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'm only borderline acromegaly. I show some symptoms but not others. I do have a pituitary tumor, but it's rather small at 6mm. My blood glucose level fails to suppress only the first one or two times on the test; my IGF-1 levels are at the low 300/high 200 level (is it nanograms per milliliter?). My testosterone is in the normal range, although my libido seems to fluctuate day to day. Most of the time I feel fine; I take really good care of myself getting plenty of exercise and watching my diet. I'm quite fit considering my diagnosis.
Because of all the above, my endo says I am borderline acromegaly and has been treating my condition with cabergoline. Some days I do feel a little weak and fatigued and dizzy but it's hard to know if this is a side-effect of the meds or a resurgence of growth hormone. I definitely notice a difference in the morning when growth hormone levels surge. But this usually wears off around 11am or so.
The last time I saw my endo he brought up the possibility of surgery. At the time, I wasn't in favor of it. I think it was probably a fear of the unknown that stopped me. What if something goes wrong? What if the pituitary gets damaged? Would it be better to just take cabergoline for the rest of my life if things remain status quo? What might be the benefits of surgery? And then what I could look forward to in terms of hospital expenses? I just bought a house, so I'm trying to keep costs down. I doubt my insurance would cover everything.
I'd appreciate hearing from others about this.
Because of all the above, my endo says I am borderline acromegaly and has been treating my condition with cabergoline. Some days I do feel a little weak and fatigued and dizzy but it's hard to know if this is a side-effect of the meds or a resurgence of growth hormone. I definitely notice a difference in the morning when growth hormone levels surge. But this usually wears off around 11am or so.
The last time I saw my endo he brought up the possibility of surgery. At the time, I wasn't in favor of it. I think it was probably a fear of the unknown that stopped me. What if something goes wrong? What if the pituitary gets damaged? Would it be better to just take cabergoline for the rest of my life if things remain status quo? What might be the benefits of surgery? And then what I could look forward to in terms of hospital expenses? I just bought a house, so I'm trying to keep costs down. I doubt my insurance would cover everything.
I'd appreciate hearing from others about this.
Tbeckner, how did your husband develop diabetes insipidus? Was the pituitary damaged and did this affect blood sugar regulation? And $4K out-of-pocket doesn't sound too bad to me. I have pretty good insurance, so I'm lucky in that regard.
Good idea worriedwife to check with insurance company how much you would have to pay first.
The costs involved should be easy to determine. Your insurance policy will have an out of pocket maximum. Ours was $5,500, so that's what we paid. You will be out of work for awhile, depending on what you do. My husband has a physical job, so he was out for 6 weeks. If he had a desk job, he could have easily gone back after a couple weeks.
Everyone will feel differently after surgery. My husband had an intense headache the first day and then improved every day after that. 1 year later he is feeling great. Most importantly, find the best neurosurgeon possible. This will minimize the risk of any complications. I'm a broken record on these forums, first and foremost, do your homework. It's ALL about using the right surgeon. I can't repeat it enough.
Good luck.