Saw Dr Dobri (neuroendocrinologist at Cornell) in NYC today about my pituitary tumor and hormone issues. Have a lot to think about and curious what you guys think. This is about a 5mm adenoma that appears to be non functioning.
Dr Dobri thinks (and is probably right) that my estrogen from testosterone therapy is driving my prolactin up. We discussed either lowering my dose or going on anastrozole (estrogen blocker). She advises against surgery. I like this because there have been a few times when I had my T dose lower, and my sex life returned to its former glory. I don’t like this because I had debatably high-ish prolactin before TRT. But it was technically macroprolactin (bound to IgG/biologically inactive).
Before her, I also saw Dr Agrawal at NYU. She’s in favor of removing the tumor to bring my prolactin down, but wants me to stop TRT to see if my testosterone goes to normal on its own then. I did feel we meshed much better (she asked if I’m in the medical field and was thrilled I brought/read real studies), and I feel this may be a more permanent solution. However, her surgeon (Dr Pacione) was more concerned about removing the tumor given its location. The challenge of stopping TRT and the uncertainty of the surgeon are my only major concerns. In the surgeon’s favor, he is experienced, it’s NYU not some chop shop, and his reviews online are extraordinarily positive. I don’t think he’s an idiot by any means, but the Cornell surgeon said the location of the tumor is no big deal to him.
My current plan is to continue working on tapering off nicotine (which raises prolactin) while deciding if I want to lower my T dose or try running anastrozole (really don’t want to) to lower prolactin. Dr Dobri’s intention being to see if we can get prolactin in range by bringing estrogen down.
I do appreciate both of them having the logic that there is something causing the elevated prolactin and sexual effects (whether it be the tumor, E2 driving it up, or something else), and that it’s worth finding and treating the cause rather than just sticking me with more hopeless ForeverChemo™ (aka cabergoline). As Dr Dobri said “that’ll lower your prolactin but it won’t tell us why it’s high or if that’s even your problem”.
I do feel like I’ve been 85% where I want to be, at least resolving the sexual component, via TRT. But I’m also in a pituitary tumor support group, and the positive stories on quality of life following removal are hard to ignore. There is the risk, of course.
What do you guys think?