Prolactinoma Support Group
A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...
Hey there,
i cant tell you all how much I appreciate this group! My husband had his prolactin levels tested and they came back 71.5, his dr says he has a prolactinoma, no other info and she left for vacation for three weeks... so we scheduled an MRI but they are booked for weeks. We have two young kids he is only 30 years old and we are scared, we have no answers so I was wondering if anyone has had this situation as well, should we be so worried about the chances that it’s grown into other parts of his brain? He doesn’t have many symptoms sometimes head aches. He does feel like his ear is plugged on his left side but it’s not severe. He definitely has the weight gain and pretty low testosterone.
If anyone has any advice or experiences to share that would be so so amazing.
Thank you!
First of all don't be scared. Prolactinomas can affect hormones, but they won't multiply to other parts of your brain. They're pretty benign.
I'm a guy who was diagnosed with a macro prolactinoma, over 1cm. My prolactin was really high, like 1600 and I had low T. It didn't feel like anything was wrong except for low libido / ed that I thought was age related. When I discovered that it was due to a treatable prolactinoma, I was excited.
I started a low dose of cabergoline, 1mg per week (2 tabs), and a few months later my prolactin was down around 200 and testosterone was back to normal. I lost a bunch of weight, 30 lbs. My libido and ed challenges went away. I actually felt like a teenager, which was good and bad.
Cabergoline is a dopamine agonist, which basically means you absorb more dopamine. From some of the research I've read, it appears that boosting dopamine has some common effects as suppressing serotonin. In fact some of the side effects of cabergoline are similar to low serotonin, such as depression, anxiety and gastric problems.
I felt depressed, obsessive and anxious, and slightly dizzy at times. It was subtle at first, but recently when I increased my dose to 1.5mg per week, it became worse. Once or twice I had mild panic attacks at work, and needed to calm myself down. I've also had a persistent stomach ache that's interfered with my sleep.
I've been on the higher dose for almost two months now after a year of taking the lower dose. I have an appointment friday where I'll see if my prolactin levels are low enough to begin tapering cabergoline. I can't wait. Cabergoline hasn't been debilitating, but it's definitely affected my quality of life, interfering with relationships and work.
To someone just starting off, I'd say be consistent with your dose and pay attention to your mood. Also, obviously, try to take as little as is effective. I was sloppy with my dosing at first, and I didn't expect it to make me more anxious or obsessive. Had I been aware, I may have been better able to control my behavior. Also make sure you're exercising and getting sunlight. These naturally boost serotonin-- recently that's helped even me out.
Finally be aware that some people take cabergoline indefinitely. There's a high rate of recurrence of prolactinoma after people stop taking cabergoline. I didn't know that going in, and I would have been more careful had I known. I plan to start tapering my dose soon regardless of my prolactin levels. Slightly high prolactin is worth it to me to avoid cabergoline. I hope withdrawal won't be too bad, and I'm looking forward to regaining my old clear-headed self.