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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carebear1022 03/21/2013

Hi everyone,
How often do you have your IGF-1 levels tested? I'm asking because my doctor wants to start measuring my levels every 3-4 months instead of monthly if my latest numbers come back within the normal range. This makes me highly nervous since I've only have had a couple of normal levels so far. I don't trust my body or this disease. If you have a good amount of time inbetween tests can you please tell me how long you were stable before. Thank you

ledgy 03/25/2013

im doing testing every six months, even though my endo says do it only once a year. I had surgery in September, 2011. The tumors grow very slowly, so the gap in testing is really not an issue, i am told.

Ledgy

wesley84 03/26/2013

Funny,

I am on every six months as well. Tommorow I go in for my results!

carebear1022 03/26/2013

Thanks guys...Are your numbers stable? Is thats why there is such a gap between testing?

JohnD1 03/27/2013

I used to be on a six-month test routine, but with stable numbers I am now on a yearly test. I already have my appointment through from the hospital for March 2014!

John

spiegal 03/28/2013

My daughter is yearly now after 5 years, before that every 3 months, take care

Trys 03/28/2013

I've been having tests every six months since surgery. If I'm still in remission on my next test then the testing will be then every twelve months.

Trys
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