High Prolactine and endo: hi everyone... - Endometriosis UK

Endometriosis UK

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High Prolactine and endo

Bespp profile image
9 Replies

hi everyone,

Just reaching out to see if anyone has had their hormone test done and their prolactine levels have come up very high. I went and did a private test with the below results. I checked with my gp and I have been referred to see an endocronologist which I am booked to see next week. Wanted to check with you lovely people if anyone has been in a similar position.thank you and stay well.

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Bespp profile image
Bespp
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9 Replies
Heloo85 profile image
Heloo85

My sister had high prolactin levels, but as far as I’m aware, was down to medication! Are you taking anything?

Never had a hormone test done myself, but I am under an endocrinologist to try figure out why I have such severe disease!

If you’re taking any supplements other than a multivitamin, I would stop them! Xx

Bespp profile image
Bespp in reply to Heloo85

Hi there, thanks for your reply. I got stage 4 endo and I am under no medication just supplementing with vitamins that is all. Thanks for sharing and will update next week what the endocronologist says. These test I did was part of the well women package that randox offers. All worth it in my opinion as you get an overall idea of what is going on in your body. All the best on your journey x

Heloo85 profile image
Heloo85 in reply to Bespp

Might be worth a shot, although I’m already under endocrinology and they’ve just pulled a massive amount of blood! Testing for endocrine and non endocrine disorders! So I’ll see what they throw up! Probably that I’m the healthiest person on planet like normally! 🤣

Hope you get sorted asap! Xx

Heloo85 profile image
Heloo85 in reply to Bespp

Just had a quick scout about! Ok, so dopamine suppresses prolactin!.. So for some reason you don’t produce enough dopamine!.. Prolactin suppresses progesterone, which in turn leaves you estrogen dominant and stage 3/4 endometriosis!

Can have many causes but mainly due to a benign tumour! Which can be shrunk by dopamine therapy!..

So you’ve found your personal pathway to Endometriosis! So hopefully, treating your high prolactin levels cures your endometriosis! 2 birds, 1 stone! Xx

PurpleChase39 profile image
PurpleChase39

I had very high prolactin levels and doctor sent me to an endocrinologist for a possible prolactinoma as I was having and still have terrible headaches and eye pain. Had an Mri done that didn't find anything but my headaches became worse and finally got diagnosed with cluster headaches. Most people have a mri with contrast done but my endocrinologist didn't put that down as she didn't think I had a prolactinoma as my periods hadn't stopped or wasn't irregular and I wasn't lactating. She put my high levels due to medication and it was found I had a large chocolate cyst on my ovaries that caused my levels to peak and how I got diagnosed with endometriosis.

Hope you get sorted quickly 🤞

Bespp profile image
Bespp in reply to PurpleChase39

Thank you very much for your response. I suspect the current endo does contribute to this high levels of prolactine already. I too still have periods and the usual endo symptoms that can overlap with everything else. Part of that is a chocolate cyst as well so no surprises there. Will share what my doctor say...thanks a lot for responding.

Trinity613 profile image
Trinity613

Hi, I have never had my prolactin levels measured but have read a few studies showing a link between endo and high prolactin levels. I came across them as I was searching a cause to my sudden onset of endo at age 38 after having had 6 children. The only thing I could think was different with my other children was the length I breastfed (3 years) and the numerous feeds per day (more than 10 a day for over 2 years). I theorised that maybe the high levels of prolactin triggered by numerous and prolonged period of lactation was the cause of my endo. I will never know. Did you have the blood test to diagnose endo or for fertility issues?

Bespp profile image
Bespp in reply to Trinity613

Thanks for sharing. Yes is part of the fertility journey. I was about to start ivf and did this blood test and this is when I found out. No previous pregnancies or kids so was interesting to see. Will keep you posted. Thanks a million

Trinity613 profile image
Trinity613 in reply to Bespp

I think your dr will look into the cause of your high prolactin levels (thyroid issues etc..) if they can’t find anything they will treat you with some medication to gradually reduce your prolactin levels which will enable you to ovulate naturally. Do you have irregular periods or anovulatory cycles? It might be that you don’t even need IVF but just some help ovulating? Wishing you the best of luck xx

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