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alaskawild
01-13-2010, 11:21 AM
hope everyone is doing ok. I have been extremely busy. My son with diabetes now has hashimotos thyroiditis which is another auto immune disease and I suspect he has celiac disease so I'm searching for a more accurate test than the blood test. I went to a naturopath doctor and had blood drawn to test for 90 different food allergies. I find that I'm more and more sensitive to foods and I want to know in one nicely printed out lab sheet just what I'm allergic to. I highly suspect I'm now allergic to apples because the last few times I bit into one my throat got hot and felt like it was closing up and the inside of my ears got itchy. I don't think I need a blood test to tell me I'm allergic to apples now but I'd like to know about other stuff that is possibly making me feel continually nauseous and yucky. Hopefully soon we will have this hashimotos, celiac and food allergy problem figured out and we can resume a more partially normal life in our household. Take care everyone.

Beth

alaskawild
01-26-2010, 06:44 PM
How is everyone doing. I've hurt my back and I'll probably be layed up a few days. Hopefully I will heal fast. My 12 year old has been home for two weeks with his stomach problems. He has had on again off again stomach aches for years and I finally realized he probably has celiac disease like me since it's hereditary. I'm waiting for test results for him but I've taken him off gluten and dairy to see if he feels better and when we get the results back and he is gluten sensitive then we will have had a few weeks start. I got my results back for the food allergies and I'm sensitive to alot more than just wheat. I'm allergic to eggs, milk, soy, peanuts, sunflower seeds, honey, corn and a few other things. I've got an interesting challenge with what I can eat. Let me know how you are doing.

Beth

wildgoose
02-01-2010, 06:33 PM
Hi again everyone, :wave:

Plash/Patti, thanks for the suggestion on getting to a nephrologist and the magnesium angle. I do know in the past my mag was normal. Guess things can change though. Unfortunately right now, I'm so overloaded in medical bills and getting ready to have an unrelated surgery, so that's one thing that's going to have to wait. Getting old is expensive. :dizzy:

Alaska/Beth, you poor thing - allergies, your back, and your son so sick. Seems it never ends doesn't it? I'm glad at least you know what your up against allergy-wise. I have cousin who's allergic to almost the same things on your list. She has a tough time, but after she found out the culprits it helped. Is your son responding to the change in his diet?

I'm still learning about this potassium thing even after all the years being on it, but mind if I ask a question? You guys seem to have a better understanding of everything.

My new doc took me off my aldactone, and is putting me back on mucho potassium and wants to do some kind of test where he infuses me with saline? Do any of you know what that is? He said I have to be off the aldactone for 6 weeks. (all of these changes right before surgery, I hope that doesn't interfere, the anestheiologist last time was freaked about my potassium)

If I understood him right, his working theory is some sort of growth on or overgrowth of the adrenal gland itself that's producing too much (I think) aldosterone? (Hyper-something or other I should have written it down). I know previous tests for aldosterone were normal, but he's convinced that's the problem since all of a sudden my blood pressure decided to go high - even on the aldactone. This is so tiresome.

You guys have any clue? Even if you can point me in some direction, I'd appreciate it.

I thought everything was all settled, and now he tells me he's sure he can find out what's wrong in 6 weeks and will be able to "fix" me. :confused:

Thanks!

alaskawild
02-02-2010, 02:27 PM
Wildgoose, I've had that saline thing done to me. Before we knew it was my kidneys my dr. thought I might have an adrenal tumor or hyperaldosterone. The test had to be done early in the morning due to hormonal changes that occur as the day goes on and I had to be fasting. I went to the infusion area of the hospital and they gave me two bags of saline over four hours. They drew blood before and after the test. I think the saline is supposed to reduce the amount of aldosterone and therefore if you still have the same amount of aldosterone after the infusion then something is wrong. Don't quote me on this, I may have it mixed up. It's not that horrible of a procedure except for being very hungry. I went in and the nurse was an absolute idiot. She didn't have the bags prepared and messed up my iv and I was bleeding all over the sheets and she didn't have the iv ready until 10am. I called my doctor and told her the test wasn't starting at 8 like she wanted and she said to forget it and come back another day. Luckily I got a much better nurse the next time and it went fine.

My son has been off gluten for one and a half weeks and has been starting to feel a little better. I wanted to see how he would react to gluten so I took him to Subway to challenge his system and he was extremely nauseous and had bathroom problems. I think I didn't need that $350 test to tell me he has a gluten problem but it will be nice to see it on paper and it will cover milk allergy. I still don't feel entirely well. I have constant piriformis and low back pain. The dr. said it could take 4 to 9 months after stopping foods that you are allergic to, to start feeling better. Hopefully this summer I will be better.

Beth

alaskawild
02-23-2010, 04:11 PM
Hope everyone is doing ok. I've been busy trying to figure out what is going on with my 12 year old. He has a constant stomach ache. We are getting allergy testing tomorrow which he is not thrilled about but we need to figure out what is going on. Let me know how you are all doing.

Beth

ausgreg
06-17-2010, 11:11 PM
Hi

I am presently on Potassium Chloride 600mg 3 tablets 3 times each day and Magnesium Aspartate Dihydrate 500mg 2 tablets 3 times each day. My Potassium levels used to be 2.1 to 2.7, but now average 3.4 to 3.7 since taking the mineral supplements

alaskawild
06-26-2010, 10:49 PM
Babydoll and Ausgreg, Are you guys on potassium sparing diuretics which keep the potassium in your system? I've chatted with a few other gitelmen people and I'm amazed thier not on these meds and they wonder why they are doing so bad. With the medical literature I've read spironolactone and amiloride are the two main drugs gitelmen people should be on. Also, I don't know if you are like me but I'm thirsty all the time and was drinking tons of water which just flushes the potassium away. My nephrologist said to limit the water which I have been and I'm doing alot better. I can get away with six cups a day.

Beth

ausgreg
06-28-2010, 12:34 AM
Babydoll and Ausgreg, Are you guys on potassium sparing diuretics which keep the potassium in your system? I've chatted with a few other gitelmen people and I'm amazed thier not on these meds and they wonder why they are doing so bad. With the medical literature I've read spironolactone and amiloride are the two main drugs gitelmen people should be on. Also, I don't know if you are like me but I'm thirsty all the time and was drinking tons of water which just flushes the potassium away. My nephrologist said to limit the water which I have been and I'm doing alot better. I can get away with six cups a day.

Beth
Hi Beth

I am one of the lucky Gitelman Syndrome sufferers who has virtually no symptoms as an adult. Had it not been for an unrelated blood test I would not even be aware that I had it. Though as a child (in the early 60's) I was admitted to hospital on several ocassions with severe dehydration and the doctors told my parents that I was very low in Potassium, which was probably caused by me being sick and vomiting and not eating - maybe so, but in those days Gitelman Syndrome was unknown and the doctors never did diagnose what was wrong with me. At that time I always had a craving for salt (and still love salty food) and from what I have read recently I believe Gitelman Syndrome was the cause of my childhood illness.

On the subject of Potassium sparing diuretic - A blood test I had taken 2 weeks ago proved that the Potassium and Magnesium Supplements alone were not working, as my Potassium level was only 3.0mmol/L and Magnesium 0.70mmol/L (still better than I was 14 months ago when I was 2.4mmol/L Potassium & 0.57mmol/L Magnesium). My Nephrologist has now got me taking 1 x 25mg Spironolactone per day along with my usual 6 x 500mg Magnesium Aspartate Dihydrate & 9 x 600mg Potassium Chloride.

I have to have another blood test in 2 weeks and see if the Spironolactone is working. I will let you know the outcome!

Greg

alaskawild
06-29-2010, 12:05 PM
Ausgreg, Hopefully the Spironolactone will help. Also, be careful not to drink too much water. I know it's hard if your like me and some of the others I've chatted with but you don't want all that valuable potassium being flushed away.

Beth

ausgreg
07-19-2010, 03:42 PM
Ausgreg, Hopefully the Spironolactone will help. Also, be careful not to drink too much water. I know it's hard if your like me and some of the others I've chatted with but you don't want all that valuable potassium being flushed away.

Beth
Hi Beth

It looks like the 1 x 25mg Spironolactone per day along with my normal daily 6 x 500mg Magnesium Aspartate Dihydrate & 9 x 600mg Potassium Chloride has not fixed the problem.

I had another blood test just over a week ago and my levels are still low (Potassium was only 2.9mmol/L and Magnesium 0.70mmol/L) - slightly lower than before taking the Spironolactone. My Nephrologist now has me taking 2 x 25mg Spironolactone per day (1 morning and 1 evening) along with the usual Magnesium & Potassium tablets. I have to have another blood test in 3 weeks time and see what happens then. Getting really tired of taking so many tablets each day and so many blood tests.

alaskawild
07-20-2010, 01:04 PM
Sorry your having a bad time. I remember how bad it was before they got me in the normal range. Your doctor may have to add another potassium sparing diuretic like amiloride to help keep in the potassium. They started me off only on the sprionolactone and after a couple of months had to add the amiloride. My doctor said that it doesn't matter how much potassium you consume through food or medication, if you don't take enough of the potassium sparing diuretic it just gets flushed away. I would ask your doctor about the amiloride. My doctor actually knows Dr. Gitelman and worked with him. He really knows what he is taking about. Also, I know I've nagged everyone on here about this, don't drink too much. You'll just flush out your electrolytes. I limit myself to six cups a day of any liquid. Let me know how your next test goes.

Beth

ausgreg
07-21-2010, 02:22 PM
Thanks Beth,

I will have a talk to my Nephrologist about adding an additional Potassium sparing diuretic. Could you tell me what medications you are presently taking (including Potassium & Magnesium supplements) and what doseage per day.

Greg

alaskawild
07-23-2010, 11:31 AM
I take spironolactone 50mg and amiloride 10 mg. I take it all in the morning. My doctor said I didn't need to divide the dosages that it wouldn't matter if I took it in the morn and in the evening. I read that other people take it 2x a day so I don't know whats best. I guess since I'm doing better that it's working for me. I don't take any potassium because I have a very sensitive stomach. I eat really healthy. I have about 3 fruit servings a day and vegetables at all my meals to get my potassium. I take 750mg of magnesium a day. I was taking 1,000mg but it was causing intestinal problems. I see that other people take alot more than that but my magnesium wasn't very low. With everything I'm on I'm holding my potassium at 4.1 I would like it to be a little higher but my dr. doesn't want me to have bad side effects with the meds.

Beth

ausgreg
07-24-2010, 06:27 AM
Thanks Beth

I will talk to my Nephrologist about what is working for you. I hope I can also one day reduce my Potassium (5400mg per day) and Magnesium (3000mg per day) supplements. Even though I am taking such a high dosage of these, I am fortunate not to suffer any side effects - but it is the cost, regularly having to buy more tablets and having to carry them with me where every I go as I am taking them three times a day.

Greg

alaskawild
07-24-2010, 07:00 PM
Greg, have you looked at the Bartter and Gitelman's syndrome site. You type in Gitelman's syndrome for your search. I think it's called Barttersite. It has alot of good info.

Beth

ausgreg
07-24-2010, 11:52 PM
Thanks Beth

Yes, I have been in that site a few times - actually when I was first diagnosed, I was keen to learn more about Gitelman's Syndrome and that was one of the first websites I found

Regards
Greg

alaskawild
08-22-2010, 04:54 PM
Just checking in hope you Gitelman's people are doing ok. I'm doing ok. Just wish I could get a grip on this muscle pain and tight muscles. Going for lots of labs next week. Having muscle spasms and a few heart palpitations and a little tingling around the mouth and weakness in my arms so I think something is off.

Talk to you later,
Beth

ausgreg
09-01-2010, 09:42 PM
Hi Beth

Got the results of my last blood test back and Potassium is now 3.1 & Magnesium 0.7. The Magnesium level is acceptable, so obviously the supplements are working, but the Potassium is still low. I am still taking 3000Mg of Magnesium, 5400Mg Potassium and 50Mg Spironolactone each day and my Nephrologist has now added 5Mg Amiloride each day in an effort to get my Potassium levels up and reduce the number of tablets I have to take each day. Next blood test in 2 weeks time - will be interesting to see what the results are.

Greg

alaskawild
09-02-2010, 04:20 PM
Hope your next test comes out better. That amiloride might do the trick. It did for me. I take two 5mg pills a day. My last test which was two weeks ago was 3.9. Would like it to be higher but I don't want to get side effects from too much medication.

Beth

ausgreg
09-28-2010, 07:33 PM
Hi Beth

It looks like the combination of 5mg Amiloride & 50mg Spironolactone a day has done the trick ! My last blood test results came back last week and my Potassium is now 3.8, which is higher than it has ever been and certainly within the normal range. My Nephrologist has now reduced my Potassium Chloride supplements (from 5400mg to 3600mg per day) and I will have another blood test later this week to see if the Potassium Chloride can be reduced even further of if any other adjustments need to be made. At last some positive progress is being made, I was beginning to think that there was no solution to this problem

Greg

alaskawild
09-30-2010, 02:02 PM
Good news. Glad it worked. Hopefully you can get off the potassium. I couldn't take it. Upsets my stomach too much. It took me a while to feel better. Looking back I can see how much I've improved. Reaching up to the cupboard to get a can of food out was exhausting. Even had a hard time holding my arms up to was my hair. I still have some residual muscle weakness and not sure if it's the potassium thing or if something else is going on. I have a lot of low back and periformis pain. Slowly but surely it's getting better. I just think that being potassium deficient for so long and having undiagnosed celiac disease for so many years did a real number on my body. Hope you enjoy your summer. Were heading into winter. Getting darker and there is snow on the mountains already.

Beth

ausgreg
10-20-2010, 03:28 PM
Hi Beth

Just had a call from my Nephrologist - more good news. The last blood test after reducing my Potassium supplements (from 5400mg per day to 3600mg) is working well, with my blood Potassium level at 3.9. He has now reduced my Potassium supplements even further (from 3600mg to 2400mg) and added an extra 5mg of Amiloride (increasing my current dose of 5mg to 10mg). I have another blood test in a few weeks - I will let you know how it goes.
Greg

alaskawild
11-12-2010, 11:00 AM
Thats the combo that finally worked for me. I still have to be careful about drinking lots of water. It really dilutes my electrolytes and makes me feel "off".
I saw that there is a black box warning on the meds. I asked my pharmacist what kind of warning and she said the meds can cause liver tumors so I'm going to ask my doctor to give me yearly liver function tests. Don't need any extra things going wrong with my body.

Beth

ausgreg
11-12-2010, 02:06 PM
Hi Beth

I hate taking all these pills and possible long term health affects are a big worry (not to mention the cost!!)

Since my last post I have had another blood test and Potassium still acceptable at 3.9. More changes to my medication. I have now had my Magnesium reduced from 6 x 500mg (3000mg per day) to 4 x 500mg (2000mg per day), the Spitonolactone (previously taking 2 x 50mg per day) has been removed completely and the Amiloride which I was previoulsy taking 2 x 5mg (10mg) per day has been increased to 4 x 5mg (20mg) per day. I have another blood test scheduled for next week - it will be interesting to see the results of this one. My Nephrologist is trying to reduce my medications to the bare miniumum to maintain a healthy Potassium and I am very pleased about this. I will let you know what happens after the next blood test

Greg

alaskawild
11-13-2010, 11:18 AM
Do you know why he took away the spironolactone. Is he trying to get your potassium higher or does the spiro have more side effects?

Beth

ausgreg
11-13-2010, 02:05 PM
Do you know why he took away the spironolactone. Is he trying to get your potassium higher or does the spiro have more side effects?

Beth
Hi Beth

I have had no side effects with any of these medications. The Spironolactone didn't seem to be working for me - When I was taking Spironolactone (without the Amiloride), my Potassium levels remained low and as soon as the Amiloride was added my Potassium level came up. The Nephrologist told me this may or may not wok, but he wanted to try removing the Spironolactone, increasing the Amiloride and reducing the Magnesium - I guess I will find out after the next blood test. The Nephrologist said that there are different mutations of Gitelman's and different combinations of medications work differently with each person, so it is just a matter of trial and error until he gets it right.
I do appreciate his patience and persistance with this - it is now 9 months since first diagnosed and I have been in contact with the doctor every 2 - 3 weeks. He easily could have stopped making changes to my medications as soon as my Potassium level was acceptable, but he said he will continue experimenting until he gets it right.
I will let you know what happens.

Greg

ausgreg
11-28-2010, 02:43 PM
Hi Beth

I have had no side effects with any of these medications. The Spironolactone didn't seem to be working for me - When I was taking Spironolactone (without the Amiloride), my Potassium levels remained low and as soon as the Amiloride was added my Potassium level came up. The Nephrologist told me this may or may not wok, but he wanted to try removing the Spironolactone, increasing the Amiloride and reducing the Magnesium - I guess I will find out after the next blood test. The Nephrologist said that there are different mutations of Gitelman's and different combinations of medications work differently with each person, so it is just a matter of trial and error until he gets it right.
I do appreciate his patience and persistance with this - it is now 9 months since first diagnosed and I have been in contact with the doctor every 2 - 3 weeks. He easily could have stopped making changes to my medications as soon as my Potassium level was acceptable, but he said he will continue experimenting until he gets it right.
I will let you know what happens.

Greg
Hi Beth

It certainly looks like the Spironolactone doesn't work for me. Since stopping the Spironolactone 2 weeks ago and increasing the Amiloride to 4 x 5mg per day, my latest blood test came back with still a good result - Potassium 3.9 and Magnesium 0.8. My Nephrologist has now reduced my Potassium Chloride supplement even further (now 2 x 600mg per day, I was originally taking 9 per day !!!!). I will have another blood test in 2 weeks time, I will let you know the results from that one.

Greg

alaskawild
12-12-2010, 04:47 PM
Glad you don't need the spironolactone. My theory is the less meds the better. I'm starting to wonder if I may be able to not take the spiro. My doctor has never tried anything but adding more. There is not a lot of good communication with my doctors office. I'll call with questions and they won't get back to me for weeks or not at all. I tend to bother my general dr. for routine tests for checking the potassium and if anything looks off I fax a copy to the nephrologist. I haven't seen the kidney dr. for two years. I've called and asked if I should come in but they say it's not necessary. I thought the standard of care was at least once a year. I guess I could call and insist for a check up but everything does seem to be going well. Would like to stop the spiro like you and see if it keeps the potassium level the same. The black box warning on it scares me a little.

Beth

ausgreg
12-13-2010, 02:01 PM
Glad you don't need the spironolactone. My theory is the less meds the better. I'm starting to wonder if I may be able to not take the spiro. My doctor has never tried anything but adding more. There is not a lot of good communication with my doctors office. I'll call with questions and they won't get back to me for weeks or not at all. I tend to bother my general dr. for routine tests for checking the potassium and if anything looks off I fax a copy to the nephrologist. I haven't seen the kidney dr. for two years. I've called and asked if I should come in but they say it's not necessary. I thought the standard of care was at least once a year. I guess I could call and insist for a check up but everything does seem to be going well. Would like to stop the spiro like you and see if it keeps the potassium level the same. The black box warning on it scares me a little.

Beth
Hi Beth

I guess I am very lucky. My Nephrologist calls me every 2 to 3 weeks and discusses the results from my most recent blood test, fine tunes my medications and sends me another blood test request. He called me again last night and said he is very happy with the results of my blood test from last week (Potassium 3.5, Magnesium 0.8). He said I don't need to make any more changes to my medications and to come and see him for a review in 6 months. I am so pleased that my next blood test will be in 6 months time instead of every 2-3 weeks (as it has been since March this year). My daily current medications are now: 4 x 5mg Amiloride, 2 x Potassium Chloride 600mg & 4 x Magnesium Aspartate Dihydrate 500mg

Greg

alaskawild
12-19-2010, 03:00 PM
Your so lucky to have a responsive doctor. How nice to know you don't have to be poked for another six months. I was very happy about my last lab level of 4.5. Now I just need to work on my tsh level and hopefully I'll have more energy. It's too low and my doctor wants it low but I'm the one who has to live in this body so I want it higher. Hope your having a nice summer. We are completely into winter now. Zero degrees and 70mph winds for two days. Not much fun but I always have the summer to look forward to. Summers are fantastic here.

Take care,
Beth

alaskawild
02-20-2011, 11:10 AM
Hello Gitelman's people out there. Just wanted to let you know that I do check in once in a while to see if anyone has posted anything. Hope you are all going good.

Beth