Prolactin level 689

[JellycatParent]

Hi everyone. Hoping for some advice.

I’ve been having health issues for what seems like ages. Chronic fatigue to the point I have to have 2 hour naps daily, awful IBS type symptoms and weird bladder issues like having to strain to empty my bladder, heavier periods with really large clots, bruising all over my legs for no reason. I never feel ‘well’. Have had my bloods checked, I was slightly vitamin D deficient but that’s been sorted a while and hasn't made any difference.

I suspect endometriosis. I know it is very understudied and can cause an array of symptoms, including fatigue, bowel and bladder issues, blood clots etc. My mum had endometriosis and so did my Nan. I also had some cysts removed as a teen.

I recently had a hormone blood panel done and my prolactin was 689, nearly creeping into the >700 ‘very high’ reference range. My GP wants to retest but said it’s possible I have a tumour on the pituitary gland, but that endometriosis and even PCOS can cause elevated prolactin and the symptoms I’ve been having.

Does anyone have any experience of this and if so, what was the process? Thank you!

I have a prolactinoma (the tumor) and my levels were over 2200 when first discovered. I have found many GPs and even specialists don't realise how awful high prolactin can make you feel including exhaustion, weight gain, headaches...I weirdly get such weak arm muscles when levels are high that hanging washing up feels like lifting lead.
Recently my levels crept back up to 700 after years of being controlled by medication and I was feeling awful again and have upped my meds dose and feel great again. Ask for a referral to endocrinology and they will be able to sort. I take one tablet once per week and it works very quickly.

Yes this is exactly it. I also find it takes me literally days (4-5 days at least) after any exercise to feel recovered. I have sore and weak muscles all the time, headaches, itchy skin, dry hair and brittle nails too. My GP didn’t seem too worried and sort of dismissed that the higher prolactin can be causing it but being a woman, I’m so used to having to do my own research haha!

Im sorry your levels were so high, you must have felt so rubbish ♥️

Yes I get serious skin changes too, recently had awful cystic acne all over my back. I knew it was my prolactin levels causing it but even my endocrinologist said it wouldn't be that. Lo and behold once my levels returned to normal my skin has cleared up. I also was investigated for endometriosis and it was all clear. It definitely affected my hair and nails too.
I've read stress and PCOS can cause high prolactin but apparently that is typically only slightly high.
If prolactin levels get too high it can cause breast milk production which is how my issue was discovered, as well as periods stopping (I didn't have one for 2 years) but levels of around 700 shouldn't cause those things.

@khamps my issues actually started with acne too. I’ve never had skin problems luckily even as a teen, but the minute I hit 27 my cheeks and jawline were covered with deep acne that has left scarring visible even now, and I’m 30! Also all over my back and chest too. It’s now more under control but it’s taken years to get it settled.

So strange that even your endocrinologist didn’t know acne would be symptom. I’ve read online that many women have experienced this too, so we aren’t alone! I think I’ll push for an endocrinologist appointment and if that comes up negative, I’ll chase the endometriosis route.

I haven’t had any milk production and my periods are still regular, just heavier!