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Diagnosed with Prolactinoma, more information?

By October 7, 2011 - 3:02pm
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So last week i went into the doctor because i had missed my period and thought i was pregnant. I wasn't, so they did a bunch of other tests to find out the causes for my symptoms.
Today I got the results and they told me I have Prolactinoma. they said My prolactin levels are 11 points higher than theyre suppose to be, and they referred me to an endocrinologist.
I was wondering what i should expect from my appointment next week with the endocrinologist, and what can I do in the mean time to calm down the symptoms?

Also they said this could be the reason for my weight problems.
What exactly is prolactinoma? I was freaked out when they told me.


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EmpowHER Guest

I was diagnosed with a prolactinoma 42 years ago. I was given radiation treatment as the tumour was judged to be quite small for an operation. Since then I have been treated with hormone replacements. Thyroxine, hydrocortisone and calcium. I was unable to have children but adopted two beautiful daughters.
I am constantly reviewed at the hospital and their care has been wonderful.
Sadly, probably due to the prolactinoma, my libido was affected and my marriage broke up. If this affects you, there is help available.

January 5, 2012 - 3:03pm

Unfortunately, many specialists do not accept insurance because reimbursement for services. Getting an appointment with a specialist can sometimes take a few months. I can suggest that you discuss payment options with the office or business manager at the endocrinologist's office. Maybe you can agree on paying a certain amount, which you can afford, over a period of time.

October 11, 2011 - 5:48pm

You need to consult your physician. Though these symptoms may seem benign to anyone else, you have been diagnosed with a noncancerous tumor on the pituitary gland, which is located at the base of your brain. I would not take any chances. Your symptoms may be nothing serious, but do tell your doctor about them.

October 10, 2011 - 4:39pm
(reply to Maryann Gromisch RN)

the endocrinologist my gynecologist referred me to does not accept my insurance. they said i would have to pay $296-425 per visit, which doesn't include treatments and bloodwork/other testing. I have called 7 other endocrinologists in my area and they all have said they aren't accepting new patients, or that they won't have open appointments until december or january. I am not sure where to go to, or what to do. I need to find a endocrinologist, but those 7 were the only ones in 3 counties near my area and in my area. I don't know what to do.
Any advice? I have spent all day calling different endocrinologists, and am now frustrated.

October 11, 2011 - 12:41pm

Always check with your doctor before taking any medications, even over-the counter drugs, Here is the link to an article on prolactinoma:
It covers a lot of information.

October 7, 2011 - 5:29pm
(reply to Maryann Gromisch RN)

Hi Maryann,

Thanks for the article, I read it thoroughly. Last night though when I went to sleep, I had a headache, and the right side of my nose became stuffy, and I noticed some dried up blood. My right eye was watering as well. I decided to use nasal spray, because I simply could not go to sleep like that. This morning, I still have a slight headache, but I don't feel as much pressure in my nose as before.
Is this normal with a prolactinoma?

October 10, 2011 - 10:53am

A prolactinoma is a noncancerous pituitary tumor that produces a hormone called prolactin. This results in too much prolactin in the blood. Prolactin is a hormone that triggers the breasts to produce milk (lactation). Although prolactinoma isn't life-threatening, it can impair your vision, cause infertility and produce other effects These effects include irregular menstrual periods or lack of menstrual periods,
milky discharge from the breasts when not pregnant or breast-feeding and painful intercourse due to vaginal dryness.
The endocrinologist will probably obtain your medical history by asking you questions or having you fill out a health questionnaire. You may have a limited physical exam. Further testing such as blood tests and a MRI may be ordered.
There is nothing you can do to correct the symptoms. Treatment includes oral medications to decrease the production of prolactin, reduce symptoms or shrink the tumor. Sometimes, surgery and radiation therapy are necessary.
Hoping all goes well with your endocrinology appointment.

October 7, 2011 - 4:48pm
(reply to Maryann Gromisch RN)

Hi Maryann!

thanks for your response. is it safe to take aspirin to release the pressure & headache in my head? Also have a lot of nausea and occasional vomitting. Is that normal with this?
They said normal levels are 4-20 and mine is 32.8.

October 7, 2011 - 5:15pm
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