Acromegaly Support Group

I think you need to seek another doctor's opinion. There are other conditions that involve overproduction of IGF-1, and you need to be evaluated to see if there is a tumor somewhere else that is producing it.The name escapes me now but there is a fairly common (for being more rare than acromegaly) disease where there is an abdominal tumor that produces the IGF-1.

Also, to answer your question, yes, I believe you should be concerned. I recently encountered an article (sorry - don't remember where - maybe the Novartis web site - MyAcromegaly????) that stated it was the IGF-1 that wreaks the most havoc on our body. Too much IGF-1 is NOT a good thing and ignoring it is NOT a good thing and a doctor that is ignoring it is NOT a good choice in my opinionated opinion. Please seek help from someone with more expertise.

Best wishes.

rose is right on....when I first found out I had acro...i sought out a second opinion..the neurosuregon...confirmed my plan of action...and told me that it is all about the IGF-1...that needs to get into normal range...everything i have seen or read....confirms that...

Have you seen an endocrinologist with training in acromegaly?

No, but my GH levels are normal

GH and IGF-1 are different and so it is the IGF-1 that is most concerning...hope you did look for that other doc...

You have been given good advice,my daughter has had 2 surgeries and radiotherapy for Acromegaly and we are still having trouble bringing down the IGF-1 this hormone is dangerous when too high, do you know your numbers, it is age related also,also the lung is another place where tumours can be,I think,unforunately with this disease one has to fight all the time and read and read, go back on some old posts, I have learnt so much from these, your body, your life. you deserve the best, we all do, b ut its so hard sometimes.Good hunting