For some odd reason I'd hoped this visit would've gone well. No such luck. Went to UCSF today to see my endocrinologist. My fasting GH was 2.8 ng/mL, suppressed GH after 1 hour was 2.7 ng/mL, after 2 hours was 2.2 ng/mL. Didn't quite make it under 1 ng/mL. My IGF-1 was 464 with a reference range of 126 - 291. My doctor told me again that as far as he's concerned the assay range for the IGF-1 has been changed too much recently to use my IGF-1 level as a predictor of how well I'm doing.
So going strictly by my failed GH testing he's recommending I go up to the 30mg Sandostatin LAR, and check back with him after 3 full months on the med. Visibly I look better, more swelling has gone down with the increase in the last few months to the 20mg. But I really don't want to think of where I go from here when I find out the 30mg doesn't work. I'm sick of fighting with this disease already. I feel more like a 50 year old than a 31 year old. I'm fatigued all the time even though my thyroid and other numbers are good. My headaches have improved but I still have them quite often. I have heart palpitations sometimes but my EKG was fine. Everything seems *fine* but I don't FEEL fine. I'm still waiting to discuss my latest MRI with my doctor. But my last MRI was good and my GH was still too high. I really don't want to consider radiation and possibly damaging my pituitary gland further, but what option do I really have?