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.
I have a pituitary adenoma and my growth hormone is now 0. Over the years I grew 2 inches, hands and feet enlarged, tunnel syndrome both hands, left worse, heart left ventricle enlarged, face, jaw changes teeth problems (spaces) and a bunch of other stuff. I was not tested until the tumor showed up on the MRI now in June 09. In 01 I saw an endocrinologist who did not do the proper tests, she treated me like it was all imaginary on my part. I am sure the tumor was there in 01 because it is large now and they grow slow.
Are you seeing an endocrinologist? I don't know much about this, I was told it can be so different for everybody, it affects everybody in a different way.
Ulrike
There was a time I could eat the way you describe and remain thin, but now the calories gang up and attack me. I had lost an enormous amount of weight and it's finding me again. :-(
Oh, I just remembered, my hearing is compromised on the left side - the Mayo endo says it's the skull bones pressing something & nothing I can do :-( and the left hand did not respond to the carpal tunnel release, so I s'pose that relates to the left side of the body issue, too. It is numb so I ignore it except when it causes problems because of the numbness, but the shoulder doesn't let me forget it much. Maybe the vitamin D will help - I hope!
I'm taking Sandostatin LAR Depot 20 and it is helping some, but not enough. I am waiting to get my hands on the lab report to see what my IGF1 levels are but they are increasing and I had told my endo that I either need to go back to the daily injections or have a more frequent dosage. I don't think he paid attention because when the lab report came in a few days AFTER the blasted appointment he called me and asked me if I had forgotten to give myself the injection!!!!!!! No wonder I was feeling like crap. Now, i'd like to see just how high the IGF1 climbed.
IGF2 is not being tested for me.