Patient Comments: Prolactinoma - Symptoms

What were the symptoms of your prolactinoma?

Comment from: SHarb, 25-34 Female (Patient) Published: November 20

My first symptom was breast milk production, although it was very little. I didn't worry about it until we started trying to conceive and could not. One and a half years after trying actively, I started having pain during intercourse. The doctor took blood and saw that my prolactin was double what it should be. He sent me to get an MRI which I am getting next month. In the meantime I am taking Dostinex twice a week for one month. Hoping to be able to have kids!

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Comment from: von, 45-54 Female (Patient) Published: July 28

I have all the symptoms of emphysema and chronic bronchitis; chest tightness and back pain, coughing blood, shortness of breath when I exercise, and always tired. Overinflated lungs is all that shows on x-ray but I cannot get diagnosed with anything, and cannot get the right medication. My symptoms get worse when I go the city with the smog and near the ocean and unflued gas heaters and cooking smells. So as you can imagine, everyone tells me it is in my head; definitely not. I have been perfectly fine up until 4 years ago when all this started. I don't know where to turn to next. I had bronchoscopy, CT chest scan, MRI of back (for the pain); my symptoms just are not getting better. I have seen 3 respiratory doctors and all say there is nothing and I cannot work out what's happening.

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Comment from: Soran, 45-54 Male (Patient) Published: December 16

It was spring 2010 when I took my child to a park to play and felt dizzy twice. Next day I went to the ENT suspecting I have some flu or virus, and the ENT sent me for MRI and we found pituitary tumor, type prolactinoma. My blood test shows over 250 prolactin. Since then I am under hormone therapy, and getting Dostinex, thyroxine, testosterone, plus vitamin B12 injection. Gradually I felt much better with regard to my movements! Memory, and sexual appetite were regained. After three years my doctor advised me to use Nolvadex 20 mg instead of testosterone injection, and I am little doubtful on that, but I just started use it and so far I want to see what kind of change it makes regarding pumping up my sexual power.

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Comment from: ilovefreebies, 25-34 Female (Patient) Published: October 03

I had my obstetrician/gynecologist appointment last month and blood work done. My prolactin level is high so the obstetrician ordered another blood test, and it still came out the same. So she asked me to see an endocrinologist because she said it might me a prolactinoma. I had headaches and blurry vision, I had my eye checked also before my obstetrician appointment, and I have a little prescription. Now I am hoping for a good result on my next appointment with my endocrinologist.

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Comment from: BB12, 55-64 Female (Patient) Published: October 08

In 1991 my body started to shut down. The doctor who first examined me said it was arthritis, then fibromyalgia, and then nothing. An endocrinologist did an MRI that located the prolactinoma (pituitary tumor), and the out of order blood counts. I had my first surgery in February of 1992. At that point, my symptoms included severe headaches and loss of vision. The size of the tumor was larger than a golf ball. In 2000 I was surprised to have the same symptoms reoccur. I went to another endocrinologist, who discovered the tumor had grown back. After this surgery, I went for 6 weeks of radiation treatment. I now have MRIs every five years. The second surgery caused more damage, and I now have scarring on left temporal lobe. I also have scar tissue in both left and right sinuses. I will be taking medication for the rest of my life. This is very serious, a life changer.

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Comment from: Buttercup, 35-44 Female (Patient) Published: March 11

Ever since I started with menses, I"ve been irregular, to the point of being anemic. When I was 25 I noticed I had a creamy discharge from my breast only during my period, which would be every month or every 3 to 6 months! Anyhow, I told my doctor and he said "don"t worry, this happens to some women, you"ll be fine and don"t squeeze!" I had a negative breast ultra sound and an ultrasound of my uterus, everything was normal so I didn"t worry until now 18 years later. My initial prolactin level was in the 50s, since my MRI was negative the endocrinologist asked me to be aware of other symptoms. Eight months later I now have headaches about 3 times a week. I"ve been juicing for about two years and trying to exercise though truthfully I think it"s only about 2 times a week but I believe all this helps. My last prolactin level was 74 last month now I"m waiting on another MRI. I hate being sick, but knowing me I won"t go gentle into the night! I appreciate everyone"s input.

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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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