Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Hi all,
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.
I was tested first only one week after surgery (the endocrinologist in charge was not knowledgable enough). And I protested about that! The results were bad, I was confused and depressed, but my surgeon said: "just wait until three months after surgery". I had another test then. Everything fine. MRI also showed everything fine. Menstrual cycles returned, my hair started to fall (it was very thick and abundant) after ~3 months post-surgery.
My surgeon was also pretty confident that he had removed it. Also I had a lot of physical changes going on right after surgery (weight loss, hands, feet, abdominal wall, skin sensitivity, no more "puffy" eyes, ... ), all in the good direction. Nose and lips change went a bit slower, mostly completed after 2-3 weeks post-surgery.