Raised prolactin levels?

[Imamumgetmeoutofhere]

I went to see my GP recently about increasingly heavy and irregular periods. I'm in my mid 30s with 2 children but because my mum went through the menopause at a young age (41-42) they did some blood tests to check things out. All my bloods including my thyroid, fh, lsh etc came back normal but my prolactin levels came back raised.

Has anyone had this before? I tried to avoid google but I've petrified myself and am now scared I've got a prolactinoma

If you do have a prolactinoma it doesn’t have to be a big deal. I was found to have levels in their 4000s when I was in my 20s and they did an MRI but couldn’t actually find a tumour as such so assumed it was too little to show up. I had medication every week - cabergoline- and the levels went down. I’m now mid 40s and I’ll always have it, they just adjust the medication as needed. My levels stay around 400 now which is higher than most people but okay.

I have a lot of other autoimmune issues - lupus, Addisons, hypothyroidism etc etc and the prolactin stuff is the least of my worries. It caused my periods to stop so when I wanted to conceive my two children they just upped my medication and my periods returned. I went into early menopause aged 37 but that may because of Addisons not the prolactin issue, and now I take HRT.

It’s quite rare for women to need surgery with prolactin secreting tumours and they’re usually harmless.

@Afterfire thank you so much for taking the time to reply.

I do have another underlying health condition (a genetic one) so I am going to ask my doctor if they two can be linked.

I've never heard of anyone having raised prolactin before so it's all new to me

It’s okay, it’s scary when you are new to it all!

The pituitary society has a very good helpline staffed by a specialist nurse if you need specific help - I found them very useful -

www.pituitary.org.uk/support-for-you/helplines/endocrine-nurse-helpline/

Hi @Imamumgetmeoutofhere ive just had my results back. My first set was 999, then next test, two weeks later was 520. So I am now waiting on a third set of test results. What levels did you have?

@TTC12 just over 1000 which is apparently quite high seeing as I'm not pregnant or breastfeeding. Plus my thyroid was totally normal too so that's not made them higher

@Imamumgetmeoutofhere yeah that’s similar to my first test. I don’t have any other symptoms… so it came as a shock!

@TTC12 mine was checked due to increasingly heavy and irregular periods. Also very headachy too but that's par for the course in my job, using a pc all day and wearing glasses

I have raised prolactin levels, I have pituitary adenoma and take very low dose Cabergaloine and MRI every 2 years. It doesn’t cause me any issues.

I had this and it ultimately led to a diagnosis of PCOS by an endocrinologist. Could that be something that's relevant to you?

They said I had this when they did tests to see why I couldn't conceive. No tumour. They gave me a low dose of cabergoline. It wasn't any bother at all.

I also have this and have a pituitary adenoma. I'm surprised to hear people say it it doesn't cause them any issues. High prolactin really causes me huge issues with brain fog, cognition, memory issues, weight gain and tiredness. I take cabergoline. I am not as bad as when I medicated, but certainly wouldn't dismiss it as a condition with no side effects. At my worst I struggled to hold down my job. If you have a benign tumour the position of it is also significant.

I suppose maybe it does cause me these issues but I already had them with the other autoimmune issues I already had so I didn’t notice any difference! 🙈

Makes total sense @afterfire

@YorkshireTeaCup I wouldn't really know anything about PCOS to be able to tell

@spidersenses I'm always shattered and can't remember a thing but out than down to being a working mum. Maybe there's more too it

Just an update for anyone following or checking these out in future. My levels came back to normal in the last test- so unsure why it had varied so much in the past month- but it’s possible that it does go high and return to a lower level in future tests.

My last level count was 216.0

@spidersenses can I ask what your cab dosage is? I take half a tablet once a week, but I noticed I have gained weight and I’m trying to ascertain if it’s due to the medication/ drugs or just age

@Maze76 I used to take the same dose as you, but it wasn't keeping my prolactin under control. It went back to being raised but still within normal. Now I take 0.5mg twice a week.

Cab seems to affect everyone differently. Some
People seem to lose huge amounts of weight when they go on it or see no difference at all. I was the latter! I don't think I've heard of anyone putting on weight with it, but I might just not be remembering. There are some very knowledgeable Facebook groups if you're on that platform. I found them very useful if learning more about my condition. I found I got very little information via endorsements who would often minimise symptoms or the effect on my life.

I know when my levels were up at 1200 I was mentally very affected. And I was very tired. I struggled to do my job properly. I have a demanding senior job that involves a lot of different projects and has heavy workloads. I struggled badly. I can remember having to write copy and I couldn't strong a sentence together on paper. I couldn't remember all my tasks or words. I had a weird physical tiredness - like weakness in my body. I also used to fall asleep every evening on the couch - that's actually one of my main indicators my levels are rising - when I start falling asleep when I sit down!

Thank you@spidersenses thats really helpful, I think I will get my levels checked again.

@Maze76 Hi ,when you first done your initial MRI to see for the pituitary adenoma was it done with a contrast dye or without ?