Prolactinoma

[FREEM]

Bear with me ... It's a strange one.
So 4 years ago I had a blood test.. I can't even remember exactly why.
It showed v v high levels of prolactin. My Gp suggested prolactinoma as it wa as I high .
I then before I had a scan became pregnant and although I had some visual field tests it all fizzled out and was never rechecked.
Completely put to the back of my mind which is the weird part... My baby ended up in hospital for 6 months with serious health issues and I honestly forgot all about it
Anyway last week I've had discharge from my breasts .. milky.
I've become a disorganised anxiety ridden wreck as well.
Anyway think I need to revisit this.
Anyone have this... if I do have a prolactinoma what happens

[Bunnyfuller]

I had high prolactin - it was caused by my thyroid. Once that was corrected the prolactin went back to normal.

[FREEM]

ah that is interesting.

[Laniakea]

My dd (19yo) has one - diagnosed completely incidentally. She was having gynaecology investigations for abdominal pain (eventually diagnosed as IBS!). They did bloods found high prolactin - did more bloods to rule out multiple endocrine neoplasia (extremely rare) - did an MRI & diagnosed the prolactinoma. Her treatment is half a cabergoline (Parkinson’s med) every week & she has her prolactin levels checked by her endocrinologist every year or so. There’s talk of stopping the cabergoline after a few years - to see if it starts producing prolactin again - sometimes they just become inactive.

It has pretty much zero effect on her life except when she’s silly & ‘forgets’ the cabergoline - her periods become irregular after a while (sure sign the prolactin is high) & she gets awful gastritis for a few days when she restarts treatment.

[Laniakea]

Oh I have a friend who has one too - hers become completely inactive after her third pregnancy & hasn’t required treatment for 15+ years.

[WillowSummerSloth]

I have one. Had it about 15 years now. Initially I was on cabergoline and had an MRI scan and vis field testing every couple of years or so but mine was stable for over a decade so I was discharged. They only cause problems if they get bigger (>1cm I think) and press on the optic chiasm. Then you can need surgery. Don't worry about it too much but def get it checked as sounds like you need the medication x

[FREEM]

thanks everyone . struggling to get a gp appt will keep trying