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Old 01-13-2010, 11:21 AM   #1
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alaskawild HB User
I have been extremely busy.

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

 
Old 01-26-2010, 06:44 PM   #2
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Re: Gitelman's Patients - I need help please!!!!

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

 
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Old 02-01-2010, 06:33 PM   #3
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Re: Gitelman's Patients - I need help please!!!!

Hi again everyone,

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.

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.

Thanks!

 
Old 02-02-2010, 02:27 PM   #4
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Re: Gitelman's Patients - I need help please!!!!

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

 
Old 02-23-2010, 04:11 PM   #5
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Re: Gitelman's Patients - I need help please!!!!

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

 
Old 06-17-2010, 11:11 PM   #6
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Re: Gitelman's Patients - I need help please!!!!

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

 
Old 06-26-2010, 10:49 PM   #7
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Re: Gitelman's Patients - I need help please!!!!

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

 
Old 06-28-2010, 12:34 AM   #8
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Re: Gitelman's Patients - I need help please!!!!

Quote:
Originally Posted by alaskawild View Post
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

Last edited by ausgreg; 06-28-2010 at 05:28 PM.

 
Old 06-29-2010, 12:05 PM   #9
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Re: Gitelman's Patients - I need help please!!!!

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

 
Old 07-19-2010, 03:42 PM   #10
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Re: Gitelman's Patients - I need help please!!!!

Quote:
Originally Posted by alaskawild View Post
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.

 
Old 07-20-2010, 01:04 PM   #11
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Re: Gitelman's Patients - I need help please!!!!

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

 
Old 07-21-2010, 02:22 PM   #12
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Re: Gitelman's Patients - I need help please!!!!

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

 
Old 07-23-2010, 11:31 AM   #13
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Re: Gitelman's Patients - I need help please!!!!

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

 
Old 07-24-2010, 06:27 AM   #14
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Re: Gitelman's Patients - I need help please!!!!

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

 
Old 07-24-2010, 07:00 PM   #15
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Re: Gitelman's Patients - I need help please!!!!

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

 
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