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
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Confused igf1 on the rise

tbeckner
tbeckner
Hello all, my husband has surgery July 2012 removed 9mm tumor. Igf1 went from 730 to 285. Next check up igf went to 312. This concerned me and we rechecked it 8 weeks later and now it is 370. Needs to be below 328 to be normal. Gh is .4 all other levels normal. He still has diabetes 2 but it is very much under control with medicine. We are going to test again in 6 weeks. The endo says this is worry some. You think??? (Sarcastic) Anyway he is saying if it is high again in 6 weeks we need to decide further action to take. He is thinking trying cabergoline first, then somavert monthly shots. And we might want to consider radiation but that doesn't show results for two years and can damage other glands. But if we start the medicine he will be on it for the rest of his life and I have read the medicines are bad for the liver. Any advice/support appreciated.
J0KEYJ
J0KEYJ
Lots of hugs and smiles..been in a battle myself..but one thing although knocked we are determined..way to go you
Aworriedwife
Aworriedwife
First, that is awesome news! Second, is there anything at all that you can attribute the rise and subsequent fall in numbers to? Any change in any mediation (otc or prescription), supplements or any change in lifestyle? Do you know if the same lab was used for all tests? That's a pretty big bounce in numbers. As you know, we are going through this to, and unexplained changes in lab results are troubling. How do we know which readings are correct? Are they going to retest again to make sure the levels remain low?
acrobully
acrobully
Hi guys,

I had my most recent bloods taken in London and sent one sample to my surgeon in Germany (Prof Fahlbushe). The London results came back 260 and the German result was 174.5 and this is from the same blood sample! So it just goes to show how each lab differs.
tbeckner
tbeckner
Worried wife, no there is no known reason that it went down. Same lab. Doctor is perplexed too. Trying to get him his 1 year check up with surgeon and get MRI but they won't call be back! We will probably retest in August. I'll let you know.
Aworriedwife
Aworriedwife
Wow, Acrobully, that's interesting to hear. May have to ask if there is the possibility of sending bloodwork out to more than one lab.

In my usual "leave no stone unturned" fashion, I've racked my brain about anything that has changed in the six months between blood tests. The only change is that my husband started taking omeprazole for severe reflux. I found research stating that omeprazole increases a protein that binds with IGF-1 and extends it's half life in the body. Could this be the cause of his elevated IGF-1? The obvious thing to do is stop the omeprazole a couple weeks before his next test. Problem with that is that he ended up in excruiciating pain and couldn't even work, so back on the omeprazole. Apparently the meds have to be tapered off very slowly. Oopsy, guess I should have researched that with my regular vigor. So, we'll retest end of this week or first of next. If the numbers are still up I'll send him to his endo armed with the paper about the drugs effect on the binding protein. Hopefully, it will makes more sense to a doctor than it does me. But, it stands to reason, if the IGF-1 is staying in your system longer, your level would increase.