Prolactinoma Support Group
A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...
I just got a result of 27.8 back on a Prolactin test (I'm in the US, so that's US units).
My endocrinologist is having me re-test for prolactin level, and is also doing a macroprolactin assay-- we're waiting to get the results of this second round of testing back.
I'm a 36 year old woman, and suspect that these prolactin levels may be behind a bunch of unexplained symptoms I've had for about 4 years now. I'm wondering if others of you who have either hyperprolactinemia or a prolactinoma diagnosis have experienced the following:
-night sweats (especially from the waist down) & hot flashes at night
-shortened menstrual cycle
-melasma (dark line) on upper lip & patches on forehead
-breast swelling and tenderness in week before & during period (not typical PMS for me-- this is new)
-nausea that comes on after dark & gets worse til bedtime, then disappears
-lactose intolerance (just started at age 34)
-exercise intolerance (used to be a competitive athlete, now I get sore immediately after exercise)
-sugar intolerance, sudden nausea after eating sugary foods
I was getting regular migraines but seem to have those under control by taking a magnesium supplement every night before bed.
The weirdest symptom I have, and would like to hear about from others who've had a prolactinoma, is an alteration in my vision. Specifically, my vision got very suddenly blurry about two years ago, to the point that I needed glasses. I am now decidedly nearsighted, but from day to day it varies dramatically how blurry things are, and some days I don't even need my glasses!
I also get a weird darkening of my vision around the edges when tilting my head & gaze downward, or if I rock my head from side to side.
Anyone else with a diagnosis experience anything like what I describe here?
I'll post back with any future results/diagnoses.
My endocrinologist is having me re-test for prolactin level, and is also doing a macroprolactin assay-- we're waiting to get the results of this second round of testing back.
I'm a 36 year old woman, and suspect that these prolactin levels may be behind a bunch of unexplained symptoms I've had for about 4 years now. I'm wondering if others of you who have either hyperprolactinemia or a prolactinoma diagnosis have experienced the following:
-night sweats (especially from the waist down) & hot flashes at night
-shortened menstrual cycle
-melasma (dark line) on upper lip & patches on forehead
-breast swelling and tenderness in week before & during period (not typical PMS for me-- this is new)
-nausea that comes on after dark & gets worse til bedtime, then disappears
-lactose intolerance (just started at age 34)
-exercise intolerance (used to be a competitive athlete, now I get sore immediately after exercise)
-sugar intolerance, sudden nausea after eating sugary foods
I was getting regular migraines but seem to have those under control by taking a magnesium supplement every night before bed.
The weirdest symptom I have, and would like to hear about from others who've had a prolactinoma, is an alteration in my vision. Specifically, my vision got very suddenly blurry about two years ago, to the point that I needed glasses. I am now decidedly nearsighted, but from day to day it varies dramatically how blurry things are, and some days I don't even need my glasses!
I also get a weird darkening of my vision around the edges when tilting my head & gaze downward, or if I rock my head from side to side.
Anyone else with a diagnosis experience anything like what I describe here?
I'll post back with any future results/diagnoses.
HOWEVER - you should make an appointment with your ophthalmologist to examine your eyes. Changes in peripheral vision is concerning if a prolactinoma is suspected due to the pituitary gland's close proximity to the optic nerves. I would make an appointment soon. That exam may help speed things up for you getting your high prolactin investigated (MRI with contrast is the best test according to the 2012 guidelines in the Journal of Endocrinology - Feb, I think.). All the best to you!
Do you think your daily urine output has increased? Is your estrogen below normal? Prolactinomas are clinically associated with Diabetes Insipidus. That's NOT insulin-resistance Diabetes, and has NOTHING to do with glucose. If you have a prolactinoma, and it's secreting prolactin, your pituitary will totally malfunction-- you'll make LESS of everything else! If you're on a birth control pill, stop it NOW. It's like pouring gasoline at a fire. If you haven't had a "pituitary cuts MRI WITH contrast, DEMAND ONE! I saw 21--TWENTY ONE--endocrinologists over four years and every single one ordered a 24 hour urine collection. Every single time I produced OVER SIX LITERS of urine. Not once did these endocrinologists saw ANYTHING or SAID anything, even though I'd say, "why am I making all this urine?" I felt sick, I was chronically dehydrated, and had "malignant hypertension", BP like 160/120 with heart rate at 125-170! I was seen at world-famous medical centers -- in Wash DC, Baltimore, Rochester MN. Did they help me? No. I had 8 non-traumatic fractures. Because of constant Ca Ox kidney stones and crystals we begged a urologist to please see if I had elevated minerals in my urine. He ordered it. The minerals in SEVEN liters of urine had EVERY SINGLE MINERAL 300-400 TIMES the upper normal levels. Did that move my diagnosis closer, NO. Inform yourself. Search online with the terms "hyperprolactinemia" and "pubmed" you'll find answers that way. Pubmed is the NIH database of medical research. Don't think doctors are going to THINK about your case. You need to put information right in front of them and say, "look at this", that makes it harder for them to blow you off.
My late mother told me 30 years ago that on the day your family is throwing dirt on your coffin, the doctor climbs into his nice warm bed without a THOUGHT ABOUT YOU. Take charge of your care, and don't let doctors ignore you. But if a particular MD won't help, find another. Let us know how you are.