Prolactinoma - some hope and tips
This forum was so helpful when I got diagnosed three months ago that I just wanted to give some hope and tips to others scrolling here after diagnosis. I got diagnosed in May after I started having vision issues and I went to ER for possible stroke. They found the tumor. I was lucky in that it was small but still caused vision issues. I say lucky because many battle fatigue, weight gain and headaches for years and doctors ignore the symptoms. I had a curtain of darkness around the periphery of my right eye and my vision changed in my left to being near sighted out of the blue. Because of the vision issues, the ER did a lot of tests and found the tumor.
My son has a top endocrinologist in Orlando, FL and he agreed to see me. My son also had high prolactin that was discovered in high school along with other endocrine issues so maybe there is a genetic link as I’m 59 and now being diagnosed as well. My prolactin was 147. I started Cabergoline in May at .25 twice a week for two weeks. then increased to .05 twice a week. Three weeks later my prolactin was too low so Dr decreased to a full pill once a week, and half pill once a week. Like many have reported the full pill knocked me out for two days, although my migraines were so much better. I switched to half a pill three times a week and that has been a game changer. Same dosage overall for the week but I tolerate it so much better. So that’s an idea for others
The dr also increased my estrogen which helped a lot. The weight did not fall off overnight. The endo added a micro dose of a compounded form of Zepbound to try and turn off the hunger hormones that gets out of whack with the tumor. It’s been 3 months since I started treatment ( only a month on the GLP1) and I‘ve lost 8 lbs. My energy is better. I still get totally exhausted the day after any social event but I’m just trying to rest on those days and not fight it. I do have a lot of brain fog but migraines are gone. i had been taking way too much Excedrin Migraine and learned I was probably having rebound migraines Thanks to the Cabergoline I was able to wean off the Excedrin and now I’m very cautious about reaching for any form of Tylenol. After three brutal days, I was successfully weaned off it.
So I’m feeling hopeful that things are moving in the right direction. Thanks to everyone that shared their journeys on this forum it really helped me so I hope I can pay it forward