I was diagnosed with a pituitary macroadenoma that is 25 mm at it's largest dimension "It measures approximately 16 mm in AP dimension x 24 mm in greatest transverse dimension x 23 mm in craniocaudal dimension." The largest concern was that it appears to be placing pressure on the optic nerves, though vision tests, including a field of vision test, showed no compromise of vision.
My neurosurgeon recommends removal due to the potential risk to my sight. As part of his preparation for that surgery, he's had bloodwork done and scheduled a baseline appointment with an endocrinologist. My bloodwork shows low total testosterone (200), low T4 0.73 and high IgF-1 Binding Protein-3 (5520). Unfortunately, the IgF didn't include a unit of measurement, so I don't currently know if that's crazy high compared to what I've seen online or just a different unit. I'm following up with the endocrinologist, soon.
At present, I'm just feeling like it's all coming at me so fast and I'm afraid of life on pills/shots or some debilitating impacts to my life. My neurosurgeon is the top in our hospital system and specializes in these. I trust him and think I've managed to accidentally snag a great surgeon.
The hormones, though, are scaring me. The high growth hormone is particularly worrisome to me because it seems to be so dramatically high. At present, my only symptoms have been more frequent headaches and a reduced sex drive, but no signs of feature change due to growth hormone. I'm wondering if anyone else here can talk a bit about their macroadenoma that might have been producing growth hormone and how that played out. Anything else that I should be considering based on these numbers?