Patient Comments: Prolactinoma - Symptoms

What were the symptoms of your prolactinoma?

Comment from: patient, 45-54 Female (Patient) Published: March 17

I was diagnosed with prolactinoma in early 1980s in my early twenties with symptoms of irregular periods, breasts producing prolactin, and increased weight gain. An MRI showed a tiny pituitary tumor, so began treatment with Parlodel. Although the instructions were to take 2.5 every other day, I became pregnant, and miscarried during the first trimester. After that weight, and breast size continued to fluctuate, but eventually I took 2.5 Parlodel twice daily, and brought symptoms to normal. Two more miscarriages, in first trimester followed. At age 33 finally I carried a baby full term, used one round of Clomid to help determine when ovulating, but started to have spotting during second month and discovered I had a blood antibody that attacks fetus (side note I have many allergies/asthma). So at that time (1995) I took one baby aspirin a day to thin blood until delivery and carried full term. I resumed Parlodel treatment 6 months after breast feeding. Second child came in 2002, again I went off of medications during pregnancy and used heparin shots until discontinued by 4th month. In 2014 I have entered menopause, and physician wanted to take me off of medications. I fought it, as in the past when he suggested to do this, prolactin increased, then I must go through the weight gain, low energy level, etc. (I feel like I have gone through menopause many times). Then the real thing in 2013 to 15. I had an ocular migraine (never had issues in past) but MRI showed no evidence of tumor, or reason for the migraine, but I was forced to stop Parlodel. Three months later, prolactin levels were rising, around 30, so I was allowed to go back on medications. I am currently on 2.5 twice a day. I hope my information will help others, and physicians to look at cases to better solve this issue.

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Comment from: betsy, 19-24 Female (Patient) Published: August 12

The first sign on my prolactinoma was on my 16th birthday. While in the bath, I noticed my breast had leaked a pale white fluid. I cried to my mum, who was horrified thinking I was pregnant. Obviously, still a virgin, I was so confused as to what it was. My general physician said it was nothing to worry about, so I didn't; for 3 more years. It was only when I went into the doctor's for the 3rd time, saying I wasn't having periods, was I sent to have an MRI scan. I am now 19 and have been on cabergoline for over a year. It makes me extremely ill, depressed and anxious. I am very confused about what's next for me, it seems that with my age, doctors hold off from telling me what really going on. I really hope I can have children one day.

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Comment from: curtdave, 55-64 Male (Patient) Published: April 14

I suspect that I had prolactinoma for twenty years before it was diagnosed. It affected me mostly as sinus problems, headache, mucus discharge and drainage that caused heartburn. I did also have low sex drive and was receiving testosterone injections. I went to 3 different ear, nose and throat physicians and had 3 different sinus surgeries. I went to a fourth ENT because none of the surgeries or treatments relieved the sinus issues I was having. The fourth ENT performed a CAT scan and found something unusual and sent me for a MRI. The MRI showed a very large tumor on my pituitary gland, it was so large that it had invaded my sinus cavity. Blood tests showed low T, and very high prolactin levels. Cabergoline was prescribed and in less than a month I lost 50 pounds, my sex drive was back, sinus issues went away and testosterone levels went to where they belong. My endocrinologist seems to think that the weight loss had nothing to do with the tumor but I think it does, I have not changed my eating habits or how much I exercise. It"s been over two years now and I feel great, better than I felt through all of my forties and my early fifties.

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Comment from: Keatta, 35-44 (Patient) Published: December 27

I was diagnosed with prolactinoma (adenoma) when I was about 25 years old; that was about 14 years ago. I had an endocrinologist who prescribed bromocriptine for my galactorrhea (breast secretions) for about 8 years. I asked to attempt to be off of it. He dropped me as a patient. I was off that drug until last year at age 38 when my symptoms returned. I've since had vertigo, headaches, and been to a new endocrinologist, who doesn't seem to think there's cause for concern at all. He's sending me for an MRI, considered non-emergency of course. I practically had to beg for it. I take a probiotic daily and I'm wondering if this is a contributing factor to this resurfacing galactorrhea. My TSH and TRH (hormone/thyroid) levels are normal apparently.

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Prolactinoma - Share Your Experience Question: Has prolactinoma affected you or your family? Please share your experience.
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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