Patient Comments: Prolactinoma - Symptoms

What were the symptoms of your prolactinoma?

Comment from: Mae, 25-34 Female (Patient) Published: February 24

I"m 27, was diagnosed with a prolactinoma in February of last year (2013); it was roughly 9mm. I am on bromocriptine and the breast milk and headaches stopped in August 2013 but have started again. I don"t have a normal period, but I do have one now, whereas before I did not.

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Comment from: STELLA, 25-34 Female (Patient) Published: November 18

I have been unable to conceive after 2 years of marriage. I was diagnosed of uterine fibroid, I did a surgery and got it removed successfully. After three months I went for HSG (hysterosalpingogram) and my tubes were confirmed ok yet still not pregnant, a month later I went for hormonal profile and the result revealed very high prolactin and TSH but I have never noticed any negative symptom like breast secretion. I have been on Parlodel and clomiphene for almost two months still up till now I have not conceived. I am very worried about the whole situation.

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Comment from: LS, 35-44 Female (Patient) Published: July 09

I was diagnosed in 2001 with a prolactinoma (1.2cm) and has been on Dostinex since then (.5mg once a week). My initial signs were weak eyesight and breast milk. After all these years and meds, I still produced breastmilk and my eyesight weakend even more. In 2011 I had breast surgury to remove the very enlarged milk ducts. I am happy to say I am milk and pain free now. I am concerned about the recent studies on the link between Dostinex (cabergoline) and heart valve problems. Is there anyone out there who has experienced this problem? Thanks LS - Gauteng, South Africa

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Comment from: DagnyT, 55-64 Female (Patient) Published: May 06

I've had a prolactinoma since 1986, but all this time I've been told it was an incidentaloma, and nothing to worry my pretty little head about. But four years ago (after two weeks in a psych ward in 2007 for unexplained suicidal depression) I got so sick I couldn't function at all. I was depressed and had panic attacks, still had galactorrhea, developed splitting headaches and nausea, chronic indigestion and gastroparesis and constipation. It was like my whole body was shutting down. Now I have no energy or motivation – just lethargy and apathy. I finally was referred to an endocrinologist after my primary care doctor labeled me fibromyalgia and put me in the "unhelpable" pile and washed his hands of me. My prolactin level was 117, with a reference range of 2 to 25. My thyroid tests were normal. I am awaiting an MRI. I was given cabergoline but can't tolerate it. My tumor was 6mm back about eight years ago when I last had an MRI.

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Comment from: hotchick, 35-44 Female (Patient) Published: January 03

I have a pituitary tumor and it grew from 4.1 to 5.5 mm. I am waiting for a fluroscopy and more field testing. I was put on Progesterin today.

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Comment from: CleveGal, 35-44 Female (Patient) Published: December 26

My prolactinoma symptoms went unchecked by my regular doctor for about six years. The first one was seemingly uncontrolled weight gain and an inability for me to lose any of it despite exercising vigorously and a significant change in diet. Then came irregular menstruation, skipped periods, and then eventually no periods. My doctor attributed it to menopause (I was 42 at the time). Technically she was right; it was menopause induced by the prolactinoma. It was my gynecologist who felt that I was too young to be going through menopause and who suspected the pituitary tumor. He referred me to an endocrinologist. The endocrinologist performed extensive blood tests and then, based on the results, had me get and MRI. These tests were really just to confirm what he initially suspected. He was not at all surprised by any of the results.

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Comment from: wilson1010, 35-44 Female (Patient) Published: June 14

My pituitary tumor was found when I had a severe headache that progressively got worse, eventually causing vomiting, vertigo, and intense pain behind my eyes. The tumor had hemorrhaged so it had to be removed once the swelling went down a bit. Now, my pituitary gland is not functioning so I am taking the hormones in pill form. Thankful for the second MRI that finally showed the tumor. Neither CT scan showed it.

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