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 to all!
I just returned from my 6 month post surgery check up....and i received very encouraging news! My IGF-1 is down to 234 (it had been greater than 300 three months ago and the doctors were trying to force me to have radiation!)
My prolactin level is also stable at 5.3!!!!
My doctors are very happy (even though the igf-1 should probably stillbe lower), and they shut up about the radiation! My surgeon thinks i hit a home run with the surgery!!!!! My endo carefully examined me and could find no symptoms of continuing acro......
I am still very cautious and i am taking a wait and see attitude about all of this.....but i am now very optimistic!!!!!!!
A million thanks to all of my friends, and especially JohnD who urged me to have surgery, and to aztreasure, saner and others who told me to resist radiation and give this time!! You guys know more than the doctors!
My case is a a lesson to all.....do not give up hope! The doctors are pretty good at this stuff and they are getting better every day! My heart and my prayers are with all of you!!!!!
I just returned from my 6 month post surgery check up....and i received very encouraging news! My IGF-1 is down to 234 (it had been greater than 300 three months ago and the doctors were trying to force me to have radiation!)
My prolactin level is also stable at 5.3!!!!
My doctors are very happy (even though the igf-1 should probably stillbe lower), and they shut up about the radiation! My surgeon thinks i hit a home run with the surgery!!!!! My endo carefully examined me and could find no symptoms of continuing acro......
I am still very cautious and i am taking a wait and see attitude about all of this.....but i am now very optimistic!!!!!!!
A million thanks to all of my friends, and especially JohnD who urged me to have surgery, and to aztreasure, saner and others who told me to resist radiation and give this time!! You guys know more than the doctors!
My case is a a lesson to all.....do not give up hope! The doctors are pretty good at this stuff and they are getting better every day! My heart and my prayers are with all of you!!!!!
Well done!
Such good news. I am glad that surgery worked out so well for you.
At least with slightly higher IGF-1 at this point, you will know exactly what you need to keep an eye on.
John
Jokey, phoebe and wc, thanks and best wishes to each of you....
JohnD, Thanks again, and yes! I will keep an eye on things.....i will do an mri and retesting in six months...i am realistic,,,i know there is a fairly good chance the tumor will grow back, but i think i can deal with that if and when it happens.....
Ledgy
It's wonderful to hear a success story. Wishing you continued good health!
Yes, I am even suspicious about the so-called igf-1 levels.....i think some tests are more sensitive than others, so the numbers are suspicious to begin with....and also there is a range of acceptable levels.....and on top of that, i bet levels vary among each one of us, as we all have unique characteristics....
When i was in the clinical trial, my level went to 230 and the specialist said my disease was not controlled so they had to pull me off the experimental drug....now, two years later i get the same number after surgery and the same doctor says i am ok!!!!
Who knows? I still have some fatigue, and the clinical trial nurse says that it will never completely go away, but i know that, for now, i am very lucky, and once again i thank all of you for your advice, support, and encouragement....
Ledgy