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Gitelman's Syndrome
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AQC05 posted:
In 2007, I was only 25 years old. I will never forget, I 3 wks after I had my 3rd daughter. I went in to attempt to have my tubes tied and low and behold, I could not have the procedure done because they said my potassium was too low and I was immediately rushed to the hospital and admitted. For years, I had saw many doctors and none of them could tell me what exactly what's going on. Finally, in 2009, I was diagnosed with Gitelman's Disease. I was one of the worst cases that they had seen as far as this condition was concerned. I have been on I think every prescription that you can think of , I have been hospitalized too many times to count on two hands, in intensive care. Everytime I am amitted, I'm there for at least 5 to 7 days per visit. I have to be hooked to heart monitors, Iv's coming from everywhere. I have been told that my heart can stop at any moment and I could just die without warning. I suffer from the worst pain ever. My legs have sever muscle spasms to piont where I can't walk. I have been in intensive care on all the medications and my hands suffered a muscle spasms so bad that they wouldn't open for 8hours. That was the worst pain in my life I had ever felt; worst than giving birth to me. My blood pressure is always low. My calcium, magenesium, sodium, potassium, and iron levels are always low. When I suffer from this disease my potassiums levels drop so low that doctors have told me they are death rate low. ( They have saw people die from my potassium levels.) Your potassium should be at least levle 5 and mine are 2, -1. I have to be put on morphine because that's how bad my pain is. I can't really participate with my family and friends because I am always tired or in pain. Now a days, I had been prescribed to take 20 pills a day for the rest of my life. I take 4 20mg of potassium twice a day, 4 amiloride 10 mg twice a day, 1 daily vitamin, 1 iron pill, 1 magnesium pill and 1 calium 500mg per day. And I just can't turned 30 years old this year. On top of everything else , I'm sick all the the time to point where I can't even get up and do anything for my kids. I had at one point went into a state of depression for a while. Then, something came over me and decided to deal with this disease. I stopped taking so many of the medications and started replacing them with fresh foods that have the same things in them. I have found to feel better when I do this. I try to keep fresh spinach, cantalopes, bananas of course, oranges and I drink at least 5 serving of orange juice per day. I found that vitamin water is and excellent source of potassium, magnesium, calcium and iron in it. Also V8 juices as well. When I start feeling really bad I try to go back to my proscribed medcation daily regimen and continue the fresh food diet as well. Eventually, it all starts working , your levels go back up enough for you body to function properly as it will again. I started looking at like this.... Either way it goes my potassium levels are never going to be on track because I loose potassium everytime I use the bathroom but I can try to controll it to the best of my knowledge. I know when I feel so bad where I can't walk( something like how I'm feeling now) then it's time for me to get to the doctors asap and more than likely I will be admitted at the hospital because their is only so that can be done at the doctor's office, So, with all this being said, i truely hope I have been some help and have give some insite on this disease. STAY POSITIVE, STAY STRONG, AND STAY POTASSIUMED UP!!!! Start with a BANANA & a GLASS OF OJ a DAY!!!
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Haylen_WebMD_Staff responded:
AWCO5 -

Thank you for sharing your story! Not only are you feeling better, you're setting a great example for your kids.

Here's a list of high potassium foods for others interested:

Potassium Content of Fruits,Vegetables,and Other Foods

Haylen
 
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TK123 responded:
AQC05 , I realize its been a year since you posted this and you may have already found our group but in case you haven't there is over 200 people in a group on facebook that deal every day with this same condition. Through our collective experiences we have found ways to improve our lives, we give advice and information on medications and other things we have found to help. My G.S. was considered untreatable, doctor after doctor had given up on me. Since joining the group I have found a way to stabilize my electrolytes and manage my condition for the most part for the first time in 30 years. Here is the link if you are interested in joining and getting information that may be able to help you improve your condition. https://www.facebook.com/groups/FightingGitelmansSyndrome/

By the way I agree diet plays a role in this but along with diet there are other things that seem to help as well.
 
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TK123 replied to TK123's response:
I wanted to add to this for anyone else with G.S. that may come across this article "By the way I agree diet plays a role in this but along with diet there are other things that seem to help as well."

All though diet is helpful there is no way for us to get enough potassium or magnesium through diet alone with Gitelmans, we just lose to much. I am taking 240meq of potassium. 1400mg of magnesium through both oral and transdermal, plus a diuretic to help hold onto all of it. Watching my diet helps as well along with taking certain vitamins and other things. The combination of all of these is what has gotten me stable and allowed me to function again for the first time since getting sick. Also I had to try three potassium sparing diuretics before finding the one that worked for me. They effect people differently. I no longer need IV's or trips to the hospital. So with the right meds, diet, and supplements you can get back to a semi normal life with G.S. But it does take some experimenting and a combination of things to get there.


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