Elevated IGF-1 but no Pituitary Tumor

[mouscelia]

Hi, I went to an endocrinologist about constant hypoglycemic attacks occurring within 10 minutes of beginning a normal workout.  They ended up finding a slightly elevated ACTH during an ACTH stimulation test, and a mildly elevated IGF-1 level up to 4 diffferent times.  I then had a growth hormone suppression test which came back normal.  However, my growth hormone blood level and IGF-1 were still elevated.  I had an MRI which showed no pituitary tumor.  They want to recheck the IGF-1 again in 6 months and see if it is still high or gets higher, and if so, i am supposed to have more pituitary testing.  Do you know what this means and what I should be looking for?  They told me it did not explain any of my symptoms such as headaches, visual disturbance, blood sugar issues, fatigue, etc.  I also have fibromyalgia, and my doctor said most pts with fibro have LOW IGF-1.  I am not experiencing any noticeable growth like you would with acromegaly.  What is going on with my crazy body? LOL!  I can't get any answers out of the endo, so i am assuming they don't know what is going on with me?  

[Daniel M Prevedello, MD]

I agree with Rumpled. She is an expert.
These tests should be repeated and you should see a neuroendocrinologist.

[rumpled]

Early issues with acromegaly would not show the growth - the crazy bone growth is late stage and anyone can diagnose that.  Please find a neuro-endo and get your tests in to a pituitary center and see if one will take you based on your tests to get more testing and get to the bottom of this mystery.

Also see a neuro-optho - your bone issues may be happening in your skull and effecting your eyes.