ss_blog_claim=295a64cb801d42ccc33657ab449f753a

Gitelman’s Syndrome

Posted by Connie on Friday, August 1st, 2008 at 11:36 am and is filed under Chronic Illness, Health Information.
There are/is currently 5 comments |
0 Flares Filament.io 0 Flares ×

I got my diagnosis from the nephrologist of Gitelman’s Syndrome. This is the cause of the hypokalemia. The diagnosis was made by doing two 24 hour urine screenings and blood tests. My kidneys excrete too much potassium and magnesium.

I now take Amiloride and Potassium. After seeing the doctor who went over my test results with me and recognizing that I cannot take magnesium supplements due to having Myasthenia Gravis, increased the Amiloride. Tomorrow I am to decrease the Potassium.

I have weekly blood tests for my Potassium levels. I also have a monthly BUN test. My ultimate goal is to get my Potassium level up to a 4.0 which is above normal. The reasoning for this is because of having Myasthenia Gravis. The nephrologist can tweek my levels by using the blood test results and the medications.

For further information on Gitelman’s Syndrome please visit BartterSyndrome.com and Gitelman Syndrome on WrongDiagnosis.com

0 Flares Twitter 0 Facebook 0 StumbleUpon 0 Google+ 0 Filament.io 0 Flares ×

5 comments

  1. I happened on to your site. My daughter who is 17, was diagnosed in late March ’09 with Gitelman’s Syndrome. Recently they have determined she also has a mild case of Bartter’s Syndrome. She is passing out on a regular basis(once a week) and currently takes 28 pills a day. How long did it take to get your pot. up? She stays in the 3.2 area. Hers can get down to 2.6 which is scary, but we have got her pot up to 3.4 before. wohoo! Her magnesium is low also, 1.4 right now which is her highest she has had in some time. Any ideas, encouragement would be welcome! Thanks and good luck to you.
    .-= Kay Wilson´s last blog ..Huge Red Glow Takes Over City =-.

    comment by Kay Wilson — September 23, 2009 @ 1:14 pm
  2. Hi Connie & Kay,

    I’m 27 years old and was diagnosed with Gitelman’s when I was 11 years old. My magnesium runs between 0.4-0.9. My K levels used to run about 2.9 until I started taking Yaz. Now my K is up to 3.8-4.0! I highly suggest you talk to your nephrologist about taking Yaz. It has significantly increased my potassium. My magnesium still runs very low but at least my potassium level is much better. I stopped taking Yaz for a short time and got tetany in my face really bad and my fatigue level greatly increased.

    Kay – 28 pills a day is crazy, what meds is your daughter taking? Also, I’ve discovered Effer-K which is a tablet you drop in water so you can drink the K instead of swallowing those huge horse pills.

    Please feel free to contact me!

    Sara
    sperri@fuse.net

    comment by Sara Perri — January 19, 2010 @ 1:05 pm
  3. my name is lori i was diagnosed at 6year old with gitelman’s sysdrome and polystic kidney’s disease my father had it.he passed away 4years my three sister have it too.i’am the only one that is very sick with all the time with the potassium it run 2.1my legs allways hurt and arms.

    comment by lori — February 24, 2010 @ 10:57 am
  4. Lori,

    My legs hurt all the time too, so I understand what you mean. Running and stretching seems to help. Yaz has really helped me maintain a good Potassium level. It helps more than just taking K supplements. You should talk to your doctor about it.

    -Sara

    comment by Sara Perri — March 1, 2010 @ 1:46 pm
  5. Hello I also have Gitelmans Syndrome. I have so many symptoms but weakness is the worse. My body aches and shakes. I am nausiated constantly, I urinate and have diarrhea constantly. I recently was in the hospital twice within two weeks. I can no longer work. Has anyone been able to get social security with this or any help at all?

    comment by Joyce — April 16, 2010 @ 10:30 pm

RSS feed for comments on this post. TrackBack URL

Leave a comment

CommentLuv badge
« | »