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...

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deleted_user 10/31/2009

Just curious about other people's prolactin levels out there...I know labs can be different but just wondering other's experience.

My levels had been between 19-30 on 1/2 pill dostinex twice a week.
Then i went off dostinex for 2 months and they went up to 40, but i'm still getting my period and no lactating...so they put me back on dostinex.

When i was a whole pill 2x week my levels got down to 16. ..but it was may too much dostinex for me!

Anyone who has conceived with a prolactinoma...what were your levels at?

Thanks!

deleted_user 11/01/2009

My levels were 61 when discovered. On cabergoline they lowered to 1.6 within weeks, then post surgery they were 5 in August. October they had risen to 14. .. and I'm due for bloodwork. Haven't had my period for a year now.... and also trying to conceive :(

Did you lose your periods but then get them back?

gmdm2009 11/01/2009

My daughters level is 367, tumor is large, pressing on her optic nerves, she's only
16 but never got her period, that's how we found this, obviously conceiving is not an issue with her yet. We go back to the doctor in a week hopefully her levels have come down some.

deleted_user 11/01/2009

thanks for your reply. I got my period when I was 16 and had it regularly until age 21, then they stopped for 3 months. My levels were at 110, took dostinex, then dropped down to 20. My level is at 40 now, but I'm still getting my periods....not trying to conceive yet. My doctor wants me to stitch to bromocriptine first or get off everything and see if we can conceive..

deleted_user 11/02/2009

iam 20 and i have irregular periods.i was diagnoses prolacitnoma although v small tumor..and i am on cabergoline.my prolactin level is now 107 ..i dnt know whether i should continue it or i should get my MRI done...besides iam also curious tht cn i concieve or this prolactin fluctuation is going to affect it?nybdy who has had the experience or knwloedge plz share...thnx

deleted_user 11/02/2009

iam 20 and i have irregular periods.i was diagnoses prolacitnoma although v small tumor..and i am on cabergoline.my prolactin level is now 1.7 ..i dnt know whether i should continue it or i should get my MRI done...besides iam also curious tht cn i concieve or this prolactin fluctuation is going to affect it?nybdy who has had the experience or knwloedge plz share...thnx

deleted_user 11/02/2009

Hi gazi...wow my levels have never gotten that low....what does your endo say? I get MRI's every couple years. My doctor said that as long as i'm ovulating ..I should be able to get pregnant

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