Help please High prolactin level

[Coco12ha]

Can someone please help ? I have not had a period since July 2019 😞 I finallygot the courage to go speak to someone about it November ish time I had my phone appointment and said I will need a blood test in 2 weeks I went then got a call saying sorry we need more blood had to wait 3 week ish for them to do it again then this time took about a week for results when I got my results the doctor seemed not certain on the phone basically said "your prolactin levels are really quite high, would you be able to come in for a appointment today) I was like omg it serious?! She didn't say anything really about how high or number or if I was gonna be ok I have no other information then I was like ok we will go see what she wants me to go in for after work she rang again just as I arrived at work saying that she's going cancel my appointment with her and she's gonna get my a m.r.i ASAP and that was it got my letter today anyone got any information about there experience or know anything about prolactin please 😭💔my mri is in February

Hi @Coco12ha,

Firstly - well done on getting yourself checked out and talking to a doctor. It's a stressful time to be seeking help for something that probably crept up on you slowly.

The best person to ask these questions to is the doctor ordering the tests if you can talk to them again, for reassurance. They obviously think that you are safe to have the MRI in February or they would have told you to go to hospital etc.

They are probably checking if you have a condition called a prolactinoma - a prolactin-making growth in the pituitary gland in your brain. That is not cancer. It has lots of treatments to fix it up available. Don't race ahead to thinking this is the worst thing possible - it is just something they need to look into to start with.

All my best for your MRI results that it's good news and you get your health back on track soon!

Hi @Coco12ha,
I had a very similar experience five years ago, I came off the pill (not to TTC at the time) and had no period, eventually I went to my GP who ran blood tests, then more blood tests which showed really high prolactin levels. I was then referred to Endocrinology for an MRI. From what I can remember, the blood tests were in the September and the MRI was in the November. The MRI found a swelling on my pituitary gland called a prolactinoma, which was causing the high prolactin. The hospital put me on a medication called cabergoline and within months my levels were back to normal and my period returned in the February. I know it's easier said than done but please try not to worry, I was petrified at the time, especially as my clinic referred to it as a pituitary tumour but it really wasn't anything scary, definitely was not cancerous and was very easily fixed. It might be worth speaking to the gp / hospital for reassurance as I know how scary it can be waiting for the tests and not knowing what's going on.
If you have any questions at all please just ask away! Wishing you all the best and that you can get some answers soon

@Coco12ha oh OP you poor thing, you sound terrified but please please don't worry. As PPs have said they are looking for a growth on your pituitary gland. It is completely harmless, it just causes this annoying prolactin issue. High prolactin can stop ovulation hence the absent periods. It is VERY easily rectified with medication. My levels were within normal range 6 weeks after starting medication. I hope this along with the other posts above gives you some reassurance

@indub yah I came of the pill around that time 2019 and shortly after it stopped all together idk why tho I'm just worried about the Scan For " MRI pituitary with contrast " I seen a YouTube video and apparently they put a big needle into a lady's hip so they can see the dye and also seen you need surgery it's this correct 😩? As it's been nearly 2 years so I'm I right for thinking the tumour will be big ?
I really don't want surgery but I probably will have to I worry and stress a lot it's not helping me. I seen other people going there blood results and got told the number of how high it is ect and in more depth I just got told my prolactin is really high

@BellaBellini I came of the pill in June/July 2019 and lost mine all together only December last year I did something about shortly after my last pill my period stopped all together idk why tho I'm just worried about the Scan For " MRI pituitary with contrast " I seen a YouTube video and apparently they put a big needle into a lady's hip so they can see the dye and also seen you need surgery it's this correct 😩? As it's been nearly 2 years so I'm I right for thinking the tumour will be big ?
I really don't want surgery but I probably will have to I worry and stress a lot it's not helping me. I seen other people going there blood results and got told the number of how high it is ect and in more depth I just got told my prolactin is really high and if u don't mind me asking are u struggling and ttc? Because that's another thing my scared of and thanks so much! Xxx

@TTCIVF thanks it's hard isn't it 😞 I wish they went into more details not just say u have this u have a scan and just that thanks again x

@Coco12ha don't worry, surgery is rarely needed. The medication shrinks it over time. They are usually only a few mm in size. The contrast goes on your arm via cannula and it is painless.

@Coco12ha please try not to worry, as the PP said surgery is very rarely needed. There are two types of prolactinoma you can have (I believe), a micro (a smaller one) and a macro (a bigger one), I had a macro prolactinoma and surgery was never even mentioned. I still have a yearly MRI to make sure everything is fine and my last one was on the 11th December so it's still fresh in my mind - when I go in for an MRI they put a cannula in my arm at the start, then halfway through the MRI they pop some dye in the cannula, I find it completely painless and it's over and done with before I know it! Prolactinoma's tend to not grow very big, I believe mine was about just over a centimetre but the medication shrunk it pretty quickly and could not be seen on an MRI again.
With regards to TTC, I believe that if the prolactinoma is causing you to not have a period then you may not be ovulating which would stop you from conceiving, however after just 3 months of medication I was having periods again and was advised it should not interfere in any way. Typically we are having problems now and going through IVF, however this is nothing to do prolactinoma at all.
Please try not to worry - I know it hasn't been diagnosed yet but if it is a prolactinoma I would recommend having a read of this website www.pituitary.org.uk/information/pituitary-conditions/prolactinoma/ my clinic mentioned the charity to me and they have been very helpful x