High prolactin : Back again šŸ˜© Hi all again... - Thyroid UK

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High prolactin

Lahodges10 profile image
ā€¢10 Replies

Back again šŸ˜©

Hi all again. Thank you so much for all your informative help over the last month or so.

I decided to pay for some bloods with medi check. I focussed more on hormonal as well as some thyroid as my period has changed significantly and I began getting night sweats alongside everything else šŸ˜©

Thyroid came back within range again so thatā€™s good. But my prolactin came back out of range. Iā€™ve attached pics of results.

Iā€™m still having the same symptoms. Saw an endo doc today privately and he said itā€™s defo not thyroid. And he doesnā€™t think itā€™s pituitary as thatā€™s very rare and my results werenā€™t that high. Iā€™m repeating bloods next week and seeing him again in two weeks. He really made me cross as he went on about how psychological distress can spontaneously occur and that it could be that causing my symptoms. I was quite tearful at the appointment as I really am feeling the stress of being unwell. I can cope with everything but the anxiety is awful. I miss the old me šŸ˜„

So I wondered if anyone had pituitary issues with a ā€œlowā€ high result like me. We shall see what the next bloods say?

Lauren X

Edit- Couldnā€™t work out how to attach another photo but thyroid bloods are: TSH 1.18 (range 0.27-4.2) and free thyroxine 14.7 (range 12-22) x

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Lahodges10
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Boon79 profile image
Boon79

luteinising hormone levels that are too high are often connected to polycystic ovary syndrome, which creates inappropriate testosterone levels.

High levels of prolactin are normal during pregnancy and after childbirth during nursing. However, hyperprolactinemia can also be caused by anorexia nervosa, liver disease, kidney disease, and hypothyroidism.

Have you tested T3 and T4 to check that theyā€™re towards the top of the range? TSH alone wonā€™t provide a good picture. Perhaps your thyroid isnā€™t where it should be hence these outcomes?

SlowDragon profile image
SlowDragonAdministrator

High prolactin is often linked to autoimmune thyroid disease also called Hashimoto's

ncbi.nlm.nih.gov/pmc/articl...

Endometriosis may also be linked to autoimmune thyroid disease

preventmiscarriage.com/endo...

Just test TSH and FT4 is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

You will need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative and won't test FT3 either unless TSH is abnormal

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

BadHare profile image
BadHare

Over 500 mU/l of prolactin is indicative of a prolactinoma pituitary tumour. I read that in an endocrinology textbook when mine was high. I wonder why your endo didnā€™t know this?!? See your GP & request an MRI to confirm your blood test results.

Lots of good info on the Pituitary Foundation website. They have local groups for support. Itā€™s a good organisation like TUK.

I suspect that pituitary problems aren't as rare as endo makes out. It's a self-fulfilling prophecy - x is rare so we won't diagnose it even if all the results point that way - so we don't see a lot of x, so it is rare ... That low in range FT4 with TSH not raised (shame there's no free T3) and symptoms looks like central hypo.

gabkad profile image
gabkad

If this is caused by a pituitary micro-adenoma, get your visual fields checked.

Make sure there's no compression on the optic chiasma.

Also you need to have imaging done of your pituitary gland to check for

tumour.

Lahodges10 profile image
Lahodges10

Wow...thank you al so much for your replies. I honestly donā€™t know what Iā€™d do if I didnā€™t come on here and speak to others with such knowledge.

Iā€™m going to pay for rest of thyroid tests just to be sure and I have blood form to re check all hormones and prolactin which Iā€™m having done next week.

Thank you form the bottom of my heart. I hope I can get to the bottom of all this soon...for my own sanity!

Lauren x

Boon79 profile image
Boon79 in reply to Lahodges10

Good luck šŸ˜‰

Lambyla1 profile image
Lambyla1

I am trying to get a private appointment in Liverpool for similar issues my prolactin levels are 1560 M UL although my GP (which is up from 1196 M UL 3 months ago!) my periods have now stopped but my GP says prolactin is not an issue until it reaches over 2000. I was also told by a specialist endo nurse in UK (I live in Jersey) that 1200 can be caused by stress and that its not that high at 1200 ish. I have been diagnosed as central hypo but not convinced.

My LH is also nearly double top of the range, my testosterone is 2.1 (top of the range is 6.7) and Oestradiol is 1200 (top of the range is 854).

getting hideous stomach pains, constant thrush in tummy and mouth - haven't had a menstrual cycle in 3 months (always been as regular as clockwork) I am 48 though and wondering if the above results could be the menopause.

feel your pain, wish I could carry my boobs around in a separate basket they are like water balloons!

been tested for PCOS and its not. but nobody can give me an answer i actually believe.

Doctor told me it might be menopause although he also told me to do a pregnancy test in the same breath -(after 5 miscarriages and aged 48 - yeah pregnant with a unicorn maybe!) feel like giving up...

Lahodges10 profile image
Lahodges10 in reply to Lambyla1

Oh goodness šŸ’” I think there is a real issue within our health care system of not treating each person as an individual and instead treating them as a number in a range or graph. Itā€™s scary!

I would say do your research with regards to seeing a specialist. I booked out of desperation and left my appointment- which cost Ā£200 - feeling very deflated and feeling as through the doctor simply thought I was mad. Now this could all change when I see him again in two weeks and I hope the next appointment leaves me feeling reassured but we shall see.

I have found so much help on here and I am going to pay for some more thyroid bloods, Iā€™ll also recheck my prolactin. I am having some nhs bloods done too. I would advise you to have the private bloods done, find an excellent endocrinologist in your area and go prepared. I went completely unprepared and an emotional wreck and it didnā€™t help my case at all.

How did you speak to an endo nurse in the UK? I have read online so many different numbers re prolactin so I canā€™t help you with numbers, I would be very interested to know what is classed as over. Why have a range if itā€™s ignored?

I am probably not the best person to help but there is SO much knowledge on here. Have a read thought the comment on this post as Iā€™ve found them so helpful.

And if you ever want to chat please send me a message. Hopefully we can help each other along,

Lauren X

Lambyla1 profile image
Lambyla1 in reply to Lahodges10

Yes, I think its so difficult and with being central Hypo it doesn't help either, you have to be so careful with the ranges too as they are very different. and you can google an online calculator for the different measurements used. below is the contact details for the lady I spoke to in Liverpool, she came back quite quickly too. being in Jersey doesn't help as we are so limited in whats available - I battled for 10 years to see an endo. threatened to buy levo online before I got any treatment and then after 6 months and retesting he told me I was central hypo as I hadn't gone hyper and that I was lucky to have found such a sympathetic endo! he was lucky I didn't punch him in the face.. .Anyway, he is now leaving so I don't even have an endo anymore and have just dropped off the radar...

good luck (you'll need it) and let me know how you get on x

0117 370 1313

pituitary.org.uk

sammy@pituitary.org.uk

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