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,
It's been a while since I've been around here. It's been a while since I've been dealing with my health.
I was DXed with acromegaly and Cushing's in Dec. 08. I had surgery in Jan. 09. Surgery failed to cure me of both conditions.
Doc's giving me these options:
- remove pituitary
- takes meds to lower GH and cortisol (Sandostatin and ketoconazole)
- remove adrenals to stop Cushing's and take Sandostatin for the acro
- try a second pituitary surgery without the intention of removing the pit
What do you think I should do??
Before answering, keep in mind that I am already deficient in LH, FSH, and TSH (T4&T3) and, therefore, already take thyroid and estrogen replacements. So, another pit surgery might not make all the difference if damage is one.
I'd love your opinions on this.
I noticed others are not as active as before. I hope that means you're all doing well. For everyone else, hang in there - your day will come!
Hugs,
K
It's been a while since I've been around here. It's been a while since I've been dealing with my health.
I was DXed with acromegaly and Cushing's in Dec. 08. I had surgery in Jan. 09. Surgery failed to cure me of both conditions.
Doc's giving me these options:
- remove pituitary
- takes meds to lower GH and cortisol (Sandostatin and ketoconazole)
- remove adrenals to stop Cushing's and take Sandostatin for the acro
- try a second pituitary surgery without the intention of removing the pit
What do you think I should do??
Before answering, keep in mind that I am already deficient in LH, FSH, and TSH (T4&T3) and, therefore, already take thyroid and estrogen replacements. So, another pit surgery might not make all the difference if damage is one.
I'd love your opinions on this.
I noticed others are not as active as before. I hope that means you're all doing well. For everyone else, hang in there - your day will come!
Hugs,
K
I'm sorry to hear that surgery did not give you a cure. I'm afraid I've no real words of wisdom as I'm still awaiting my surgery, but wanted to ask you how you would feel about going down the meds route instead of surgery (especially as it seems they are not confident about the surgery working). I'm only keen for surgery as I've been told if they get all the tumor I will be fine, which is what I hope will happen. It's a tough call, I hope someone else on here can give you some better advice. Hope you get good results whichever path you choose. Best wishes, Rosie
What is the status of your tumor? what size? what are your numbers - GH and IGF1? Based on this, I'll comment.
Why didn't they give you Sandostatin after your first surgery if you weren't cured of acro?
I don't know much about Cushings.
I'm sorry to hear about your plight... my heart goes out to you. I'll send a prayer. Best wishes!
Thanks so much for your responses!
Rosie - I hope they will get all of your tumor as well. When did you get DXed? Thanks for your support.
Aztreasure - Not sure about the tumor yet. I have my MRI order, but have yet to get it done. IGF-1 is a little better - just above range for me - like 250 or something. I did not suppress properly on my last OGTT, yet my numbers were a lot better than the first time (OGTT 1 - GH went up from 7 to 9; OGTT 2 - GH went down to 2 from 3). The lack of Sando was my fault - I didn't do any follow up for almost a year. DENIAL! Thanks so much!
Chip - I agree with you. The thought of losing any glands really bothers me. Thank you.
Looking forward to hearing other thoughts.
Hugs,
K