I had an interesting experience this past two weeks. My IGF-1 had started to go up slightly in July. They retested it a couple of weeks ago and it was up just a few more points, to 232. Still in the "normal" range, but at the top. My endo decided that meant I had to start treatment immediately, even though a new MRI showed nothing. The problem was that after reading this site for several months, I knew more about the current medications than he did! We also argued over whether other organs could be putting out growth hormone, and whether the medications might help my headaches. He finally agreed to research it before settling on a medication. In the meantime, I decided to seek a second opinion. My neurosurgeon set me up with a endo at UT Southwestern. It was like a whole different world! The new endo re-ran my bloodwork, because he wanted to always have consistent labs. He sent it to Mayo. When we got the results back, my IGF-1 was 185- my lowest count ever! Now the new endo is saying there is no reason to treat and we have no reason to suspect residual/return tumor. I am so relieved! My point is this- If I had not learned so much from the experiences everyone has shared in this support group, I would not have known to challenge him and to seek a second opinion. Then I would have been started on Pegvisomant. The next time we tested it would have appeared that the Pegvisomant had worked, and I would have been stuck on it for who knows how long.
So, a big THANK YOU to all of you who so generously share your stories on here. I truly feel you contribute more than just moral support, but help tremendously to provide much-needed information.