Patient Comments: Prolactinoma - Share Your Experience

Has prolactinoma affected you or your family? Please share your experience.

Comment from: Ann, 19-24 Male (Caregiver) Published: October 15

My son was diagnosed with a prolactinoma at age 22 after he developed hypogonadism and felt constantly tired and irritable. His was a microprolactinoma, but despite the small size, it was having a profound effect on his hormonal balance. He is doing very well on cabergoline to bring down the prolactin levels and testosterone therapy.

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Comment from: Living well:), 55-64 Female (Patient) Published: March 19

I have a prolactin-producing pituitary tumor. When I stopped having periods at age 18, my doctor gave me birth control pills. This just made me sick and gain more weight. Finally, I was diagnosed by my gynecologist with a simple blood test showing I had a pituitary tumor in 1980. I had surgery to remove it but it came back. The endocrinologist gave me Parlodel, which shrank it. He then told me I could get pregnant. I did, but I started going blind and had to have a medical abortion. Now, 33 years later, I am still on Parlodel and doing well. I went from 30mg to 2.5mgs daily. I soon hope to have it reduced lower. I know my body well and notice side effects. I then cut down for a month and tell my doctor. I believe the prolactin-producing tumor sometimes causes your thyroid to produce a goiter. Ask your doctor to check your pituitary levels. I feel my thyroid was removed for no good reason. I also think that pituitary tumors seem to be hereditary. My cousin had similar symptoms for years and her doctor wouldn't check it. Then after putting her on birth control pills, she started to lose her sight and demanded to be checked. She also had a pituitary tumor but was able to get pregnant and carry it to full term. I speculate that eating habits, stress, and environment also contribute to our health issues. Try not to be frightened. This tumor is just there and I can dance, exercise and do anything. New patients: hang in there and give the treatment at least three months before considering surgery. It's a slow growing tumor most of the time. I feel that exercise is great and offers more benefits than any antidepressant

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Prolactinoma - Symptoms Question: What were the symptoms of your prolactinoma?
Prolactinoma - Treatment Question: What kinds of treatment, including medication, were used for a pituitary tumor in you or someone you know?

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