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Old 01-27-2009, 05:20 PM   #1
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Gitelman's syndrome or low potassium

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

Last edited by Administrator; 10-18-2009 at 06:59 PM.

 
Old 01-31-2009, 07:39 PM   #2
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Re: Anyone with Gitelman's syndrome or low potassium

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.

 
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Old 01-31-2009, 11:41 PM   #3
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Re: Anyone with Gitelman's syndrome or low potassium

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

 
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Old 02-01-2009, 04:56 PM   #4
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Re: Anyone with Gitelman's syndrome or low potassium

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.

Last edited by moderator2; 02-01-2009 at 08:20 PM.

 
Old 02-01-2009, 07:54 PM   #5
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Re: Anyone with Gitelman's syndrome or low potassium

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.

 
Old 02-01-2009, 08:58 PM   #6
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Re: Anyone with Gitelman's syndrome or low potassium

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.

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?

Last edited by wildgoose; 02-01-2009 at 09:02 PM. Reason: spelling

 
Old 02-02-2009, 10:17 AM   #7
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Re: Anyone with Gitelman's syndrome or low potassium

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

 
Old 02-02-2009, 10:56 PM   #8
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Re: Anyone with Gitelman's syndrome or low potassium

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

 
Old 02-02-2009, 11:21 PM   #9
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Re: Anyone with Gitelman's syndrome or low potassium

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

 
Old 02-03-2009, 06:56 PM   #10
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Re: Anyone with Gitelman's syndrome or low potassium

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.

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.

 
Old 02-04-2009, 03:02 PM   #11
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Re: Anyone with Gitelman's syndrome or low potassium

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

 
Old 02-04-2009, 06:45 PM   #12
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Re: Anyone with Gitelman's syndrome or low potassium

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.

Good luck, and if that same doc prescribed the potassium and the spironolactone - I'd take it.

Hope you feel better soon.

 
Old 02-15-2009, 07:42 AM   #13
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Re: Anyone with Gitelman's syndrome or low potassium

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)

 
Old 02-17-2009, 11:33 AM   #14
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Re: Anyone with Gitelman's syndrome or low potassium

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

 
Old 04-17-2009, 10:47 AM   #15
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Re: Anyone with Gitelman's syndrome or low potassium

Any of you guys still reading this thread? I too have had a long history of potassium problems.

Last edited by Timber; 04-23-2009 at 01:55 PM.

 
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