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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Endocrine System
/ Acromegaly Support Group

what is happening?

Tozi
Tozi
According to my first 1,5 Tesla MRI in 11.2010 there was 5.5x3.5x5.5 mm benign tumor. IGF-1 was 533; GH was 0.97. PRL was 20. My Endo suggest to me go in surgery. But I didn't accept it. I decided to get Sandostatin LAR (first three months 10, second three months 20 and now 30). After 9 months I went again in 3 Tesla MRI.
According to second MRI there is no benign tumor. My last blood test results are;
IGF-1 301; GH:0.2; PRL 30...What is up? a bit more IGF-1 and PRL ; low GH but no tumor! I will discuss my situation with my Endo prefossor on Monday morning! What is happening,I couldn't understand! I have still no complainment and no problem. From where comes this high IGF-1 and PRL eventhough there is no tumor?! I found some topics about this situation bu I am abit confused now...
I need your comments and suggestions. Thanks in Advance.
Regards
Tozi
Tozi
Tozi
we will continue 3 months sandostatin lar 30.
Lifespalette
Lifespalette
Tozi....Sandostatin has a tendency to shrink tumors sometimes. My doctor actually had me on daily injections for a year before they attempted my surgery just for this very purpose. I had a 2.5CM tumor that was wrapping around the optic nerve and pressing on the carotid artery.. They were hoping the year's injections would shrink it enough to lessen the risk of going blind or damage to the artery.

Currently my annual MRI shows no new growth or even the presence of a tumor, yet if I go off the LAR monthly injections my IGF-1 levels start to climb. Last year my retiring Endo took me off the LAR injections for 4 months at the end of the year. My blood work in January showed that my IGF-1 levels had risen to just over 500, yet my MRI at the same time didn't show anything.

As my first endo and surgeon said, even a few cells, enough to fill the head of a pin, will be enough to stimulate the pituitary in over producing HGH.........

The nature of this beast is confusing most of the time.....we learn to adapt and continue on........
deleted_user
deleted_user
Have they tried testing you for HRGH (hormone releasing Growth hormone). My tumor was very small and I have what they believe is early onset of Acromegaly but early on they were not convinced that my pituitary tumor was the cause of my elevated GH levels. Before they did surgery they ran a blood test to detect HRGH to determine if there was a tumor somewhere else. I couldn't find a lot of information out there about it but just a thought. Good luck.
deleted_user
deleted_user
Tozi:

I am sorry that your levels are high and you do not know the source, however, i agree with Lifespalette that it only takes a few cells to stimulate the pituitary gland. I am supposedly "tumor free" but need medication to keep my levels normal. Perhaps you should redo the MRI? They often miss pituitary tumors.
Take care,
Mish