Story about Gitelman syndrome .

A quick summary of my diagnosis

Feb 24, 2018

By: Shannon


I have had symptoms and issues with my potassium since I was 14. I'd end up in the ER time to time due to low levels but no one knew what was wrong. I just continued to take potassium every day of my life.  My symptoms got way worse in 2013 when I started working out a lot and then I ended up in the ER. I decided I needed to get to the bottom of this and my family doctor suggested a nephrologist. In 2014, I did a 24 hour urine test and the doctor diagnosed me with Gitelmans. I have seen 6 different nephrologists as finding one knowledgeable or even compassionate was an issue. My current nephrologist is amazing, I hope he never relocates. I was just genetically confirmed in 2017.
I also was diagnosed with POTS in 2017. I now have a team of doctors consisting of my primary, a nephrologist, cardiologist, neurologist, gastroenterologist, and a pulmonary specialist. This has been a difficult few years but I'm trying to stay optimistic that symptoms will become better and easier to manage. These illnesses are so debilitating, especially together. The ill days are far more frequent than "ok" days.

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