kayjay Posted June 24, 2009 Report Share Posted June 24, 2009 Hi, I am 36 and was just diagnosed (after a long hospital stay) with POTS. My resting heart rate was in the 160's and I seemed to have set a new HR record at the hospital during my TTT. I am waiting to see a Dr. at the Mayo clinic and I was wondering if anyone else has a similar story. I first had high blood pressure out of the blue during my first pregnacy. I now know that I have had POTS with high blood pressure for 10 years. Six years ago Johns Hopkins told me that I had Pheochomacytoma based on 3 positive urine tests. They sent me to NIH to be used as a lab rat and no tumor was ever found. NIH thought that I did not have Pheo. Hopkins thought that I did but that it was too small to see. I went without any kind of treatment for 6 years. Then I took the birth control pill YAZ and ended up in the hospital. The good news is that the pill made me sick enough to get diagnosed with POTS. I know many of you realize what a relief this was as I have been sick for more than 10 years. Does anyone else have a similar story? If so will you share what meds you are on? I am taking 50 mg of metoprolol and 15mg of Lexapro. I also had MAJOR TOXIC MOLD exposure when I first got sick and have developed bad allergies. Thank you for your help. I still don't quite know what I am doing but I am so thankful to be learning from all of you. Kayjay Quote Link to comment Share on other sites More sharing options...
vemee Posted June 24, 2009 Report Share Posted June 24, 2009 I wasn't diagnosed with a pheo but I did go to NIH on the suspicion that I had one. Nothing was found and my chemical tests came back negative. Did they do the blood test on you that is suppose to be 99 % accurate? It has been out for a couple of years but I don't know if it was out when you were at NIH. Quote Link to comment Share on other sites More sharing options...
kayjay Posted June 24, 2009 Author Report Share Posted June 24, 2009 No they did pet scans and 24hr urine tests. This was 6-7 years ago and my plasma tests were never positive. Looking back I think that the Dr. I saw at Hopkins wanted me to have a pheo. I know they wanted the tumor to study it. Quote Link to comment Share on other sites More sharing options...
vemee Posted June 24, 2009 Report Share Posted June 24, 2009 The name of the blood test is plasma free metanephrines and it is suppose to be the best test for diagnosing pheos. Quote Link to comment Share on other sites More sharing options...
Tammy Posted June 24, 2009 Report Share Posted June 24, 2009 Not diagnosed with Pheo but have been tested for it a few times. For whatever reason, when I explain my symptoms, it's kind of the first test doctors seem to want to do. Oh well, guess it's just POTS being POTS Quote Link to comment Share on other sites More sharing options...
It'sMyLife Posted June 30, 2009 Report Share Posted June 30, 2009 I had several tests to rule this out after my urogyn saw some sort of lump outside of my bladder from the inside while scoping my bladder. They were all pumped that they might have figured out my mystery illness that I've had for years and gave me literature she printed out. Then the 24-hour urine test and MRI was neg and it was like they didn't care about the rest of my symptoms anymore. Just back to the plain ole bladder. Fun. BTW, they never ID'd the mass she saw from the inside. I think it was just my intestines pushing on it from the look of the MRI. I'm not a Radiologist though. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 1, 2009 Report Share Posted July 1, 2009 I got this and my thyroid over checked! I found POTS on the net and then got diagnosed. Quote Link to comment Share on other sites More sharing options...
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