monomeric prolactin - any ideas what's causing it? Can I conceive with a high monomeric prolactin level?

[emeraldgirl1]

Finally I have full results from the GP who was referring me to a gynae to discuss my high prolactin level (I can't remember the units but my level is 1000 where the normal level is apparently 300ish to 600ish). And she has now informed me that as there was a note on my results about the type of prolactin (monomeric, suggesting it's all from one source ie the pituitary gland, not from multiple sources as according to her it often is when the level is high) she is also referring me to an endocrinologist.

Should I be worried? GP was nice but vague and said this is not her area at all, but she does think this needs checking and sorting out. My questions are - what could it be indicative of (I'm easily freaked out and my brain is running through options!!) and whatever it is, how can this be solved? Will I be able to conceive if I have a high prolactin level?

Anyone with any info or advice would be hugely appreciated, thank you!! It could be a bit of a wait until I see the specialists and I'm neurotic at the best of times...

[emeraldgirl1]

Ah... that's what I was originally having the tests for... well, worth investigating further at least! And would be good to get some answers after being fobbed off for months

[ladyhelen2]

I had a problem with my pituary gland producing high prolactin levels when I was in my mid 20s. I don't know if this will be the same for you but I was referred for a brain scan and it showed a small growth on the gland that seemed to be the cause. I was advised to go on the pill to regulate my hormones and give me back my periods. I didn't bother as I was quite happy back then not to be having periods. Anyway, a year or so later, they just came back and have been regular as clockwork since then. I guess the problem just righted itself. I was told at the time that if the problem persisted I would be prescribed something that would enable me to conceive. Thankfully I didn't have to go down that route and now have 2 DCs. However I have had problems BF both and can't help but wonder if my prolactin problems back in the day have contributed to this.

Hope you get some answers.Are you also being referred for a scan at all?

[emeraldgirl1]

Thank you lady helen - and glad to hear your problem resolved itself and that you ended up with 2 DCs!! These things certainly are a mystery to me so I will leave it to the experts - good advice belgianbun, there is nothing worse than googling like mad and ending up with a million and one things that could be wrong and no answers...

[FertilityFairy]

I have just read a really good book about fertility which I have been impressed with (The Fertility Plan by Blakeway and David) and this might be too much info but this is what it says:

"The most common cause of elevated prolactin is stress. An underactive thyroid can cause this too, as can benign pituitary tumours, though that's much rarer. Several types of drugs can raise prolactin levels including alcohol, opiates and some tranquilisers, antidepressants, blood pressure medication and anti nausea drugs...

"... high prolactin levels lead to decreased oestrogen levels, interfre with regular ovulation , can cause low libido and may lead to metabolic imbalances. A mild case may mean low progesterone and a short luteal phase which is enough to impair fertility, even with an apparently regular menstrual cycle. A more moderate case can cause infrequent, light or irregular periods and associated fertility problems"

The book then goes on to describe a case study of a woman whose prolactin levels were due to a pituitary tomour - she was prescribed bromocriptine which shrank the tumour and it needed no additional treatment. She went on to have 2 children subsequently.

Hope that helps. Maybe it's all a bit scary in which case I'm sorry. But as you say - better than surfing the net.

Take care

[emeraldgirl1]

Thank you so much fertility fairy!! you're a star. That really helps and I think the main thing is I am now at least being taken seriously as having something amiss with my hormones after a year or so of being told by people, doctors too, "oh, you don't LOOK as though you have PCOS, you aren't visibly overweight or growing a moustache!!!"
That really helps and thanks so much for the book recommendation!

[FertilityFairy]

You're welcome - I would really recommend the book. Have found out all sorts of things I didn't already know from it. It has a load of good stuff on PCOS that you would probably find useful and one of the authors has some top tips on how to get doctors (and he is one himself!) to pay attention to what you are saying.

[ladyhelen2]

fertilityfairy thats a really interesting link. I hope it helps you emeraldgirl. SOunds like whatever the cause of your raised levels, there is likely a solution for you. FWIW a friend of mine had similar, also found to be a small growth on her Pituarty gland. She sadly had a few mc (just like me in fact) but had a gorgeous baby boy in May. I'm not sure what treatment she had TBH, but whatever she did or didn't do, she was able to conceive. Hope this gives you hope.

[2ndDestiny]

Hi emeraldgirl

Just dropping in to say hello and i hope you are ok. Glad you are finally getting some answers - sorry that it all seems a bit scary, thank goodness for fertilityfairy's post - it sounds like this is something which CAN be treated, whatever is causing it. I hope the time passes quickly until your appt. with the specialist.

And grrr at the silly doctors who said you didn't 'look' like you had PCOS - that's completely irrelevant! I have PCOS and am thin with no facial hair! Anyway well done for being persistent and getting something done about this.

[emeraldgirl1]

Only just saw this 2nd destiny!! Thanks so much for your reply and yes, it is infuriating how some doctors seem unable to grasp the concept that PCOS has many different manifestations... isn't the whole POINT that it's a syndrome and so therefore doesn't have just one way of presenting?!

Am off to the gynae tomorrow (and GP has told me she wants to refer me to endocrinologist as well if the gynae doesn't do this himself) I'm a little nervous (stupid I know) as it's a male gynae and I've never actually been to any kind of gynae before But I have all my questions written down as someone else on here has very sensibly advised, so hopefully at least I'll get somewhere...

Thanks all for the advice and help!

[AttilaTheMeerkat]

emeraldgirl

If at all possible get your man to come to this appt with you as meeting the gynae initially can be very nerve wracking. Apart from giving you moral support he can also ask questions.

PCOS is a very individualistic disorder and affects each woman with it very differently. What may be a problem for one is not for another; the only commonality is the cystic follicles on the ovaries.

You do not want to come out of there thinking, "oh I should have asked him about x,y,z". Good on you too for having a pre-prepared list of what you want to ask.

Best of luck for tomorrow, do post an update when you have time.

[emeraldgirl1]

Attila - thank you as ever, you're great at this!! Unfortunately DH simply can't make it to the appointment tomorrow, meetings that are impossible to miss, but I feel perfectly OK going without him as long as I have my trusty list to hand. Reassured too that I will almost certainly be seeing an endocrinologist at some point after this so anything that may slip my mind can be brought up again then. I think the fact that some blood tests have been done and that show this raised prolactin level does at last mean that people are not just dismissing my missed periods as 'stress' as they have been so keen to do in the past. I do feel answers will be forthcoming, albeit later rather than sooner...

Of course, now I am kicking myself for not getting the ball rolling on this 3 or 4 years ago But I do feel that time is still on my side if I can get some clarity on this over the next couple of months...

[AttilaTheMeerkat]

Hi emeraldgirl,

Do not forget your trusty list tomorrow!!.

Best of luck for tomorrow, would like an update on how it went when you have time to type.

Hope it goes well.

(((((((((good vibes coming your way!!!))))

[emeraldgirl1]

Went for my appointment y'day and it went reasonably well... I did feel the gynae listened to me (and my list!) but I'm still not convinced by the total dismissal of the idea that I don't have PCOS simply because I don't have spots or a beard I mean, a good friend of mine is a stunningly-complexioned size 8 and she has PCOS... anyway, he has referred me for a further round of blood tests and an MRI scan of my pituitary gland, so we're getting somewhere!

Can I just ask, for anyone who has had the FSH/LH blood tests, exactly when should I go for the tests? I think I need to re-check this with the specialist as there was so much info!! He said on day 3 of my cycle but on the referral slip he gave me he has written 'Day 2-4'... and now I can't remember what he said when I asked if Day 3 meant the third day after my period started. He may have said it was day 2 after my period!! Anyone know? And would me being 1 day out make any difference?

Thanks everyone and especially Atilla for good vibes!

[AttilaTheMeerkat]

Hi emeraldgirl,

You're welcome re the good vibes and am glad to see that further investigations will happen.

No spots or beard for me either but I still have PCOS. It is a very individualistic disorder and affects each woman with it very differently.

I used to get my LH/FSH tests done on day 3; being a day or so out won't make any real difference to the overall result. It means day 3 of your cycle during the month. As my periods were so irregular anyway I used to get my tests done according to calendar days (this was also hospital advice).

[Missvirgo]

Hi have a wonderfull to us,

Actually I'm in the clinic now to check what's happening to me.. for the fast 3 months I don't have period or menstruation every month( for 3 months and now almost 4 months... I've already done for ultrasound and also blood test ... and I see the result now ...it may indicate here PROLACTIN is 29.02 and my TSH is 2.92... what it means .. by the way I'm afraid what is happening to me....

Please can you give me more suggestion or possible results ... do you think I can have baby in the future ....

Thank you very much,
Much appreciated your answer

[Missvirgo]

Hi
I want to add for my question about having baby in the future vozbim already 37 years old ..

Thank you