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View Full Version : Gitelman's Patients - I need help please!!!!


plash561
10-18-2009, 10:08 PM
Looking for other people who have Gitelman's. I've been messaging with a few others and was wondering if there was anyone new out there with positive stories and methods of getting through this disease. Thanks:wave:

beth67
10-19-2009, 10:41 AM
Hi Patti, I was a little confused about the new thread were supposed to start. Did you look into it and thats why were on the rare disorders page? Anyways, hope you are having an ok day. I'm ok. A little tired of being tired as I'm sure you are. I need to go in for more blood work next month and it will be interesting to see if my potassium has gone up since i'm on the gluten free diet. Potassium in supposed to be absorbed in the small intestine and thats where most of the damage is done in celiacs. I have to ask my kidney dr. for the labs. I have to get thyroid blood work done and since I tend to almost pass out during a blood test I want to be checked for as much as I can. My kidney dr. doesn't always give out those labs freely but I nag him because I like to know whats going on inside me. I want to get a test called ELISA which tests for egg, soy, nut, dairy, wheat allergies. Celiacs tend to have multiple food and autoimmune problems so I want to be ahead of all this and catch any problems before they get worse. I'm still looking for that perfect doctor that looks at all angles and doesn't think I'm crazy when I ask questions or request tests. I don't think that kind of dr. exists. I get a little tired of being a disease researcher and having to come to the dr. with my evidence and say test me for this. Isn't that their job? Oh well. Beautiful day here. Venus shining bright over the mountains and reflected in a pond that's on the way to my sons school. Very cold. 30 degrees but no snow yet. Hope you gitelman's girls are hanging in there.

Beth

plash561
10-19-2009, 02:11 PM
Beth,
My nephrologist faxes me the results within a couple of days of getting labs done. She knows that I want to keep on top of it and adjust my meds accordingly. Don't feel like it's nagging, just taking care of yourself. I get really tired of dealing with my regular dr. also, she actually sent an inquiry to my neph. about why I'm on such high doses of potassium and magnesium, my gosh I personally gave her a file with all the the information I've printed out and all the emails I've gotten from the Gitelman's clinic in the UK.
I don't know what else I can do to get her on board. I am very grateful for my neph. she doesn't treat me like a hypochondriac, she listens and encourages me to be proactive about this. I will probably start looking for another reg. dr. soon. I have an appt. in Nov., we'll see how it goes. I had labs done last Thursday, my potassium was up to 4.0 and magnesium still a little low at 1.5. I'm taking the Mag Tabs now and I think that is why my potassium was up, I'm going to add one more Mag Tab a day to see if it helps. 3 of those a day is definitely better than 16 of the mag oxide. I can say that I dont' hurt as much as I did before the Mag Tabs and I really don't miss the side effects of mag ox. I just have to remember we care more about what's going on with us than anyone else and it's up to us to stay on top of it, dr.'s are human and they deal with alot of patients, we can put our efforts on us. I used to just do what the dr. told me to do, now I am in on the decision on what I'm going to do and tell them if I am going to do it or not. Today I'm home because my back is killing me. I'm still getting over a cold I had last week, a couplpe of weeks ago I sprained my ankle (not the one I broke in April), I am so tired of all of this. I'm sitting on my couch with a heating pad on my back, I hope it feels better, I have a busy week to deal with and don't have time for this. I hope you can get them to do the testing that's necessary. Good luck with that. It's beautiful here too, sunny and 70 degrees. Last week was so dreary, rainy and cold. I'll take these warm autumn days. Take care.
Patti

sam56
10-20-2009, 09:18 PM
Hi girls...thanks Patti for the help. I was in the wrong place. Did you both get a flu shot? I said no last visit when offered because of getting the flu after taking the shot in 02'. I realize the flu would be horrible for any of us if we couldn't keep the Pot. pills down. Just wondering?
Beth, I hope you find "the best doctor". I'm sure there are ones that exist. I can't remember Beth, but were you definitely diagnosed with Gitelmans? You really do alot of research. I need to get back into that frame of mind. Sometimes with the pain I've had it's hard to concentrate on reading of any kind.
See the dr. on Thursday.
Everyone take care.

beth67
10-20-2009, 10:56 PM
My kidney doctor said it was a Gitelman's like syndrome. He said there wasn't a specific name for my condition but after I read research on Gitelman's I couldn't distinguish myself from a Gitelman's person. I basically have the same symptoms. I have the low blood potassium with the high urine potassium excretion with metabolic acidosis which is what he said is causing the tingling around the mouth. I don't see how I'm different than another patient that fits the criteria perfectly. I'm starting to think I might be lactose intolerant. I'm a little in denial about this. I had milk in my coffee this morning and about two hours later I had really bad cramping then diarrhea. It got better after a few hours. Then for dinner I had some cheese on my taco and about two hours later I started to get the bad cramping again. I had been off dairy for awhile and maybe the sudden insurgence was too much for me. I don't know. I'm going to definitely ask my doctor for the food allergy blood test. I really don't want to do a month long elimination diet to find out what I'm allergic to. I just want it in black and white and only have to wait a few days for the results.

As for the flu shot, I've been trying to talk myself into getting it. I really don't want to because I don't like the idea on something being injected into my blood stream that will start up my immune system. I'm worried about it going into overdrive and triggering another auto immune disease. I do have asthma and I did get the flu one year when I didn't get the shot and I had a really bad time. I was sucking down inhalers like crazy to keep my lungs functioning. It was awful. I will probably go get the seasonal flu shot tomorrow. I don't know about the swine flu shot though. That is with a live virus. I have an acquaintance that has MS and she had a big flare up after getting the live virus. She was bed ridden for several days. MS is an auto immune disease so I'm guessing the live virus made her auto immune system go a little crazy. I have three auto immune diseases. Hashimotos thyroiditis, asthma and celiacs. Supposedly I don't have hashimotos anymore because I had my thyroid removed but still I have enough immune system stuff going on. I don't think I want to over activate it.

Beth

plash561
10-21-2009, 06:49 PM
Sally,
I go back and forth on the research, I have to be in the mood and sometimes I just need to not think about all of it, other times I can't get enough. There are times when i just want to see if there's anything new out there. I'm not finding much of that. I did get the flu shot yesterday while I was at the dr. for my back. I think I'll be fine, I don't normally get it but decided this year with the Gitelman's it would be a good idea. I doubt I will get the H1N1, the nurse at my dr's office said that the media is blowing it way out of proportion, they don't even have the vaccine at their location yet, maybe next week. But she said it won't be any worse than the regular flu. I kind of think I already had it last week, it sure made me feel awful. I hope you are feeling better, I've been thinking about you since your ER visit. I've been worried about you and praying you will get some answers and help. I don't know what I'd do without my Nephrologist right now, she is so caring and open minded with me. I wish you and Beth could see her. The nurse from the Gitelman clinic in England told me that my dr. is doing exactly what they would be doing. I have contacted her on many occasions just for advice on my treatment and if there were any other options out there. She has given me advice about work and exercise. Foods to avoid and foods to add to my diet. She has been extremely helpful. Let me know what the dr. says tomorrow. You know St. Louis isn't very far from you, you could come see my dr. if you would like another opinion. Just a thought. Take care.
Patti ;)

sam56
10-22-2009, 06:07 PM
Patti,
Hi! Back from my appointment. I just love my councilor. I saw her first this morning, then my doctor at 1p. I think I'm going to be looking for another reg. doctor very soon. Have to check with my insurance company to see how to go about it. Since she's my primary, I have to get all referrals from her first for specialists. She reminded me I was over-due for a colonoscopy. They cut out several polyps in 04', none cancerous but a few were borderline. She agreed with the ER doc that I should see a neurologist. I asked why, she didn't answer me. Went over labs taken the first week in Oct. and the ones in the ER...Both, electrolytes were way "out of bounds". No answer again when I asked what that meant. Kidney test of..something wrong with the urinalysis...something wrong with one of the 2 liver tests. Still no explanation. With all the medicine I take, I always worry about my liver being affected. I don't drink alcohol so I would guess it is from one of the medications, I don't know. Potassium 33. Mag was 1.5 the first part of Oct.,but was very high at the hospital. Whats going on I asked her. She just shook her head and said she didn't know. Maybe I'm not thinking straight, but I would think she would want to run some tests or something to find out. I walked out feeling disappointed and feeling weak and crappy. The whole city is out of the regular flu shot..I was going to get one.
My nephew has been going to Barnes every other month for his whole life. He's 17 now and I've taken him there myself several times to give my brother and sister in law a break. Would your nephrologist happen to be in that area? Of course I have to get a referral from her! ha. Mine has never treated anyone with Gitelmans so I don't see any problems with being able to go elsewhere.
What an earfull Patti, sorry.
Do you have any suggestions? I'd welcome anything .
It's raining buckets here, you're probably getting some too.
Thanks for hearing my rambling.

plash561
10-22-2009, 07:27 PM
Sally,
I will send you the info for my nephrologist. She goes to DePaul and Christian hospitals both are North County, Barnes is just outside the city of St. Louis. The 2 hospitals she goes to are about 20 -25 minutes from Barnes, She also has an office in Alton which is 15 minutes from my house, very convenient. So I guess I'm pretty blessed to have a dr. that has seen 3 other Gitelman's patients. I know I trust her and that means a lot to me. I hate the thought of getting a different PCP. But I'm not feeling the trust with my present dr. that I've always felt with her. She's been my PCP for at least 12 yrs. I think you definitely need a new one and really need the Nephrology part of the equation.
Was your potassium 3.3? What was your magnesium when you went to the hospital? Oh and don't ever worry about the earfull thing, that's why we're on here, to have sounding boards and a safe place. Vent and fill my ears all you want, there will be plenty of moments that I do the same thing. The dr. visit you have described sounds a lot like what I dealt with with mine right after my diagnosis in May. She totally discounted the whole Gitelman's thing, said I had Fibromyalgia, tried to put me on anti-depressants and muscle relaxers, took me off Ambien CR saying that's what was causing my dizziness, not even realizing that the dizziness could be caused by the Gitelman's. I cried when she left the room I was so disappointed with her reaction. She pretty much just blew it off like my Nephrologist was wrong. I would have thought after my stay in the hospital she would have gotten it. She did admit that she's never had a Gitelman's patient, I was surprised that she admitted it, but not surprised that she had no experience with the disease. She is clueless. The fact that you have other things going on, the diabetes and the magnesium going up makes me really think it's important for you to be seeing a kidney specialist.

There really is a lot of great info on there, some of it goes right over my head, but most of it is very helpful. There is also the Addenbrooke's site, the clinic at Cambridge.

I still don't get the Neurologist thing but I'm not a dr. are you sure they didn't say Nephrologist? How does your counselor feel about all of this? I'll email the info right away. Hang in there, maybe we can get you to someone who knows what they are doing soon.
Patti ;)

plash561
11-01-2009, 06:22 PM
Hey Beth, just checking to see how you're doing. I haven't seen anything on here from you or Sally. Just wondering how everyone is getting along.

Patti

beth67
11-03-2009, 03:50 PM
I haven't been feeling too great. I'm getting the weakness again and my heart is fluttery or fast beating sometimes. Had blood work done yesturday. The longer I'm off gluten the better my medications will work so I don't know if it's the thyroid medication or the gitelman's making me feel weird. I'll get results in a few days so well see. Still have annoying achiness in my low back and piriformis muscle which is a nag. Working on that with my physical therapist but I think the key is staying off gluten so my body can start absorbing things better then I think my muscles will be better. Hope Patti is ok. Freezing here but no snow yet which is odd. I love the snow. Talk to you later.

Beth

plash561
11-03-2009, 08:03 PM
Beth,
have you tried the Mag Tabs SR yet? I really think I'm feeling better because of them. I am under a lot of stress right now with my business and I really believe that I'm able to keep going because my mag is up. I get bloodwork done on the 9th and I'm really curious to see my numbers. I'm glad you're working with a physical therapist with your sciatica, my Mom had that problem and the PT really made a difference. Take care of yourself.
Patti

Muhammad Tahir
11-04-2009, 12:34 AM
i think u r suffering very badly now a days

beth67
11-05-2009, 10:09 PM
Patti, are the mag tabs sr by prescription? I have jigsaw brand from the store which have 500mg for four tablets and the magnesium type is dimagnesium malate. I'm now trying Now brand which are in gelatin caps which I like because I think they dissolve and absorb better. The type of magnesium in them is oxide, citrate and aspartate. I'm assuming thier better than the jigsaw brand because there are different types of magnesium in one pill and I'm thinking thats better. Not sure though. I've been taking 800 to 1,000mg a day. What source of magnesium is in the mag tabs sr.

I've been feeling fairly cruddy and now I know why. I thought it was my celiacs but my endocrinologist called today and said my potassium, sodium, calcium and chloride are all low. My potassium was 3.3. I was up to 4.2 in july. My sodium is 127 the lowest it's ever been. My calcium is 8.8. and my chloride is 94, the lowest it's ever been. I've been getting alot of tingling around the mouth and now it's been joined by a hot pin jabbing feeling. I've been getting muscle twitches and weakness and having a really hard time focusing and I feel disconnected and dizzy. Not having fun. I emailed my kidney dr. and I'm waiting to hear back from him. Hope everyone else is doing ok.

Beth

plash561
11-06-2009, 10:11 PM
Beth,
the Mag Tabs SR are magnesium lactate. From what we've been told magnesium lactate absorbs in your intestines not in your stomach like the other magnesiums. Mag Oxide absorbs in your stomach and takes on 300 times it's weight in fluid which causes the diarrhea. Since the lactate absorbs in your intestines it is absorbed better without the side effect. And the diarrhea causes you to lose potassium and magnesium so it kind of defeats the purpose. I was taking 16 of the Mag Oxide a day,which is 4000mg the Mag Tabs Sr I only take 3 a day, 7meq's each. So the 800 - 1000 mg you're taking may not be enough. Do a google search for the Mag Tab SR and you'll find them. They are also time released which helps a lot. The research nurse at Addenbrooke's told me that they work well for the Gitelman's patients they have. They have to buy them online from the US since they don't have them in the UK. I can't find them anywhere but online either. I would really talk to the kidney dr. about the type of mag you're taking versus other mags out there. But my kidney dr. didn't know about them until I told her, she did a little research and agreed that they were a very good option. I believe that the new magnesium is what is helping me feel better along with losing 20 lbs. It certainly isn't from lack of stress in my life. Between Mom passing away and business being really slow I definitely have a ton on my mind. I get labs done on Monday, keep your fingers crossed that all my levels are up. I will keep you in my prayers and hope you will feel better soon. I know I sound like a commercial or spokesperson for the magnesium, but if I find something that works and it could make anyone with Gitelman's feel better, I'll shout it from the rooftops. You take care of yourself and keep me posted.
Patti

beth67
11-13-2009, 05:02 PM
The nurse at my doctor's office called me back about my low sodium, potassium, chloride and calcium and said it was low because I drink too much water. I was actually a little dehydrated and they had to search for a vein during the test. I would like to know what their definition of too much water is so I'm going to write down all the liquids I consume for a few days and email them the results and ask if they think it's too much. If drinking too much is whats causing me to be tingly around the mouth and have muscle weakness and pain then I'll go on a water restriction diet but I don't think I'm drinking that much to dilute all my electrolytes. I feel there is not enough explaining things on their side. I'm still waiting for them to call me back because I have more questions. I think I really irritate them but I don't care. I'd like to understand what my body is up to. The thing is that I'm so thirsty all the time and I told the nurse that. She asked if I have diabetes but I don't think I do but I'm going to check my sugar for a few days before and after meals with my son's kit to see for sure. I went to the Addenbrook clinic site and that had some good info. My doctor said the muscle pain and thirst can't be due to Gitelman's but on the clinics site it listed that as some of the symptoms. I've actually have been doing ok for the last few days. I just don't like the unpredictable weakness. Hard to plan things when I worry it may be on one of my bad days. Hope you are all doing ok.

Beth

plash561
11-13-2009, 09:51 PM
Beth, I understand exactly what you mean about the unpredictable weakness with Gitleman's. I have a hard time when one day I'm feeling good and the next might be awful, it's very frustrating. The dr. needs to do some more research on Gitelman's. Thirst and muscle weakness are definitely part of this disease. What I was told by the nurse at Addenbrooke's is to add sports drinks to my diet instead of water. The water makes you pee more and takes the electrolytes with it. If you drink G2 it is unsweetened which is good calorie wise and if your sugar is off somewhat. But.....I've also read that Aspartame when digested grabs a hold of magnesium and makes you lose it faster. If you can find drinks that have some k in it they would help keep the right electrolytes in you. My daughter bought me some Skinny Water from Target, don't know if you have those up there. I don't think the Skinny Water has Aspartame in it, you might want to try that. I don't know about you but I'm not really into sweet drinks, I prefer unsweetened tea and water, but I know I need to drink the other stuff too. My fasting sugars have been running somewhere between 123 to 135, from the research I have done mag & k imbalance can coincide with glucose registering higher. My kidney dr. isn't as concerned about the glucose as she is getting my mag & k balanced. But she encourages me to watch sweets and carbs because it couldn't hurt. I have lost 23 lbs since May, I still need to start exercising which will help with the glucose too, I just haven't gotten there yet. My business is pretty much sucking the energy out of me right now because business is so bad. I do feel better since I've started the Mag Tabs SR, but I got my labs back yesterday and my K was only 3.7 it was 4.0 3 weeks ago, my mag was up at 1.6 from 1.5, I was hoping for higher numbers but I think the stress I'm under with work is making my levels lower. By the way, in the last 6 or 7 months my veins have been harder to get blood from too, the tech told me to drink 16 oz of water before I go get blood drawn. Spironolactone or Amiloride causes your veins to constrict, so that might be the rpoblem for you too. Water is ok to drink before a fasting blood test. Let me know what they say about all of this if you feel like talking to them about it. I'm curious to know what they say. I have gotten a lot of information from the research nurse at Addenbrooke's, she has helped me a lot to understand some things. If you want me to forward some of the emails to you PM me and I will or you could email her yourself. Take care and let me know how you are doing. I hope tomorrow is one of those good days for both of us. Talk to you soon.
Patti

beth67
11-15-2009, 06:12 PM
thats interesting about the sports drinks. I think I should try having them as my liquid source instead of just water because I tend to only drink water and a lot of tea. We have a target store here so I'll check out the skinny drink. Whenever I go shopping I start to get weak and I sent one of my kids to get me a gatorade and that helps a little but it does have a lot of calories. Wow good for you for losing so much weight. Two years ago I started trying and I lost 25 pounds but I need to lose 20 more. I really need to start to walking. I'll PM you. I'd like to see the info from the clinic.

Beth

byerly
11-21-2009, 08:38 PM
MY WIFE HAS GITTLEMANS FOR THE LAST 2 YEARS. NOW SHE TAKES HALF DOZEN PILLS AND SHE HAS TO INFUSE POTASSIUM 3 TIMES A WEEK . WE DO THIS AT HOME . WHAT ARE YOU DOING TO TREAT YOUR GITTLEMANS. WE LIVE IN GALESBURG IL. PLEASE E-MAIL US AT [email protected] or call us my #is 309-371-7574 my name is mark.

byerly
11-21-2009, 08:58 PM
Plash, my wife has gittlemans for the last 2 years,we go to Dr. Sparrow in peoria, il.The meds you take sound similar to what my wife takes except she has to have 500mg. potassium infused 3 times a week. Her normal potassium level is 1.9 to 2.1

plash561
11-23-2009, 09:46 PM
Mark,
sorry I didn't see this post for some reason until after I sent the first one. Is your wife on magnesium? I have had better results from the magnesium lactate than the magnesium oxide. The oxide causes diarrhea and you have to take quite a few a day to maintain an exceptable level. It actually works in vicious cycle you have to take alot of them but if you take a lot of them you get the diarrhea which in turns causes you to lose potassium and magnesium. The mag lactate doesn't have the side effect of the diarrhea, I actually take some of the mag oxide to help keep me moving. Tell your wife to stay away from soda because it causes you to lose mag, no black licorice if she likes it it does the same thing. Oranges, tomato juice, peanuts, raisins, yogurt and sports drinks are good to have around. Tell her she can also eat a lot of salt. Also one of the other members suggested to me when I was in the hospital and getting the potassium & mag iv's, that a warm cloth on the iv site helps with the pain. They had to stretch my time on the iv out to about 8-10 hrs because it hurt so bad. I hope this helps. Hang in there, this is hard on spouses too, my husband has been wonderful to me and I know I haven't been all that easy to deal with sometimes. If/when you have any other questions feel free to post, you will have other questions if she hasn't been treated for very long. And if the questions seem stupid to you, don't worry about that we've all been there. ;)
Patti

plash561
11-28-2009, 07:34 PM
Mark,
how is your wife doing? I've been wondering about everyone on here for a few days. No one has posted for a while. Give me an update. I hope your Thanksgiving was nice.
Patti

alaskawild
12-01-2009, 03:21 PM
I'm doing ok. Better since not drinking so much and diluting my electrolytes. Stayed home and had Thanksgiving with my husband and two son's. We needed an extended family break. Last friday I went to our little town with my boys to shop. I avoided all the big box stores. Weather wasn't bad when I left but after being in stores for three hours it had snowed alot and then started raining. It was a frightening ride home on a wet ice rink and ice fog. For some reason it snowed alot more at home than in town and we barely made it up the driveway. The snow was scraping the underside of the car and flying over the good and I floored it to get up our long driveway. Had the wipers on high and had my son press the garage door opener because there was no way I was taking my hands off the wheel. My 12 year old is so funny. When we were driving on the ice in town and even though it was almost dark, he put on his sunglasses. I asked him what he was doing. He said "I want to look cool when I die". It was good comic relief for the frightening ride. The roads are horrible today. It's raining and snowing and the roads are still an ice rink. Had my husband drive them to school today but I have to pick them up. Not looking forward to that.

Saw my endrocrinologist yesterday and she wants to do a chest ct scan to see if there is any cancer in my chest and neck. My thyroglobulin numbers which tell you if there is any cancer left in the body is not going down enough for her to feel comfortable. She does this to me every year. I've gone through testing because my numbers look off and they fill me up with weird injectable medication and have me swallow radiation pills and scan me and the scans always come out showing no cancer. She said I just have weird blood like a couple of her other patients and it makes her always wonder. I'm glad she is on top of things but I'm getting tired of being exposed to radiation and a ct scan has alot more radiation than the body scan. And I'm most likely ok and have no more thyroid cancer growing anywhere because the other tests have always come out fine. I think she has to do this for legal reasons to cover herself and I can understand that but there is a higher chance of cancer with this ct scan. I'm going to research this and make up my mind later. If I do decide to get it done it will have to be by the new year because our insurance is going up so high we no longer will be able to afford health care. Thats another whole bad situation I'm putting out of my mind until we have to deal with it.

Anyways, I was just going to say hi and here I went on a rant. But thats what were here for right, to rant and get things off our minds. Thanks for listening or rather reading.

Sally, how are you doing. Haven't heard from you. Wondering if your ok.

Patti, do you think your doing better now that you've been on the diuretics awhile?

Beth

plash561
12-02-2009, 09:05 PM
Beth, so re you drinking sports drinks or what? Stay away from colas. I have one once in a while but no more than a couple times a month. I think I'm doing better because of the mag tabs, my internist thinks I need to talk to the nephrologist about adding another Spironolactone to help get the mag up. I know my stress level is contributing to my feeling bad right now. We are trying to figure out if we need to lay some employees off, I hate the thought of it. Ironically today I was presented an award for Small Business of the Month in our Chamber of Commerce. It is an honor, it comes with some perks too, we will be interviewed on the local radio station, have an article in the paper. I am excited about it mostly because this is the 2nd one we've received since we took over 6-1/2 years go. I saw on the news that you guys have been hit hard with the snow and wind. Take care of yourself. I hope everything works out with the tests your having done. You sure have been through it. Sally hasn't been on here and I haven't heard from her on email for a while. Her newphew was killed in a car accident a few weeks ag and it really devastated thir family. I hope she's doing ok. Take care all.
Patti

byerly
12-02-2009, 09:42 PM
Hi Plash, My wife takes mag. she also does potassium infusions 3 times a week . we do it at home.If you have to get iv's a lot you may want a mediport put in this will stop the burning from potassium infusions .My wife has dealt with this for 2 years, its not a curable disease but it is manageable. Her doctor went to a conference last summer and brought up her case and what he was doing to treat it. everyone at the conference said he was doing what they would do. the doctors at the conference were from all the top universitys and hospitals in the us. Unfortunately she has the worse case anyone has ever seen because her average potassium level is 1.9 but her body is use to that level. she has tried different medicines to try and trick her kidney in to hold more potassium but so far nothing has worked. We have found out that gitlemans is caused by a mutated gene that afects a ceptor in the kidney that directs the potassium in your body. when she trys to increse her potassium by infussion and taking oral potassium her body dumps it out about as quick as she takes it. do you have back problems? Her back hurts her all the time.

alaskawild
12-03-2009, 02:31 PM
Patti, congrats on the award and interview. Too bad about having to lay off employees. The economy seems to be bad for the big and little businesses. My husband works for a small to medium size business and even though they get recognized for their excellent work they have had to do alot of cutting back and laying off people. Luckily my husband's job is secure. I don't think they could run the place without him.

We have had alot of real Alaskan weather. Besides my scarry ride the other day in the ice and fog, I really like winter. It looks almost fake sometimes like a movie set. Absolutely everything can be covered with snow or ice crystals. What I really like is the northern lights. I haven't seen them for awhile. I must not be looking out the window the right time at night.

Mark, I have dealt with horrible back pain with this whole thing. It started in July of 2007. My whole life came to a screeching halt. I went to several physical therapists until I realized something was wrong and then I found out about the Gitelman's. Not having enough potassium causes the muscles to not contract and relax properly. It didn't matter how much the therapist twisted and turned or massaged me, it wasn't going to work until my chemistry was more normal. The one therapy that has worked wonders is trigger point therapy and strain-counterstrain therapy. I learned the counter strain from the last physical therapist I went to. I really like this technique because it causes no pain. The technique puts the muscles in a stare of relaxation which is different from most physical therapy where they stretch the tight muscle. From what I've learned sometimes stretching an already irritated muscle is counter productive. It just can irritate it some more. If a person has had long standing pain, a couple of hours after the therapy you get achy but it goes away. I was amazed that in one hour I would walk out of her office without any hip or piriformis pain. She taught me how to do the technique myself and I do it everyday. A normal person probably wouldn't have to do it everyday but since my electrolytes are always off the muscle starts to contract again so as a preventative I do the releases as their called everyday. The trigger point book is called "The Trigger Point Therapy Workbook" by Clair Davies. It is a complex therapy to learn and it took me some trial and error but it's amazing how it can release muscles. At first it was very painful because my body had frozen up because I was so afraid to move. After a couple of weeks it was amazing how the pain started to disappear. The worst pain was in my extreme low back right above my sacrum. I couldn't drive because the pressure from the back of the seat was unbearable. I didn't even like the shower water to hit my back it was so sensitive. I highly recommend these two therapies for your wife. Learning the techniques can be a little overwhelming but now I don't even have to look at the books. The book I have on counter strain is called "Muscle Pain Relief In 90 Seconds" by Dale L. Anderson M.D.. These can both be found on an online bookstore. Also, resisting drinking so much water has helped alot. At first I resisted what my kidney doctor was telling me that I was flushing my potassium out of my body with all the water I was drinking. With Gitelman's you get really thirsty so this was a hard desire to control. So after a year of telling me I was drinking too much I started to write down how much I was drinking and slowly over a week lowered my intake to 6 cups a day. It's still hard to resist not gulping down water but I try to ignore the urge. My doctor knows and worked with Dr. Gitelman who discovered this disease. He is very knowledgeable and people even come up from the lower 48 states to see him. In case your interested in a possible phone consult with him his name is Jeremy Gitomer with Kidney and Hypertension Clinic of Alaska. The number is (907)375-5200. Another thing I did was to do a food elimination diet to see if any foods were contributing to my pain. I found out I am sensitive to potatoes, tomatoes, eggplant, peppers, dairy and caffeine. After taking these out of my diet along with sugar, artificial sweeteners and high fat foods my pain level was greatly reduced. It's been hard and exhausting to figure this all out but I'm glad I took the time. I still have bad days and usually I can back track and see what I did wrong. The Gitelman's is always going to be a challenge but if your wife can get the back pain under control it would be one less thing for her to deal with. Let me know if you want any more info or advice on this. I could go on and on about the stuff I've learned about nutrition and pain relief over the last few years.

Beth

plash561
12-03-2009, 09:03 PM
Mark,
as a matter of fact I have been having problems with my lower back for a few months now. I didn't think it could be related other than my muscles being weak. Does your wifes dr. believe it is related? I was prescribed Skelaxin to help but it doesn't always help. Your wife sounds like a real trooper, she has it a lot worse than I do, I have heard that the body gets used to the lower levels of potassium and that's how it adjusts. I have felt really bad for the past 2-1/2 - 3 yrs but I am feeling better. I've only had to get the infusions when I was in the hospital the end of July. I spend 4 days in there getting potassium and magnesium iv's, it was not fun, but it sure made me and my family take all of this really serious. It scared all of us. My potassium only went down to 2.7 at that time I can't imagine 1.9. It sounds like your wife has a good dr. that has made a huge difference for me. Does the dr. have her on high doses of mag too. Taking a different magnesium I think has helped get my potassium up to 4.3 as of my last labs a couple of weeks ago. I'm still tired all the time and I have had muscle cramps a few nights recently but I am so much better than I was in July. Did you go to the Gitelman's site? I have learned so much from that. The Addenbrooke's site is very helpful too. If your wife has any other tips bring it on, we have to help each other. Also don't forget to take care of yourself, you sound like you are trying to be proactive about this disease for her but you can't take care of her if you don't take care of you. Hang in there and keep me posted. :) Patti

sam56
12-15-2009, 03:30 PM
Hi Everyone,
I've been MIA for awhile. My nephew was tragically killed and it has taken me awhile to even get on the computer. I have way overdone and haven't taken care of myself. I saw my dr. yesterday. She did stat blood work which sent me back to the hospital for K IV. I got out this afternoon. My K was 2.6. They got it up to 3.3. Enough to be able to go home and start in on all the pills. It's my own fault as I have been at my brothers on and off since Michaels death and then to Indianapolis to be with him for surgery. It's hard to take 40+ daily pills when your mind is elsewhere. It did prove to me that if you have to do things that cause us so much pain and weakness, you can. Maybe I was going on God's good graces.
Everyone take care. Glad to be back on the Board again...missed you guys, your support has helped so much.
Sally

alaskawild
12-16-2009, 10:41 AM
So sorry for your loss. We were worried about you. Does the iv potassium make you feel better? My doctor said that it doesn't matter how much potassium you ingest because the diuretics is what keeps it in. Talking to other people it doesn't seem like the extra iv K helps either. Maybe it's different for some people.

Beth

sam56
12-16-2009, 04:30 PM
Hi Beth,
This time I could feel no difference. Usually my mag. is low too, but it was ok. Did you mean diuretics as in "water pills"? My dr. won't let me take anything like that because you lose more K in your urine.
It's funny Beth, I can not figure out this Gitelman's. I realize that it effects each of us in different degree's. We all seem to have similar symtoms but just when I think I have control (right combination of meds) it back-fires.
I know you suffer with Celiac's also. I think I told you that I was too about 6yrs. ago. I spent alot of money and time on it. One day I just said the heck with it and went back to my normal diet and could tell no difference. Crazy, I know.
I was reading what you wrote Mark about the pain you had around the sacrum. Sometimes thats intolerable for me. My dr. ordered Vicodin for this. It will take the edge off, but that's it. I don't like taking them anyway with all the negative talk about them. I've tried trigger point therapy too, but, the relief I got would only last less than 30min. The book you suggested to him sounds good. I might order it.
How have you been feeling overall?
I bet it's beautiful in Alaska this time of year. We are still waiting for our first snowfall! With it being only a little over a week till Xmas...it doesn't look very promising. Take care.
Sally

alaskawild
12-17-2009, 03:29 PM
Yes, it's really beautiful her right now. We have had alot of snow over the last few weeks, about 2 feet. Driving is a little scary at times like this morning taking my kids to school and my car was being pulled all over the road. Our two lane subdivision was down to one lane at places. Of course the plows came after I got home. Snow has alot of personalities. I like it when it's dry and just blows off the road but not today. This morning it was the consistency of wet powdered sugar or tapioca flour. Very slippery.

The diuretics I was talking about that are to help with the Gitelman's are Spironolactone and Amiloride. They are potassium sparing diuretics which help to retain potassium. Your not on these? From my research along with the magnesium supplements, they are the only two medications to treat Gitelman's. I don't understand why doctors are having you, Patti and Mark's wife Laurie on IV potassium. From what my doctor said it doesn't matter how much potassium you ingest or put in a vein, if the kidneys are messed up and letting it go and you don't have enough potassium sparing diuretic to stop some of the loss, it doesn't matter how much goes in you. From what you all say, it doesn't seem like the IV's do much.

Concerning the sacral pain, I've considered pain pills but I'm afraid to go down that path due to the side effects. There are things I know I can do but sometimes I lack the willpower and I'm working on that. Losing 25 pounds would probably make a difference with my pain. I've also found that I'm sensitive to different foods and when I avoid them the inflammation and pain subsides alot, enough to make me forget how bad it can be then I do the same dumb things again. I've found that I am sensitive to nightshade plants ( potatoes, tomatoes, peppers, eggplant), all dairy, eggs, sugar, caffeine, fermented and aged foods. I started reading Dr. Andrew Weil's book "8 Weeks To Optimum Health". Hopefully it will help me change some bad habits.

Yaaa, my neighbor just plowed my driveway. That will make my teenage boys happy since I was going to have them do it by hand when they got home. The driveway is about 200 feet and it is alot of work doing it by hand.

Beth

sam56
12-18-2009, 03:19 PM
Hi Beth,
Yes, I'm on both spironolactone and Amiloride. There are two types. If the Amiloride has HCTZ after it, that is the diuretic form. I found out the hard way by a nurse practitioner prescribing Amiloride HCTZ. My Dr. had a fit. I had only taken it two days when they caught the mistake. You know when it's a diuretic. I was in the bathroom about 8 times in two hrs. Anyway, thats how it was explained to me. It's misleading when they call it "K sparing diuretic". It just holds on to the K we lose urinating naturally.
I'm finally down in weight to be in the weight/height normal range. I lost 10lbs. in a few days after Michael was killed, but I had been cutting out the fat for quite awhile. Now, with the holidays upon us it's easy to put it on. I wish it would help with my back and other pain. I haven't noticed any let up. It does help with how I feel about myself though. Did you have allergy tests run to find your sensitivity to the different foods? I would do almost anything to get rid of some of the pain. I'm with you on the side effects of the narcotics. I have gone over a week without taking Vicodin now and would like to find an alternative solution.
Still no snow here. It's in the forecast for next week so maybe we will have a white Christmas. I've only scene pictures of the Northern Lights. Has to be breathtaking. I love to watch the sky. I lived in Tucson, Az for 5yrs. and saw some amazing night skies. Take care, Sally

plash561
12-18-2009, 10:03 PM
Hi Sally & Beth, glad to see you both back on here. It's been a few days for me, trying to get extra orders in before we take a much needed break between Dec 24 & Jan 3. Business has picked up a bit with some of the gift items we've added but we could sure use more. The stress of business being slow has been hard on me but I'm hanging in there. Beth, I saw you talked about the iv potassium, I haven't had to get the iv since Aug when I was in the hospital, my potassium was up to 4.3 at my last labs, my magnesium is still lower than I'd like at 1.6 but I think the Mag Tabs have helped get the potassium up. I am feeling much better energy wise. I still am having the muscle cramps a lot more than I can handle sometimes. My dr. prescribed Skelaxin a muscle relaxer for my back pain, it helps and doesn't make me wobbly or sleepy during the day. I don't take it everyday but it does help when I need it. She said she prescribes it for elderly people because it has fewer side effects than reg. muscle relaxers and with the elderly she doesn't like to give them anything that makes them more unstable taking the chance of them falling. No I'm not elderly just yet at 48 but I am very sensitive to medications like pain meds and muscle relaxers so it has been a good med for me. She has also suggested that I talk to my nephrologist about adding another Spironolactone to my dosage everyday to see if it would help with the magnesium. I plan on doing that, we'll see. I think losing 23 lbs has helped make me feel better too. I'm stuck at 23 but still trying even through the holidays. Sally, that's great that you've lost some weight too, it's not easy no matter what time of year it is. I'm sure with the stress of your nephew your appetite was the last thing you were worried about. Beth, I hope you find something that works for you with your food allergies, I can't believe everything you are going through. I hope you all have a great Christmas. Talk to you soon. Take care.
Patti

plash561
12-19-2009, 05:47 PM
Mark,
how are you and your wife? I haven't seen you on here much. Just wondering if she is feeling any better?
Patti

plash561
12-27-2009, 12:21 PM
I hope all of you had a wonderful Christmas and hope for a fantastic New Year.

alaskawild
12-28-2009, 10:44 PM
Hope you all had a good Christmas. I've been very busy for the last week. It's a good thing to be able to do things. Not like last Christmas when I had only been on spironolactone for one month and I couldn't climb the stairs let alone lift cans out of the cupboard to make dinner. It was the first Christmas I bought all ready made food. We took one bite out of the pumpkin pie and threw it in the trash. Now that I'm doing better, this year I was able to make traditional food for Thanksgiving and Christmas and all the food got eaten and didn't end up in the trash. My back is doing better. I'm trying something different called the McKenzie method for my low back. It's amazing how much better I'm doing. I was able to drive to Anchorage which is about 45 miles from me three times in the last four days which is amazing. I haven't felt comfortable enough to travel by myself that far for a couple of years because of the pain and weakness. It was nice to be able to do that on my own. I don't think I'm quite ready for a plane ride to california though to see family. That might be pushing it. If you guys are interested in the McKenzie method you can see a demonstration of a few techniques on *******. There are physical therapists that do this method but I'm trying to save money so I just watch how to do it on *******.

I had a ct scan done today to check for any cancer reoccurance in my neck or chest. I had been putting off this scan for a month because I really don't want any more radiation in my body but the thought of cancer growing somewhere convinced me to get it. Thyroid cancer is one of the most curable cancers but my blood tests keep showing thyroglobulin which is a tumor marker. It's lower than before I had my thyroid removed but it's not going away like my doctor would like. It's been in my blood for the last four years so every year my doctor has me go through either a radioactive iodine body scan or a radioactive pet scan and they always come out clean showing no cancer spreading. The doctor says I'm one on a few people that doesn't get rid of this thyroglobulin tumor marker in the blood so it keeps her wondering. I'm really tired of the whole rechecking me thing. I'm afraid I'll get cancer from all the radiation from the scans. It's been five years since my thyroid was taken out and your more at risk for reoccurance after the first few years so I think I'm safe now. I just have weird blood. Today they had to inject iodine for contrast and I had an allergic reaction with itching and hives. It wasn't bad but the technician said I shouldn't ever have iodine contrast again. I really hope this scan comes out clean.

I may not have health insurance next year because the price is going up so high that we won't be able to afford it anymore. I'm going to try and get in to see a nutritionist and get my blood checked for food allergies because I still don't feel quite right intestinally and want to do everything I can before the new year. No health care is a slightly frightening thought. I honestly don't know what we are going to do. Alaska has a health care program for kids without insurance but were about $40 too rich. I try to have faith that something will work out. My husbands boss is frantically checking other options. I don't know about you guys but this kidney problem along with the other health problems my family has is draining our bank account. I am getting better though and may be able to look for a job soon.

On a happier note it has been beautiful here. Lots of moose in our yard lately. I tell the kids to keep an eye out when their outside. I haven't seen the northern lights yet this year. I think I will see if there is a forecast on the internet for them up here and set my alarm to see them. They are really spectacular.

Beth

alaskawild
12-31-2009, 11:20 PM
Good news. My ct scan came out clean. No cancer in the neck or chest. I'm not going to do any more tests unless my blood results come out really bad next time. They were only a little off but they always have been. I'm just one of the few with weird blood. I'm more likely to get cancer from the radiation from all these scans. Now I'm just going to keep focusing on the things I should do to keep healthy. Hope you all have a great new year.

Beth

plash561
01-02-2010, 11:48 PM
Beth, that is so wonderful that it can back clean. Prayers answered!!!! I needed some good news. Thanks for sharing

wildgoose
01-04-2010, 08:30 PM
Hi Everyone :wave:
I was on the old thread related to potassium/gitelmans that was closed. For some reason I stopped getting notifications. I thought things had fizzled out, and wow - I was surprised to see it went so long!!

I hope everyone is doing well. I stopped by to see what was going on - seems I'm going down the "what's causing the potassium loss" with a new doc now. I was referred to him for something totally unrelated, and it seems he's totally curious about my potassium issues. :dizzy:

I didn't have the time to read all 29 pages of the old thread, and only made it through a few of the new. (sorry) Does potassium loss cause concentration issues? :confused:

Anyway, hello everyone -glad to see new and old names participating.

wildgoose

alaskawild
01-04-2010, 11:51 PM
Glad your with us. Yes potassium loss does cause problems with concentration. The weakness was bad but losing my mind was the worse. It has taken a year to feel a little like my old self. So your doctors don't know why your losing potassium? Have they done the 24 hour urine collection test to see how much your losing? That would definitely tell if it's Gitelman's causing it. Are you on anything like spironolactone or amiloride to retain potassium?

Beth

wildgoose
01-05-2010, 06:14 PM
Hi Beth,
No, no final verdict on the potassium loss. Last doc said, "why do we need to know what's causing it? the treatment would be the same" (thanks, doc, although in his defense he said he was trying to save me the money from not having more tests done) I'm just curious why all my life I was normal - then suddenly I had such troubles. Wondering I guess if there IS something that is fixable? I'd actually just resigned myself to taking all this medication not knowing why, but what for, when suddenly this doc took an interest.

yes - I'm on Spironolactone and potassium combination. I've been on it for quite a few years now. I've had 24 hr urines out the ying-yang - but not sure really what for. Seems various docs have tested my aldosterone and I think something else- but not sure they actually tested to see how much potassium I lost during a day?

I've come to the conclusion that this is the most likely diagnosis. I can't remember any glaring abnormalities on any of the tests. I guess I should be glad I at least am somewhat regulated on what I take, although my levels fluctuate - I take an extra potassium occasionally, but pretty much stay level. Thank goodness.

Congrats by the way on the clean scans. I haven't had time to read up on all the posts yet, and don't know the back story, but that's great!!

So you were just recently diagnosed with Gitelman's - I noticed you haven't been on Spironolactone overly long. It is a lifesaver - with side effects - but I can deal with them, beats the alternative.

Thanks for the welcome! :)

plash561
01-05-2010, 09:56 PM
Wildgoose, glad you're back. Have you seen a Nephrologist yet? If not it would be a good idea, the regular dr.'s really have no clue. Because Gitelman's involves the renal tubules a Nephrologist usually know more than internists or general practitioners. There is a lot of information on the Bartters/Gitelman site. You probably need to be on magnesium too if you have Gitelman's, the potassium will never be able to absorb unless you are taking both mag & potassium. Concentration levels for me fluxuate but they are definitely a problem. Quite challenging since I own a small business. When my levels are low I have a terrible time just doing what were normal everyday tasks. Take care, I hope you can get to a dr. that has some experience with this disease and that will listen you. Most of us on here have struggled with the medical community to say the least.
Patti