Raised prolactin

[anxiousmum1998]

Hi
I really need some reassurance.So I have raised prolactin levels .Sometimes this can be caused by pregnancy yet I'm definitely not pregnant (despite trying for our second baby).Certain tablets can cause this but I'm not on the usual medications that cause this .My GP has absolutely terrified me saying this could be a sign of a non cancerous pituitary gland tumour and referred me to neurology .

The fact that it would be non cancerous is reassuring however I stupidly went on google and ready that even if not cancerous the can be pressing on other parts of the brain which in itself could be life threatening meaning I could potentially have to be taken out via a craniotomy.The idea of brain surgery and the recovery from brain surgery terrifies me as does dying during a craniotomy .I have a son that I want to se grow up .Plus we were trying for a second baby which we have agreed to stop until we know if it's a Tumor or not but the idea of never being able to have another child is absolutely heartbreaking for me .If it is a tumor even if they don't have to remove it I couldn't risk having a baby as getting pregnant with a non cancerous tumor increases maternal mortality rate ,premature birth rate and growth restrictions with the baby .so choosing to risk my own life to have a baby would be so selfish as that could mean leaving my son without a mum or having a child that's severely disabled who has a lowered standard/quality of life which wouldn't be fair on a baby .I really need some reassurance and hope right now .

You’re jumping ahead of yourself here OP. See what neurology says.

pituitary gland tumours don’t always need removing, sometimes they can be tested with medication and removal is through the nose I believe.

Yes don’t get ahead of yourself. Many are tiny and be treated with medication quite successfully. Have a look at the Pituitary Society for more info.
not sure where the info around maternal outcomes with a non cancerous tumour have come from but many women with managed/treated prolactinomas are able to conceive and have healthy pregnancies and infants. It’s really scary to be told you could have a tumour, but honestly, try not to get ahead of yourself. 💐

The Pituitary Society have a helpline OP - might be worth a call as I’m sure they will be able to provide some more information while you are waiting to see neurology.
https://www.pituitary.org.uk/helplines/

I’m awaiting surgery for a pituitary tumour
craniotomy is used in less than 1% of surgeries according to my neurosurgeon
Please try not too worry until you have all the test results

@anxiousmum1998 what is your prolactin level?

I have a prolactinoma/pituary tumour. I've been on Cabergoline over 10 years, have had 2 pregnancies and am trying again. It will not affect your pregnancy. Unless you are losing your eyesight they don't operate, the tumour reacts really well to meds like Cabergoline.

If anything, in 50% of cases the pregnancy hormones cause the tumour to disappear altogether.

Thanks to everyone that responded.I wasn’t told the exact prolactin level just that it’s “significantly higher than it should be “and that this indicates a “prolactinoma “and that I require an MRI .I was literally given no more information than that other than that I very likely have a tumor .

I have had a prolactionoma for 22 years. My prolactin levels were 4000 plus when diagnosed- they should be between 80-300ish. My MRI was normal - an mri just shows the pituitary appears normal, not that it behaves normally. Many prolactinomas are so small they don’t actually show on an MRI. Don’t get ahead of yourself here; most prolactin issues are easily resolved with either just leaving things be or taking medication. I took cabergoline to reduce my prolactin levels - the main reason it even got discovered was because I had no periods at all and I wanted to conceive (I now have 2 children). My pituitary issues have caused me other things over the years - I have a lot of autoimmune issues including Addisons and lupus, but the prolactinoma really wasn’t as much of a huge issue as I originally thought it would be. Try not to panic.

I had this. The MRI showed nothing so they stuck me on cabergoline. Total non event. You need to calm down until they've done the MRI.

Also - although they’re called a tumour, it’s not the same thing as a cancerous brain tumour. It’s like a harmless nodule. Not the same thing at all, and fairly easily removed with surgery or treated with medication if necessary.

I don't know if this post is still active but just to add my experience. I have been having prolactin issues for about 4 years, my levels will go up and then down again by themselves. Endocrinologist seems to think that I have tissue in my body that acts in a way to stimulate it. I'm due an MRI soon just to rule out a growth although I went on Cabergoline for a month and it brought it down quickly but it blew up my sinuses so I've don't my own research and found out that vit B6 has similar results to Cabergoline so I've been taking that. I have endometriosis and high prolactin is quite common with it but doctors haven't connected the 2 yet 🙃