Hi Kevin: I'm sorry that your new endo gave you erroneous info, but that happens sometimes when they have perhaps forgotten that part of their textbook. I have had panhypopituitarism for a long time, although I was not officially diagnosed with it until 2000. By the time I got diagnosed, I had seen innumerable endos, neuros, etc. trying to find out why I was so sick. I had always been a slim person, but I suddenly gained nearly 70 lbs. in less than six months. I lost all my body hair and a large amount of the hair on my head. I never had to cut my fingernails because they broke off all the time. I lost two inches in height because my body was not processing calcium anymore so now I'm left with osteoporosis. I also had the heavy sweating that you have and even though I have all my hormones replaced, I still get episodes of sweating, especially during very humid days. The humidity bothers me lots more than the actual air temperature. I've been told by nearly every endo that they have no idea why I have this sweating problem, although if they would just go and read their textbooks from med school or maybe a journal or two, they would find that it is a symptom of hypopit. Unfortunately, hypopit is one of those diseases where you have to be a very strong advocate for yourself and it helps if you can get family members on board with that as well. For several years, I had all hormones except cortisol replaced but my endo wouldn't replace the cortisol because my test results were on the border of low/normal. I had all the symptoms of low cortisol (sweating is one of them) and he still wouldn not prescribe prednisone. Finally, just three weeks ago, I went through a particularly stressful period both physically and emotionally and my body went into adrenal crisis. I was taken to the ER and fought to stay conscious so I could tell the personnel that I was hypopit and had borderline low cortisol. As soon as they understood that, they quickly brought in a neurologist who administered hydrocortisone into my IV line and stopped me from going into a coma. They kept me in the hospital for five days for ongoing cortisol testing and they found that my cortisol was much lower than the tests done by my endo had indicated. I now am on hydrocortisone and trying to recover from what was a really debilitating and scary experience. I have to pay a lot of attention to my levels of stress and can't get overtaxed physically because it all impacts on the cortisol level in the body. I can understand completely how concerned your parents must be about your situation. I hate to tell you to find another endo since you've obviously just started seeing the one you have, but I had to change many times to new endos because I refused to just give in and suffer. I don't know where you live but if your experience is in any way similar to mine, you will probably have to go pretty far from home to find the appropriate endo for your situation. I live in Virginia, but my endo is in Boston. I have to go up there every three months and while it isn't convenient, it has been, for me, the best route to go. We are even considering moving to New England in order to be closer to really good medical care. Let me know if there are any other questions I may be able to answer. Kathryn |
