful thunderhead developing over the mountains I can see out the window. I love thunderstorms! They run a predictable pattern here in the summer. Sunny and warm during the day and then around 4pm we get the thunderstorm and rain then it clears up for a beautiful evening.
Beth
This is really off subject but there is the most beautiful thunderhead developing over the mountains I can see out the window. I love thunderstorms! They run a predictable pattern here in the summer. Sunny and warm during the day and then around 4pm we get the thunderstorm and rain then it clears up for a beautiful evening.
Beth
plash561
05-26-2009, 11:41 PM
Beth,
Off subject is just fine when you paint a picture like that. We have friends who live in the foothills of Denver when we visit I love watching the storms come through and the sunsets, it's beautiful. Here in the flatlands of Illinois have some good sunsets but nothing like the mountains. I've never been to Alaska, we have a friend that lives somewhere near Ketchikan ( I think that's how it's spelled). Going back on subject, I know the potassium is a real issue for me, what kind of vitamins are you using? I added sea salt to my diet more a while back. Did you notice at the beginning that you were swelling in your hands and feet more? That is what I have noticed the most in the last few months. Last summer I was out in the heat all day with our family. It was very hot, I drank alot of fluids and my ankles & hands really swelled. I thought it was the potassium that caused it, I hadn't been on it very long maybe a couple of days, but the dr. said no. The kidney dr. said it was probably because of the Gitelman's. Right now I'm having trouble wearing my wedding rings. My ankles & hands swell all the time. I was hoping the spironolactone would get more fluid off me but it's not doing a whole lot. I thought I would urinate more too, but I'm not. Does it work better for you? I'm taking 50 mg in the morning and 400 mg of mag-oxide twice a day. With your snacks do you think it's the fat or the protein you need more? My husband is borderline diabetic and he needs protein with a snack or he gets hungry and his blood sugar drops, it gives him a headache, makes him feel dizzy. If he eats some nuts or cheese he does much better. Peanut butter works too. No sugary stuff. I have to find a formula that works for me, diet & meds, something I can stick to. The nightshade plants you spoke of, I love all but eggplant, so I'm hoping that's not a factor for me. Thanks for the info. I'll take all you got!!!
Off subject is just fine when you paint a picture like that. We have friends who live in the foothills of Denver when we visit I love watching the storms come through and the sunsets, it's beautiful. Here in the flatlands of Illinois have some good sunsets but nothing like the mountains. I've never been to Alaska, we have a friend that lives somewhere near Ketchikan ( I think that's how it's spelled). Going back on subject, I know the potassium is a real issue for me, what kind of vitamins are you using? I added sea salt to my diet more a while back. Did you notice at the beginning that you were swelling in your hands and feet more? That is what I have noticed the most in the last few months. Last summer I was out in the heat all day with our family. It was very hot, I drank alot of fluids and my ankles & hands really swelled. I thought it was the potassium that caused it, I hadn't been on it very long maybe a couple of days, but the dr. said no. The kidney dr. said it was probably because of the Gitelman's. Right now I'm having trouble wearing my wedding rings. My ankles & hands swell all the time. I was hoping the spironolactone would get more fluid off me but it's not doing a whole lot. I thought I would urinate more too, but I'm not. Does it work better for you? I'm taking 50 mg in the morning and 400 mg of mag-oxide twice a day. With your snacks do you think it's the fat or the protein you need more? My husband is borderline diabetic and he needs protein with a snack or he gets hungry and his blood sugar drops, it gives him a headache, makes him feel dizzy. If he eats some nuts or cheese he does much better. Peanut butter works too. No sugary stuff. I have to find a formula that works for me, diet & meds, something I can stick to. The nightshade plants you spoke of, I love all but eggplant, so I'm hoping that's not a factor for me. Thanks for the info. I'll take all you got!!!
beth67
05-27-2009, 02:08 AM
I've been to Ketchican. Creek street is fun and interesting. The board walk is elevated above a creek that is influenced by the tides and kayakers go up it. The creek is surrounded on both sides by gold rush style shops. Really cute.
I like Dr. Oz's books. In one of them he referenced fibromyalgia and Dr. Titelbaum so I ordered his book and I'm following his vitamin protocol. Very well written book. Explained alot of what by body is going through. It really perked my interest when he wrote about fibromyalgia being triggered by vitamin deficiencies. He doesn't make money off the vitamins but recommends companies that have a better quality of them. Dr. Titelbaum has a good web site that sells the vitamins. They are a little expensive though. I take a vitamin powder, b complex, Co Q10, 3,000mg fish oil, iron with vitamin c ( my ferretin and saturation are pretty low which doesn't help anything), acetyl l carnitine, D-Ribose which helps energy production in the mitocondria, 1,000mg calcium (my calcium is below normal range), 3,000mg D (my D is at the extreme low end of the range), and probiotic pearls. I just recently started taking about 1,000 of malic acid which is supposed to be good for the fibro, and I also take 400mg of magnesium. I wish I didn't have to take all this stuff but I am starting to see an improvement in my energy. I don't know if its the kidney medication or the vitamins that is making me feel better but I don't want to stop the vitamins to find out just yet. Dr. Titelbaum says that it's not necessary to take all this stuff for the rest of your life, just until your system gets rebooted meaning the part of the cells that make energy for all body functions start to work properly again. Sleep is a big component of his program which I haven't got much of lately. I definetly feel worse when I don't sleep well.
I was having swelling problems but it has gone away. I asked the kidney doctors practitioner but she said it wasn't due to the kidney problem but I think it was. I never used to have swelling. I wonder if it has gone away due to the medicine since it seems things are starting to get better. I've noticed my intestines feel better. I used to get alot of discomfort. My bowel movements are better to. I was having a bad time in that department. Maybe it's the new diet I'm doing though with all the fruits and veggies. I didn't notice an increase in urine output. Kind of sad to think of all that good potassium being flushed down the toilet. Ew! that's kind of weird.
I understand about the diabetes thing. I have a 14 year old with type one diabetes. He has had it since the age of 4. I always try to make sure he has protein or fat with his meals and snacks to keep his levels more stable. Not always an easy thing to convince a teenager to do sometimes. He's going through his rebelious stage. Once in a while he will ask me questions about better care and actually listen to what I say. I think it's starting to sink in with him to start being on top of things a little better because his last urine test showed small amounts of protein. I told him it's a warning shot across the bow. He doesn't have to have kidney failure if he keeps his sugars in check. I sheltered him alot when he was little from the dark realities of what could go wrong but over the years I've slowly started to inform him of things. I just read a good book by Jack Challen called The Inflammation Syndrome which discusses diabetes, asthma and arthritis. Basically staying away from simple carbs is the best way to go. I sneak in alot of whole wheat in my muffins and pizza dough and even sneak in ground up flax seed in the muffins for some extra omega 3. They haven't caught on yet.
For my muscle pain I have finally found a good physical therapist that does strain counter strain techniques and myofassial release. Both are very gentle techniques. She has shown me muscle releases to do at home and it has really helped. My poor muscles not having enough potassium and calcium over the last few years are probably breathing a sigh of relief. I'm starting to notice an improvement with how I move my body abound. I'm not so rigid anymore.
If the spironolacton doesn't improve things with you your doctor may add the other potassium sparing diuretic amiloride. Are you getting regular blood tests to see if the spironolacton is working?
Beth
I like Dr. Oz's books. In one of them he referenced fibromyalgia and Dr. Titelbaum so I ordered his book and I'm following his vitamin protocol. Very well written book. Explained alot of what by body is going through. It really perked my interest when he wrote about fibromyalgia being triggered by vitamin deficiencies. He doesn't make money off the vitamins but recommends companies that have a better quality of them. Dr. Titelbaum has a good web site that sells the vitamins. They are a little expensive though. I take a vitamin powder, b complex, Co Q10, 3,000mg fish oil, iron with vitamin c ( my ferretin and saturation are pretty low which doesn't help anything), acetyl l carnitine, D-Ribose which helps energy production in the mitocondria, 1,000mg calcium (my calcium is below normal range), 3,000mg D (my D is at the extreme low end of the range), and probiotic pearls. I just recently started taking about 1,000 of malic acid which is supposed to be good for the fibro, and I also take 400mg of magnesium. I wish I didn't have to take all this stuff but I am starting to see an improvement in my energy. I don't know if its the kidney medication or the vitamins that is making me feel better but I don't want to stop the vitamins to find out just yet. Dr. Titelbaum says that it's not necessary to take all this stuff for the rest of your life, just until your system gets rebooted meaning the part of the cells that make energy for all body functions start to work properly again. Sleep is a big component of his program which I haven't got much of lately. I definetly feel worse when I don't sleep well.
I was having swelling problems but it has gone away. I asked the kidney doctors practitioner but she said it wasn't due to the kidney problem but I think it was. I never used to have swelling. I wonder if it has gone away due to the medicine since it seems things are starting to get better. I've noticed my intestines feel better. I used to get alot of discomfort. My bowel movements are better to. I was having a bad time in that department. Maybe it's the new diet I'm doing though with all the fruits and veggies. I didn't notice an increase in urine output. Kind of sad to think of all that good potassium being flushed down the toilet. Ew! that's kind of weird.
I understand about the diabetes thing. I have a 14 year old with type one diabetes. He has had it since the age of 4. I always try to make sure he has protein or fat with his meals and snacks to keep his levels more stable. Not always an easy thing to convince a teenager to do sometimes. He's going through his rebelious stage. Once in a while he will ask me questions about better care and actually listen to what I say. I think it's starting to sink in with him to start being on top of things a little better because his last urine test showed small amounts of protein. I told him it's a warning shot across the bow. He doesn't have to have kidney failure if he keeps his sugars in check. I sheltered him alot when he was little from the dark realities of what could go wrong but over the years I've slowly started to inform him of things. I just read a good book by Jack Challen called The Inflammation Syndrome which discusses diabetes, asthma and arthritis. Basically staying away from simple carbs is the best way to go. I sneak in alot of whole wheat in my muffins and pizza dough and even sneak in ground up flax seed in the muffins for some extra omega 3. They haven't caught on yet.
For my muscle pain I have finally found a good physical therapist that does strain counter strain techniques and myofassial release. Both are very gentle techniques. She has shown me muscle releases to do at home and it has really helped. My poor muscles not having enough potassium and calcium over the last few years are probably breathing a sigh of relief. I'm starting to notice an improvement with how I move my body abound. I'm not so rigid anymore.
If the spironolacton doesn't improve things with you your doctor may add the other potassium sparing diuretic amiloride. Are you getting regular blood tests to see if the spironolacton is working?
Beth
plash561
05-27-2009, 10:10 PM
Wow, that is a lot to take in. I'm going to look into the vitamins. Going down to the regular blood tests, I was just diagnosed last Wed the 20th so this is all very very new. I go tomorrow morning for the first round of blood work to see what the spironolactone and mag-oxide are doing. We'll see about that probably by the first of next week. I noticed that someone esle on here is taking the spironolactone and amiloride. Are you on both? My muscles have been going down hill for a while. Like I said before I really thought it was my weight and just getting older. I'm glad my regular dr and the dr actually listen and don't just blow me off. Otherwise who knows how long it would have taken to find out I had this, if ever. Sleep has been difficult for me for a while. We bought a business 6 years ago that I had been employed at for 7 years. I thought that because I worried so much about the business that it was effecting my sleep, I'm sure it contributed to it but now I realize it wasn't just stress. I take Ambien CR for help sleeping, I do well with it, it doesn't make me tired during the day. I also have sleep apnea and use a CPAP machine. So I have other issues also. I have never heard of the therapy strain counter strain techniques and myofassial release. I might have to inquire about that. I hurt so bad all the time, it's hard to get out of bed in the morning. Having the business is probably a blessing because it gives me a reason to have to get out of bed.
Try putting the flaxseed in chocolate chip cookies if you make them. My daughter does that for my grandson and he loves her cookies more than anything else's, she makes them with the whole wheat flour too. To tell you the truth I like them more than the one's I used to make.
What's the title of the book by Oz you think might help me the most?
Thanks again for writing back so much, it has helped me get through this more than you know.
Patti
Try putting the flaxseed in chocolate chip cookies if you make them. My daughter does that for my grandson and he loves her cookies more than anything else's, she makes them with the whole wheat flour too. To tell you the truth I like them more than the one's I used to make.
What's the title of the book by Oz you think might help me the most?
Thanks again for writing back so much, it has helped me get through this more than you know.
Patti
beth67
05-28-2009, 01:46 AM
I forgot you were just recently diagnosed. I started the spironolactone last October, had a blood test in December and since my potassium wasn't quite where the doctor wanted me he added the Amiloride. I take 50mg of Spironolactone and 10mg or Amiloride. I need to get my blood tested again. My doctor said it would take six months after getting the dose right and my blood levels getting higher before my muscles would start to get better and wouldn't be so weak. I also thought the way I felt was due to my weight but when I could hardly walk up the stairs with out extreme weakness in my thighs I knew something was really wrong. I've lost 25lbs in the last year and a half and I need to lose 30 more. The extra weight on my weak muscles can't be helping anything. I wonder if losing weight has been so hard because my chemistry is off. Also I've learned that good sleep is important to weight loss. A lot of chemical and hormonal stuff goes on at night which is important so if were not getting good sleep it kind of messes up the whole system. I was prescribed Ambien but I'm such a prescription chicken I'm afraid to take it. I wouldn't take the Kidney meds if I wasn't told that going on the way I was was just going to get worse and I didn't have the labs to prove how bad I was. I'm really going to try to get bad to the good bed hygiene system I was doing and I was starting to see an improvement in my energy during the day.
The two books I like by Dr. Oz and Dr. Roizen are You: On A Diet and You: staying young. I pull them out for reference a lot. They make eating sugar not so much fun anymore. I still cheat and eat it but not as much as I used to because they explain what happens to you when you do and now when I eat it I regret it because I know how bad it is for me. I need to get back on my anti inflammation diet because I was seeing real improvements with my pain on it.
Beth
The two books I like by Dr. Oz and Dr. Roizen are You: On A Diet and You: staying young. I pull them out for reference a lot. They make eating sugar not so much fun anymore. I still cheat and eat it but not as much as I used to because they explain what happens to you when you do and now when I eat it I regret it because I know how bad it is for me. I need to get back on my anti inflammation diet because I was seeing real improvements with my pain on it.
Beth
beth67
05-28-2009, 02:54 PM
I forgot to mention something else I'm doing for pain. It's trigger point therapy. I do it on myself. I got a book by Claire Davies called Trigger Point Therapy Handbook. What he said in his book really got me to thinking there was something really wrong with me. I started doing the therapy on my own about two years ago and I found a lot of trigger points. You are supposed to be able to get rid of these tender points after a couple of weeks. Mine never went away. I then took the time to really read the book. Before I was just skipping to the instructions for each tender area on my body. He talks about that if you have deficiencies in calcium, potassium, magnesium, and other electrolytes and vitamins that this can cause the trigger points to not go away easily if at all. That is when I pulled out the latest blood test at the time and really took a good look at it and thought this doesn't look right. I could agree with the doctors that things weren't horribly low but they were low. Some things at the very low range and some just below the normal range. That is what got me on a search for a doctor that would listen to me. Now with my blood getting a little bit more normal I'm finding that I can get rid of new trigger points within a few days. It has really helped me get out a lot of pain. It takes a lot of patience to read the instructions and really find these points but when you do it for a while it becomes second nature. I do trigger point therapy on my 12 year old who gets headaches and it works very well on him. Sometimes if we catch things early enough we can stop the headache from becoming a migraine. Another thing that Davies talks about in his book is that is your in pain, stop drinking coffee. It can just exacerbate things. Also coffee inhibits calcium absorbtion. It's acidic so for the body to balance it out it takes calcium from the bone to create a proper body ph. Anyways, it might be something that could work for you. I really hate taking pain pills because they make me feel so fuzzy headed and if I can stop and take notice of any new pains in my body and take the time to do the trigger point therapy I can stop a flare up. Wow, can I write some long posts. I could go on and on. I've read so much over the last two years I think I'm starting to drive my husband crazy with all my potassium, pain, diet, trigger point info. The first thing he usually hears when he gets home is "Hey, I was reading in this book that....and did you know....." At least I can come here and spew information. Hope you have a good day.
Beth
Beth
Sunshine008
05-28-2009, 03:00 PM
Hi everyone!
I have been away awhile, but should be here getting all the good tips from all of you!
Sounds like you two are making some great diet and life changes to help yourselves. Beth - so glad you are starting to feel better.
I'm having so many problems now, with joints...and muscles especially. I can barely make it up the stairs some days because my thigh muscles are so weak. I'm a bit overweight too, so I need to keep working on that. But, my potassium keeps going too low, so I take more supplements and then sometimes it goes too high now!! I live in Japan as an American expat with my husband and son and they don't have a doctor here that will keep testing me (or even understands what is going on). So I'm regulating it myself and I must be doing a terrible job because I'm doing much worse! LOL.
I have the symptoms, but they rarely catch it in the blood, or it's just slightly low. So I get brushed off. But the docs see that I'm going downhill with joints and muscles. Now my heart and lungs are getting into the act! No one really knows what to do. They told me the potassium problem is so rare they don't have any answers. Sure wish I could go to your doctor, Beth. What type of doctor is he...maybe I can find one like him.
Thanks for the trigger point info, Beth. I'm going to buy the book and try that! I had a trigger point massage (my first) two weeks ago, and I hurt every time he touched me! But, it also felt good so I'll go again. So does your doc think your muscles, incl. thigh muscles can get better? Mine were up and down and seemed to heal in between episodes. But now it's constant weakness and pain and I worry they won't come back. :(
By the way...they haven't figured out why I lose potassium. I don't have the disease you gals do (lucky me), but I have something they can't find. My 24 hr urine test was done twice and no potassium problem there. So, why do I have all the same symptoms as you girls, and off and on low potassium tests in the hospital when I get really bad? Where is it going out if not though my kidneys? Any ideas? I can tell you with 100 percent certainty that I feel like you all do...down to the very last symptoms.
Sorry for the long, rambling post. It's 3am here in Japan and I can't sleep because of the pain, twitching, etc. You're right though, sleep is so important!
Take good care,
Sunshine
I have been away awhile, but should be here getting all the good tips from all of you!
Sounds like you two are making some great diet and life changes to help yourselves. Beth - so glad you are starting to feel better.
I'm having so many problems now, with joints...and muscles especially. I can barely make it up the stairs some days because my thigh muscles are so weak. I'm a bit overweight too, so I need to keep working on that. But, my potassium keeps going too low, so I take more supplements and then sometimes it goes too high now!! I live in Japan as an American expat with my husband and son and they don't have a doctor here that will keep testing me (or even understands what is going on). So I'm regulating it myself and I must be doing a terrible job because I'm doing much worse! LOL.
I have the symptoms, but they rarely catch it in the blood, or it's just slightly low. So I get brushed off. But the docs see that I'm going downhill with joints and muscles. Now my heart and lungs are getting into the act! No one really knows what to do. They told me the potassium problem is so rare they don't have any answers. Sure wish I could go to your doctor, Beth. What type of doctor is he...maybe I can find one like him.
Thanks for the trigger point info, Beth. I'm going to buy the book and try that! I had a trigger point massage (my first) two weeks ago, and I hurt every time he touched me! But, it also felt good so I'll go again. So does your doc think your muscles, incl. thigh muscles can get better? Mine were up and down and seemed to heal in between episodes. But now it's constant weakness and pain and I worry they won't come back. :(
By the way...they haven't figured out why I lose potassium. I don't have the disease you gals do (lucky me), but I have something they can't find. My 24 hr urine test was done twice and no potassium problem there. So, why do I have all the same symptoms as you girls, and off and on low potassium tests in the hospital when I get really bad? Where is it going out if not though my kidneys? Any ideas? I can tell you with 100 percent certainty that I feel like you all do...down to the very last symptoms.
Sorry for the long, rambling post. It's 3am here in Japan and I can't sleep because of the pain, twitching, etc. You're right though, sleep is so important!
Take good care,
Sunshine
Sunshine008
05-28-2009, 03:33 PM
Had another question, ladies. I saw that you both mentioned sleep issues. Can potassium loss, or problems related cause insomnia? I never had problems sleeping until my muscle problems started getting so bad. And, here I am up again at 3:30 am after not sleeping much all week. I should be exhausted...and I am...but can't sleep. I fall asleep fine. But I wake up at 2 or 3 and feel like I just drank coffee. Is it just stress due to not knowing how to fix my body, or possibly caused by the chemical imbalance with electrolytes? Any insight on this would be very much appreciated. :)
:dizzy:
Sunshine
:dizzy:
Sunshine
plash561
05-28-2009, 08:10 PM
Sunshine,
I'm not sure about the corrulation between the potassium and sleep, it could be related I guess, that's a question I'm going to ask my dr. next time I go. I did read that the Gitleman's can make you have to go to the bathroom a lot at night, my mind rambles on and on at night, I can be exhausted and still not be able to sleep, that's why my regular dr. put me on the Ambien CR. Even with it I still have some nights when it's hard toget to sleep. My dr. is in Missouri which is just across the Mississippi river from us in Illinois. Beth seems to know alot about all of this, I'm going to look for some of the books this weekend. Right now I am waiting to see what my bloodwork shows, I just went this morning. I need to see what the meds so far are doing for me before I try a lot of extras. We'll see. Good Luck.
Patti
I'm not sure about the corrulation between the potassium and sleep, it could be related I guess, that's a question I'm going to ask my dr. next time I go. I did read that the Gitleman's can make you have to go to the bathroom a lot at night, my mind rambles on and on at night, I can be exhausted and still not be able to sleep, that's why my regular dr. put me on the Ambien CR. Even with it I still have some nights when it's hard toget to sleep. My dr. is in Missouri which is just across the Mississippi river from us in Illinois. Beth seems to know alot about all of this, I'm going to look for some of the books this weekend. Right now I am waiting to see what my bloodwork shows, I just went this morning. I need to see what the meds so far are doing for me before I try a lot of extras. We'll see. Good Luck.
Patti
beth67
05-28-2009, 11:21 PM
Hi Sunshine and Plash, I also had to go the bathroom a lot at night and I was thirsty all the time. It's getting better now. I also had problems with heart palpitations and labored breathing. It was really bad at times. I went to the emergency room two times before being diagnosed with Gitelman's because I thought I was having a heart attack. I would also shake really bad at times. I would put on two layers of clothes and get under an electric blanket and still be shaking. I was shaking like I was cold but I really wasn't cold I just thought getting under the blankets was what I was supposed to do. When I still shook under the blankets and everyone else was walking around just fine that was another moment where I thought this is really wrong. At the e.r. room both times the doctors said I was just stressed out and having an anxiety attack and wanted to prescribe sedatives which I didn't take because I knew that wasn't the cause. I also used to get the twitching like you Sunshine but that is gone now. I really hated that. My arms and legs would suddenly jerk day or night. Do you guy's get the tingling around the mouth? My doctor said I got that due to a bicarbinate imbalance. I hardly get that anymore. Must mean things are getting better. It would drive me crazy at times. Felt like I needed to scratch all around my mouth. I still get it occasionally and maybe it means my kidney's and the medication are playing tug of war with my potassium and perhaps I'm excreting a little more potassium at that time and it may be throwing my chemistry off a little. As long as it isn't all the time like before I'm o.k. with it.
Sunshine, I was referred by my general dr. to a nephrologist which is a kidney dr. If you could see one he or she may be able to give you more info. Mine looked at the same tests other doctors looked at and saw something different showing that something was wrong with me.
Boy am I tired. My husband has been snoring so bad. I really want him to get a sleep study done. I spent half the night telling him to stop snoring or listening to the gurgle sound in the back of his mouth waiting for him to start breathing properly. He is going to sleep in another room tonight. I really worry about him. What if he starts breathing wrong and I'm not there to tell him to start breathing. Goodness I really don't need this worry. I'm so tired today I broke my no caffeine rule. I had a strong cup and four ibuprofen to get rid of a headache. It worked and I was able to run some errands but I knew what would happen later which is right now and I'm crashing. To add insult upon injury I had some chocolate too. I really need to sleep so I don't keep grabbing quick fixes during the day. Talk to you later.
Beth
Sunshine, I was referred by my general dr. to a nephrologist which is a kidney dr. If you could see one he or she may be able to give you more info. Mine looked at the same tests other doctors looked at and saw something different showing that something was wrong with me.
Boy am I tired. My husband has been snoring so bad. I really want him to get a sleep study done. I spent half the night telling him to stop snoring or listening to the gurgle sound in the back of his mouth waiting for him to start breathing properly. He is going to sleep in another room tonight. I really worry about him. What if he starts breathing wrong and I'm not there to tell him to start breathing. Goodness I really don't need this worry. I'm so tired today I broke my no caffeine rule. I had a strong cup and four ibuprofen to get rid of a headache. It worked and I was able to run some errands but I knew what would happen later which is right now and I'm crashing. To add insult upon injury I had some chocolate too. I really need to sleep so I don't keep grabbing quick fixes during the day. Talk to you later.
Beth
Sunshine008
05-28-2009, 11:54 PM
Thanks for the info, Plash and Beth.
Question: Anyone have problems with the contrast solution on an MRI? I never have before, but had a MRI of head yesterday with contract and my heart flipped out. Super rapid heartbeat and erratic beats. I actually had to squeeze the button to stop the MRI. Thought I was having a heart attack. Never had that issue with MRI contrast before, but then again, never had contrast when I felt my potassium was low. My HR was erratic yesterday before the test, so I'm guessing the contrast exacerbated it. Anyone experience this?
About the shaking...I couldn't believe I was reading that about you. I get that too off an on. My body just shakes, but I'm not cold. My husband can feel it if he puts his hands between my knees/thighs. The docs told me the same thing...anxiety...and gave me meds I didn't take because I knew that wasn't the problem. Amazing that I have so many (all?) of the symptoms you two have, but my kidney function looks normal. They did send me to a nephrologist last year who did a blood panel and a kidney ultrasound and said both were normal. I asked why I'm so much better when on Spiro if I don't have kidney issues, and he said he didn't know. Without Spiro I end up in the ER in bad shape. He released me and I was back to square one. I know for a fact that when I get really bad with muscles, joints, heart, etc, that I start to feel better if I add Potassium to my spironolactone (25mg daily). It works. But then I go to high after a few days/weeks and get the same bad symptoms, plus buzzing in arms and legs so I know it's too high. So I know have a potassium problem and we just don't know why. I only had 2 24 hr urine tests. Could it be that they weren't done at the time I had a problem? Seems my problem and levels fluctuate a lot. Maybe they just didn't catch it? Did you do many urine tests in a row to catch it? Or did it show up on the first one?
I'm at wits end and with the shortness of breath, erratic heart beat and overall feeling of weakness, I'm about ready to book an expensive ticket to fly home to the States from Japan to check myself into an emergency room. It doesn't work the same way here. Hospitals are a bit scary and the doctors are not nearly as trained as the US. But, I'm scared to get to the US after a 13 hour flight with my 4 yr old and have them say the blood work is normal and say they don't know what to do. Certainly they'll be able to see how much I've progressed in terms of weakness, etc. Anyway...nice to have support here. Thanks ladies. When I'm feeling a bit better, I'll tell you a little about how neat Japan is and how much we love it here and why. My hubby is a corporate patent lawyer and his company sent us here for 3 years. Interesting life...just wish I felt better so I could really enjoy it.
Question: Anyone have problems with the contrast solution on an MRI? I never have before, but had a MRI of head yesterday with contract and my heart flipped out. Super rapid heartbeat and erratic beats. I actually had to squeeze the button to stop the MRI. Thought I was having a heart attack. Never had that issue with MRI contrast before, but then again, never had contrast when I felt my potassium was low. My HR was erratic yesterday before the test, so I'm guessing the contrast exacerbated it. Anyone experience this?
About the shaking...I couldn't believe I was reading that about you. I get that too off an on. My body just shakes, but I'm not cold. My husband can feel it if he puts his hands between my knees/thighs. The docs told me the same thing...anxiety...and gave me meds I didn't take because I knew that wasn't the problem. Amazing that I have so many (all?) of the symptoms you two have, but my kidney function looks normal. They did send me to a nephrologist last year who did a blood panel and a kidney ultrasound and said both were normal. I asked why I'm so much better when on Spiro if I don't have kidney issues, and he said he didn't know. Without Spiro I end up in the ER in bad shape. He released me and I was back to square one. I know for a fact that when I get really bad with muscles, joints, heart, etc, that I start to feel better if I add Potassium to my spironolactone (25mg daily). It works. But then I go to high after a few days/weeks and get the same bad symptoms, plus buzzing in arms and legs so I know it's too high. So I know have a potassium problem and we just don't know why. I only had 2 24 hr urine tests. Could it be that they weren't done at the time I had a problem? Seems my problem and levels fluctuate a lot. Maybe they just didn't catch it? Did you do many urine tests in a row to catch it? Or did it show up on the first one?
I'm at wits end and with the shortness of breath, erratic heart beat and overall feeling of weakness, I'm about ready to book an expensive ticket to fly home to the States from Japan to check myself into an emergency room. It doesn't work the same way here. Hospitals are a bit scary and the doctors are not nearly as trained as the US. But, I'm scared to get to the US after a 13 hour flight with my 4 yr old and have them say the blood work is normal and say they don't know what to do. Certainly they'll be able to see how much I've progressed in terms of weakness, etc. Anyway...nice to have support here. Thanks ladies. When I'm feeling a bit better, I'll tell you a little about how neat Japan is and how much we love it here and why. My hubby is a corporate patent lawyer and his company sent us here for 3 years. Interesting life...just wish I felt better so I could really enjoy it.
plash561
05-28-2009, 11:56 PM
Beth,
I get the tingling around my mouth, it feels like something is tickling it. When I wear my CPAP mask at night it drives me crazy because it feels like something is in there. When I don't have the tingling I sleep like a baby. Your husband needs to get a sleep study. My husband put it off until I told him I was really worried that he was stopping breathing and I wouldn't be able to hear it because I was sleeping so well. He went and now he's sleeping like a baby and I'm not listening to his snoring anymore. If your husband has any questions let me know, it's a breeze. Around here we go to the Holiday Inn, that's where the Sleep Study Dept. is for our hospital.
As far as the shaking I haven't noticed it as extreme as you are having it, hopefully I won't. Stay away from the ibuprofen, my dr. said absolutely no ibuprofen at all. It makes you retain fluid and feel like crap.
The emergency room is almost the worst place to go unless you are having a heart attack or something, they want you in and out. A local hospital emergency room just about killed my Mom, but they were enjoying their party, it was around Valentines day. Sunshine, finding a good Nephrologist is key. I'm going to the same one that saved my Mom's life, I trust her and she doesn't treat me like an idiot or hypocondriac. There has to be someone over there that can help you. I hope you find someone soon. Beth, seriously tell your husband sleep studies are soooo worth it.
By the way, I'm still at work and wish I could be in my bed, I hope you all get some sleep tonight, hopefully I'll be able to go home soon. Take care.
Patti
I get the tingling around my mouth, it feels like something is tickling it. When I wear my CPAP mask at night it drives me crazy because it feels like something is in there. When I don't have the tingling I sleep like a baby. Your husband needs to get a sleep study. My husband put it off until I told him I was really worried that he was stopping breathing and I wouldn't be able to hear it because I was sleeping so well. He went and now he's sleeping like a baby and I'm not listening to his snoring anymore. If your husband has any questions let me know, it's a breeze. Around here we go to the Holiday Inn, that's where the Sleep Study Dept. is for our hospital.
As far as the shaking I haven't noticed it as extreme as you are having it, hopefully I won't. Stay away from the ibuprofen, my dr. said absolutely no ibuprofen at all. It makes you retain fluid and feel like crap.
The emergency room is almost the worst place to go unless you are having a heart attack or something, they want you in and out. A local hospital emergency room just about killed my Mom, but they were enjoying their party, it was around Valentines day. Sunshine, finding a good Nephrologist is key. I'm going to the same one that saved my Mom's life, I trust her and she doesn't treat me like an idiot or hypocondriac. There has to be someone over there that can help you. I hope you find someone soon. Beth, seriously tell your husband sleep studies are soooo worth it.
By the way, I'm still at work and wish I could be in my bed, I hope you all get some sleep tonight, hopefully I'll be able to go home soon. Take care.
Patti
Sunshine008
05-29-2009, 12:01 AM
Beth - I second Patty's recommendation, get your hubby into a sleep clinic. I need to do the same and will do that this summer when we go back to the states. He snores and I think he stops breathing, just like yours. If you can convince him, do it. Letting it go can damage his heart in the long run.
Patty - Interesting about the Ibuprofin because I have to take it almost daily 2-3 times per week due to pain and inflammation in my joints. Without it I can barely move. Maybe it's making things worse! Thanks for the tip. I'll try to find an alternative.
Sunshine
Patty - Interesting about the Ibuprofin because I have to take it almost daily 2-3 times per week due to pain and inflammation in my joints. Without it I can barely move. Maybe it's making things worse! Thanks for the tip. I'll try to find an alternative.
Sunshine
plash561
05-29-2009, 12:39 AM
Sunshine,
I don't have abnormal kidney function either. The way the dr. explained it to me is that your kidneys are fine it's the lines going to your kidneys that have a problem, it's a chromosome that is out of whack and tells your body not to hold onto the potassium, magnesium and sodium. So all of it goes out your urine and out of your body instead of being absorbed into your body where alot of it needs to go. That's why we don't have to limit salt. My dr. told me that if I have muscle cramps I could add one of my potassium that was prescribed, I believe it is around 50mg. But not to add it on a regular basis unless I was having a lot of charlie horses in my calves or whatever. I broke my foot a few weeks ago and have been experiencing cramping in my foot, wow does that hurt. Beth do you have any more to add here? I am not an expert, very much a newbie to this. I'm just trying to take it all in. The weakness, heart palps and shortness of breath are driving me nuts. Sometimes I feel like I'm 90 years old. We live in a split level home and the steps are really hard right now, especially with the broken foot. I'm in an Aircast which is lighter than the old fashioned ones but still difficult. I have to sit for a few minutes when I get up to the top just to get any farther in the house. I feel like such a whimp.
I'd love to hear about Japan and your 4 year old. I have 3 year old and 2 year old grandsons-love them to pieces.
We'll get through this, hang in there.
Patti
I don't have abnormal kidney function either. The way the dr. explained it to me is that your kidneys are fine it's the lines going to your kidneys that have a problem, it's a chromosome that is out of whack and tells your body not to hold onto the potassium, magnesium and sodium. So all of it goes out your urine and out of your body instead of being absorbed into your body where alot of it needs to go. That's why we don't have to limit salt. My dr. told me that if I have muscle cramps I could add one of my potassium that was prescribed, I believe it is around 50mg. But not to add it on a regular basis unless I was having a lot of charlie horses in my calves or whatever. I broke my foot a few weeks ago and have been experiencing cramping in my foot, wow does that hurt. Beth do you have any more to add here? I am not an expert, very much a newbie to this. I'm just trying to take it all in. The weakness, heart palps and shortness of breath are driving me nuts. Sometimes I feel like I'm 90 years old. We live in a split level home and the steps are really hard right now, especially with the broken foot. I'm in an Aircast which is lighter than the old fashioned ones but still difficult. I have to sit for a few minutes when I get up to the top just to get any farther in the house. I feel like such a whimp.
I'd love to hear about Japan and your 4 year old. I have 3 year old and 2 year old grandsons-love them to pieces.
We'll get through this, hang in there.
Patti
plash561
05-29-2009, 02:37 AM
Sunshine,
My dr. was really stressing no NSAIDS, she suggested tylenol, but to try and limit it too because it can cause liver problems. All NSAIDS are not recommended for anyone with any kidney conditions, I knew this with my mom but went brain dead when it came to myself. I had been taking the Ibuprofen for my knee pain and a neuroma in my foot for the past year and a half. I had no idea that it was one of the things that was contributing to my muscle aches and pains. I stopped taking it last week so it's kind of too soon to notice a huge difference. I have used the tylenol 3 or 4 times in the last week and it seems to do just as well as the ibuprofen. Try it and see if it works for you. I read Beth's post on the trigger points, I'm going to look into that for pain too. It's nice being able to get and give information back and forth on here, I'm looking forward to checking on here everyday. Thanks Ladies.
Patti
My dr. was really stressing no NSAIDS, she suggested tylenol, but to try and limit it too because it can cause liver problems. All NSAIDS are not recommended for anyone with any kidney conditions, I knew this with my mom but went brain dead when it came to myself. I had been taking the Ibuprofen for my knee pain and a neuroma in my foot for the past year and a half. I had no idea that it was one of the things that was contributing to my muscle aches and pains. I stopped taking it last week so it's kind of too soon to notice a huge difference. I have used the tylenol 3 or 4 times in the last week and it seems to do just as well as the ibuprofen. Try it and see if it works for you. I read Beth's post on the trigger points, I'm going to look into that for pain too. It's nice being able to get and give information back and forth on here, I'm looking forward to checking on here everyday. Thanks Ladies.
Patti
plash561
05-29-2009, 02:56 AM
Beth,
the Ambien I take is the CR, it doesn't have as many side effects as the regular Ambien, you might be surprised how much it helps. I know if you look at what time I'm typing this you'll say "yeah that's working real good for her at almost 1 am", I just can't wind down tonight, I didn't get home from the shop until about 11pm, so it takes me a little while to be able to go to bed. Tomorrow will be a long day for sure. Take care.
Patti
the Ambien I take is the CR, it doesn't have as many side effects as the regular Ambien, you might be surprised how much it helps. I know if you look at what time I'm typing this you'll say "yeah that's working real good for her at almost 1 am", I just can't wind down tonight, I didn't get home from the shop until about 11pm, so it takes me a little while to be able to go to bed. Tomorrow will be a long day for sure. Take care.
Patti
DBailey
05-29-2009, 12:51 PM
I also need help. My husband was diagnoised with Gitelman syndrome in 1995 and was medicially discharged from the USMC because of it. We married last November, so I am new to this life of Gitelman. I would appreciate any advice you can give a spouse on how to survive while living with a man who bucks his potassium pills whenever he can. He avoids discussing the issue, and often tried to cover it up. I have done my research and I know and recognize the symptoms so I covertly suppliment his diet. During these VERY HOT Texas summers, he heads directly downhill. I would appreciate any advice you might have on how to help him fight this battle!!!
beth67
05-30-2009, 03:47 PM
Hello all, DBailey, glad you found us. Sorry to hear about your husband. I'm sure it's frustrating. I was talking to my husband last night about the last two years and he had a little bit of a break down. I guess he felt it was ok to have one now that I'm getting better. He said it has been really stressful working all day then working on his other job on the weekends, shopping for me, taking me to appointments, and dealing with the kids more. I haven't been able to work for the last two years due to the Gitelman's but mostly because I hurt my back. When you say he doesn't take his potassium pill do you mean the medication like the Spironolactone or the Amiloride which is usually given to Gitelman people or do you mean potassium supplements? Was he diagnosed with a urine test showing large potassium loss? Supplementing his diet with vitamins or foods high in potassium isn't going to do anything without the medication. He could eat a whole bunch of bananas and it wouldn't matter because he needs the medication to stop his kidneys from letting too much potassium leave his body.
Patti, I know what you mean like feeling like a little old lady. I remember walking around really slow and carefully. Part of it was due to the potassium but also recovering from the back injury. I'm just now feeling a more flowing freedom in my body. I know the ibuprofen isn't good. I gave myself an ulcer about 6 years ago taking too much on an empty stomach when I had the flu. I was reading that it can cause all kinds of problems like leaky gut syndrome which affects the stomach wall and lets in incompletely digested proteins into the bloodstream where it can cause an inflammation reaction. Supposedly elderly people with heart conditions should be really careful because it can exacerbate their condition. In the Inflammation Syndrome book I'm reading it says that anti-inflammatory drugs like ibuprofen actually speed up the breakdown of joint cartilage. The author of the book says that it's ironic that people take these meds to decrease arthritic pain but it actually speeds up the disease process. Supposedly acetaminophen does the same thing.
I've noticed and even my physical therapist noticed inflammation at my si joint yesturday where it was starting to decrease. I didn't tell her that I've been very naughty lately and have been eating alot of inflammatory foods like coffee, sugar, white flour, potatoes and dairy. When I was on the anti inflammation diet I saw an improvement with my inflammation and my joint pain in my hands, knees and feet weren't so bad. Starting today I'm going back on the diet. I'll let you all know how I'm doing in a week. That's how long it takes to start to see an improvement of symptoms.
I've also been reading how magnesium is so important. It is involved in 300 biochemical processes in the body. It's also a mild muscle relaxant and is good to take at night for restless legs and night time cramping. Us with Gitelman's have low magnesium so it's no wonder we feel bad since it's so important. Sunshine I wonder if yours is low even though you don't have giteman's but still have low potassium. I wonder how and if the two have a connection. More to research. Magnesium also helps to prevent insulin resistance in diabetes and people low in magnesium are usually over weight according to Dr. Teitelbaum in his book From Fatigued To Fantastic and just being overweight releases inflammatory chemicals which is bad for your organs and pain. He recommends magnesium glycinate. It is supposedly absorbed better. I read somewhere on these boards there was a better absorbed magnesium. I can't remember if it was the glycinate. I think it was Tired47 that was talking about it. I usually chat with her on the fibromyalgia board. She has a potassium problem as well. Well here I go again with my long rants. Hope you all have a nice day. Even though I'm a bit achy from my physical therapy I'm going to try and get out today. Had a lot of rain last night and now the air is nice and crisp and good for us asthmatics because now the pollen count is low. On top of having the gitelmans I have asthma, migraines (which are controlled now with diet, another rant I could go on) and thyroid cancer which I'm doing fine with. Had my fourth body scan and everything came out clean. I also have a son with type one diabetes and a rare form of ventricular tachycardia called Bellhalsen's syndrome and I have another son with allergies and a deviated septum which causes problems with his allergies and he gets migraines as well. So, if anyone needs information in regards to any of our illnesses I'm happy to dish out information. Talk to you later.
Beth
Patti, I know what you mean like feeling like a little old lady. I remember walking around really slow and carefully. Part of it was due to the potassium but also recovering from the back injury. I'm just now feeling a more flowing freedom in my body. I know the ibuprofen isn't good. I gave myself an ulcer about 6 years ago taking too much on an empty stomach when I had the flu. I was reading that it can cause all kinds of problems like leaky gut syndrome which affects the stomach wall and lets in incompletely digested proteins into the bloodstream where it can cause an inflammation reaction. Supposedly elderly people with heart conditions should be really careful because it can exacerbate their condition. In the Inflammation Syndrome book I'm reading it says that anti-inflammatory drugs like ibuprofen actually speed up the breakdown of joint cartilage. The author of the book says that it's ironic that people take these meds to decrease arthritic pain but it actually speeds up the disease process. Supposedly acetaminophen does the same thing.
I've noticed and even my physical therapist noticed inflammation at my si joint yesturday where it was starting to decrease. I didn't tell her that I've been very naughty lately and have been eating alot of inflammatory foods like coffee, sugar, white flour, potatoes and dairy. When I was on the anti inflammation diet I saw an improvement with my inflammation and my joint pain in my hands, knees and feet weren't so bad. Starting today I'm going back on the diet. I'll let you all know how I'm doing in a week. That's how long it takes to start to see an improvement of symptoms.
I've also been reading how magnesium is so important. It is involved in 300 biochemical processes in the body. It's also a mild muscle relaxant and is good to take at night for restless legs and night time cramping. Us with Gitelman's have low magnesium so it's no wonder we feel bad since it's so important. Sunshine I wonder if yours is low even though you don't have giteman's but still have low potassium. I wonder how and if the two have a connection. More to research. Magnesium also helps to prevent insulin resistance in diabetes and people low in magnesium are usually over weight according to Dr. Teitelbaum in his book From Fatigued To Fantastic and just being overweight releases inflammatory chemicals which is bad for your organs and pain. He recommends magnesium glycinate. It is supposedly absorbed better. I read somewhere on these boards there was a better absorbed magnesium. I can't remember if it was the glycinate. I think it was Tired47 that was talking about it. I usually chat with her on the fibromyalgia board. She has a potassium problem as well. Well here I go again with my long rants. Hope you all have a nice day. Even though I'm a bit achy from my physical therapy I'm going to try and get out today. Had a lot of rain last night and now the air is nice and crisp and good for us asthmatics because now the pollen count is low. On top of having the gitelmans I have asthma, migraines (which are controlled now with diet, another rant I could go on) and thyroid cancer which I'm doing fine with. Had my fourth body scan and everything came out clean. I also have a son with type one diabetes and a rare form of ventricular tachycardia called Bellhalsen's syndrome and I have another son with allergies and a deviated septum which causes problems with his allergies and he gets migraines as well. So, if anyone needs information in regards to any of our illnesses I'm happy to dish out information. Talk to you later.
Beth
tired47
05-30-2009, 10:48 PM
Hi All!! I have been following your posts and hope to hear soon you are all improving. It is a wealth of knowledge from these boards.
Sunshine,
I know how you feel. I have had low potassium on several testings.. they thought I had Gitelman's or something similar. I actually flew to Mayo Clinic in Ohio to be told no, which is a relief. I have a huge output of magnesium ( found by 24 hour urine), my mag levels are low- mid normal so the drs said it is just me....
I watch these posts with great interest hoping to shed some light on my situtation. My muscle spasms have decreased greatly.. but I still have heart issues, muscle weakness, terrible insomnia, ect. I am on atenolol to control heart rate and chest pain. And like Beth , I had 1/2 thyroid removed ( not cancer though). I am starting to think the thyroid plus hormones issues ( I am perimenopausal) is what is causing all this havoc with my body.
I am trying naturopathic/homeopathic meds to help.
Beth,
I read your posts because our paths are so similar. I am on a restricted diet- no sugar, no processed foods, supposely no dairy ( the hard part). I found it does help my heart rate and anxiety somewhat.
I also read every book- only I am into hormones, natural meds.. and my poor husband has to listen to things like, "Do you know low progesterone can cause heart issues?" He has learned to nod and smile and pretend to be interested.
There is a great book on Magensium... forget the author. I actually lent mine out and didn't get it back . It is a small paperback and talks about all the things magnesium does for the body and how most people are magnesium deficient from not eating properly and soil depletion, ect., plus all the symptoms of mag deficiency.
I am also a great fan of Dr. Teitelbaum... I wish I could go see him.. not even sure if he sees pts now.
Dbailey, I am in hot Texas too... I hate this summer heat -it really exasperates my symptoms.. I stay inside alot.
Sunshine, I have a friend also stationed in Japan. She loves it there.
Best of luck to you all!! I will be watching and hoping to hear progress from you all.
:angel:
Sunshine,
I know how you feel. I have had low potassium on several testings.. they thought I had Gitelman's or something similar. I actually flew to Mayo Clinic in Ohio to be told no, which is a relief. I have a huge output of magnesium ( found by 24 hour urine), my mag levels are low- mid normal so the drs said it is just me....
I watch these posts with great interest hoping to shed some light on my situtation. My muscle spasms have decreased greatly.. but I still have heart issues, muscle weakness, terrible insomnia, ect. I am on atenolol to control heart rate and chest pain. And like Beth , I had 1/2 thyroid removed ( not cancer though). I am starting to think the thyroid plus hormones issues ( I am perimenopausal) is what is causing all this havoc with my body.
I am trying naturopathic/homeopathic meds to help.
Beth,
I read your posts because our paths are so similar. I am on a restricted diet- no sugar, no processed foods, supposely no dairy ( the hard part). I found it does help my heart rate and anxiety somewhat.
I also read every book- only I am into hormones, natural meds.. and my poor husband has to listen to things like, "Do you know low progesterone can cause heart issues?" He has learned to nod and smile and pretend to be interested.
There is a great book on Magensium... forget the author. I actually lent mine out and didn't get it back . It is a small paperback and talks about all the things magnesium does for the body and how most people are magnesium deficient from not eating properly and soil depletion, ect., plus all the symptoms of mag deficiency.
I am also a great fan of Dr. Teitelbaum... I wish I could go see him.. not even sure if he sees pts now.
Dbailey, I am in hot Texas too... I hate this summer heat -it really exasperates my symptoms.. I stay inside alot.
Sunshine, I have a friend also stationed in Japan. She loves it there.
Best of luck to you all!! I will be watching and hoping to hear progress from you all.
:angel:
plash561
06-03-2009, 12:34 AM
Beth or anyone,
I've been on the spironolactone and mag-oxide for almost 2 weeks now, I'm feeling really weird, kind of detached, dizzy more than usual and just all over weak & listless. I know these are all symptoms I've been feeling for a while but the last few days it seems worse. Did anyone else feel like this when they first started the meds? I don't really know if I'm supposed to be doing anything different other than more fluids, not decreasing sodium, no ibuprofen.....is there anything else anyone can tell me right now? I just really feel awful. Thanks for listening.
Patti
I've been on the spironolactone and mag-oxide for almost 2 weeks now, I'm feeling really weird, kind of detached, dizzy more than usual and just all over weak & listless. I know these are all symptoms I've been feeling for a while but the last few days it seems worse. Did anyone else feel like this when they first started the meds? I don't really know if I'm supposed to be doing anything different other than more fluids, not decreasing sodium, no ibuprofen.....is there anything else anyone can tell me right now? I just really feel awful. Thanks for listening.
Patti
beth67
06-03-2009, 04:58 PM
I'm sorry your feeling so bad. I continued to feel bad for quite awhile after starting the spironolactone. I remember calling the doctors office after a month and telling them I still didn't feel right. They reminded me that it can take up to six months after getting the dose right to start to feel better. I complained to them about the dizziness and achiness and they said that the muscle weakness could be due to the low potassium but not the achiness and fuzzy headedness and that I probably had fibromyalgia. I disagreed with them. According do some of the medical papers I read from hospitals online people with low potassium can have all kinds of symptoms. The case study of one patient said that he admitted himself because of mental problems that he had never had a history of. I can't remember the details of the paper but basically he said his mind wasn't working right. After all I've read about low potassium it's no wonder it affects the head. I'm sure low potassium can cause dizziness and confusion. If it affected my heart so much which is responsible for pumping blood throughout my body then why wouldn't it affect my head making me feel weird. I'm three months out now since the doctor added the amiloride. I'm still not to my six month mark of having my levels stable. Hang in there. It's going to get better. My doctor actually said that I shouldn't drink a lot because it dilutes the electrolytes. He said that when I get tingling around the mouth to have something salty since my sodium is low which I believe is due to the diuretics. Actually my sodium was low even before the diuretics. I read somewhere that low potassium can make you thirsty. I was thirsty all the time before starting the diuretics. It was an overwhelming thirst. I would gulp down two glasses of water at a time. I was worried I had diabetes so I used my son's blood glucose kit but my sugar was fine.
I'm actually having a bad time right now. I've been in a migraine rebound cycle for about five days. I had a headache last Saturday and I had a lot to do so I committed the ultimate headache trigger no no looking for a quick fix and had a strong cup of coffee along with four ibuprofen. Ya, I know, bad. The next day the headache was back even worse and even though I knew better I did the coffee ibuprofen thing again now I'm paying for it with a withdrawal headache. I had another cup yesterday but at half the caffeine and I did half caffeine today and I have a headache but not bad enough for ibuprofen. Hopefully tapering off the coffee slowly will work. I got myself into this my having triggers last Friday my eating a lot of nuts. I should have known better. I was actually feeling pretty good last Friday and when I get like that I get cocky and forget to do the right things. When you feel good sometimes you forget how bad things can be. Wow, this is kind of depressing. On a happy note there is a Robin hopping around the front yard and the other is in the bird bath splashing water all over the place scaring off the little dark eyed juncos and if I'm lucky I'll see the bald eagle that has been flying low over our house lately. He's been going over to the lake nearby and I suspect he is stealing eggs from the arctic tern's nests. Not sure if that is exactly what he is doing but whatever it is it is really making the terns mad and they chase him away in the direction of our house. He's an eagle for goodness sakes. What is he doing running away from terns. Doesn't he know he's our national symbol of strength.
Have a good day,
Beth
I'm actually having a bad time right now. I've been in a migraine rebound cycle for about five days. I had a headache last Saturday and I had a lot to do so I committed the ultimate headache trigger no no looking for a quick fix and had a strong cup of coffee along with four ibuprofen. Ya, I know, bad. The next day the headache was back even worse and even though I knew better I did the coffee ibuprofen thing again now I'm paying for it with a withdrawal headache. I had another cup yesterday but at half the caffeine and I did half caffeine today and I have a headache but not bad enough for ibuprofen. Hopefully tapering off the coffee slowly will work. I got myself into this my having triggers last Friday my eating a lot of nuts. I should have known better. I was actually feeling pretty good last Friday and when I get like that I get cocky and forget to do the right things. When you feel good sometimes you forget how bad things can be. Wow, this is kind of depressing. On a happy note there is a Robin hopping around the front yard and the other is in the bird bath splashing water all over the place scaring off the little dark eyed juncos and if I'm lucky I'll see the bald eagle that has been flying low over our house lately. He's been going over to the lake nearby and I suspect he is stealing eggs from the arctic tern's nests. Not sure if that is exactly what he is doing but whatever it is it is really making the terns mad and they chase him away in the direction of our house. He's an eagle for goodness sakes. What is he doing running away from terns. Doesn't he know he's our national symbol of strength.
Have a good day,
Beth
plash561
06-03-2009, 11:41 PM
Beth,
I'm so glad that I found this board. Being able to get some answers is comforting. I'm just struggling so bad, I just want to crawl into bed and pull the covers over my head. My dr. told me that the low potassium does cause me to ache all over, if your muscles don't have the potassium and magnesium it causes the achiness. I wish that the information we get was more consistent. How do we know what to listen to? If this syndrome, disease or whatever it is can cause temporary paralysis why couldn't it cause muscular pain too? Sorry I'm on a pain rant. I know that the last 2 months hasn't helped me with this, this is the busiest time at our business and I've been working long hours, eating out alot and just not getting very good sleep with the broken foot. It's just been a little overwhelming and I can't exactly just stop everything when it's my business. I'm just whining. You talk about the caffeine, my dr. told me not to worry so much about the caffeine but I drink more iced tea than coffe, I might have a cup of coffee every couple of weeks and I kind of watch it anyway with my sleep problems. But I have a couple of friends that have to stay away from caffeine because of migraines so I understand what you're talking about.
Are the eagles around your house all year? I live very near Alton, Illinois, we have eagle watching in the winter months It's a real racket. People pay to go on tours but all they need to do is go down by the river and sit at the park and they're all over the place for free. My daughter lives off the "Great River Road" near Grafton, Illinois, it goes right along the river for quite a few miles and the eagles are everywhere in the winter, in the spring and fall it's the pelicans. She gets so frustrated going to and from work because an eagle flies over and people just slam on their brakes and pull over without warning, there have been quite a few accidents because of it. She thinks they are beautiful and great to watch but gets quite aggravated with the people part.
Well it's been along day, I'm going to try to go to bed early. Thanks for replying. I hope you feel better with the headaches.
take care.
Patti
I'm so glad that I found this board. Being able to get some answers is comforting. I'm just struggling so bad, I just want to crawl into bed and pull the covers over my head. My dr. told me that the low potassium does cause me to ache all over, if your muscles don't have the potassium and magnesium it causes the achiness. I wish that the information we get was more consistent. How do we know what to listen to? If this syndrome, disease or whatever it is can cause temporary paralysis why couldn't it cause muscular pain too? Sorry I'm on a pain rant. I know that the last 2 months hasn't helped me with this, this is the busiest time at our business and I've been working long hours, eating out alot and just not getting very good sleep with the broken foot. It's just been a little overwhelming and I can't exactly just stop everything when it's my business. I'm just whining. You talk about the caffeine, my dr. told me not to worry so much about the caffeine but I drink more iced tea than coffe, I might have a cup of coffee every couple of weeks and I kind of watch it anyway with my sleep problems. But I have a couple of friends that have to stay away from caffeine because of migraines so I understand what you're talking about.
Are the eagles around your house all year? I live very near Alton, Illinois, we have eagle watching in the winter months It's a real racket. People pay to go on tours but all they need to do is go down by the river and sit at the park and they're all over the place for free. My daughter lives off the "Great River Road" near Grafton, Illinois, it goes right along the river for quite a few miles and the eagles are everywhere in the winter, in the spring and fall it's the pelicans. She gets so frustrated going to and from work because an eagle flies over and people just slam on their brakes and pull over without warning, there have been quite a few accidents because of it. She thinks they are beautiful and great to watch but gets quite aggravated with the people part.
Well it's been along day, I'm going to try to go to bed early. Thanks for replying. I hope you feel better with the headaches.
take care.
Patti
beth67
06-04-2009, 10:28 PM
Patti, I'm amazed you can work. When I was at my worst I remember trying to put dishes away and I'd get so absolutely weak and have to collapse on the bed. I think if I did have a job I would also somehow find the energy. Your right about the pain thing and potassium. I've read several sources talking about how important magnesium and potassium are for the muscles so it seems a no brainer that it would cause achiness when you don't have enough. I'll have one problem and my kidney doctor, endocrinologist and regular doctor will all have differing opinions and ways to treat something. I know they are all very educated people but if they can't all come to the same conclusion about something it makes me wonder who to believe. I think that is why I do so much research because I just want the truth or at least the closest thing to it. I sure am craving the coffee today but haven't had any because I know it's just the addiction talking. I don't have a headache today so maybe I'm done with the vicious cycle. I just need to stay away from it. Our eagles migrate to southern Alaska and some go out of state in the winter. Maybe the ones in your area are from Alaska. We used to have a pair in a huge nest near our lake but their nest blew down last winter. They haven't repaired it and their nowhere to be seen. I thought they would rebuild in the same area. Maybe the one flying over my house is one of the pairs and they just built their nest in another part of the neighborhood. Maybe I should start walking in that direction and see if I can find them.
Tired and Sunshine how are you doing?
Beth
Tired and Sunshine how are you doing?
Beth
plash561
06-07-2009, 01:52 PM
Well, like I said before it's probably good that I have the business to make me get up everyday. My kids are grown, one works for me, my son son he's great and is still at home, I don't know what I'd do without him. I have 2 great daughters and 2 wonderful grandsons also. One daughter lives close with her 3 year oldand her husband and one daughter lives in New Jersey with her 2 year old and husband. I try to keep a positive attitude with all of them, they have enough to deal with in their own lives without worrying about Mom too. My daughter and grandson that live close got tested recently and they don't have low potassium and the dr. thinks they'll be clear, I was so happy to hear it. My son says he doesn't want to get tested right now, he'll wait-he's 21 and bullet proof so he thinks, I'm staying on him until he gives in. The daughter in Jersey doesn't have to worry about it, she's actually my stepdaughter by marriage (but still my kid). You know I've been thinking about this a lot lately and didn't realize all the signs as I've gotten older that confirms this diagnosis. When I was 19 and had my daughter the hospital put me on potassium during labor because it was so low and they were concerned about my bloodpressure being so low. Everytime I've had surgery the dr. has given me intrevenous potassium before surgery. I've never been able to be very athletic, my muscles never allow me to have much stamina, no aerobics, I've never been able to handle the heat, I've always gotten dizzy easliy. I'm really down this week and don't want to burden everyone around me with all of this. I'm thinking about starting a journal just to have a place to go when I'm feeling awful and not put it all on everyone around me. Feeling this bad really sucks. I'm trying really hard to be strong it's just not easy sometimes. I'm sure you understand what I'm talking about. Sorry for going on and on and complaining. Thanks again for listening.
Patti
Patti
tired47
06-08-2009, 12:10 AM
Hi All! I have been reading all your posts.. just a busy time for me. My son is graduating from high school and relatives are here for almost 3 weeks. It is great to have them, but work too. I need my afternoon nap or I can't function
well. :dizzy:
As for me I am working with naturopath... and one minute I think I am feeling better. The next day.. not so much as my kids say.
I have the muscles spasms again, not as intense but enough to keep me awake at night ( along with the insomnia). I am swimming here in hot Texas, which helped last summer, but it actually seems to make my muscles cramp worse lately. I try stretching afterwards but not helping much.
So I am trying to increase my potassium because it does seem to help somewhat and staying out of heat and hot sun... can not take it at all!!!
Beth, I joke with my hubby we must find a "summer" home where is it cooler...?? Alaska???
I was given 5thp. by naturopath. It seems to help relax me, take away stress/anxiety, but if I take it during day I am SOOOOOOO sleepy... even a tiny amount. I also think it makes me have slight headache/ spacey feeling.. but I am trying to go with the program she has created. I noticed I have less chest pain, tachycardia, "thumping/palps" since starting 5 htp.
So for now, extra potassium ( by food/drink), and 5 htp for sleep.
Hang in there all, this is frustrating for all. We will share and hopefully help each other.
I will keep reading and share more later when my company leaves in a few weeks.:)
Take care, keep posting.:wave:
well. :dizzy:
As for me I am working with naturopath... and one minute I think I am feeling better. The next day.. not so much as my kids say.
I have the muscles spasms again, not as intense but enough to keep me awake at night ( along with the insomnia). I am swimming here in hot Texas, which helped last summer, but it actually seems to make my muscles cramp worse lately. I try stretching afterwards but not helping much.
So I am trying to increase my potassium because it does seem to help somewhat and staying out of heat and hot sun... can not take it at all!!!
Beth, I joke with my hubby we must find a "summer" home where is it cooler...?? Alaska???
I was given 5thp. by naturopath. It seems to help relax me, take away stress/anxiety, but if I take it during day I am SOOOOOOO sleepy... even a tiny amount. I also think it makes me have slight headache/ spacey feeling.. but I am trying to go with the program she has created. I noticed I have less chest pain, tachycardia, "thumping/palps" since starting 5 htp.
So for now, extra potassium ( by food/drink), and 5 htp for sleep.
Hang in there all, this is frustrating for all. We will share and hopefully help each other.
I will keep reading and share more later when my company leaves in a few weeks.:)
Take care, keep posting.:wave:
beth67
06-08-2009, 04:45 PM
Hello all, I know what you guys mean about the heat. I used to live in southern California and the summers were terrible. In Alaska the hottest I've ever felt it was 82. Usually the days are in the mid 60's to 70. I'm so used to the coolness now that if it gets to 75 I'm beat. I've always had a hard time with the heat and could never understand people who revel in it. I have a brother that purposely goes to a reservoir in the desert in the middle of summer where the average temperature is 110 and sometimes it can get to 115 and rides around in his boat all day. I don't get it. Lately I've been getting some of my old symptoms from before I was diagnosed with Gitelman's like the tingling around the mouth and the heart beat thumps with the dizziness, and more muscle aches. I've been bad about taking my medication at the same time every day so maybe that's doing it.
I was taking a supplement from Dr. Tietelbaum's site for sleep because I'm doing his protocol for fibromyalgia. It's his sleep formula with valerian and other herbs and works pretty good. My problem is that it stays light all the time now so it's hard to go to sleep at 10pm when the sun is still shining and then I sleep in too late so I think that is throwing off my sleep cycle. I got a large piece of paper and I'm trying to make a schedule for waking, taking medication and supplements and doing my physical therapy. Now I just need to stick with it.
I'm going to throw this out there and see if anyone knows what could be causing this. I've had ringing in my ears since 2000 which only used to bother me at night now I hear it all the time. Now the ringing has been joined my a rumbling sound that sounds like a world war 2 bomber. It comes and goes. This started about a year ago. Kind of coincided with around the time of my Gitelman's diagnosis. I do have a thyroid problem, on 3 medications, and my hormones are off so I think this could be contributing to the problem. Any ideas? Anyone else get this?
Beth
I was taking a supplement from Dr. Tietelbaum's site for sleep because I'm doing his protocol for fibromyalgia. It's his sleep formula with valerian and other herbs and works pretty good. My problem is that it stays light all the time now so it's hard to go to sleep at 10pm when the sun is still shining and then I sleep in too late so I think that is throwing off my sleep cycle. I got a large piece of paper and I'm trying to make a schedule for waking, taking medication and supplements and doing my physical therapy. Now I just need to stick with it.
I'm going to throw this out there and see if anyone knows what could be causing this. I've had ringing in my ears since 2000 which only used to bother me at night now I hear it all the time. Now the ringing has been joined my a rumbling sound that sounds like a world war 2 bomber. It comes and goes. This started about a year ago. Kind of coincided with around the time of my Gitelman's diagnosis. I do have a thyroid problem, on 3 medications, and my hormones are off so I think this could be contributing to the problem. Any ideas? Anyone else get this?
Beth
plash561
06-09-2009, 12:56 AM
Beth,
I have not experienced the ringing in my ears like that, I think that's one you need to talk to the dr. about. The combination of meds may be doing it. The pharmacist might be able to help. Have you had your hearing checked lately? My mom went through some ringing in the ears and found out that one of her meds and the fact she had a wad of ear wax in both ears was causing some problems. Once they got her on a different med and cleaned out her ears she did great.
Boy I don't know how you sleep with the sun shining at night, I have to have it pitch dark in my room in order to sleep. I even have to cover my alarm clock with something so I don't see the light. By the way hormones really mess with sleep too. I have been dealing with menopause for a few years now and I know it has affected my sleep. I had a hysterectomy in 1994. Now I know the Gitelmans is involved with the sleep issue too, but I have friends who are dealing with hormones and having sleep issues. I'm hoping you and I both feel better soon. I feel like all I do is think about this and whine. My husband said tonight when I broke down about it that I'm being surprisingly tough and I'm not whining. At least no one else is noticing my whining but me. I hope I can keep that charade up. Take care Beth, maybe someone else can give you an answer.
Patti
I have not experienced the ringing in my ears like that, I think that's one you need to talk to the dr. about. The combination of meds may be doing it. The pharmacist might be able to help. Have you had your hearing checked lately? My mom went through some ringing in the ears and found out that one of her meds and the fact she had a wad of ear wax in both ears was causing some problems. Once they got her on a different med and cleaned out her ears she did great.
Boy I don't know how you sleep with the sun shining at night, I have to have it pitch dark in my room in order to sleep. I even have to cover my alarm clock with something so I don't see the light. By the way hormones really mess with sleep too. I have been dealing with menopause for a few years now and I know it has affected my sleep. I had a hysterectomy in 1994. Now I know the Gitelmans is involved with the sleep issue too, but I have friends who are dealing with hormones and having sleep issues. I'm hoping you and I both feel better soon. I feel like all I do is think about this and whine. My husband said tonight when I broke down about it that I'm being surprisingly tough and I'm not whining. At least no one else is noticing my whining but me. I hope I can keep that charade up. Take care Beth, maybe someone else can give you an answer.
Patti
beth67
06-14-2009, 01:42 AM
I just wanted to give you guys a little warning. I've been starting to feel better so I've been trying to do more. I've now made it to the mail box. First time in about two years. It's only a quarter of a mile away and on a slight incline but for those of us with low potassium it could be Mt. Everist. I've only been on the diuretics for three months with the proper dose and I know I'm not back to normal but I just couldn't help myself and I did some gardening. Bad idea especially since I have no self control. I love gardening. I used to spend the entire day in the summer in the garden. No exaggeration. It's been very frustrating these last two summers not to be able to be outside chopping down trees and working the veggie patch. I sat on the ground the other day to protect my back and then started to ferociously hack at the grass that has invaded my flower bed. Big mistake. Even though I am doing better I really had no business overdoing it like that. Thursday morning I literally woke up screaming in so much pain in my neck and shoulder blades I couldn't lift myself out of bed on my own. My husband had to lift me out. I've spent that two nights sleeping sitting up. It's been awful. I haven't been able to type until today and it is now starting to hurt. So just a warning. If you start to feel better please take it slow. I've learned my lesson. I'll stick to walking to the mailbox for now. Hope you are all doing ok.
Beth
Beth
tired47
06-14-2009, 11:49 AM
Beth67,
I hope you feel better soon. Yes, we get SO excited when we feel better and actually want to do things... and then we do to much!!!:dizzy:
Take it easy and slow and you will get back to where you were... hopefully quickly.
I was feeling so much better with heart palps and sleeping and then my son graduated high school- so inlaws are here for 2 1/2 weeks, graduation parties every night for us with the parents of his friends. I am exhausted physically and mentally and not sleeping/stressed out/ muscle spasms,heart palps, ect....
I am leaving Tuesday to visit my parents back in Pa. My Dad is not doing well. with his dialysis and everyone says I need to see him..
I dread the trip ... it will be mentally and physically exhausting. My mother has alteiheimers... so that will be a challenge too.
Say some prayers for me to get thru this... and I for you all here.
I just keep thinking.. two steps forward, and hopefully only one back... but sometimes it feels like 3 or 4 backwards... you all know the feeling.
Needless to say, a good thing is I wll get out of this Texas heat, has been well over 100 degress every day now and it totally drains me if I go outside for 2 minutes. So I stay indoors most of the time... and I love summer but NOT here!!!
Good luck to all, Beth,slow down and take it easy!!!!:)
I hope you feel better soon. Yes, we get SO excited when we feel better and actually want to do things... and then we do to much!!!:dizzy:
Take it easy and slow and you will get back to where you were... hopefully quickly.
I was feeling so much better with heart palps and sleeping and then my son graduated high school- so inlaws are here for 2 1/2 weeks, graduation parties every night for us with the parents of his friends. I am exhausted physically and mentally and not sleeping/stressed out/ muscle spasms,heart palps, ect....
I am leaving Tuesday to visit my parents back in Pa. My Dad is not doing well. with his dialysis and everyone says I need to see him..
I dread the trip ... it will be mentally and physically exhausting. My mother has alteiheimers... so that will be a challenge too.
Say some prayers for me to get thru this... and I for you all here.
I just keep thinking.. two steps forward, and hopefully only one back... but sometimes it feels like 3 or 4 backwards... you all know the feeling.
Needless to say, a good thing is I wll get out of this Texas heat, has been well over 100 degress every day now and it totally drains me if I go outside for 2 minutes. So I stay indoors most of the time... and I love summer but NOT here!!!
Good luck to all, Beth,slow down and take it easy!!!!:)
plash561
06-14-2009, 03:15 PM
Beth,
thanks for the warning, I was wondering if it might not be a bad idea for me to try to get on my Total Gym and start trying to get some strength back. I've been worried about not doing anything. I guess I need to stay put for now and heal. I have really felt worse in the last few weeks, At first I thought some of it was just reacting to the diagnosis and that it was in my head, but I don't think so anymore, I really think it is just getting worse before the meds get regulated. So I am trying to just do nothing once I get home from work. It just feels weird being so exhausted without necessarily being sleepy tired. It also is driving me crazy that my husband is having to do so much for me, he works so hard at work too, then has to come home and do all the other stuff by himself. There is no way I could work in the garden even for an hour or two right now. I went out in front of our house last night trying to pull some weeds and just water the flowers that my daughter planted for me. I used to work in the yard all the time. One of our daughter's friends drove by last year and asked her if we still lived here because the yard hadn't been kept up like I always had it. It was a little embarassing, but what could I do? I haven't had the energy to do any yard work for several years, of course I thought it was just the hours I put in at work, but my friends could all still do extra things. I've really had a lot of dizzy spells with blurred vision this week, did you have a lot of that too?
Well I hope now that you are feeling better, you'll be able to get back to normal soon. Good you learned your lesson too, sorry it's been the hard way. Take care.
Patti
thanks for the warning, I was wondering if it might not be a bad idea for me to try to get on my Total Gym and start trying to get some strength back. I've been worried about not doing anything. I guess I need to stay put for now and heal. I have really felt worse in the last few weeks, At first I thought some of it was just reacting to the diagnosis and that it was in my head, but I don't think so anymore, I really think it is just getting worse before the meds get regulated. So I am trying to just do nothing once I get home from work. It just feels weird being so exhausted without necessarily being sleepy tired. It also is driving me crazy that my husband is having to do so much for me, he works so hard at work too, then has to come home and do all the other stuff by himself. There is no way I could work in the garden even for an hour or two right now. I went out in front of our house last night trying to pull some weeds and just water the flowers that my daughter planted for me. I used to work in the yard all the time. One of our daughter's friends drove by last year and asked her if we still lived here because the yard hadn't been kept up like I always had it. It was a little embarassing, but what could I do? I haven't had the energy to do any yard work for several years, of course I thought it was just the hours I put in at work, but my friends could all still do extra things. I've really had a lot of dizzy spells with blurred vision this week, did you have a lot of that too?
Well I hope now that you are feeling better, you'll be able to get back to normal soon. Good you learned your lesson too, sorry it's been the hard way. Take care.
Patti
beth67
06-15-2009, 12:15 AM
Patti, I felt horrible for a couple of months after diagnosis and it didn't help that I wasn't taking enough diuretics. My husband and kids had to do alot for me. It was frustrating. I'm a do it myself kind of person and I've always relied on my body to be there for me so it has been a real adjustment. I just have to hope that I'll be back to normal again some day. I also had dizziness and blurred vision. Also stationary objects looked like they were wiggeling. It was really weird. The dizziness is getting better but still there and the blurry vision is getting better. I have more to say but I'm in so much pain right now. My shoulders feel like someone has hit me with a two by four. I'll check in in a few days.
Beth
Beth
plash561
06-15-2009, 02:09 PM
Beth,
thanks for posting so soon. I wish you felt better. Don't worry about getting back on here for a while, if you feel bad you need to rest. The stationary objects wiggling is something I am experiencing too. Have the dr.'s said anything about blood sugar levels to anyone on here? I got a call this morning that my sugar was up to 169 when I got blood work done on the 28th. It wasn't a fasting bloodwork so I'm hoping that it was just a fluke, going back tomorrow for more. I go to my regular dr. on the 30th so I'm going to have to fill her in on the diagnosis. With my bloodwork coming back with the sugar so high-she wants me to exercise, yeah right.
Take it easy Beth. Write when you can.
Tired47 if you have any ideas on this let me know. Also good luck with your trip, I'll be praying. Parents aging is not an easy thing, when you add in the dialysis and alzheimers it just makes it that much harder, I'll be praying for them too. Good luck with the in-laws, that's just a whole other set of paryers. Take care.
Patti
thanks for posting so soon. I wish you felt better. Don't worry about getting back on here for a while, if you feel bad you need to rest. The stationary objects wiggling is something I am experiencing too. Have the dr.'s said anything about blood sugar levels to anyone on here? I got a call this morning that my sugar was up to 169 when I got blood work done on the 28th. It wasn't a fasting bloodwork so I'm hoping that it was just a fluke, going back tomorrow for more. I go to my regular dr. on the 30th so I'm going to have to fill her in on the diagnosis. With my bloodwork coming back with the sugar so high-she wants me to exercise, yeah right.
Take it easy Beth. Write when you can.
Tired47 if you have any ideas on this let me know. Also good luck with your trip, I'll be praying. Parents aging is not an easy thing, when you add in the dialysis and alzheimers it just makes it that much harder, I'll be praying for them too. Good luck with the in-laws, that's just a whole other set of paryers. Take care.
Patti
sam56
06-20-2009, 08:27 PM
Hi everyone. I too have Gitelmans. It has changed about every part of my life, not in a good way. I take 120MEQ's ( 6 20meq's) a day, Amiloride, a prenatal vitamin?, Flexeril for the muscle spasms.
So glad to find this thread. It seems I'm taking so much more Potassium than all of you who have posted?
I'd appreciate any response.
Sally
So glad to find this thread. It seems I'm taking so much more Potassium than all of you who have posted?
I'd appreciate any response.
Sally
plash561
06-21-2009, 11:24 PM
Sally,
is Flexeril like Ibuprofen? Anything that is like Ibuprofen should be avoided because it causes swelling. I'm on Spironolactone which is like the Amiloride. They are both potassium sparing diuretics not a pre-natel vitamin. Becasue of the Spironolactone my dr. discontinued the extra potassium. I don't know if maybe the Amiloride doesn't work as well and that makes you need the supplement. I'm very new to this disease too, I was just diagnosed on May 20th, so it's been a month. I've has symptoms for a long time but the diagnosis is new. I've gotten a lot of advise and insight on this board. Hope it helps you too.
Patti
is Flexeril like Ibuprofen? Anything that is like Ibuprofen should be avoided because it causes swelling. I'm on Spironolactone which is like the Amiloride. They are both potassium sparing diuretics not a pre-natel vitamin. Becasue of the Spironolactone my dr. discontinued the extra potassium. I don't know if maybe the Amiloride doesn't work as well and that makes you need the supplement. I'm very new to this disease too, I was just diagnosed on May 20th, so it's been a month. I've has symptoms for a long time but the diagnosis is new. I've gotten a lot of advise and insight on this board. Hope it helps you too.
Patti
sam56
06-22-2009, 07:07 AM
Hi Patti,
Thanks for responding. I'm not sure about the Flexeril. I take it prn, just when the spasms are to much to tolerate. It does help. My doctor said the Amiloide was a much better drug than Spironolactone? I'm just frustrated! I was diagnosed in Jan.09'. Thought I was having a stroke. Tried to shake it off all day but just kept getting weaker and my hands and feet twisted up on the way to the ER. Was in 5 days for IV pot. therapy. Had nursing staff come in from other floors to "take a look at the miracle woman". I guess I should have been dead at where my pot. level was.
Enough of that. I'm searching for a specialist who is well informed on Gitelmans. I will go anywhere. I see you are from IL. too. I am from Champaign and go to Carle. I have the "best" kidney specialist here. I just keep going downhill....weakness...pain...my legs just somedays will not work. It wasn't this way in the beginning.
By the way, the pre-natal is for the blood work that came back lacking. I'm also taking Mag-Ox 1200mgs. a day. Nexium to allow me to keep all these pills down.
Would love to hear more about where you are right now. Thanks for hearing me out.
Sally
Thanks for responding. I'm not sure about the Flexeril. I take it prn, just when the spasms are to much to tolerate. It does help. My doctor said the Amiloide was a much better drug than Spironolactone? I'm just frustrated! I was diagnosed in Jan.09'. Thought I was having a stroke. Tried to shake it off all day but just kept getting weaker and my hands and feet twisted up on the way to the ER. Was in 5 days for IV pot. therapy. Had nursing staff come in from other floors to "take a look at the miracle woman". I guess I should have been dead at where my pot. level was.
Enough of that. I'm searching for a specialist who is well informed on Gitelmans. I will go anywhere. I see you are from IL. too. I am from Champaign and go to Carle. I have the "best" kidney specialist here. I just keep going downhill....weakness...pain...my legs just somedays will not work. It wasn't this way in the beginning.
By the way, the pre-natal is for the blood work that came back lacking. I'm also taking Mag-Ox 1200mgs. a day. Nexium to allow me to keep all these pills down.
Would love to hear more about where you are right now. Thanks for hearing me out.
Sally
Timber
06-22-2009, 11:39 AM
Sunshine, have your doctors considered hypokalemic periodic paralysis as an explanation for your low potassium and symptoms? They think that's what I have and I'm seeing a specialist in a few weeks.
beth67
06-22-2009, 03:16 PM
Hi Sally, glad you found us. Sorry your having a bad time. It took me several months to just start feeling slightly better. Still have bad days. What is MEQ's. I only know milligrams. I take 50mg Spironolactone and two 5mg Amiloride a day. My doctor didn't put me on extra magnesium even though it was a little low but starting today I'm going to start taking 1,000mg instead of the 450 I was taking. I was reading that you actually need more magnesium instead of calcium. If you take too much calcium it inhibits magnesium absorption. Eating sugar, caffeine and high amounts of animal protein also inhibits absorption of calcium and magnesium. Stress increases adrenal gland hormones and when these are too high it also inhibits absorption. In this book I was reading by Jack Challem called User's Guide to Nutritional Supplements, a great book which I highly recommend, he also talked about how medication for stomach acid and antacids decrease stomach acid too much then you can't absorb these nutrients. I have low calcium so I was taking 1,500mg a day thinking that would help and it hasn't so I'm going to try and take 500mg with 1,000mg of magnesium split up to two times a day. It goes against what I'm been taught by the dairy industry and the calcium pill commercials warning against osteoporosis but what he says in his book really makes sense. Americans have the highest calcium intake but also the highest osteoporosis. Doesn't make sense. I'm starting to think commercial interests are at work to make more money and not concerned about the science. For better calcium and magnesium absorption you should take it after a meal when you have a higher amount of stomach acid. If I take too many pills together I get really sick to my stomach and I was reaching for the antacids but now that I space my medication and put my vitamins in little cups and space it out through the day and have them with a small meal I feel a lot better.
Sally, your lucky that the hospital kept you. Four months before being diagnosed I had a frightening trip to the emergency room with spasms, palpitations, and really horrible loss of control of my limbs. The doctor said I was just anxious and needed to destress and wanted to give me happy pills which I didn't take. I kept searching until I found someone to help. You should of been feeling a little better by now if you started meds in January. Have you had regular blood tests to see how your potassium is doing and the other electrolytes?
Patti, how are you doing. Are you seeing any improvement?
Beth
Sally, your lucky that the hospital kept you. Four months before being diagnosed I had a frightening trip to the emergency room with spasms, palpitations, and really horrible loss of control of my limbs. The doctor said I was just anxious and needed to destress and wanted to give me happy pills which I didn't take. I kept searching until I found someone to help. You should of been feeling a little better by now if you started meds in January. Have you had regular blood tests to see how your potassium is doing and the other electrolytes?
Patti, how are you doing. Are you seeing any improvement?
Beth
Sunshine008
06-24-2009, 11:23 PM
Hi Timber (hi girls),
The docs originally thought I had H. Periodic paralysis, but say that I have too much of an ongoing problem for it to be that. They told me that people with that disease/problem feel fine most of the time, then all of a sudden feel terrible and their body feel paralyzed. My body definitely feels bad/weak alot - day to day - and my limbs do feel wierd, like they are not working...maybe like they are numb from the cold and stiff/tingly. My potassium has only tested low twice, but I have that same feeling all the time as when it tested low. So I know it's fluxuating regardless of what the tests/docs say. I can feel it.
Is your problem ongoing, day to day, or is it like they said where you are fine for a few months, then bam, your potassium drops and you're really in bad shape? What type of doctor are you seeing for this?
The docs originally thought I had H. Periodic paralysis, but say that I have too much of an ongoing problem for it to be that. They told me that people with that disease/problem feel fine most of the time, then all of a sudden feel terrible and their body feel paralyzed. My body definitely feels bad/weak alot - day to day - and my limbs do feel wierd, like they are not working...maybe like they are numb from the cold and stiff/tingly. My potassium has only tested low twice, but I have that same feeling all the time as when it tested low. So I know it's fluxuating regardless of what the tests/docs say. I can feel it.
Is your problem ongoing, day to day, or is it like they said where you are fine for a few months, then bam, your potassium drops and you're really in bad shape? What type of doctor are you seeing for this?
plash561
06-25-2009, 12:23 AM
Sally,
I live near St. Louis about 40 miles northeast of the city. My nephrologist has a practice in St. Louis, she is great. I actually found her when my mother first had kidney failure and I was so impressed with her that I was thrilled when my regular dr. referred me to her. She is very forthright with information. I appreciate a dr. not sugar coating things-just tell me straight and let me deal with it. My biggest problem right now is getting both the nephrologist and internist on the same page. My regular dr. is normally great but doesn't get the Gitelman's. I'm overweight and have battled weight for a long time, basically I've felt like crap for a long time and hurt so bad that it's very difficult to exercise at all. My dr. wants me to start a diet and exercise. My husband has high blood pressure and is also overweight. So he can't have sodium, I'm supposed to add salt to my diet. She wants us to join a gym, I have a hard time getting out of bed in the morning let alone get on a treadmill, recumbant bike, eliptical-whatever they have. If I feel slightly better, it doesn't take much to wear me out and my body to put me back in my place. The frustrating part is I would love to get back to exercising, I used to walk every morning. Anyway, I don't know how you take the pre-natels, they made me sick when I was pregnant, I can't imagine taking them now. I think it probably depends on the dr. you go to and what their opinion is on the diuretics, my dr. seems to think the Spironolactone is better for me than the Amiloride. It could be very individual as to which one is better. I'm really glad I found this board, at least we can ask each other questions kind of sound things off to each other-we all have it and understand how frustrating and painful it is. Unless the dr.'s have it they don't really understand it. It's kind of like talking to people who don't have kids about your 2 year old in the middle of terrible two's, they can see it but don't get it or relate to it. They see your frustration sometimes but you feel like their just not getting it. Or for those of us who have not lost a child saying to those who have that we understand-no we don't, not unless we've been through it. I can say that I am having some better days, I also feel like I'm getting better at bucking it up and hiding it because I'm just tired of letting this get the best of me and seeing my family worry about me. I'm tired of people asking me how I feel, I'm glad they care but it's hard, it makes me think about it more when they ask. So.....I've ranted enough and complained enough for tonight. Sorry if I brought you down. I'm sure you can relate if you feel even half as bad as I do. Even after my rant, if you need to ask anything or add anything, go for it, I'm grateful for information and willing to give you info if I can answer. It's been a long week and I'm exhausted, trying to sleep and not being very successful. You take care and hang in there. Hopefully tomorrow will bring a better day for all of us.
Patti
I live near St. Louis about 40 miles northeast of the city. My nephrologist has a practice in St. Louis, she is great. I actually found her when my mother first had kidney failure and I was so impressed with her that I was thrilled when my regular dr. referred me to her. She is very forthright with information. I appreciate a dr. not sugar coating things-just tell me straight and let me deal with it. My biggest problem right now is getting both the nephrologist and internist on the same page. My regular dr. is normally great but doesn't get the Gitelman's. I'm overweight and have battled weight for a long time, basically I've felt like crap for a long time and hurt so bad that it's very difficult to exercise at all. My dr. wants me to start a diet and exercise. My husband has high blood pressure and is also overweight. So he can't have sodium, I'm supposed to add salt to my diet. She wants us to join a gym, I have a hard time getting out of bed in the morning let alone get on a treadmill, recumbant bike, eliptical-whatever they have. If I feel slightly better, it doesn't take much to wear me out and my body to put me back in my place. The frustrating part is I would love to get back to exercising, I used to walk every morning. Anyway, I don't know how you take the pre-natels, they made me sick when I was pregnant, I can't imagine taking them now. I think it probably depends on the dr. you go to and what their opinion is on the diuretics, my dr. seems to think the Spironolactone is better for me than the Amiloride. It could be very individual as to which one is better. I'm really glad I found this board, at least we can ask each other questions kind of sound things off to each other-we all have it and understand how frustrating and painful it is. Unless the dr.'s have it they don't really understand it. It's kind of like talking to people who don't have kids about your 2 year old in the middle of terrible two's, they can see it but don't get it or relate to it. They see your frustration sometimes but you feel like their just not getting it. Or for those of us who have not lost a child saying to those who have that we understand-no we don't, not unless we've been through it. I can say that I am having some better days, I also feel like I'm getting better at bucking it up and hiding it because I'm just tired of letting this get the best of me and seeing my family worry about me. I'm tired of people asking me how I feel, I'm glad they care but it's hard, it makes me think about it more when they ask. So.....I've ranted enough and complained enough for tonight. Sorry if I brought you down. I'm sure you can relate if you feel even half as bad as I do. Even after my rant, if you need to ask anything or add anything, go for it, I'm grateful for information and willing to give you info if I can answer. It's been a long week and I'm exhausted, trying to sleep and not being very successful. You take care and hang in there. Hopefully tomorrow will bring a better day for all of us.
Patti
plash561
06-25-2009, 12:29 AM
Beth,
I was told that with this disease our bodies hold on to the calcium and because of that our calcium level looks low in the urine tests, so I'm not sure you are supposed to need extra calcium. Let me know if this is what you have seen too. I just put a post on here to Sally. I'm really having a bad day and kind of ranted on and on. I hope you are feeling better. I did feel better over the weekend, but it didn't take much to put me back where I was. My body sure let's me know when enough is enough. Take care.
Patti
I was told that with this disease our bodies hold on to the calcium and because of that our calcium level looks low in the urine tests, so I'm not sure you are supposed to need extra calcium. Let me know if this is what you have seen too. I just put a post on here to Sally. I'm really having a bad day and kind of ranted on and on. I hope you are feeling better. I did feel better over the weekend, but it didn't take much to put me back where I was. My body sure let's me know when enough is enough. Take care.
Patti
beth67
06-26-2009, 03:04 PM
I'll have to go look at my urine labs. I don't recall the calcium being low. It is below normal in my blood. Going to get labs done soon so I'll see if the diuretics are working better now that I'm taking an extra amiloride for the last three months. I still feel yucky but not the drop dead weakness like before where I didn't go anywhere for fear of having one of my extreme tired weakness attacks with the lovely heart palpitations. The palpitations have pretty much disappeared. My neck and trapezius muscles are doing better. My physical therapist is gone for a month so I got desperate and ordered a book on counterstrain which she does on me and is great. I got the book last Wednesday and by Thursday afternoon the pain was completely gone. Amazing. I highly recommend looking into strain counterstrain for muscle pain. It's hard to find someone who does this but I just kept calling physical therapy places and finally found someone. The book is great for times when I can't get to the therapist or if she's gone or on the weekends when I can't get to her. It's just nice to know I can take care of the pain myself and hopefully won't have to spend money on therapists. I am really excited about this counterstrain stuff. I need to call my sister who is in pain all the time and constantly going to the chiropractor.
I don't know if I mentioned this but I'm doing this paleo caveman diet and I'm amazed how much Better I feel regarding inflammation and general energy. I go on and off of it because I am weak and I was brought up on sugar and white flour but when I stick to it I really feel better. Also, I've lost four pounds in the last week since I'm been really good on the diet. My skin looks a lot better. Also, I've been going to weight watchers which is inspiring. There is a lady there that has lost 180lbs. I don't go every week but check in once in awhile. If any of you need to lose weight I think it's a great program. It also helps if you have a good leader. That can make all the difference. My mom and my older brother have diabetes and I have a son with type 1 and I know all too well the complications that can occur so I really need to lose the weight. My 14year old has had it since the age of 4. He now has protein in his urine which is a little scary. It's a warning signal that the kidneys are not happy. I know in the back of my mind that the future is going to be filled with agony with him if he doesn't shape up and get things under control. He is young and thinks he's invincible.
Better go do my counterstrain stretches. My neck and trapezius are getting achy and painful again.
Beth
I don't know if I mentioned this but I'm doing this paleo caveman diet and I'm amazed how much Better I feel regarding inflammation and general energy. I go on and off of it because I am weak and I was brought up on sugar and white flour but when I stick to it I really feel better. Also, I've lost four pounds in the last week since I'm been really good on the diet. My skin looks a lot better. Also, I've been going to weight watchers which is inspiring. There is a lady there that has lost 180lbs. I don't go every week but check in once in awhile. If any of you need to lose weight I think it's a great program. It also helps if you have a good leader. That can make all the difference. My mom and my older brother have diabetes and I have a son with type 1 and I know all too well the complications that can occur so I really need to lose the weight. My 14year old has had it since the age of 4. He now has protein in his urine which is a little scary. It's a warning signal that the kidneys are not happy. I know in the back of my mind that the future is going to be filled with agony with him if he doesn't shape up and get things under control. He is young and thinks he's invincible.
Better go do my counterstrain stretches. My neck and trapezius are getting achy and painful again.
Beth
sam56
06-29-2009, 08:15 PM
Hi Patti.
Sorry you've been having some bad days. It's no fun! Today I feel better than I have for awhile, but I'm sure since I mentioned it, downhill from here, ha! Seems like thats how it goes. Seems like I'm at the drs. all the time anymore. I've added a therapist to my list. I've been really depressed how different my life is now. I handled it better during the winter months when the weather was nasty. I kind of like this woman. It has been a relief to spill out all the frustrations and not have to worry about who will tell who, ect. I get tired too of people asking "how are you feeling?", when to be quite honest most days I feel like shit. Anyway, she lets me ramble on and on and still has a smile on her face when my times up. She probably thinks I'm a nut job but oh well.
My weight is up too. No wonder when you think about it. Never thought I would say it, but I miss my busy days. I have walked a 3mi. trail most everyday for yrs. and can't do that anymore. Some days it's hard just to get around the house. How bout you? It's so frustrating to me not knowing if I'm going to feel good tomarrow. I see my MD Wed. She did alot of lab work last time. She has little knowledge on Gitelmans.... I want her to give me something different for my leg spasms. The flexeril makes me sleepy and doesn't work that well. My therapist thinks I should take a anti-depressant or mild nerve medication. She was mailing something about it to my doctor.
I'll tell you one thing for sure....no way am I going to take an anti-depressant! I have a couple of friends who started on them and they blew up like pigs on a hot summer day! I really feel uncomfortable with this weight anyway only to add more. Oh my.
Do you think you have the energy to work out at the gym? I've been thinking about some kind of diet plan but honestly I don't want to. Did you decide on anything?
Hang in there. Hope you're having good days.
Sally
Sorry you've been having some bad days. It's no fun! Today I feel better than I have for awhile, but I'm sure since I mentioned it, downhill from here, ha! Seems like thats how it goes. Seems like I'm at the drs. all the time anymore. I've added a therapist to my list. I've been really depressed how different my life is now. I handled it better during the winter months when the weather was nasty. I kind of like this woman. It has been a relief to spill out all the frustrations and not have to worry about who will tell who, ect. I get tired too of people asking "how are you feeling?", when to be quite honest most days I feel like shit. Anyway, she lets me ramble on and on and still has a smile on her face when my times up. She probably thinks I'm a nut job but oh well.
My weight is up too. No wonder when you think about it. Never thought I would say it, but I miss my busy days. I have walked a 3mi. trail most everyday for yrs. and can't do that anymore. Some days it's hard just to get around the house. How bout you? It's so frustrating to me not knowing if I'm going to feel good tomarrow. I see my MD Wed. She did alot of lab work last time. She has little knowledge on Gitelmans.... I want her to give me something different for my leg spasms. The flexeril makes me sleepy and doesn't work that well. My therapist thinks I should take a anti-depressant or mild nerve medication. She was mailing something about it to my doctor.
I'll tell you one thing for sure....no way am I going to take an anti-depressant! I have a couple of friends who started on them and they blew up like pigs on a hot summer day! I really feel uncomfortable with this weight anyway only to add more. Oh my.
Do you think you have the energy to work out at the gym? I've been thinking about some kind of diet plan but honestly I don't want to. Did you decide on anything?
Hang in there. Hope you're having good days.
Sally
sam56
06-29-2009, 09:32 PM
Hi Beth,
Sorry it took me so long to respond. I was very enlightened with your great attitude with dealing Gitelmans. I think about the absorbtion factor also. Sounds like you have done alot of good research and are reading some good books.
The conversion of meq's to mgs. are different with each med as I understand it. "potassium gluconate" is 10meq's=2350mgs, "elemental potassium" is 10meq's=390mgs. On my Rx bottle it says Potassium CL. I remember my dr. saying I had to get them by perscription.
You sure are right about that I'm lucky they caught it in a matter of stat blood work. A year prior I had my gallbladder removed...they had to wait 10hrs. for IV Pot. as it was too low to operate. I was very sick and did not think that much of it at the time. Now knowing what I do, my doctor should have followed up with checking my Pot. level after.
I had to remind her of that after this.
How have you been doing with weakness and muscle spams,ect.
I was reading what you were telling Patti about this diet. I would be interested in hearing more about it although dieting right now, knowing I should, is still not that appealing. Without the lifestyle I once sustained the calories just seem to turn into weight gain.
Yes, I do have regular blood work. I will get my latest reports Wed. My doctor did something where I can go to the lab anytime to get my Potasssium checked without having to get the paperwork and ok from her if I feel its too low. I just don't want to have to go back in the hospital for 24hr. IV Pot. Some of the nurses don't run enough reg. saline when giving it and it feels like razor blades going up your arm. Have you had this happen? I screamed out once. I was so embarrassed.
Take care. Hope to hear from you again!
Sally
Sorry it took me so long to respond. I was very enlightened with your great attitude with dealing Gitelmans. I think about the absorbtion factor also. Sounds like you have done alot of good research and are reading some good books.
The conversion of meq's to mgs. are different with each med as I understand it. "potassium gluconate" is 10meq's=2350mgs, "elemental potassium" is 10meq's=390mgs. On my Rx bottle it says Potassium CL. I remember my dr. saying I had to get them by perscription.
You sure are right about that I'm lucky they caught it in a matter of stat blood work. A year prior I had my gallbladder removed...they had to wait 10hrs. for IV Pot. as it was too low to operate. I was very sick and did not think that much of it at the time. Now knowing what I do, my doctor should have followed up with checking my Pot. level after.
I had to remind her of that after this.
How have you been doing with weakness and muscle spams,ect.
I was reading what you were telling Patti about this diet. I would be interested in hearing more about it although dieting right now, knowing I should, is still not that appealing. Without the lifestyle I once sustained the calories just seem to turn into weight gain.
Yes, I do have regular blood work. I will get my latest reports Wed. My doctor did something where I can go to the lab anytime to get my Potasssium checked without having to get the paperwork and ok from her if I feel its too low. I just don't want to have to go back in the hospital for 24hr. IV Pot. Some of the nurses don't run enough reg. saline when giving it and it feels like razor blades going up your arm. Have you had this happen? I screamed out once. I was so embarrassed.
Take care. Hope to hear from you again!
Sally
beth67
06-29-2009, 11:28 PM
Hi Sally, Good idea going to the therapist. I should have gone to one. I also hate the lifestyle change. Your right, winter was easier because there was an excuse not to be active but now it's green and beautiful and I really miss walking and hiking. I miss the freedom I used to have with my body. The muscle weakness has especially bothered my sacro iliac joint and piriformis muscle so walking is very hard. Really need that potassium and calcium for the muscle contraction and relaxation. I think it's hardest on my boys especially my 12 year old because we used to go exploring all the time. We would just get in the car and drive wherever we wanted. A lot of the time I would just let him point in the direction he wanted to go and drive that way until we found an interesting trail to explore. I'm trying to go for car rides with him when I'm having a better day. We get beautiful thunderheads that form through out the day and then get the predictable storm and rain around 4pm and then a sunny evening. I love going for a ride with him and watching the storms develop.
I started to work on losing weight two years ago. I've lost 35lbs. I'm not going for a speed record obviously. I was feeling weak in June of 2007 not realizing why. Thought I was just lazy. Actually that whole winter is when I started to go down hill. I thought losing weight would make me energetic. Despite losing weight I felt weaker and weaker. There were so many opportunities for doctors to catch what was going on with me. Either they weren't very good doctors or my labs looked too obscure for them to realize what was going on. I saw them and thought something was wrong. I wish I was more forceful then and demanded more answers then maybe I wouldn't have lingered in pain and weakness for so long. From the time I really felt that I was weak to getting diagnosed was a year and four months. All that time without enough potassium. It just kills me that I didn't take action sooner. I thought it was all from my back injury but it wasn't a bad enough injury to make me house bound and collapsing on the bed all day from exhaustion. Oh well. At least I know what is wrong now. I guess I'm using you guys as therapy. Thanks. I don't like the fear I still have even though I am better than last year but still not the old me. I'm afraid to go for even short walks (an eighth of a mile) with out my husband because I'm afraid I'll get a muscle cramp or spasm. Mentally I just need to look at how much better I am than last summer and realize that one day I'll be normal again. I hope. I have been getting spasms that were gone for quite awhile. That could be from my iron being low though.
OK now for happy thoughts. I hear a Swainson's thrush in the yard. I haven't seen one in years. Very elusive bird. I've head him but rarely get a glimpse of him. I love his song. I'm going to go out with my binoculars and see if I can find him. My husband who used to never look twice at a bird has become an avid bird watcher. Something just clicked in his head and now if a chickadee is at the feeder he's there with his camera taking a million pictures. Cracks me up. He is an artist so he uses the pictures for reference so I guess that justifies the million pictures.
Beth
I started to work on losing weight two years ago. I've lost 35lbs. I'm not going for a speed record obviously. I was feeling weak in June of 2007 not realizing why. Thought I was just lazy. Actually that whole winter is when I started to go down hill. I thought losing weight would make me energetic. Despite losing weight I felt weaker and weaker. There were so many opportunities for doctors to catch what was going on with me. Either they weren't very good doctors or my labs looked too obscure for them to realize what was going on. I saw them and thought something was wrong. I wish I was more forceful then and demanded more answers then maybe I wouldn't have lingered in pain and weakness for so long. From the time I really felt that I was weak to getting diagnosed was a year and four months. All that time without enough potassium. It just kills me that I didn't take action sooner. I thought it was all from my back injury but it wasn't a bad enough injury to make me house bound and collapsing on the bed all day from exhaustion. Oh well. At least I know what is wrong now. I guess I'm using you guys as therapy. Thanks. I don't like the fear I still have even though I am better than last year but still not the old me. I'm afraid to go for even short walks (an eighth of a mile) with out my husband because I'm afraid I'll get a muscle cramp or spasm. Mentally I just need to look at how much better I am than last summer and realize that one day I'll be normal again. I hope. I have been getting spasms that were gone for quite awhile. That could be from my iron being low though.
OK now for happy thoughts. I hear a Swainson's thrush in the yard. I haven't seen one in years. Very elusive bird. I've head him but rarely get a glimpse of him. I love his song. I'm going to go out with my binoculars and see if I can find him. My husband who used to never look twice at a bird has become an avid bird watcher. Something just clicked in his head and now if a chickadee is at the feeder he's there with his camera taking a million pictures. Cracks me up. He is an artist so he uses the pictures for reference so I guess that justifies the million pictures.
Beth
plash561
06-30-2009, 04:44 PM
Hi Everyone,
I have been away from the computer for a few days. My Mom is back in the hospital, she had complications from the dialysis and now has a staph infection from the dialysis catheter. She will need to go through getting another one inserted in a few days after they get the infection under control. My best friends mother died last Thursday, went the visitation and funeral today. I had 2 trade shows I did this past week which wiped me out and to top it all off I went to my regular dr. this morning (first I've seen of her since being diagnosed). She doesn't have the first clue about this disease, I wanted to shake her. She wants me to take muscle relaxers and trazadone for sleeping. I'm so sensitive to meds Tylenol makes me sleepy. She thinks now I have fybromyalgia and maybe diabetic, even though my blood sugar has always been fine. I go tomorrow morning for a fasting bloodwork to check out magnesium and sugar. After she left the room I started crying, my husband was bewildered. I kind of expected her to react this way. It's like she's totally ignoring the diagnosis, she says that my muscles weakness and pain is not the lack of potassium-blah, blah, blah. She's 5'2" tall about as big around as my little finger and hasn't been sick a day in her life. She doesn't get that it takes everything I have to get out of bed in the morning and go to work. I have to go to the hospital tonight and try to be cheery for my mom's sake, which will be hard but she doesn't need any more stress. I needed to vent and didn't know where else to go than on here. Sorry if I brought you all down. I could just scream. Thanks for listening.
Patti
I have been away from the computer for a few days. My Mom is back in the hospital, she had complications from the dialysis and now has a staph infection from the dialysis catheter. She will need to go through getting another one inserted in a few days after they get the infection under control. My best friends mother died last Thursday, went the visitation and funeral today. I had 2 trade shows I did this past week which wiped me out and to top it all off I went to my regular dr. this morning (first I've seen of her since being diagnosed). She doesn't have the first clue about this disease, I wanted to shake her. She wants me to take muscle relaxers and trazadone for sleeping. I'm so sensitive to meds Tylenol makes me sleepy. She thinks now I have fybromyalgia and maybe diabetic, even though my blood sugar has always been fine. I go tomorrow morning for a fasting bloodwork to check out magnesium and sugar. After she left the room I started crying, my husband was bewildered. I kind of expected her to react this way. It's like she's totally ignoring the diagnosis, she says that my muscles weakness and pain is not the lack of potassium-blah, blah, blah. She's 5'2" tall about as big around as my little finger and hasn't been sick a day in her life. She doesn't get that it takes everything I have to get out of bed in the morning and go to work. I have to go to the hospital tonight and try to be cheery for my mom's sake, which will be hard but she doesn't need any more stress. I needed to vent and didn't know where else to go than on here. Sorry if I brought you all down. I could just scream. Thanks for listening.
Patti
beth67
06-30-2009, 10:28 PM
Hi Patti, I'm so sorry about your mom and your friends mom. Must be stressful. I know stress makes everything else worse for me. And may I say really loudly if you could hear me OH MY GOD! Your doctor sounds just like mine. Skinny and with out any wrinkles, looks like she walked off the cover of Vogue magazine, looks like she has never been sick or deals with much stress and sits there and also says that the pain and extreme weakness isn't from the lack of potassium. You've got to be kidding me. The last visit I had with her my husband was with me and after I did my talk about how bad I was doing while she looked at me condescendingly with a smirk on her face and dismissed me then left the room my husband and I just looked at each other bewildered. She didn't know half the things I was talking about. Actually she is the PA and it's hard to see the real kidney doctor. Finally after a few emails with the real doctor I got answers for my questions but it was like trying to jump through hoops to get them. I've had doctors wanting to give me muscle relaxants and anti depressants for sleeping. Tried amitripalyne which is an anti depressant for sleeping and after a week I started to feel really weird mentally and really shaky. It scarred me so I stopped it. My doctor keeps me hyperthyroid to suppress any thryroid cancer cells from reproducing and you can't take relaxants when your hyper due to heart palpitations. I think I have fibromyalgia like symptoms but I think and hope it will clear up after my blood stabilizes. I read a book by Dr. Titelbaum called From Fatigued To Fantastic. It discussed chronic fatigue and fibro. He says fibro is a lack of energy in the cells and a cascade of problems causes it like electrolytes and vitamins being low, low iron, allergies, yeast overgrowth, bad eating habits and other stuff. Just our electrolytes and vitamins being off due to the Gitelman's I think could trigger fibromyalgia and I'm hoping things will get better. I'm taking the vitamins on the doctors site. Their supposed to be of better quality. I like the Revitalizing Sleep formula which is a bunch of herbs. No side effects and works pretty good. Main ingredient in valerian. I go to the natural food section of the store and get sleepy tea. Can't remember the name of it but it also has valerian and other herbs. That works good to. Also I'm trying to stick with a good getting ready for bed routine and going to bed at the same time every night. Anyways, I better go start dinner. Take care all.
How is everyone else doing. Tired, are you still around?
Beth
How is everyone else doing. Tired, are you still around?
Beth
beth67
07-01-2009, 12:41 AM
I just found out that there is a private message area on this board. I didn't realize that people were writing me. So sorry I didn't respond. I'll be better about checking it.
Beth
Beth
tired47
07-01-2009, 08:04 PM
Hi All,
Beth67,
I am still around. This heat is REALLY getting to me... hot, hot here in south Texas, over 100 every day. I am staying inside and hydrating, but I have a tough time in heat.
I have watched your posts... hoping all are getting some relief soon. I am considering seeing a Lyme doctor. I had a negative western blot... but have been told some of my symptoms could be Lyme. I had a "spider bite" with rash in 2000 and no treatment. I am just so frustrated , my heart goes palpating wildly, exhausted, muscle spasms off and on... no rhyme or reason to it all.
I refuse to give up the fight, but some days I am so tired...... you all know what I feel. My kids and hubby are so patient,but sick of me saying I am tired.
Sorry to vent, better days are ahead for all us... all- don't give up the fight. There is a rainbow with our name on it... I am just praying for rain here ( we in 3 level drought/water restriction). At least no grass to mow... its brown!!
Good luck to all and Happy July 4th!!!
Beth67,
I am still around. This heat is REALLY getting to me... hot, hot here in south Texas, over 100 every day. I am staying inside and hydrating, but I have a tough time in heat.
I have watched your posts... hoping all are getting some relief soon. I am considering seeing a Lyme doctor. I had a negative western blot... but have been told some of my symptoms could be Lyme. I had a "spider bite" with rash in 2000 and no treatment. I am just so frustrated , my heart goes palpating wildly, exhausted, muscle spasms off and on... no rhyme or reason to it all.
I refuse to give up the fight, but some days I am so tired...... you all know what I feel. My kids and hubby are so patient,but sick of me saying I am tired.
Sorry to vent, better days are ahead for all us... all- don't give up the fight. There is a rainbow with our name on it... I am just praying for rain here ( we in 3 level drought/water restriction). At least no grass to mow... its brown!!
Good luck to all and Happy July 4th!!!
beth67
07-01-2009, 10:57 PM
Hi Tired, I think you told me but I've forgotten. Have you had a hormone salvia test done and an iron ferritin test? My ferretin is pretty low and from what I read that can be responsible for the palps and tiredness as well as the low potassium. I've been on progesterone cream since last summer and that has helped with the palpitations and my jumpyness. It was a scorching 75 degrees here today. I know it sounds funny but for us thats a hot summer day. Very sultry and the usual thunder storms in the evening. I really hate the heat. Takes so much out of me. I think it's the potassium thing that does it to us the most. Well, the kids are itching to get on the computer. They did a good job with helping around the house and deserve some time.
Beth
Beth
tired47
07-02-2009, 12:06 AM
Beth67,
Yes, had saliva testing done. It showed high cortisol levels, high estrogen, low progesterone. I was taken off progesterone for a while ( due to some high DHEA levels), but now back on -thank goodness. I did not sleep while off, had anxiety. I have been back on for a month, retested my levels and progesterone was very low. Dr said it could take 3 months to get it back to normal levels. I am sleeping better now and anxiety is almost gone.
I also had very low iron levels, now on prescription iron. I have very heavy cycles every month so they say reason for low iron ( I am perimenopausal).:eek:
I would love 75 degrees , I was back east last week to visit my folks ( dad is on dialysis and not doing to well). The weather was 70- low 80 and cool at night.... absolutely awesome!! I sat outside at night, saw the fireflies ( don;t have them in Texas), listened to the crickets and bullfrogs in my inlaws ponds... just wonderful!!! Made me miss the summers there, but not the winters , I have talked my hubby into going back for summers when he retires -leave Tx, for the hot months.:)
Take care, I will watch the posts and say prayers for good health for all again soon.:angel:
Yes, had saliva testing done. It showed high cortisol levels, high estrogen, low progesterone. I was taken off progesterone for a while ( due to some high DHEA levels), but now back on -thank goodness. I did not sleep while off, had anxiety. I have been back on for a month, retested my levels and progesterone was very low. Dr said it could take 3 months to get it back to normal levels. I am sleeping better now and anxiety is almost gone.
I also had very low iron levels, now on prescription iron. I have very heavy cycles every month so they say reason for low iron ( I am perimenopausal).:eek:
I would love 75 degrees , I was back east last week to visit my folks ( dad is on dialysis and not doing to well). The weather was 70- low 80 and cool at night.... absolutely awesome!! I sat outside at night, saw the fireflies ( don;t have them in Texas), listened to the crickets and bullfrogs in my inlaws ponds... just wonderful!!! Made me miss the summers there, but not the winters , I have talked my hubby into going back for summers when he retires -leave Tx, for the hot months.:)
Take care, I will watch the posts and say prayers for good health for all again soon.:angel:
plash561
07-02-2009, 12:52 AM
Beth, I think it's time for me to call the kidney dr. again. She gave me her cell number just in case I needed to talk to her, since her practice is in 3 different offices she's kind of hard to get a hold of at a specific office. I don't expect her to go against my reg. dr. I just need to let her know how I'm feeling and what the reg. dr. wants to put me on. I think I just need consistancy between them. I was so angry yesterday and so shocked that she wasn't listening to me at all, I'm just not used to her acting that way. I know I need to lose weight, I know I need to exercise but it's not happening right now. I can start paying more attention to what I eat but walking up our stairs in our house is about all my body can give these days. The kidney dr. put me on the mag-oxide for a month and wants to see how I do with just the spironolactone, I think I need the mag-oxide again. My reg. dr. took me off my Ambien CR (which was working) because she thinks that's causing my dizzyness, ok......so she wants me to take Trazadone & Flexiril which both have potential side effects of......dizzyness. Makes no sense to me. I didn't even fill the prescriptions. I don't think she even realizes all the symtoms of the Gitelman's. I feel like making copies of everything I've found and faxing them or taking them to her, shoving them in her face, telling to her read up on it like I have and saying so do you understand now. Ok, so I better stop, I need to go to sleep in a little bit and I don't want to get worked up again. I'll let you know what the kidney dr. says. Thanks for understanding. It's nice to talk to someone who has been there.
Patti
Patti
Timber
07-04-2009, 04:57 PM
Hi Timber (hi girls),
Sorry for taking so long to reply. I keep forgetting to check back in this thread :)
My problem isn't as you described. My symptoms are daily, with some fluctuations in severity, times when things are better or worse. I am in contact with many other people with HKPP and many of them also have ongoing problems, rather than discrete episodes as your doctor described.
Sorry for taking so long to reply. I keep forgetting to check back in this thread :)
My problem isn't as you described. My symptoms are daily, with some fluctuations in severity, times when things are better or worse. I am in contact with many other people with HKPP and many of them also have ongoing problems, rather than discrete episodes as your doctor described.
beth67
07-07-2009, 06:33 PM
Tired, what is the difference between prescription iron and store bought iron? My ferritin is low at 16 and my kidney dr. wants me at 100. The range is 11-306. I've been taking two 29mg chelated iron capsules twice a day with 500mg of vitamin c to help it absorb. I've been doing that for about two months. Had blood work done today so I'll know in a couple of days if it worked. I've been taking 1,000mg of magnesium instead of the 400mg I was taking and I'm hoping that will help my calcium absorb and bring it into normal range. Tired, I know what you mean about the frogs and crickets. We don't have singing frogs here or crickets. The night is absolutely silent. I really miss that sound. I might do a search for a frog and cricket cb to play at night.
Patti, sorry your having such a bad time. I don't think my regular doctor or kidney doctor really realize how horrible it has been either. I've also needed to lose weight and it's now getting a little easier. I think having my blood approaching normal is helping. I know what you mean about the exercise. I'm happy to climb the stairs with out feeling like I need to take a nap after the last step. My husband said why don't I do some squats. I gave him a look like you've got to be kidding. He hasn't brought it up again. There is improvement but it's just slow. I think in the next few months you'll start to see an improvement. I know it's frustrating waiting. I get discouraged because I'm not the old me but I have to look at how much better I am than last summer. I was pretty much bed ridden. Concerning sleep, I can't take prescriptions because they effect me so bad. I do like a herbal supplement called Revitalizing Sleep Formula by Enzymatic Therapy. You can get it in a health food store or at Dr. Titelbaum's site. I read his book on chronic fatigue and fibromyalgia and some of his suggestions have really helped because I think all this has triggered fibromyalgia in me. As my blood approaches normal some of my fibromyalgia symptoms are going away. I researched the main herbs in the formula and they are very safe. The main one is valerian and it has been used as a sleep aid for a long time. It works really good. I take it one hour before bed and it makes me very sleepy and relaxed. I highly recommend it.
Hope everyone else is doing ok.
Beth
Patti, sorry your having such a bad time. I don't think my regular doctor or kidney doctor really realize how horrible it has been either. I've also needed to lose weight and it's now getting a little easier. I think having my blood approaching normal is helping. I know what you mean about the exercise. I'm happy to climb the stairs with out feeling like I need to take a nap after the last step. My husband said why don't I do some squats. I gave him a look like you've got to be kidding. He hasn't brought it up again. There is improvement but it's just slow. I think in the next few months you'll start to see an improvement. I know it's frustrating waiting. I get discouraged because I'm not the old me but I have to look at how much better I am than last summer. I was pretty much bed ridden. Concerning sleep, I can't take prescriptions because they effect me so bad. I do like a herbal supplement called Revitalizing Sleep Formula by Enzymatic Therapy. You can get it in a health food store or at Dr. Titelbaum's site. I read his book on chronic fatigue and fibromyalgia and some of his suggestions have really helped because I think all this has triggered fibromyalgia in me. As my blood approaches normal some of my fibromyalgia symptoms are going away. I researched the main herbs in the formula and they are very safe. The main one is valerian and it has been used as a sleep aid for a long time. It works really good. I take it one hour before bed and it makes me very sleepy and relaxed. I highly recommend it.
Hope everyone else is doing ok.
Beth
tired47
07-07-2009, 08:43 PM
beth,
Wow, iron is 16!!! I'll bet you are tired!! Mine was 29 last checkup and I started prescription tablets ( $$$ expensive). Dr said 30 is low normal... wanted me to be 50 or more. She believed mine was from heavy menstrual cycles ( joys of perimenopause).
I don't know what the difference really is... except the prescription was higher dose and better absorbed. Bravo for taking vitamin C for absorption, she recommended that too. I take 1000 mg daily, more if I have lots of muscle cramps.
How is the high dose of magnesium working?? It works for me if I use citrate, but mag oxide goes right through me if you know what I mean!!
I read somewhere your mag/calcium should be either 1/1 ratio or 1/2 ratio, Not sure but I try for 2/1, Calcium to magnesium.
Good luck to all, hope you are starting to feel better.
I am on a quest to find a good lyme dr... in hopes of getting tested to see if that could be my problem. Hard to find a lyme dr in Texas, CDC says lyme is not a problem here.
As for the "frogs and cricket sounds" I have a radio that plays 4 different sounds to wake / go to sleep. My favorites are the ocean waves and the pond sounds of water and bullfrogs.... that one makes me miss ( home)and family, but I love listening to it... soooo relaxing.
Take care, keep posting.:wave:
Wow, iron is 16!!! I'll bet you are tired!! Mine was 29 last checkup and I started prescription tablets ( $$$ expensive). Dr said 30 is low normal... wanted me to be 50 or more. She believed mine was from heavy menstrual cycles ( joys of perimenopause).
I don't know what the difference really is... except the prescription was higher dose and better absorbed. Bravo for taking vitamin C for absorption, she recommended that too. I take 1000 mg daily, more if I have lots of muscle cramps.
How is the high dose of magnesium working?? It works for me if I use citrate, but mag oxide goes right through me if you know what I mean!!
I read somewhere your mag/calcium should be either 1/1 ratio or 1/2 ratio, Not sure but I try for 2/1, Calcium to magnesium.
Good luck to all, hope you are starting to feel better.
I am on a quest to find a good lyme dr... in hopes of getting tested to see if that could be my problem. Hard to find a lyme dr in Texas, CDC says lyme is not a problem here.
As for the "frogs and cricket sounds" I have a radio that plays 4 different sounds to wake / go to sleep. My favorites are the ocean waves and the pond sounds of water and bullfrogs.... that one makes me miss ( home)and family, but I love listening to it... soooo relaxing.
Take care, keep posting.:wave:
beth67
07-07-2009, 09:42 PM
Ya that is ridiculously low for ferritin. My regular doctor didn't take it seriously but my kidney doctor did. Really think that's part of my whole feeling yucky problem. I'm doing o.k. intestinally with 1,000mg of magnesium. I'm taking less calcium than I used to. Was taking 1260mg now I'm taking 630mg broken into two doses. I take it at the same time as the magnesium and vitamin D which is also very low. Dr. Titelbaum now recommends Jigsaw brand magnesium so I'm taking that. I'm doing the 2/1 ration of the magnesium to calcium. I wonder if it takes three months like a lot of other supplements to see the effects. I feel like a big test tube. Add a little of this, a little of that and see if that makes me work better.
Beth
Beth
tired47
07-07-2009, 09:49 PM
Wow, surprised your regular dr was not upset .... mine did not like 29!
It takes about 3 months my dr said.... good luck and hope it goes up quickly.
Sounds like you have a good plan- best wishes!! Keep posting!!
:)
It takes about 3 months my dr said.... good luck and hope it goes up quickly.
Sounds like you have a good plan- best wishes!! Keep posting!!
:)
plash561
07-11-2009, 09:44 PM
Beth, tell me more about the saliva test. My nephrologist didn't know what I was talking about. So I'm curious what it shows. Found out yesterday from my regular dr. that my potassium is low again, I need to go see the nephrologist again. I'm calling Monday. This had been an awful week. My mother was moved to a rehab center after spending 3 weeks in the hospital with the staph infection in her dialysis catheter and a uti. My husband had hernia surgeryand she didn't recognize my sister yesterday, I'm having trouble with an employee and on top of it-I feel like crap. Do you all take magnesium over the counter supplements on top of the prescription or is it all prescription? I need to get a handle on this, I've got to be more proactive and not leave it all up to the dr. As I've said before my reg. dr. doesn't get it. I've had a headache for 2 days and my IBS is acting up. Not a good day. Beth, if you could kind of give me an idea of what you take on a daily basis that would get me started on doing some research for myself. It's been 2 months since I was diagnosed and I just need some help with what I should be doing. Please be specific if you don't mind. Thanks.
Patti
Patti
sam56
07-13-2009, 04:54 PM
Hi everyone,
Thought I would catch you guys up on things. My primary doctor consulted with my kidney doctor about Gitelmans and what treatment she should be doing for me. He told her that there is no cure for this syndrome, that each case is individual, some are more symptomatic than others. My doctor said it is very important to treat the symptom's I have in order for me to live a better life.
Honestly, I think it was the first time since being diagnosed that I realized my life, as I used to know it, is gone. Iam going to go with what they think I should take. She also has talked with PT. I will be going to the pool 3 times a week. There will be a therapist there to help me with the exercising and walking in the pool for the first couple of sessions, then I will be on my own.
I talked with her about fibromyalgia. She said it's Gitelmans.
Hope everyone is having good days.
Sally
Thought I would catch you guys up on things. My primary doctor consulted with my kidney doctor about Gitelmans and what treatment she should be doing for me. He told her that there is no cure for this syndrome, that each case is individual, some are more symptomatic than others. My doctor said it is very important to treat the symptom's I have in order for me to live a better life.
Honestly, I think it was the first time since being diagnosed that I realized my life, as I used to know it, is gone. Iam going to go with what they think I should take. She also has talked with PT. I will be going to the pool 3 times a week. There will be a therapist there to help me with the exercising and walking in the pool for the first couple of sessions, then I will be on my own.
I talked with her about fibromyalgia. She said it's Gitelmans.
Hope everyone is having good days.
Sally
beth67
07-14-2009, 01:37 AM
Hello everyone, Patti I'm so sorry you are having a bad time. I know it's draining to take care of other people when your exhausted yourself. I used to climb the stairs at night to check my son's blood sugar and now I yell up to him to come to me. Ridiculous. Again, I have to look at how much I've improved since last summer. I got my labs back and last March my Potassium was 3.7 and now it's 4.2 so thats an improvement. Must be the extra amiloride thats helping. My sodium is still low at 134 the same as in march but I think we all will have low sodium due to the diuretic. Low range is 136 so I'm not horribly low. I'm still getting the tingling around the mouth but not as bad so something is still off with my blood. My ferritin is still low at 19. Kidney dr. wants me at 100. I think this is the final piece to my feeling better puzzle. If I could get my iron up I bet I would feel much better. From what I've learned you need to find out why your anemic in the first place to know how to properly treat it. My regular dr. just said take more iron but didn't inform me how to take it properly and never followed up. I'm thinking of seeing a hematologist because I don't want to wait around for a year and a half feeling bad like I did with the kidney problem being misdiagnosed. I want to nip this in the bud. Patti, the saliva test I had done was by ZRT Laboratory. The test covered estradiol, progesterone, the progesterone to estradiol ratio, testosterone, dheas, and cortisol. The test I had done a year ago showed I was low in progesterone so my doctor prescribed bioidentical progesterone cream. I had another test done last February and it shows my progesterone is fine now. It has helped with the heart palpitations and night sweats. I think they are a good lab. They sent me directly a print out of my labs and a note explaining everything with suggestions to help the problem. Concerning magnesium I take 1,000mg of Jigsaw brand. In the morning I take 315mg calcium citrate (citrical brand) and 500mg magnesium and do the same thing at night. I also take a bunch of other stuff in hopes it will turn me into wonder woman but I'm starting to think the low iron is holding me back.
Sally, what medication are you on and for how long. Be careful about exercising. I tried to go back and do my physical therapy exercises and really hurt myself. I did it when I think my potassium was too low. Just take it slow.
Beth
Sally, what medication are you on and for how long. Be careful about exercising. I tried to go back and do my physical therapy exercises and really hurt myself. I did it when I think my potassium was too low. Just take it slow.
Beth
plash561
07-14-2009, 10:42 PM
Beth,
thanks. I need to check the anemia, I was anemic last year but I didn't think to ask about that. My potassium is low again 2.9, I'm not surprised, I've been feeling pretty rough again for a while. I'll be glad to see my nephrologist soon. I've been off my Ambien for almost 2 weeks and still have the dizziness, imagine that. I need to call my dr. and tell her so she realizes it wasn't the Ambien, but the Gitelman's. My husbands surgery went well and he's still recovering and trying to keep from putting too much on me, he's a sweetheart but I don't want him to push himself so hard, he's so used to taking care of me he's doesn't let me take care of him. I don't know what happened in my last post, it was a little out of sequence. My mom is who didn't recognize my sister. Anyway...... It has been a really sucky week and it's only Tuesday. I had to fire a really biligerant employee today. She forced me into it and I hated it. Whoever said it gets easier to fire people the more you do it was nuts, it doesn't get easier. Sometimes I wonder why I wanted to own my own business and then I realize how much I really love it. I just hate the being boss part. Do you have shaking problems? While I was in the middle of this confrontation today my left leg and arm starting shaking and twitching a lot, I figure it was stress induced but I've been noticing it a lot lately even when I'm not stressed. I stuck my hand under my leg so the employee wouldn't notice it, but I don't think I hid the leg very well. Well I think I'm going to try to go to bed soon. I'm going to talk to the dr. about the supplements. Thanks for the info.
Patti
thanks. I need to check the anemia, I was anemic last year but I didn't think to ask about that. My potassium is low again 2.9, I'm not surprised, I've been feeling pretty rough again for a while. I'll be glad to see my nephrologist soon. I've been off my Ambien for almost 2 weeks and still have the dizziness, imagine that. I need to call my dr. and tell her so she realizes it wasn't the Ambien, but the Gitelman's. My husbands surgery went well and he's still recovering and trying to keep from putting too much on me, he's a sweetheart but I don't want him to push himself so hard, he's so used to taking care of me he's doesn't let me take care of him. I don't know what happened in my last post, it was a little out of sequence. My mom is who didn't recognize my sister. Anyway...... It has been a really sucky week and it's only Tuesday. I had to fire a really biligerant employee today. She forced me into it and I hated it. Whoever said it gets easier to fire people the more you do it was nuts, it doesn't get easier. Sometimes I wonder why I wanted to own my own business and then I realize how much I really love it. I just hate the being boss part. Do you have shaking problems? While I was in the middle of this confrontation today my left leg and arm starting shaking and twitching a lot, I figure it was stress induced but I've been noticing it a lot lately even when I'm not stressed. I stuck my hand under my leg so the employee wouldn't notice it, but I don't think I hid the leg very well. Well I think I'm going to try to go to bed soon. I'm going to talk to the dr. about the supplements. Thanks for the info.
Patti
beth67
07-15-2009, 12:17 AM
Patti, Yes I did have the shaking and twitching. It's a lot better now. 2.9 is really low. Has it gone up at all since being on the diuretic. I forget what your on. Is it the Spironolactone? It does sound like you need to see your kidney doctor. I really an sorry your having such a bad time. I remember it being really bad for me. I suggest getting your ferritin checked. Your iron could be low as well. I emailed my kidney doctor about it still being low along with my vitamin D. Depending on what he says and can do for me I may make an appointment with a Hematologist. So much work to get all the answers. If I don't do it I don't think anyone will. My poor sister called me today and said she has been having weakness, confusion and lack of concentration and she said her ferritin was 14. I said mine was 19 and that is really low. Should be 100 so I told her no wonder she feels so bad. I hope she follows through and gets it checked out. Hope things turn around soon for you.
Beth
Beth
plash561
07-15-2009, 11:46 PM
Beth, I'm only on the spironolactone right now. I think she'll probably put me bck on the magnesium when I go to see her. The shaking and twitching is always worse for me when I'm stressed, so it's been doing it a lot lately. Hopefully with the problem employee being gone, my stress level will stay down for a while. I will ask about the anemia and ferritin. I need to cover all the bases, I'm starting a journal trying to write everything down to ask her when I go. There's so much to ask. I hate to hear that your sister is having problems. So far I'm the only one in my family having any symptoms. I'm grateful for that, my sister has enough going on with my mom living with her. I have been looking after her for the last 12 or so years. When I started feeling bad my sister decided it was her turn. Whn I was looking after her didn't live me, and our bother helped quite a bit, he doesn't anymore, my sister has tons of patience which is a great thing. We live about an hour and a half away from each other so I can't really help day to day. I try to go see them as often as possible, it's just not always possible. With everything going on lately with my husbands surgery and me getting dizzy so much, I'm not able to drive over there very much. I feel bad not being able to help much. I'm hoping that I can get myself in line so that I can help more. Hopefully it won't be much longer before I start feeling better. I'll keep you posted please keep me posted, it really is helpful being able to ask questions of everyone and get answers without feeling like a hypochondriac. Thanks to all, Beth you have been a real help since I started getting on this board.
Patti
Patti
beth67
07-21-2009, 08:26 PM
Hello all, I've been away from the boards busy trying to deal with my low ferritin problem. My kidney doctor says i need to go into the hospital and get intravenous iron. That's fairly drastic so I thought I would see my family dr. and get her opinion and looked at the same labs that my kidney dr. was looking at and said nothing is wrong, my iron is fire. Oh my goodness! How can two, what I hope are fairly educated doctors, have such differing opinions. I've checked out a lot of books from the library and have been doing research on the computer and from what I've learned you need to find out the cause of the iron deficiency before you treat it. My sisters friend was deficient and went in the hospital for expensive iv treatments which take a few visits and her iron never went up. She went in for genetic testing and turns out she had a condition where she will never absorb much iron. Would have saved some money if they figured out the cause first. I asked my dr. for a celiac panel because I don't feel good when I eat wheat. I get intestinal problems and feel generally yucky. When you have celiac you don't absorb iron. I'm oddly wishing I have celiacs just so I will know whats wrong with me.
Patti, I'm glad you have family to help you out with your mom. Keeping a journal is a really good idea. I have a notebook that I jot down questions for the doctor. I bought a small recorder and record my doctor visits now. Can't trust my husband to write down all the key information. Hope you start feeling better soon.
Hope everyone else is hanging in there.
Beth
Patti, I'm glad you have family to help you out with your mom. Keeping a journal is a really good idea. I have a notebook that I jot down questions for the doctor. I bought a small recorder and record my doctor visits now. Can't trust my husband to write down all the key information. Hope you start feeling better soon.
Hope everyone else is hanging in there.
Beth
plash561
07-22-2009, 01:28 AM
Beth, I read online last night that low potassium can cause irritable bowel sydrome, my reg. dr. told me 2 years ago that I had mild IBS. Here lately it has been less than mild. I was really surprised to see it when I was surfing for info. So maybe your potassium level is what's causing the digestive problems. The site said that low potassium can wreak havoc on you digestive system and colon. It's worth a shot to ask about it. How's your sister? I hope she's getting some help. I'm sure she is pumping you for info as much as possible. I'm going to try to get into see the kidney dr. next week, I can't wait another month, I am hurting so bad, muscle spasms, heart palps and just generally feeling weak and crappy. I am so tired of being tired all the time. Let me know what the dr. says about your tests, I'm curious. Take care.
Patti
Patti
sam56
07-24-2009, 11:53 PM
Hi everyone! I've had a couple tough weeks. Haven't felt like even getting online. My labs were in and I wasn't surprised my Potassium was low (3.1). Mag was too low also. My cholesterol was 232 so she gave me a script for Crestor. I read up on it and it causes muscle and joint pain and spasms. So many on message boards called it an evil drug...don't go on it. I can't figure out what my dr. was thinking. I've been having so many spasms and shaking in my legs, it is hard for me to walk. I take the Flexeril but does not help much, just sleepy.
Patti, at 2.9 did you go in for IV Pot.? I don't want to bore you guys with my list of meds and supplements but maybe we can compare. Here it goes...
Amiloride 5mg. 1
Potassium 20 MEQ's 8
Mag Oxide 400mg. 2
Metformin 500mg. 2
Dicyclomine 10mg, 3
Flexeril10mg. 3
Tramadol 50mg. 6
Pre Natal 1
Klonopin 1mg up to 3 as needed
Nexium40mg 1
Crestor10mg. 1 have not started taking yet
Supplements
Omega 3 1,000mg. 4
B1 250mg. 2
D3 1,000 IU 2
Hope you all will share yours too!
I wondered too if anyone drives alot. I've been at a place now where I don't feel comfortable driving. Makes things hard. I love summertime. Take care dear people.
Sally
Patti, at 2.9 did you go in for IV Pot.? I don't want to bore you guys with my list of meds and supplements but maybe we can compare. Here it goes...
Amiloride 5mg. 1
Potassium 20 MEQ's 8
Mag Oxide 400mg. 2
Metformin 500mg. 2
Dicyclomine 10mg, 3
Flexeril10mg. 3
Tramadol 50mg. 6
Pre Natal 1
Klonopin 1mg up to 3 as needed
Nexium40mg 1
Crestor10mg. 1 have not started taking yet
Supplements
Omega 3 1,000mg. 4
B1 250mg. 2
D3 1,000 IU 2
Hope you all will share yours too!
I wondered too if anyone drives alot. I've been at a place now where I don't feel comfortable driving. Makes things hard. I love summertime. Take care dear people.
Sally
beth67
07-25-2009, 01:43 AM
Hello, Got my labs back. I have celiac disease. I've told my doctors for two years about my symptoms and they never tested me until last week when I specifically asked for the test from my family doctor. I pretty much diagnosed myself after doing a lot of reading about my low ferritin. With celiac your immune system goes out of control when you eat gluten and attacks the villi (little hairs) in the intestines and destroys them preventing you from absorbing nutrients especially iron. I'm glad I didn't listen to my kidney doctor and spend a few thousand on iv iron. Everything I read about low ferritin and anemia said to find the cause before treating. I just found this out today and the library didn't have any books on the disease so it's all new to me. From what I understand after I stop eating gluten my villi will start to heal and then I'll be able to absorb nutrients. I think the kind of doctor I need to see for this is a gastroenterologist. I'll have to do more research and order some books so I can get a full grasp on all this. This sure answers a lot of questions like why I still feel bad even though my potassium is up to 4.2 and according to my kidney doctor the potassium thing shouldn't be causeing the problems I have now. I still think my body is recovering from lack of potassium. I think someone on this board said thier doctor said it could take up to a year to start to feel better. The one book at the library that talked about celiac was a book about irritable bowel syndrome. If you have IBS symptoms I would get checked for celiacs because the symptoms are pretty much the same. Anyways, I hope you all had a good day. I need to go get some duct tape for my head because it's about to explode with all the new information and I'm in shock. Cancer, asthma, rare kidney disorder and now celiacs. I think I have had my fair share of illness. Can I be done now?
Beth
Beth
plash561
07-25-2009, 03:06 PM
Sally,
I'm just on the Spironolactone right now. No I haven't done the potassium IV yet. I'm having trouble getting in to see the dr. quickly. I've got to do something soon, I really feel awful. Is the Metformin for diabetes? Are you being treated with Dicyclomine for IBS? My regular dr. wanted me to take the Tramadol & Flexiril also, I didn't fill the prescriptions because both cause dizziness and I'm already dizzy enough i don't need anything that would add to it. I was taking AmbienCR for sleep, the Tramadol was supposed to replace it, it is also an anti-depressant, I've been on it before and had nightmares so I won't go back on it. The Ambien was working fine but she thought it might be the reason for my dizziness. I'm not taking anything for sleep right now, I'm going without, I'm sleeping alright but get awakened by pain several times a night. I think the AmbienCR allowed me to sleep deeper and not notice the pain as much. I'm having trouble with my reg. dr. trying to diagnose me with Fibromialgia instead of the Gitelman's, on a previous post I had voiced my frustration with this. She also gave me Flexeril for muscle pain, it can cause dizziness too so I didn't start it either. I've used it before and it didn't take care of any pain it just made me sleepy and lightheaded. My body is very sensitive to any pain relievers, muscle relaxants, so I try very hard to just not use much other than Tylenol. My kidney dr. said to stay away from any Ibuprofin, NSAIDS of any kind because they cause swelling and water retention. I already have a problem with ankle and hand swelling so she really impressed upon me to stay away from them. I wish the Spironolactone would help with the water retention more, but I guess it's mostly for the potassium. Does the Klonopin have any side effecets with dizziness or sleepiness? I would think it would. I hope you feel better soon, being sick sucks. I would much rather be out riding bikes with my kids and grandkids, but as it is right now I can't even watch my grandson for my daughter, I don't have the energy and feel so bad all the time. Take care.
Patti
I'm just on the Spironolactone right now. No I haven't done the potassium IV yet. I'm having trouble getting in to see the dr. quickly. I've got to do something soon, I really feel awful. Is the Metformin for diabetes? Are you being treated with Dicyclomine for IBS? My regular dr. wanted me to take the Tramadol & Flexiril also, I didn't fill the prescriptions because both cause dizziness and I'm already dizzy enough i don't need anything that would add to it. I was taking AmbienCR for sleep, the Tramadol was supposed to replace it, it is also an anti-depressant, I've been on it before and had nightmares so I won't go back on it. The Ambien was working fine but she thought it might be the reason for my dizziness. I'm not taking anything for sleep right now, I'm going without, I'm sleeping alright but get awakened by pain several times a night. I think the AmbienCR allowed me to sleep deeper and not notice the pain as much. I'm having trouble with my reg. dr. trying to diagnose me with Fibromialgia instead of the Gitelman's, on a previous post I had voiced my frustration with this. She also gave me Flexeril for muscle pain, it can cause dizziness too so I didn't start it either. I've used it before and it didn't take care of any pain it just made me sleepy and lightheaded. My body is very sensitive to any pain relievers, muscle relaxants, so I try very hard to just not use much other than Tylenol. My kidney dr. said to stay away from any Ibuprofin, NSAIDS of any kind because they cause swelling and water retention. I already have a problem with ankle and hand swelling so she really impressed upon me to stay away from them. I wish the Spironolactone would help with the water retention more, but I guess it's mostly for the potassium. Does the Klonopin have any side effecets with dizziness or sleepiness? I would think it would. I hope you feel better soon, being sick sucks. I would much rather be out riding bikes with my kids and grandkids, but as it is right now I can't even watch my grandson for my daughter, I don't have the energy and feel so bad all the time. Take care.
Patti
plash561
07-25-2009, 03:19 PM
Well Beth,
everyone keeps telling me that God only gives you as much as you can handle, so he must think you are pretty strong. You sound strong and determined to me so I'm sure once you get your body figured out the dr.s don't have a chance. Good luck with your research. I'm trying to research into what supplements I should be taking to help with the potassium and magnesium to get all the meds working together, it's so confusing. Dr's don't use supplements very much in this way so you can't get help from them, and there are so many whack jobs out there in health food and homeopathic medicine you don't know which one's are legitimate and which one's just want your money. They know you are desperate to feel better and they take advantage of it. I just want to find the right formula for me. I need to get off of here and try to get the energy up to go to dinner with my sister and go see my mom in the nursing home. I'm really hoping to find relief soon. Beth, I think Sally (sam56) could use some of the info you found about the Celiacs, she might have that too. Take care.
Patti
everyone keeps telling me that God only gives you as much as you can handle, so he must think you are pretty strong. You sound strong and determined to me so I'm sure once you get your body figured out the dr.s don't have a chance. Good luck with your research. I'm trying to research into what supplements I should be taking to help with the potassium and magnesium to get all the meds working together, it's so confusing. Dr's don't use supplements very much in this way so you can't get help from them, and there are so many whack jobs out there in health food and homeopathic medicine you don't know which one's are legitimate and which one's just want your money. They know you are desperate to feel better and they take advantage of it. I just want to find the right formula for me. I need to get off of here and try to get the energy up to go to dinner with my sister and go see my mom in the nursing home. I'm really hoping to find relief soon. Beth, I think Sally (sam56) could use some of the info you found about the Celiacs, she might have that too. Take care.
Patti
beth67
07-25-2009, 04:12 PM
Hi Sally, Sorry your having such a bad time. I've had episodes as well where I don't want to climb the stairs and get on line. The effort is just too much. I've read that taking acid reducing medication like Nexium inhibits vitamin absorption especially magnesium and calcium. You need an acidic environment to absorb them. My calcium and magnesium were low so I thought I'll just take more calcium. I was taking about 1,500mg a day. I read that the more calcium you take the more your body excretes it and when it goes it takes along magnesium. Our western diets are high in calcium and low and magnesium and it should be the other way around. You need more magnesium than calcium for the calcium to absorb. I started to take 1,000mg of magnesium and 600mg of calcium a couple of months ago and on my latest labs from last week my calcium and magnesium are now up higher. It goes against everything I've learned because I've been told by doctors and calcium companies that you need a lot of calcium for strong bones. Also magnesium citrate or malate is better because it's in an acid form. Better for absorption. Did you get your vitamin d checked? Mine is 48 and supposedly 75 is best. I'm taking 5,000mg a day now and I'll get it checked in a few months to see if that is working. You need that vitamin d for calcium absorption as well. Being low in d can cause depression and muscle pain. I don't like to drive either at least very far from home base. I used to love to go on long rides with my kids. That's what we do in Alaska. We get out and explore the beautiful scenery in summer because we are stuck inside all winter. It has been really hard on me and my kids to not have the freedom to do that. I've been trying to go on short drives and stop at a new creek or valley for them to explore while I sit next to the car. Can't wait to be back to normal some day. Here is what I take:
multi vitamin
D3 5,000mg
calcium 600mg
fish oil 2,000
magnesium 1,000mg
E 400mg
probiotic pearls 1
turmeric for inflammation
B complex
Ribose
iron 18mg 3x a day with 500mg of C for absorption
Revitalizing sleep formula with valerian to help with getting to sleep
Amiloride 10mg
Sprionolacton 50mg
Since I have celiacs and need to go off gluten hopefully my vitamin levels will stay up without having to take so much stuff. Once you stop gluten the intestine starts to heal and it can absorb more. I should let my kidney doctor know whats going on and maybe get my potassium and other vitamins checked in a couple of months to see if they go up and maybe I won't have to take both the diuretics. I really think humans don't need to be on vitamins if they eat a healthy diet but our soils have been so depleted of nutrients and with the overuse of fertilizers I think it's sometimes necessary. I feel cruddy as usual today but I'm going to force myself to go to the store. Getting out puts me in a better mood. Hoping we all get well soon. So thankful I have this board to chat with you guys.
Beth
multi vitamin
D3 5,000mg
calcium 600mg
fish oil 2,000
magnesium 1,000mg
E 400mg
probiotic pearls 1
turmeric for inflammation
B complex
Ribose
iron 18mg 3x a day with 500mg of C for absorption
Revitalizing sleep formula with valerian to help with getting to sleep
Amiloride 10mg
Sprionolacton 50mg
Since I have celiacs and need to go off gluten hopefully my vitamin levels will stay up without having to take so much stuff. Once you stop gluten the intestine starts to heal and it can absorb more. I should let my kidney doctor know whats going on and maybe get my potassium and other vitamins checked in a couple of months to see if they go up and maybe I won't have to take both the diuretics. I really think humans don't need to be on vitamins if they eat a healthy diet but our soils have been so depleted of nutrients and with the overuse of fertilizers I think it's sometimes necessary. I feel cruddy as usual today but I'm going to force myself to go to the store. Getting out puts me in a better mood. Hoping we all get well soon. So thankful I have this board to chat with you guys.
Beth
beth67
07-30-2009, 01:47 PM
Patti, Sally, Tired, Timber, how are you all doing. Anyone got labs back to see how your doing. I'm still trying to understand this celiac diagnosis. Doctors not getting back to me so I'm winging it on my own. Basically I just don't need to eat gluten but I'm learning there is more involved like yearly tests to check for intestinal cancer. I've learned that this is a very misunderstood disease and doctors don't recognize the symptoms and pass it off as something else. Granted the symptoms can mimic other diseases but why not give someone a celiac panel just to make sure thats not it. Hope you are all doing well and get a celiac panel with your next round of blood tests.
Beth
Beth
tired47
07-30-2009, 10:08 PM
Beth,
Celiac was one thing they considered are a reason for all my problems. I did the gluten free for 2 months and had NO improvement in symptoms. Plus the test they did came back negative too. This spring my son gave up gluten for Lent . He has Crohns, ITP and thought it might make him feel better. So I joined with him for support and to see if it helped my symptoms at all.
For me I did not show any changes so I gave it up after Lent.
There is gluten is SO many things... twizzlers licorise candy has gluten!!! There are some excellent websites to help you . I carried the list of NO's in my purse when I went shopping. First trips to store were long and frustrating but once I got it down it became easier and easier.
Tip- Walmart's own brand ( great value) lists the gluten, allergies automatically on back of product which makes it so much easier - and less expensive too. Walmart great value cheese curls are gluten FREE!!!
Right now I am being told by nutritionist/naturopath to give up all dairy- let my digestive system heal.... thats tough for me. I love my ice cream, glass of milk daily... I am drinking goat's milk and it is okay. She said soy milk is harder to digest, less preferable than goat's milk.
I have been doing it for some time and no improvement.She claims that the digestive tract is everything to the body. It affects the mental health, immunity, endocrine, ect.... She gave me a book to read about it, called Healing your Brain/ Body.
I have not been feeling so great lately... it is SO hot here, well over 100 for weeks now.I am a hermit inside alot.
And I did a round of antibiotics for sinus issues and my symptoms very really returned with a vengence. So frustrating........ just want to get some relief permanently!!!
But don't we all?????
Take care , hope we all are feeling better soon!!! :)
Celiac was one thing they considered are a reason for all my problems. I did the gluten free for 2 months and had NO improvement in symptoms. Plus the test they did came back negative too. This spring my son gave up gluten for Lent . He has Crohns, ITP and thought it might make him feel better. So I joined with him for support and to see if it helped my symptoms at all.
For me I did not show any changes so I gave it up after Lent.
There is gluten is SO many things... twizzlers licorise candy has gluten!!! There are some excellent websites to help you . I carried the list of NO's in my purse when I went shopping. First trips to store were long and frustrating but once I got it down it became easier and easier.
Tip- Walmart's own brand ( great value) lists the gluten, allergies automatically on back of product which makes it so much easier - and less expensive too. Walmart great value cheese curls are gluten FREE!!!
Right now I am being told by nutritionist/naturopath to give up all dairy- let my digestive system heal.... thats tough for me. I love my ice cream, glass of milk daily... I am drinking goat's milk and it is okay. She said soy milk is harder to digest, less preferable than goat's milk.
I have been doing it for some time and no improvement.She claims that the digestive tract is everything to the body. It affects the mental health, immunity, endocrine, ect.... She gave me a book to read about it, called Healing your Brain/ Body.
I have not been feeling so great lately... it is SO hot here, well over 100 for weeks now.I am a hermit inside alot.
And I did a round of antibiotics for sinus issues and my symptoms very really returned with a vengence. So frustrating........ just want to get some relief permanently!!!
But don't we all?????
Take care , hope we all are feeling better soon!!! :)
sam56
07-31-2009, 10:39 PM
Hi everybody,
Beth, a few yrs. ago I was diagnosed with celiac disease. I spent endless hours in the stores checking for glueten free products. Countless money. Went to a dietitian. things were not improving so I saw a gastroenterologist who ran alot of tests plus a colonoscopy only to find out I did not have celiac, just IBS. Thats why I'm on Dicyclomine. I was so mad at my reg. dr., she just acted like "oh well" ! Thanks for the tip on Nexium. That could be part of the reason my mag. is so low. I have increased my D and I'll have her check it next labs. Thanks for thinking of that. :)
Patti, I am taking Metformin for diabetes type2. I was diagnosed with this a few months before Gitelmans. The flexeril seemed to help at first, but when I take it now it makes my legs feel like jello with spasms,Ha!
The Tramadol just takes the edge off the pain. I wake up with it at night too
On a better note, the Klonopin is helping me. I seem more relaxed which makes it so much easier to deal with all of this. The therapist I see has helped too.
I asked my kidney dr. why I was not on Spironolactone. He said it was because of the diuretic effect which would cause more lack of Potassium. He said that there are 2 types of Amiloride, the one I am not on has HCL or something like that on it and it also has diuretic properties. Boy, this stuff is really confusing!
Fibromialgia has alot of the same symptoms of Gitelmans. I've talked with my dr. about this. She said since there are no tests to confirm fibro, they just diagnose it from the patients symtoms. In other words we probably all have it. She said she would be giving me the same meds I'm on now anyway...just not the pot.-mag.- amiloride.
My mom came down last week to take me to my appt. She could tell a big difference in my walking,ect. It really worried her. I told her it was just a bad day. It's hard to explain it all to others.....today was a good day and I took a drive. It felt good.
Hope you guys are having more good than bad days. Thank god for this Board!!
Sally
Beth, a few yrs. ago I was diagnosed with celiac disease. I spent endless hours in the stores checking for glueten free products. Countless money. Went to a dietitian. things were not improving so I saw a gastroenterologist who ran alot of tests plus a colonoscopy only to find out I did not have celiac, just IBS. Thats why I'm on Dicyclomine. I was so mad at my reg. dr., she just acted like "oh well" ! Thanks for the tip on Nexium. That could be part of the reason my mag. is so low. I have increased my D and I'll have her check it next labs. Thanks for thinking of that. :)
Patti, I am taking Metformin for diabetes type2. I was diagnosed with this a few months before Gitelmans. The flexeril seemed to help at first, but when I take it now it makes my legs feel like jello with spasms,Ha!
The Tramadol just takes the edge off the pain. I wake up with it at night too
On a better note, the Klonopin is helping me. I seem more relaxed which makes it so much easier to deal with all of this. The therapist I see has helped too.
I asked my kidney dr. why I was not on Spironolactone. He said it was because of the diuretic effect which would cause more lack of Potassium. He said that there are 2 types of Amiloride, the one I am not on has HCL or something like that on it and it also has diuretic properties. Boy, this stuff is really confusing!
Fibromialgia has alot of the same symptoms of Gitelmans. I've talked with my dr. about this. She said since there are no tests to confirm fibro, they just diagnose it from the patients symtoms. In other words we probably all have it. She said she would be giving me the same meds I'm on now anyway...just not the pot.-mag.- amiloride.
My mom came down last week to take me to my appt. She could tell a big difference in my walking,ect. It really worried her. I told her it was just a bad day. It's hard to explain it all to others.....today was a good day and I took a drive. It felt good.
Hope you guys are having more good than bad days. Thank god for this Board!!
Sally
beth67
08-01-2009, 12:22 AM
Sally, you said your doctor wasn't going to put you on spironolacton because it get's rid of more potassium? I think he is wrong. Spironolacton is a potassium sparing diuretic. It holds back potassium. If you research potassium sparing diuretics it lists amiloride and spironolacton and also I've read that those are the two diuretics to hold on to potassium. I think you should look into this and arm yourself with some printouts to show your doctor. Have you had your potassium checked lately. I'm on 50mg of spironolacton and 10mg of amiloride and over the last six months my potassium has gone from 3 to 4.2 so it's definitely working. Concerning fibromyalgia, I thought I had it and I read a really good book by Dr. Titelbaum called From Fatigued To Fantastic. It covers chronic fatigue and figromyalgia. Have you had your ferritin checked to see if your anemic. Mine is 19 and it needs to be 100 according to my kidney doctor. Hopefully it will go up now that I'm on a gluten free diet.
Beth
Beth
plash561
08-01-2009, 08:45 PM
Beth and everyone Im in the hospital, my potassium went down to 2.7 yesterday. My symptoms were similar to a heart attack. Scared everyone at our shop. I was dizzy, lightheaded, disoriented, heart racing, room spinning, cold sweats, nausea. I really thought I was going to pass out. They immediately did an EKG, no heart attack. Did bloodwork, I told them about the Gitelmans-no one had heard of it but understood what I was talking about. Magnesium and potassium were seriously very low. I got 2 bags of potassium and it went up to 3.4 then this morning down to 3.2 magnesium and potassium started again this morning, just finished at 6:15. Hopefully I will get to go home tomorrow. I'll fill you in on the rest of this week shen I get home and can use the laptop. Take care all. Patti
beth67
08-02-2009, 02:49 AM
Patti, I'm so sorry you are having a bad time. I've been wondering about you. I'm amazed this happened. Being on the diuretic should have brought your potassium up a little by now I would think to keep this from happening. Your not on Amiloride right? Maybe your kidney doctor needs to add that so you can hold on to more potassium. Must have been a scary experience. Before I was diagnosed with gitelman's I ended up in the emergency room twice with the racing heart, nausea, dizziness and I also lost control of my muscles and my limbs were jerking all over the place. I really feel for you. Very scary. I was under the impression that it doesn't matter how much iv potassium you are given. If you don't have enough potassium sparing diuretic in you it's going to be excreted in the urine. I don't know. Maybe what their giving you in the iv bag will help you get over this setback. Wish I was smart enough to understand the whole kidney process so I knew why doctors do certain things. Hope you get home soon.
Beth
Beth
plash561
08-02-2009, 12:04 PM
I'm really getting frustrated now, my labs came back this morning, my potassium last night was 3.7 now 3.2, I know that's better than the 2.7 but the fact that it dropped that much since last night doesn't make sense. I'll be here another day, they've ordered a CT scan for later today to check my kidneys. They are doing a 12 hr urine and stool collection to check for aldosterone & cortisol. It amazes me that the potassium hurts so bad when they do the iv. Ouch!! I'll keep you all posted. Thanks for the prayers keep me in them.
Patti
Patti
plash561
08-03-2009, 09:50 PM
Beth,
I'm home from the hospital. My potassium was up to 3.6 as of 2:00 this afternoon. I'm feeling much better. Still weak and tired but glad to be home and not stuck so many times a day and woke up soooo....many times at night. My meds for right now will be mag-oxide 500mg twice a day, spironolactone 50mg twice a day, potassium 40 meq twice a day. I will be having bloodwork done once a week for at least 4 weeks and probably every 2 weeks after that. My kidney dr. was on call today so I got to see her personally, I was so glad of that. She said my glucose was a little high but that the Gitelmans can raise it slightly. She wants to keep a very close eye on me so I will go for bloodwork this Thursday morning and see her in the afternoon the same day. I'm going to bed early tonight and try to get some rest. I will keep ou posted. I hope everyone is doing well.
Patti
I'm home from the hospital. My potassium was up to 3.6 as of 2:00 this afternoon. I'm feeling much better. Still weak and tired but glad to be home and not stuck so many times a day and woke up soooo....many times at night. My meds for right now will be mag-oxide 500mg twice a day, spironolactone 50mg twice a day, potassium 40 meq twice a day. I will be having bloodwork done once a week for at least 4 weeks and probably every 2 weeks after that. My kidney dr. was on call today so I got to see her personally, I was so glad of that. She said my glucose was a little high but that the Gitelmans can raise it slightly. She wants to keep a very close eye on me so I will go for bloodwork this Thursday morning and see her in the afternoon the same day. I'm going to bed early tonight and try to get some rest. I will keep ou posted. I hope everyone is doing well.
Patti
sam56
08-04-2009, 12:39 AM
Hi Patti, so sorry about what you're going through. My Pot. does the same thing yours is doing the times I've had to go in for IV Potassium. Up then down again. It usually 3-4 days when mines been that low before it levels out. Have the nurse bring you a warm/hot towel and put it around your iv site and arm. It helped me with what I call razor blades going up my arm. The last time they ran a normal saline IV with the potassium and it really helped. I'll be thinking of you.
Hugs, Sally
Hugs, Sally
plash561
08-04-2009, 10:31 PM
Sally,
I'll keep all of what you said in mind, I hope I won't have to go through this again but realize that while hopeful I still need to be realistic. You aren't kidding about the razor blades-oh my gosh!!!! The nurse brought in an ice pack and that helped a little but not alot. Backing it off so that it took longer was the only thing that made it tolerable. The magnesium IV hurt also. Did you have trouble with your veins being hard to find when they drew blood? I've been having trouble with that and don't understand why unless it has to do with the spironolactone and the diuretic part making me slightly dehydrated. I will try the warm towel when/if I have to do the iv again. And the saline along with it. How long after you had to do all the iv's did you start feeling better. I came home yesterday and had to go back to work this afternoon. I'm really dragging today and have had very mild muscle cramping, not as bad as Thursday night before I ended up at the hospital on Fri, but still muscle cramping. It's really strange where I have the cramping too, I had them in my thigh, wrist and shoulders. I have very little charlie horse cramps in my calves like most people. Keep your fingers crossed for bloodwork on Thursday. Thanks for the advice, it's nice that we can help each other out. We sure can't get these life experience hints from dr's who aren't personally going through this. Thank God I have a great kidney dr. that listens and looks at all angles. Take care. Hugs back to you.
Patti
I'll keep all of what you said in mind, I hope I won't have to go through this again but realize that while hopeful I still need to be realistic. You aren't kidding about the razor blades-oh my gosh!!!! The nurse brought in an ice pack and that helped a little but not alot. Backing it off so that it took longer was the only thing that made it tolerable. The magnesium IV hurt also. Did you have trouble with your veins being hard to find when they drew blood? I've been having trouble with that and don't understand why unless it has to do with the spironolactone and the diuretic part making me slightly dehydrated. I will try the warm towel when/if I have to do the iv again. And the saline along with it. How long after you had to do all the iv's did you start feeling better. I came home yesterday and had to go back to work this afternoon. I'm really dragging today and have had very mild muscle cramping, not as bad as Thursday night before I ended up at the hospital on Fri, but still muscle cramping. It's really strange where I have the cramping too, I had them in my thigh, wrist and shoulders. I have very little charlie horse cramps in my calves like most people. Keep your fingers crossed for bloodwork on Thursday. Thanks for the advice, it's nice that we can help each other out. We sure can't get these life experience hints from dr's who aren't personally going through this. Thank God I have a great kidney dr. that listens and looks at all angles. Take care. Hugs back to you.
Patti
beth67
08-11-2009, 02:36 AM
How is everyone, Patti are you doing better since your hospital visit. I have been completely involved with researching my celiac diagnosis. Had my first visit with a gastroenterologist (gi) and he said I should get an endoscopy to see if everything is ok in my stomach and upper intestines. With celiacs, there is a risk of tumors so he wants to make sure there are not any and that should be the only endoscopy I will need. He wants me to have a bone scan because with celiacs you don't absorb alot of stuff along with calcium and my calcium has been on the low side. Now that I'm on a gluten free diet hopefully my calcium will go up along with my vitamin D. I'm glad i found this now and not when I'm 70 with a hip fracture. Hopefully my bones are not in too bad of condition. Not looking forward to the endoscopy. I have to go back on gluten for two days before it because the dr. wants to see how my intestines react to it and get a biopsy. Kidney dr. still wants to do iv iron but I've talked to other celiacs and thier iron went up on its own after being off gluten. Let me know how you are all doing.
Beth
Beth
plash561
08-12-2009, 01:59 AM
Beth, I still feel pretty awful. Went to see the nephrologist Thursday, my magnesium still low, potassium was 3.6, dr. up all my meds. I think I posted how much. I'm working half days which is difficult. I'm looking forward to someday feeling good, so is my family. This is so hard on them, they try to be supportive but I feel guilty. I need to go to bed but my heart is racing. Did your glucose go up at any time? Mine is at 126, I'm trying to watch the sugars, but it's difficult. I've read that low potassium can increase your blood glucose, anyone else heard that? Beth, I'm glad you're getting some answers on the celiac disease. Take care everyone.
Patti
Patti
beth67
08-12-2009, 05:31 PM
I checked my sugar the other day with my son's meter and it was 114mg before breakfast. I did take a sip of coffee with only milk in it right before the test so I don't think it could have raised my sugar that much. Sugars should be around 70 before meals. I'm going to check my self before and after meals for a couple of days to see if its getting any higher. I haven't read anything about sugars going up with gitelman's. Maybe I'll look into that. I'm very tired all the time so I had my iron checked the other day and it was 13.5 so thats not causeing it. I have been really bad about my bedtime routine. I've been staying up too late and doing too many activities in the evening so I'm not letting my body wind down naturally and not sleeping well. Thats most likely causing the tiredness. Lot's of things I need to do but don't do them. Why is that. I know better. Just need to enforce a little self control on myself. Patti, you may start to feel better in a little while. It does take some time after being on the right dose of diuretics to start feeling better. Hang in there.
Beth
Beth
plash561
08-12-2009, 11:38 PM
Beth,
I go in the morning to do blood work. I'm curious to find out what all my levels are. I've been watching my sugars a little bit but not too much. I really am trying to concentrate on the Gitelman's more than anything else right now. I am so sick of bananas I can't hardly eat them. I'm thinking about making some banana pudding (sugar free of course) I'm hoping that will help me want to eat them. I love tomatoes so I have been eating tons of them lately. I thought I would list the meds again to compare what you are on. I'm taking 40meq of Potassium twice a day, 100 mg Spironlactone twice a day, 1000mg magnesium oxide twice a day. I'll let you know what my pot. mag. & sugar levels are, I've made an arrangement with the lab & dr. to fax me the results at the same time they send them to the dr.'s, I'm glad that they are willing to do that for me. It will help me stay more in the loop. Have the dr.'s said anything to you about the do's and don'ts of exercising? I want to increase my stamina but I don't want to have any set backs either. I am so tired of being tired and weak, If riding the stationary recumbant bike 20 minutes a day will help I'm all for it. Give me some advice on this if you can, I know you have said that you used to hike and bike all the time with your children, have you been advised to slow that down or is your body telling you to stop? I'm just wanting to feel better. Help please. Thanks.
Patti
I go in the morning to do blood work. I'm curious to find out what all my levels are. I've been watching my sugars a little bit but not too much. I really am trying to concentrate on the Gitelman's more than anything else right now. I am so sick of bananas I can't hardly eat them. I'm thinking about making some banana pudding (sugar free of course) I'm hoping that will help me want to eat them. I love tomatoes so I have been eating tons of them lately. I thought I would list the meds again to compare what you are on. I'm taking 40meq of Potassium twice a day, 100 mg Spironlactone twice a day, 1000mg magnesium oxide twice a day. I'll let you know what my pot. mag. & sugar levels are, I've made an arrangement with the lab & dr. to fax me the results at the same time they send them to the dr.'s, I'm glad that they are willing to do that for me. It will help me stay more in the loop. Have the dr.'s said anything to you about the do's and don'ts of exercising? I want to increase my stamina but I don't want to have any set backs either. I am so tired of being tired and weak, If riding the stationary recumbant bike 20 minutes a day will help I'm all for it. Give me some advice on this if you can, I know you have said that you used to hike and bike all the time with your children, have you been advised to slow that down or is your body telling you to stop? I'm just wanting to feel better. Help please. Thanks.
Patti
beth67
08-13-2009, 05:26 PM
I take 50mg of spironolactone one time a day and amiloride 10mg one time a day. Last october at my first kindey dr. visit he put me on the spironolactone. I had labs done in early December and then saw him and my potassium wasn't as high as he would like so he put me on the amiloride. My lowest potassium number was 3.1 and now it's 4.2. The range my lab goes by is 3.5-5.1 for normal so I'm in the middle right now. You might want to ask your doctor about putting you on amiloride if your numbers are not up with this next test. I also take 1,000mg magnesium. My numbers were not horribly low but low enough to add some extra magnesium. I also have decreased my calcium to 600mg from 1,200 because I read if you take too much calcium your body will pee it out and your magnesium will go with it. I'm still really tired. I just want to lay back down in bed all day and have to fight it. My kidney dr. says my numbers are fine so it has to be the celiac disease. I haven't been on a gluten free diet long enough to start feeling better I think and also I haven't investigated ingredients in my medication that can have gluten and my lotion and makeup so I could be getting some hidden gluten there. I'm starting to realize this gluten free lifestyle is going to take some time to adjust to. I'm sure it will become second nature. I am afraid to do strenuous exercise like hiking and running around the yard with the kids. I'm so worried about my muscles. One thing I think I should try to do is as least walk to the mail box. It's about 1/4 mile. I've done it a couple of times in the last month and was ok. I should make a habit of it. I think in a couple of months after being on the diet and my intestines heal and can absorb nutrients I'll try to do a little more. I was reading the side effects of spironolactone and the first side effect listed is drowsiness so I would think you being on such a high dose could be causing you to be so tired. The amiloride doesn't have drowsiness on its side effects. Perhaps a lower dose of spironolactone and a little of the amiloride might work. Too bad you couldn't see my doctor. He actually knew Dr. Gitelman and he is well versed in the whole Gitelman syndrome. He was careful about not putting me on too much spironolactone because of the side effects and thats why i think he added the amiloride instead of upping the spironolactone. Let me know what your labs are when you get them. Take care.
Beth
Beth
plash561
08-13-2009, 08:13 PM
Beth,
it would be nice if I could see your dr. My potassium is up to 3.8, magnesium up to 1.5. Those are better, I wish I understood why I'm having such a bad day if the levels are up that much. I was disoriented this morning and feeling a little nauseous, very tired, heart palps. I didn't feel as bad as I did 2 weeks ago but it wasn't far off. I just don't get it.
My calcium levels are fine, she doesn't want to do anything with that, I'm glad, I'm already taking enough pills a day. I've heard that gluten free is not easy, it's doable but you really have to be diligent. A friend I have in Colorado struggles with it everyday. I'm glad that your pot. & mag. are at good levels. I can't wait for mine to be better, but mostly I want to feel better. Well my hubby is home with dinner and I think it will be an early night for me tonight. I wish I could get in a full day at work. Talk to you soon. Take care.
Patti
it would be nice if I could see your dr. My potassium is up to 3.8, magnesium up to 1.5. Those are better, I wish I understood why I'm having such a bad day if the levels are up that much. I was disoriented this morning and feeling a little nauseous, very tired, heart palps. I didn't feel as bad as I did 2 weeks ago but it wasn't far off. I just don't get it.
My calcium levels are fine, she doesn't want to do anything with that, I'm glad, I'm already taking enough pills a day. I've heard that gluten free is not easy, it's doable but you really have to be diligent. A friend I have in Colorado struggles with it everyday. I'm glad that your pot. & mag. are at good levels. I can't wait for mine to be better, but mostly I want to feel better. Well my hubby is home with dinner and I think it will be an early night for me tonight. I wish I could get in a full day at work. Talk to you soon. Take care.
Patti
sam56
08-15-2009, 02:59 AM
Wish everyone was feeling better. Patti, I was right behind you in the hospital again. I had a drs. appt. Tuesday and she sent me staight over. I was so glad my mom happened to be down, we had planned on shopping after my appt. I was so weak my legs were shot. My Pot. was 2.8, mag was ok. I take 120meq's a day. The er dr. said he had never seen such a high amount so my kidneys must be kicking out alot since I'm not sustaining it. So...3 days IV therapy, I was up to 3.5 last blood draw. I feel no better, weak, tired, spasms. Laid down all day today but didn't sleep. My dr. talked me into filing for disability insurance. I've had to take so much time off since January. I work on my feet all shift too except for charting, breaks, ect.
I wish I could put into words the emotions I'm going through. Where did my life go? Where did my smile go?
I sure don't want to bring you guys down. You've been such a help to me and I really appreciate it. Hugs to all
Sally
I wish I could put into words the emotions I'm going through. Where did my life go? Where did my smile go?
I sure don't want to bring you guys down. You've been such a help to me and I really appreciate it. Hugs to all
Sally
plash561
08-15-2009, 09:16 PM
Sally,
what did the dr's say about what may have triggered your potassium loss? They can't figure out what triggered mine. What meds are you taking? Do you have other issues besides Gitelman's that is causing the dr. to tell you to apply for disability? I know my insurance co. is acting different. They are having a registered nurse call me weekly to check on me to see how I'm feeling, she is encouraging me to use the free counseling sessions they offer to help me cope with this. She's not being doom and gloom or anything, it's just unusual to me. I understand what you mean about al the emotions, our lives are changed by this and I know I don't always portray a positive attitude but I'm trying. I refuse to let this disease get the best of me. Today I made myself go peach picking with my grandson, daughter and husband. I had to sit alot and I'm exhausted now. I hurt all over but I went and spent some great time with my family. All I've wanted to do for the past year and a half is lay around, I won't do it anymore, I hurt anyway so I might as well make the most of it. Since I've been home from the hospital it's been the worst. I can't work full days at our business, thank God we have a great staff and they are taking care of a lot for me. Sally, everybody handes this differently, keep your chin up. I'm hoping all the meds will help me feel better. I don't know if you saw that I posted what meds I'm on and Beth has posted what she's taking, maybe you can talk with your dr. to see if you need to be on something else or more of what you're already taking. The last couple of days I have been trying to drink sports drinks instead of just water or my favorite ices tea, a dr. in England suggested it to me saying that it might help. Hang in there.
Patti
what did the dr's say about what may have triggered your potassium loss? They can't figure out what triggered mine. What meds are you taking? Do you have other issues besides Gitelman's that is causing the dr. to tell you to apply for disability? I know my insurance co. is acting different. They are having a registered nurse call me weekly to check on me to see how I'm feeling, she is encouraging me to use the free counseling sessions they offer to help me cope with this. She's not being doom and gloom or anything, it's just unusual to me. I understand what you mean about al the emotions, our lives are changed by this and I know I don't always portray a positive attitude but I'm trying. I refuse to let this disease get the best of me. Today I made myself go peach picking with my grandson, daughter and husband. I had to sit alot and I'm exhausted now. I hurt all over but I went and spent some great time with my family. All I've wanted to do for the past year and a half is lay around, I won't do it anymore, I hurt anyway so I might as well make the most of it. Since I've been home from the hospital it's been the worst. I can't work full days at our business, thank God we have a great staff and they are taking care of a lot for me. Sally, everybody handes this differently, keep your chin up. I'm hoping all the meds will help me feel better. I don't know if you saw that I posted what meds I'm on and Beth has posted what she's taking, maybe you can talk with your dr. to see if you need to be on something else or more of what you're already taking. The last couple of days I have been trying to drink sports drinks instead of just water or my favorite ices tea, a dr. in England suggested it to me saying that it might help. Hang in there.
Patti
sam56
08-16-2009, 02:51 AM
Patti,
I'm glad you're doing better and getting out more. They don't know why my pot. dropped like that. The doctor calls it fluxuating enzymes. It has happened 4 times now since Jan09'. I let my doctor know it worries me because if my body were to absorb the amount of pot. I'm taking I would have a heart attack. The er doc shared that with me. I wish it was like diabetes...I can monitor my glucose anytime.
As far as the disability goes, it was my doctor who suggested I might want to consider it. I work as a tech in the ER. The pace of work has been getting harder and harder. Some eves if they're REALLY short on another floor I will float, but, then again its just as busy there. I hate taking so much time off but they have been really nice to me about it. I've worked there 11yrs.
I've been going to counceling for awhile now. I really like the woman I'm seeing. It helps some. She has the approach of dealing with this like a "loss". I was so active before. She stresses being realistic. Well, for me thats kind of hard when I have no answers as to will I get better? Is this something I will have to learn to live with? The doctors don't know either as they don't have the answers to my questions.
I'm on the exact same meds ( I posted them ) as before. My doc thinks I could be experiencing HKPP symptoms. I had no feeling below my knees this time but it returned after the first bag of Potassium.
How has your weekend been going? The peaches made me want some! They are so good this time of the year. Have a great Sunday!
Sally
I'm glad you're doing better and getting out more. They don't know why my pot. dropped like that. The doctor calls it fluxuating enzymes. It has happened 4 times now since Jan09'. I let my doctor know it worries me because if my body were to absorb the amount of pot. I'm taking I would have a heart attack. The er doc shared that with me. I wish it was like diabetes...I can monitor my glucose anytime.
As far as the disability goes, it was my doctor who suggested I might want to consider it. I work as a tech in the ER. The pace of work has been getting harder and harder. Some eves if they're REALLY short on another floor I will float, but, then again its just as busy there. I hate taking so much time off but they have been really nice to me about it. I've worked there 11yrs.
I've been going to counceling for awhile now. I really like the woman I'm seeing. It helps some. She has the approach of dealing with this like a "loss". I was so active before. She stresses being realistic. Well, for me thats kind of hard when I have no answers as to will I get better? Is this something I will have to learn to live with? The doctors don't know either as they don't have the answers to my questions.
I'm on the exact same meds ( I posted them ) as before. My doc thinks I could be experiencing HKPP symptoms. I had no feeling below my knees this time but it returned after the first bag of Potassium.
How has your weekend been going? The peaches made me want some! They are so good this time of the year. Have a great Sunday!
Sally
plash561
08-16-2009, 02:59 PM
Sally,
It has to be more frustrating for you since you work in the medical field. You have dr's you can talk to but this disease is so rare most dr's have never heard of it. Have you found any websites other than the google one's? I did email the dr at Addenbrooke's in England. She's the one that told me about the sports drinks. My glucose is a little high so I've been trying the one's that don't have sugar. My big problem is I really like unsweetened tea. The sweet drinks just don't quench my thirst, I'm backing off the tea because of the caffeine. So it's hard to find something I enjoy drinking. Are you diabetic? You may have said that in the past-sorry I don't remember. I've read that the low potassium can make your glucose raise, have you seen anything like that? Are you seeing a Nephrologist? It sounds like you are having a really hard time, I wish someone could figure this one out for all of us. My Nephrologist has been a Godsend, my reg dr. is basically clueless about how to handle me. She thinks I have fibromyalgia and type II diabetes. Well as we know fibro doesn't have the salt wasting or low potassium and magnesium. I plan on giving her one more try to trust her again and then if I don't feel comfortable I'm finding a new doc. I really hate it because she has been so supportive for about 10 yrs. She always listened and never treated me like I didn't know my own body. The peaches are great, what part of Illinois do you live in? It was a good thing my family took me, I used to go with my kids when they were little and be out all day, we were there maybe an hour and a half. The 3-1/2 yr old grandson did most of the picking for me, he has the energy and liked helping. I plan on cutting them up and freezing them later today, we'll see how much energy I have then, not very much right this moment. It took alot out of me, but I really needed to be with my family. I feel secluded a lot because all I do is work and go home. We used to be out with people and do a lot of things. I miss it. Do you think that the counseling is a good idea for me too? I do find it helpful to be able to write back & forth with all of you on this board. I know I cangripe and complain without being judged, you all understand.
I have not experienced anything like the HKPP you have suffered with, I am so sorry you have to deal with that too. Bless your heart. I hope your day is relaxing and enjoyable. Take care of yourself.
Patti
It has to be more frustrating for you since you work in the medical field. You have dr's you can talk to but this disease is so rare most dr's have never heard of it. Have you found any websites other than the google one's? I did email the dr at Addenbrooke's in England. She's the one that told me about the sports drinks. My glucose is a little high so I've been trying the one's that don't have sugar. My big problem is I really like unsweetened tea. The sweet drinks just don't quench my thirst, I'm backing off the tea because of the caffeine. So it's hard to find something I enjoy drinking. Are you diabetic? You may have said that in the past-sorry I don't remember. I've read that the low potassium can make your glucose raise, have you seen anything like that? Are you seeing a Nephrologist? It sounds like you are having a really hard time, I wish someone could figure this one out for all of us. My Nephrologist has been a Godsend, my reg dr. is basically clueless about how to handle me. She thinks I have fibromyalgia and type II diabetes. Well as we know fibro doesn't have the salt wasting or low potassium and magnesium. I plan on giving her one more try to trust her again and then if I don't feel comfortable I'm finding a new doc. I really hate it because she has been so supportive for about 10 yrs. She always listened and never treated me like I didn't know my own body. The peaches are great, what part of Illinois do you live in? It was a good thing my family took me, I used to go with my kids when they were little and be out all day, we were there maybe an hour and a half. The 3-1/2 yr old grandson did most of the picking for me, he has the energy and liked helping. I plan on cutting them up and freezing them later today, we'll see how much energy I have then, not very much right this moment. It took alot out of me, but I really needed to be with my family. I feel secluded a lot because all I do is work and go home. We used to be out with people and do a lot of things. I miss it. Do you think that the counseling is a good idea for me too? I do find it helpful to be able to write back & forth with all of you on this board. I know I cangripe and complain without being judged, you all understand.
I have not experienced anything like the HKPP you have suffered with, I am so sorry you have to deal with that too. Bless your heart. I hope your day is relaxing and enjoyable. Take care of yourself.
Patti
plash561
08-16-2009, 03:09 PM
Sally,
I just looked back at a couple of your posts, I saw you are diabetic, sorry I didn't remember. Did you look into the Spironolactone? I talked to my dr. about Amiloride and she said that the Spironolactone has better potassium sparing properties. Some dr's like one or the other, I think Beth has been on both. I am also having a hard time feeling comfortable with driving, the dizziness and trouble with concentration sometimes makes me stay away for right now. I'm grateful we own our own business and my husband drives everyday, I can stay home sometimes and he'll come pick me up-we only live 10 minutes away. Well that's all, have a great day-I'm trying to.
Patti
Patti
I just looked back at a couple of your posts, I saw you are diabetic, sorry I didn't remember. Did you look into the Spironolactone? I talked to my dr. about Amiloride and she said that the Spironolactone has better potassium sparing properties. Some dr's like one or the other, I think Beth has been on both. I am also having a hard time feeling comfortable with driving, the dizziness and trouble with concentration sometimes makes me stay away for right now. I'm grateful we own our own business and my husband drives everyday, I can stay home sometimes and he'll come pick me up-we only live 10 minutes away. Well that's all, have a great day-I'm trying to.
Patti
Patti
plash561
08-20-2009, 10:25 PM
Beth,
how are you feeling? Any news about the Celiac diagnosis? I went for more blood work this morning, got the results this afternoon, my pot. 4.1, mag 1.7, I'm pleased with the results. Still feel like crap and hurt but there's some light at the end of the tunnel. Today has been a good day, yesterday wasn't, day before was good, I just go back and forth without consistancy. I'm trying to drink sports drinks (low calorie), and eat more almonds and raisins-both very high in potassium. The nurse from Cambridge University gave me the advice about sports drinks and to be careful if I want to exercise, taking it easy. She has been very nice about emailing me. she is at Addenbrookes Hospital which is part of Cambridge.
Sally is having a really hard time, she hasn't posted in a few days but sounds really down. I hope you are doing well. Take care.
Patti
how are you feeling? Any news about the Celiac diagnosis? I went for more blood work this morning, got the results this afternoon, my pot. 4.1, mag 1.7, I'm pleased with the results. Still feel like crap and hurt but there's some light at the end of the tunnel. Today has been a good day, yesterday wasn't, day before was good, I just go back and forth without consistancy. I'm trying to drink sports drinks (low calorie), and eat more almonds and raisins-both very high in potassium. The nurse from Cambridge University gave me the advice about sports drinks and to be careful if I want to exercise, taking it easy. She has been very nice about emailing me. she is at Addenbrookes Hospital which is part of Cambridge.
Sally is having a really hard time, she hasn't posted in a few days but sounds really down. I hope you are doing well. Take care.
Patti
sam56
08-24-2009, 08:54 AM
Hi Patti,
Thanks so much for your encouragement. I had two appts. last week and see my nephrologist Wednesday. I feel a bit better. Had one day I felt great...couldn't believe it! Next day I was almost to weak to walk. What we don't go through. My reg. doctor sounds alot like yours...clueless, although she has been consulting with my kidney doctor. I'm so tired of all these appointments. If I could see a light at the end of this tunnel I don't think I would mind so much. Still no answers. Seems like last week I just kept repeating myself about the er doctor who said a "normal person" heart would stop with the amount of Potassium I'm taking. My reg. doctor just looked at me and then back looking at my chart. It makes me feel as though she is concerned about this too. I don't know. See what this week brings.
I'm a big ice tea drinker too. What I've been doing is just making it weak so the caffeine doesn't bother me. This summer is the first I haven't made sun tea.
Patti, I hope your doctor does an OGTT to check for sure your glucose status. At first mine was insulin resistance....three mos. later type2. This all happened around the same time as my diagnosis with Gitelmans. I was always healthy before, then hit the big 50 and everything went south. I'm really glad I decided to go for counciling. Thats one appointment I like going to. I know its good for me because I'm feeling better emotionally and seem to deal with the stress better. I do take a med for anxiety if I feel I need it. Glad I decided to do that too. I was putting my cart back at walmart last week..they were all jammed in there and I was having a rough time with my legs so I just shoved it in with the others and a man came running up to me...red in the face... yeliing at me "are YOU going to leave your cart like that" looked at me and just shook his head like..well, you know. Talk about stressed out. I should have offered him a pill!
My son and grandaughter are coming this next weekend so I'm really looking forward to that. Hope I have a few good days so I can do some "special" cooking for them. I've found out I do better if I pace myself. It's just hard for me to do when I was so used to being on the go all the time. There was alot of fun things in town to go to this past weekend with all the students back in town but had to pass on them this year.
I've been doing some research on HKPP. There are alot of types of this too with no known cures...just a large range of symptoms. I sure want to keep away from having another episode of that!
Let me know how you're doing. Hope Beth is ok. I noticed she hasn't posted in awhile. Take care.
Sally
Thanks so much for your encouragement. I had two appts. last week and see my nephrologist Wednesday. I feel a bit better. Had one day I felt great...couldn't believe it! Next day I was almost to weak to walk. What we don't go through. My reg. doctor sounds alot like yours...clueless, although she has been consulting with my kidney doctor. I'm so tired of all these appointments. If I could see a light at the end of this tunnel I don't think I would mind so much. Still no answers. Seems like last week I just kept repeating myself about the er doctor who said a "normal person" heart would stop with the amount of Potassium I'm taking. My reg. doctor just looked at me and then back looking at my chart. It makes me feel as though she is concerned about this too. I don't know. See what this week brings.
I'm a big ice tea drinker too. What I've been doing is just making it weak so the caffeine doesn't bother me. This summer is the first I haven't made sun tea.
Patti, I hope your doctor does an OGTT to check for sure your glucose status. At first mine was insulin resistance....three mos. later type2. This all happened around the same time as my diagnosis with Gitelmans. I was always healthy before, then hit the big 50 and everything went south. I'm really glad I decided to go for counciling. Thats one appointment I like going to. I know its good for me because I'm feeling better emotionally and seem to deal with the stress better. I do take a med for anxiety if I feel I need it. Glad I decided to do that too. I was putting my cart back at walmart last week..they were all jammed in there and I was having a rough time with my legs so I just shoved it in with the others and a man came running up to me...red in the face... yeliing at me "are YOU going to leave your cart like that" looked at me and just shook his head like..well, you know. Talk about stressed out. I should have offered him a pill!
My son and grandaughter are coming this next weekend so I'm really looking forward to that. Hope I have a few good days so I can do some "special" cooking for them. I've found out I do better if I pace myself. It's just hard for me to do when I was so used to being on the go all the time. There was alot of fun things in town to go to this past weekend with all the students back in town but had to pass on them this year.
I've been doing some research on HKPP. There are alot of types of this too with no known cures...just a large range of symptoms. I sure want to keep away from having another episode of that!
Let me know how you're doing. Hope Beth is ok. I noticed she hasn't posted in awhile. Take care.
Sally
beth67
08-24-2009, 01:29 PM
Hello, I have family visiting so I'll be checking in not so much. Doing ok except eating really bad with family here so I feel inflamed. Food triggers are a big thing with me. I notice I do feel better if I stay on a schedule and take my meds at the same time and go to bed and wake up at the same time. Gatorade works for me but I think it's the sodium that helps since diuretics get rid of salt. I'm going in for an endoscopy on the 25th for the celiac disease. Doctor wants to make sure there are not any cancerous growths or other damage from eating gluten. Not too worried about it. My new policy is not to worry about anything until there is concrete proof that I need to worry. I'll check back once in a while but may be busy with family for the next two weeks. Take take all.
Beth
Beth
plash561
08-25-2009, 12:30 AM
Sally,
I've been emailing with a nurse at a Gitelman's Clinic in England. She said that I should get to the point that I can feel my magnesium and potassium being low and to add some snacks that are high in both. So I started reading up on what would be good things for me to eat when I'm feeling shaky and weak. The last few days I've been eating the raisins, almonds (salted) and the sports drinks. I found out yesterday that peanuts are really high in potassium and magnesium. I've noticed a difference in how I feel about 30 minutes after. The nurse said I should be able to read my body like a diabetic does. From what I've read the salt is an important component, it helps the potassium and magnesium stay in your system. The magnesium is the most important becasue it helps regulate the potassium. Maybe adding more magnesium would be good for you for a while. I'm not the dr. but maybe mention it when you go see your nephrologist. I've really been searching for things to make me feel better, and I feel like I'm on a mission, I'm sick of being sick and tired of not being able to enjoy my life. And like you said I want my smile and my life back. Today was a good day, I'm tired but I think this is the best I've felt in a couple of years. I don't know what tomorrow will bring bring but I'm going to keep on trying. As far as the jerk at Walmart, it's so easy for people to judge and not have a clue what's going on with someone else, it probably wouldn't have done any good to explain to him you were having a rough time, he probably needed a big pill. I try to be compassionate towards other people and give them the benefit of the doubt because you never know what their day has been like or what they are going through. Hopefully he got over it, if not, too bad. You keep hanging in there, if you don't get the help you need find another dr. life is too short for us to spend it miserable and with dr's that are clueless. I go back to my primary on Friday and if I don't get the help and concern I need from her then I'm moving on. What part of Illinois do you live in? I live near St. Louis. My nephrologist is great and she has handled Gitelman's patients before, only 3 but that's 3 more than my primary. You take care, I'll be praying for you this week. Don't let this eat you up inside keep your chin up.
Patti
I've been emailing with a nurse at a Gitelman's Clinic in England. She said that I should get to the point that I can feel my magnesium and potassium being low and to add some snacks that are high in both. So I started reading up on what would be good things for me to eat when I'm feeling shaky and weak. The last few days I've been eating the raisins, almonds (salted) and the sports drinks. I found out yesterday that peanuts are really high in potassium and magnesium. I've noticed a difference in how I feel about 30 minutes after. The nurse said I should be able to read my body like a diabetic does. From what I've read the salt is an important component, it helps the potassium and magnesium stay in your system. The magnesium is the most important becasue it helps regulate the potassium. Maybe adding more magnesium would be good for you for a while. I'm not the dr. but maybe mention it when you go see your nephrologist. I've really been searching for things to make me feel better, and I feel like I'm on a mission, I'm sick of being sick and tired of not being able to enjoy my life. And like you said I want my smile and my life back. Today was a good day, I'm tired but I think this is the best I've felt in a couple of years. I don't know what tomorrow will bring bring but I'm going to keep on trying. As far as the jerk at Walmart, it's so easy for people to judge and not have a clue what's going on with someone else, it probably wouldn't have done any good to explain to him you were having a rough time, he probably needed a big pill. I try to be compassionate towards other people and give them the benefit of the doubt because you never know what their day has been like or what they are going through. Hopefully he got over it, if not, too bad. You keep hanging in there, if you don't get the help you need find another dr. life is too short for us to spend it miserable and with dr's that are clueless. I go back to my primary on Friday and if I don't get the help and concern I need from her then I'm moving on. What part of Illinois do you live in? I live near St. Louis. My nephrologist is great and she has handled Gitelman's patients before, only 3 but that's 3 more than my primary. You take care, I'll be praying for you this week. Don't let this eat you up inside keep your chin up.
Patti
plash561
08-25-2009, 12:33 AM
Beth, I will be praying for you tomorrow, hopefully everything will go well with the endoscopy. Let us know how it goes. Enjoy your family time, have fun. Take care. I'll be thinking about you.
Patti
Patti
beth67
09-08-2009, 09:41 PM
How is everyone. My sister left today. Unfortunatley I was sick with a cold most of the time. Still feeling achy and tired. Must be the celiac disease. I go in for my endoscopy next Tuesday. I'll let you know how it goes.
Beth
Beth
plash561
09-09-2009, 12:43 AM
Beth,
sorry to hear you have a cold, I'm sure it only adds to the aches and pains. Is that why you haven't had the endoscopy yet? I had to call the dr and ask for blood work last week, I just felt bad and knew levels were low. I was afraid that it was low enough to put me in the hospital again but the dr gave me the choice of iv's or doubling my meds that have already been doubled and to rest for a few days, I of course took the latter. I went for more blood work Sat. and go again tomorrow to see where I am. Taking all these pills is really a pain but I'd rather do that than end up in the hospital. Beth did you say you are on Mag Tabs SR? If so, where do you get them? I've found a couple online places, one that sells 1000 for $145.00. If this is what you take let me know please. I hope everything goes well next week, keep me posted.
Patti
sorry to hear you have a cold, I'm sure it only adds to the aches and pains. Is that why you haven't had the endoscopy yet? I had to call the dr and ask for blood work last week, I just felt bad and knew levels were low. I was afraid that it was low enough to put me in the hospital again but the dr gave me the choice of iv's or doubling my meds that have already been doubled and to rest for a few days, I of course took the latter. I went for more blood work Sat. and go again tomorrow to see where I am. Taking all these pills is really a pain but I'd rather do that than end up in the hospital. Beth did you say you are on Mag Tabs SR? If so, where do you get them? I've found a couple online places, one that sells 1000 for $145.00. If this is what you take let me know please. I hope everything goes well next week, keep me posted.
Patti
beth67
09-14-2009, 08:55 PM
Hi Patti, no i'm not on mag tabs. I take jigsaw brand magnesium 1,000mg a day. I go in for the endoscopy tomorrow. I've had to eat gluten to prepare for it and I've been getting really bad stomach cramps. I'll write in a few days and let you all know how it went. Did you ask your doctor about going on Amiloride. Sometimes the combo of spironolactone and amiloride work better than spironolactone alone.