Prolactinoma Surgery

Did u have a puitary tumor, that was producing high levels of
Prolactin , also did the surgery had to do with invasive surgery, like going
Thur ur nose? I have a puitary tumor, and my prolactin levels were
High, that's how I founf out, I have go many concerns, please write me back
And tell me all about it, right now my Encorine Doc are running tests, us know blood work and thyroid tests...I am so scared

I also have a prolactinoma but was told no one would remove it because it's so invasive and there is a chance it will grow back within 5years. I take cabergoline 1×weekly and it's aweful I've got daily headaches nausea and fatigue that are so much worse with this med. I've been taking it for 5years now, with short breaks to see if my prolactin levels stay normal without meds. I always end up back on it this last time I was only able to stop for 2 months before my levels shot up again. So bummed. Would you say your surgery was invasive? I've head that it's done so often now it's kind of easy peazy. And how have you felt since?

Hi, @peetiepie - wanted to check in with you on the prolactinoma and the daily headaches, nausea and fatigue that are so much worse with the medication you are taking, the cabergoline.

I also thought that @kdubois @upartist and @oldkarl might have some input on your situation with the prolactinoma you've been told no one would remove and also the symptom worsening that you've faced with the cabergoline.

How is it going?

This note is a response to Peetiepie. Hi Peetiepie. Headaches and nausea are hard to deal with. My daughter’s pituitary adenoma was removed at Mayo a very long time ago and there has been no regrowth. These adenomas come with many variations according to what area of the tiny pituitary gland the growth is on, and thus which symptoms are produced. My daughter’s symptom was lactation. The premedication was unsuccessfull in reducing the size of the growth. Surgery was required. The surgery was through her nose. While seemingly not invasive, it is a very small and risky surgery, because you are entering the brain. I hope that you are under the care of a team. Your visual field needs to be monitored, as well as regular followup imaging. Do your research on reliable sites, and dont be afraid to ask questions to your healthcare TEAM. These things sre justifiably scary. Knowledge and clarification can reduce fear. Good luck with this!
UPArtist

I was diagnosed with a prolactinoma in May. Since then ive had anaphylaxsis twice and been diagnosed with, RA, Sjorgens, SLE, & psoriatic arthritis. And also hypothyrodism. I cant get any of my Drs to listen to me but i logically think these could all be related. Any suggestions? Ive found articles online that suggest prolactin does play a factor in auto immunity..

I had to stop taking cabergoline. Months ago im stlll waking up with headaches. Nausea & vertigo daily

Hi @kimber3429 - similar. Microadenoma diagnosed as prolactinoma in 2012. Shortly after the pain started in my feet, then knees. Saw endo's, ortho's, rheumo's etc repeatedly but no one could diagnosed. Sympoms similar to gout but it was ruled out repeatedly. New rheumo thinks psoriatic arthritis with a side of high uric acid but still not sure. I'm in my early 40s now. The pain is all over now, consistently a 3 in the feet, 2-4 in knees, 3 in wrist, 2-5 lower back, 3 in neck. Inconsistently (3ish times a year) the pain is a 8-10 for over a week. I have no real point here but commiserating. Any one else?

Hi @kimber3429 @peetiepie and @prolactinomanyc I wanted to check in and see how you all are doing. How is your pain? Have you found anything that has helped it? What have your doctors said recently in regards to potential treatments?