Experiences with high prolactin? Please!

[Diagnosemeplease]

Hoping to hear anyone's experiences who've had high prolactin levels shown on a blood test please! Especially if breastfeeding.

I had bloods done after feeling all round crap for six months postpartum. Dizzy spells, only lost 4kg of weight in 6 months despite being religious about eating healthy and working out, constantly twitching thumb, crap skin, and just feeling blegh beyond the usual sleep deprivation that comes with a newborn. I was kind of hoping to be told I had a slow thyroid to give a reason to still being this overweight. 🫣

Instead it showed I had a high prolactin levels over 1000. My GP said for a breastfeeding mother the upper limit would be around 400. Especially as my DC has started solids and much prefers them to milk.

I've been referred for an MRI & to see an endocrinologist. My GP referenced Prolactinomas, as I had vision changes in all of my pregnancies but my local maternity hospital told me it was just hormones so I never had a scan. As I wait for the long away appointments, curiosity is killing me. Has anyone else had high prolactin levels while breastfeeding? What did it turn out to be please?

I’ve posted on this thread which is related -

https://www.mumsnet.com/talk/conception/5308854-did-caborgoline-or-similar-help-anyone-ttc?reply=143335440

1000 isn’t extremely high, especially for someone breastfeeding but yes it does need investigation. If it is a prolactionoma the treatment is very straightforward- at those levels you’d normally be looking at medication (as per the thread above) rather than surgery. My levels were in the 4000s and my MRI was normal - the mri only shows if there is something structurally abnormal with the pituitary and most prolactionomas do not show on an MRI unless they are very large.

Have a google of the Pituitary Foundation. They have a specialist nurse helpline and specific information which maybe useful.

I have a prolactinoma, and it has never caused me any issues other than interfering with ovulation. So please don’t worry - I read that a significant proportion of us do, but as it rarely causes issues they’re often not known about.

I had high prolactin levels (although not whilst breastfeeding) and it was the start of eventually being diagnosed with PCOS.

Thank you all ! Lots of interesting food for thought.

@Pigeonqueen I hope the caborgline helps you. 🤞🏻

Cabergoline was very good when I was younger. I’m now post menopausal at 44 (went into menopause at 37) and my prolactin remains high around 900 but they’re not concerned about it anymore and as I don’t want to conceive I don’t need to take the cabergoline anymore.

My bad sorry! I assumed it was your thread - I should have checked before posting.

Have you looked into possibility of benign pituitary tumour. Endocrinologist could advise or pituitary foundation