Hiya-
So sorry to hear of your woes.
Do you know about acromegaly which is caused by elevated growth hormone levels?
You might read things about it. But it is not uncommon for folks to have killer headaches from your jaw growing and changing. Also the joint pains are another tell tale symptom. Have your feet changed in size? Has your doctor brought any of this up?
Horselip
It is possible that you have more than one tumor, or more than one issue going on up there.
I had elevated prolactin, and the docs gave me meds to lower it, but I still felt horrid - and it turned out that I had two pituitary tumors - the second being Cushing's.
Your growth hormone should not be high. See a proper doctor - a neuro-endocrinologist. Make sure your pituitary scans are dynamic - with and without contrast and the contrast is given WHILE you are in the machine and pictures are taken while you are in the machine while the contrast is given. Then you have the best chance of the tumors showing up.
Lactation can be attributed to cortisol as well as thyroid issues - so you need more testing. It sounds like you may have acromegaly. Get to a proper doc - it can be treated with medications - but you need to get to the doctor! The right doctor! Not just any endo can treat it.
I'm trying to get your topic moved to the brain/pituitary tumor forum, because I think you would get a lot of feedback there from other pituitary tumor veterans. I have a tumor myself, found in 2008, but don't feel like an expert. It does sound to me like you need to get a new set of doctors.