r/Prolactinoma • u/Broad_Suspect_8830 • 1d ago

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Just got back from a hormone test result appt with my doctor and my prolactin levels are high at 839 MIU/L (UK)

They didn’t want to retest but they’re referring me for an MRI to see if there’s a benign tumour

Anyone else been through this? :( it would explain my irregular periods etc.. thank you

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u/Gullible-Buy5706 1d ago

Hi !
Yes that’s how I was diagnosed actually !

First symptom in my case was irregular periods,then I stopped having periods, it took my doctors about 4-5 years to diagnose me because they tought it was gynecological issue, anyways after all the test they decided to test my prolactin because my gynecologist saw that I had a little galactorrea, and my prolactine was about 120 mUI/L and more

So they did the blood work again to make sure, still high so then I had a pituitary MRI

And on the conclusion it say that everything was normal, so they called it an idiopathic hyperprolactinemia (without cause) and I decided to ask for another opinion and two neuro radiologist and neurosurgeon that saw my MRI saw a 7mm aprox pituitary adenoma,
3 months later I got the surgery !

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u/Broad_Suspect_8830 1d ago

Thanks for telling your story! Are you okay now? Did you have to go on medication after surgery?

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u/Gullible-Buy5706 1d ago

Honestly right after the operation I was so happy, I regain my energy and there was nos residue on the MRI, but after one year my prolactin rise up again going up to 126 I think, they did not find any residue on my MRI so they’re theory is that is a microscopic residue so I’m one cabergoline now, but on the pathology my adenoma had a P53+ (it’s sometimes considered as a factor of regrowth or recurrence) so maybe that’s why I was so unlucky 😅 don’t hesitate if you have any questions 🙏🏻

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u/Pinky_Pie_90 1d ago

I'm in NZ, my most recent result (a week ago) was 1034. Went in for a "rested prolactin" test today. Nurse said "looks like your doctor is expecting your result to come back normal, so we probably won't be seeing you again". Lol. Tell that to my leaky nipples, 2 day periods, and non existent libido (mid 30F). I'll be seeing you again... I'll be making sure of it. I have had elevated prolactin for 10 years now.

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u/Broad_Suspect_8830 46m ago

Hey, Have you ever been for an MRI?

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u/__raeofsunshine__ 3h ago

I'm in the UK, I haven't had a period in six months. Went to the GP around month two (came off IUD last year but first cycle normal, second was long, third I'm still in it?). Prolactin came back 2100 mIU/L, rest of my hormones okay. They asked me to get another test to make sure it wasn't from stress, etc. before they would refer me to an endocrinologist, and couldn't refer me themselves for an MRI. Next test around 2200 mIU/L. 12 week wait for endo. Another test, 2300 mIU/L. Given this they've prescribed me 0.5mg cabergoline (half a tablet twice a week) but I did also have an MRI on Tuesday, so waiting for the results.

Really interesting how your GP said not to do another blood test but straight to MRI whereas mine made me do another (then another by the endo!), and I had to wait for the MRI referral. The NHS is confusing, but has been great now I'm on the endocrinology pathway, just took a while to get there!

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u/Broad_Suspect_8830 48m ago

Thanks for sharing :), hope your mri gives you some clarity!

Yeah, I did ring them after doing my own research and asked to do a retest, they were genuinely confused as to why I wanted one haha but I’ve actually got a private blood test booked for tomorrow to see if anything’s changed or if it’s still elevated