Was diagnosed in a very strange way with acromegaly, I had a appointment with a neurosurgeon to have a back surgery, and my neurosurgeon walked into to exam room and just looked at me and said I think you have a pituitary tumor. From that point on the back surgery was not even in the conversation, he figured out that I probably had acromegaly for at least 15 years or more so he set me for a MRI to a endocrinologist after testing acromegaly was confirmed with a 2.1 cm tumor. My surgery was on Dec 11th, the surgeon said he was pretty sure he removed the whole tumor, my pre surgery IGF-1 high was 935. I just went for a 6 week post surgery appointment with my endocrinologist blood work was taken at 5 weeks; all levels were in range except IGF-1, which had dropped to 255 my range is between 64-188. My next blood work is going to be at 12 weeks. My question is how long should I wait to see if HGF-1 drops into the normal range before I let them start med? My worry is they’ll start meds to early and mask any natural drop in IGF-1.
Just started somatuline and I'm practically living in my bathroom. Very upset stomach. Does anyone else have this issue?
Anyone from New Jersey? Can anyone recommend a neurosurgeon in new jersey area? Newly diagnosed.