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Conception

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Original poster

Prolactin raised

35 replies

TTC12 · 13/10/2022 16:41

Hi- just wondering if anyone has experience with high prolactin? I went for day 21 tests and all was normal apart from prolactin ( 999). I had my bloods repeated on day 3 and it had fallen to 520. This is obviously still higher than the normal range- but it had fallen quite significantly. I am now waiting on a third prolactin test result. So if anyone has any experience of this- have they been referred to an endocrinologist? Or if you know of any reasons why it may vary so much? Thanks

OP posts:
Angrymum22 · 13/10/2022 16:47

High prolactin can be due to a few problems but unless you are pregnant it is most commonly due to a problem in your pituitary gland.
Along with further blood tests you will need an MRI.
High prolactin can suppress ovulation, cause lactation and other symptoms.
If you are struggling to conceive it is likely that the high prolactin is the cause.
I have a prolactinoma, diagnosed when I was 22. It is still active now I’m post menopausal. I take medication to treat it and keep the prolactin at a normal level. Because it is still active I see an endocrinologist annually.

NSx · 13/10/2022 16:59

Can I ask what is the normal level is? @TTC12 @Angrymum22

Original poster
TTC12 · 13/10/2022 17:14

@Angrymum22 thanks for your reply. Do you know what your levels are now? Is there any side effects to the medication ?

@NSx i believe normal is anything up to 500

OP posts:
Angrymum22 · 13/10/2022 17:38

My normal level were usually below 400, at 600 I would experience symptoms. I used to take meds when levels went above 600. I think when I was diagnosed the levels were well over 1000. You have to be careful with levels since they fluctuate through the day like most hormones. I seem to remember that it was better to have bloods done before eating or drinking so they are not affected by glucose levels.
Early on I know that my levels fluctuated wildly because my initial symptoms included irregular periods. Eventually my periods stopped altogether. The onset was gradual over 2-3 years.

dall9 · 13/10/2022 17:52

Hi, my prolactin levels are also very high had further tests and doctors said it was because of a tablet I was on.. no longer on that tablet & have blood tests next week again..
we've been trying for 2 years and still nothing so I'm wondering if it's because my levels are too high.

Angrymum22 · 13/10/2022 21:37

What tablets were you taking?
Prolactin problems are quite common but complex, many GPs don’t have the knowledge to spot them or treat them it’s defo a specialist endocrinologist problem.
Because the symptoms are similar to menopause many women who develop problems during 40s assume it is early menopause. For many the problem disappears after menopause so it is never diagnosed.
One major symptom is lethargy ( severe fatigue). Because mine started in my 20s, eventually an observant young GP decided to check my prolactin levels and then referred me to specialist endo. I was lucky to be seen in a regional hospital. I was part of the original drugs trial for an effective treatment. Prior to this the meds used took months to work and were only effective in some students.
We have a family history of pituitary tumours, both my DM and DSis had tumours which caused excess growth hormone. It’s possible that my tumour may have progressed to the same type of tumour if it hadn’t been treated early.
Your GP will be unable to diagnose a pituitary problem just from blood tests. So please push for a referral to endocrinologist. If you can afford it perhaps go privately. You may have to pay for an MRI but it is worth it to get a definitive diagnosis.

Angrymum22 · 13/10/2022 21:38

Students- patients

dall9 · 14/10/2022 23:12

I was taking mirtazapine..
I've got blood tests again next week to see if my levels have gone now anymore.. if they haven't then I'm gonna ask for a further testing.. could this be anything to do with why we haven't conceived yet in your opinion? Thanks!

Angrymum22 · 14/10/2022 23:40

If you have prolonged raised prolactin it will suppress ovulation.

Original poster
TTC12 · 17/10/2022 15:32

Just an update- my levels have returned to normal on the third test. Unsure why it’s varied so much across the month- but seemingly it’s possible for it to rise and fall over the course of the month.

OP posts:
dall9 · 20/10/2022 10:24

I've had blood tests this morning for prolactin.. how long did you results take to come back?

Original poster
TTC12 · 20/10/2022 13:30

@dall9 I got mines taken on Tuesday two of the times. I was able to get the results on Friday the first time, and the following Monday the second time…. I guess it just depends how busy the practice is/ how often your GP works.

OP posts:
Jade1988c · 30/10/2022 05:44

Has anyone had any luck getting pregnant? I'm currently having the same problem :( x

dall9 · 31/10/2022 11:36

I cant conceive. Had bloods done again and my levels were over 2000.. been referred for a mri scan now to get to bottom of it.
It's not ideal is it

TheSnootiestFox · 31/10/2022 22:32

I don't often pop up on these boards as I'm old and single 😂but I just wanted to say to anyone struggling that working out you have raised prolactin is the haard bit, so if you've got that far then you're on the home straight! It took years for 'them' to work out what was going on with me but once the amazing IVF dr did, he sent me a prescription for bromocriptine (I think) and after years of being told I wouldn't conceive naturally, number 1 took 3 months and number 2 took 2 months, at ages 35 and 37, no other treatment needed. Honestly, you'll all be just fine! Good luck x

dall9 · 06/11/2022 13:20

@TheSnootiestFox hi, how much did you take and what mg please? X

TheSnootiestFox · 06/11/2022 14:33

dall9 · 06/11/2022 13:20

@TheSnootiestFox hi, how much did you take and what mg please? X

Hi, sorry I can't remember- the results are 12 and 14 now so it was some while ago!

dall9 · 06/11/2022 16:40

Hahaha oh wow ok, sorry just another quick one did you take these tablets untill you conceived? Then stopped taking them then again when trying for another..

Jade1988c · 06/11/2022 16:49

I take 2.5g once a week. The side effects are horrible. X

TheSnootiestFox · 06/11/2022 19:43

dall9 · 06/11/2022 16:40

Hahaha oh wow ok, sorry just another quick one did you take these tablets untill you conceived? Then stopped taking them then again when trying for another..

Yes, exactly that! And annoyingly after number 2 and we were done, I've had a perfect 28 day cycle. And still have despite being 50 next month 🙄 I also don't recall any side effects so don't worry x

dall9 · 06/11/2022 21:22

@Jade1988c have you have levels checked? Does one 2.5mg tablet a week bring these down?
Are you trying to conceive. X

Lulie77777 · 06/11/2022 23:00

Hi. I have very high prolactin. A few things to consider: ask your doctor to test all your other hormones as this can throw them out of whack. See an endocrinologist. Also, ask them to test whether this is monomeric or macroprolactin and this makes a huge difference.

Lulie77777 · 06/11/2022 23:01

My levels were in the 10s of thousands. They vary because prolactin is released in bursts and then slowly fades and is released again. Also other things can raise prolactin such as time of day and stress. You need to have an MRI. Hope you are OK! When this is new it can be a big stress xx

Jade1988c · 07/11/2022 05:19

I'm retesting next week I'm hoping it's worked. Yes trying to pregnant for 18 months now. I already have a 4 year old daughter we had no problem creating her. Xx

dall9 · 03/12/2022 08:27

How did you get on? @Jade1988c