I have Acromegaly, but my Doctors wouldn't give me that diagnosis until after they did surgery to remove the tumor, and found that it was producing Growth Hormone. My paperwork says, 'Acromegaly, proven by surgery'. My levels were somewhat high, but still in the normal range before surgery. Also, the suppression test came back completely normal. My endo stated that he should report that the test used to check for Acromegaly did not show that I had it, even though it was proven at surgery that I had it. I don't know if he ever did report it to anyone or not. The best thing to do is check a symptom list for Acromegaly, and see how many of the symptoms you have. I had quite a few symptoms, but none of the Endo's I saw cared about that. They strictly went by the test results. It wasn't until I started talking to a Dr. who specialized in pituitary surgery that anyone took it seriously. Even now that I am 7 months post op, my endo doesn't feel it's necessary to run any tests, even though I feel like my hormones are out of whack. I asked my GP to run some tests, and she did. She said the levels didn't look right, but that I would need to talk to the Endo about it, because she wasn't sure what it meant. I had to go out of state for my surgeon, and now I will probably have to go out of state for a good Endo. Dr. as well. If anyone has a good Endo they can reccomend, I am in Central Missouri, but would travel as far as it takes. Thanks, Laura |
