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...
About me: 26 yo M diagnosed 10 months ago with a golf ball sized prolactinoma with a PRL around 2,000. My initial symptoms were frequent headaches, partial vision loss and low energy/libido (Test was around 100).
Today I thankfully have 20/20 vision again, much less frequent headaches, and definitely feel more energetic. The size is about 60% of what it used to be. PRL is around 40 but Test is still low (~220).
I managed mine by starting with 0.5 mg of cabergoline 2/week for 4 months, than up to 0.75 mg 2/week. I've improved my diet and fitness, and have been taking Curcumin supplements.
My reason for posting was to share some positive results with everyone, but also to ask how everyone else goes about managing their prolactinoma??
Also, would anyone mind sharing what kind of mood swings they've experienced and how you deal with it? I feel like I get annoyed at the stupidest things sometimes, and than I get this minor depression where i'll waste a whole day (weekend) doing nothing but laying in bed watching Youtube.
Cheers.
I had a very similar diagnosis, mine was the size of a golf ball as well but my levels were only 700. I had migraines, dizziness/blind spots, and no period/breast leakage.
I have been doing amazing with the cabergoline, the tumor has shrunk down so much and I am pretty much back to normal. It is maintained and I will just keep it that way by taking my meds.
I still have dizzy spells, as a side effect of the cabergoline and do have emotional lows and highs. I am not use to having the estrogen in my body so I feel like a crazy person. I get very happy and then one minute I feel like I could kick someone's butt and then the next I'm so sad and crying- haha I was never like that before, I was always soft spoken and emotionally level.
Do you ever get dizziness?
I definitely have gotten dizzy on occasion, especially when dosage is increased. It is called orthostatic hypotension if i'm not mistaken.
It hasn't been as been as bad as i've gotten used to the current dosage (2.0mg), but I still occasionally get a stuffy nose and minor headache/fatigue from the cabergaline.