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...

360 Members
1,401 Posts
0 Online
Endocrine System
/ Prolactinoma Support Group

What were your symptoms, how were you diagnosed?

sahmLaura
sahmLaura
Hello. I am researching Prolactinomas. I was diagnosed in 2008 with Graves Disease (Hyperthyroid) and within a couple months of starting meds, my FT4 dropped and stayed low. I have felt extremely HYPOthyroid for a long time. I came off the meds about 6 months ago and my FT4 and TSH is still low-normal. In researching my latest labs I found a lot of references to pituitary with low FT4 and TSH. Then, in researching pituitary I came across the symptoms for prolactinomas and realized I have a symptom that I never knew was a symptom for anything - galactorrhea. Its not a lot of discharge, it is usually just some dried crust-like on the end of my nipples. If I get it off, it comes right back. Sometimes I'll have a little stain on my bra, but its not enough to soak through or anything. I've had it for a long long time though, even before my two kids. The couple of times I've questioned it, I was pregnant and they just told me my milk was coming in.

I also have absolutely NO sex drive/libido and my marriage is really suffering from it. I've read that symptom quite a bit on here as well.

I'm calling tomorrow to get in with an internist here in town who has interest in endocrine, but of course want to find out as much as I can about it. I guess the first step is to have prolactin levels checked.

So, I'm just curious as to how you came upon having your pituitary problems diagnosed and what symptoms you had.

Thanks!
Laura
deleted_user
deleted_user
It may not seem appropriate for a man to respond to this but here goes:

My first major symptom was erectile dysfunction. I had drugs thrown my way, which helped for a while, then I thought it might be the antidepressant I was taking.

My second symptom was hot flashes, night sweats, and fatigue.

My next symptom was the growth of breast tissue...gynecomastia.

I've gained 40 pounds in the past few years. I attributed some of this to the weight gain, then I started noticing a sharpening of my nipples.

For a guy, I've got a nice set of knockers! ;)
deleted_user
deleted_user
Oh, yes...no libido.
deleted_user
deleted_user
I meant to mention, also, blurred vision in low light situations...headaches...and sensitivity to light. These symptoms are all standing, even with treatment.
gmdm2009
gmdm2009
My 16 year old daughter was diagnosed with a large prolactinoma beginning of September, her
only symptoms headaches and never started menstrating. Pediatrician started with an pelvic ultrasound and bloodwork, the bloodwork showed her prolactin level at 367, sent us for an MRI and found the tumor.
sahmLaura
sahmLaura
Thanks tigerpaws, I appreciate your response. That is interesting that you mention the blurred vision in low light. I hate driving at night because of it. I noticed probably about a year ago that while driving at night the headlights coming toward me look really strange. Kind of like halos around them, continuing around and around, getting bigger and bigger. Kind of what you'd think wearing glasses would be without having the anti glare, I guess. I know that probably sounds strange. My low light vision is terrible. My vision just lately has been a little worse too, I've been complaining about needing to get my eyes examined again and needing a glasses prescription changed.

How long have you been on the meds? Have you seen any improvement with anything?

Did they test your prolactin levels, I guess?

gmdm-were her headaches constant or did they come and go?
gmdm2009
gmdm2009
Her headaches are pretty much constant, the tumor is pressing on her optic nerves. It seems that when she takes the cabergoline it intensives them a little. Since she doesn't drive yet she isn't complaining about night vision. What is your prolactin level.
deleted_user
deleted_user
Years before my diagnosis, I noticed halo's around the hanging lights in the church santuary. I attributed it, like the other symptoms, to getting older.

I didn't need glasses, of any sort, until age 46.

My eyes secrete these really thick tears and get very red and glassy when I have a hotflash. My wife asks me, all the time, "Have you been crying?"

I've heard that tears have high levels of Prolactin. There may be a correlation there.

Those night halo's are common with me too.
gmdm2009
gmdm2009
Laura
Listen to Dr. Tigerpaws, he has alot of info
and insight into this, he has been my greatest source of information and strength since my
daughter was diagnosed. He is a great friend to have here.
deleted_user
deleted_user
Thank you, I appreciate the compliment.

I've found tremendous relief of symptoms with a dose of Strattera every third or fourth day. It really helps with focus and fatigue, in addition to physical aches and pains that go along with the condition.
deleted_user
deleted_user
Anohter guys response: My symptons seem started with severe headaches, then I grew boobs. Already was taking thyroid medication. The my smart doctor had me go to the specialist and was diagnosed with the prolactinoma. This caused my original throid symptom so off the thyroid medication on to bromocriptione. Although there were side effects, the tumour did shrink thus taking the pressure off my optic nerves and no more headaches.

For the libido , no problems here, matter in fact the bromocriptine seem to make me friskier... Still have the man boobs.