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
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.
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.
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.
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.
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.
Last edited by Administrator; 11-04-2009 at 07:08 PM.
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.
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.
Last edited by Administrator; 11-04-2009 at 07:11 PM.
Reason: Disregarding the rules
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.
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, 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.
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.
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, 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.
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.
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 firstname.lastname@example.org or call us my #is 309-371-7574 my name is mark.
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
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.