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.

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Question?

Mimi8
Mimi8
Has anyone ever started meds to get IGF-1 under control and then come off them and continued to maintain a normal level? Had surgery February this year. IGF-1 went from 947 to 646 right after surgery, then 508 in April and 410 in June. Endo wanted me to start with monthly injections of Octrotide but I decided to wait to see what next lab work reveals. Blood work tomorrow and get results on the 30th. Don't want to start injections if there is a possibility that IGF-1 will return to normal range, but also very concerned about damage being done to my body. I appreciate any insight/advice.
Aworriedwife
Aworriedwife
Hi Mimi, If your next results come back and your IGF-1 has dropped again, I think it would be safe to wait before starting meds. Our doctors took the wait and see approach as long as the numbers were dropping. Unfortunatly, my husband's numbers have hit a plateau, so it's time to start meds. Having said that, starting meds isn't going to prevent your numbers from dropping on their own, if that's what they were going to do any way.

Good luck
Lotosb
Lotosb
Mimi,

My situation was a little different than yours as I was diagnosed 37 years ago, long before today's meds were even dreamed of. I didn't have surgery, I had radiation to shrink the adenoma. While waiting for the results (generally about a year) my doctor put me on Parlodel, the only drug available. It reduced growth hormone but did nothing for the adenoma. As the year progressed I began to feel better so I unilaterally reduced the dosage of the meds. Eventually I confessed to the doctor and had said to stop the meds for three months to see what would happen. My growth hormone level stayed in the normal range and I never went on the meds again.

I don't recommend that for everyone. I did a lot of meditation as I feel strongly in the mind/body connection. But it worked for me. That was in 1978.

Lotosb