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High prolactin and first referral

(8 Posts)
callypally Sun 10-Feb-19 12:40:01

Hi girls,
I've recently been referred to an endocrinologist and to an infertility gynecologist appointments and I'm looking for a bit of advice on what to expect!  
I've had issues with higher than normal levels of prolactin in the last few blood tests I've had done due to my periods being irregular (I've not had one now since October last year!).  To be honest, I've always had irregular periods, but it never phased me before and then I went on the pill for 9 years, it's only when trying for a baby that it makes it worrying/frustrating that they don't seem to come.
My doctor has referred me to an endocrinologist to look into this in the beginning of March, has anyone been in this position?  Can you let me know roughly what to expect in the appointment?
My doctor also referred me to an infertility gynecologist also, can anyone let me know what to expect in the first appointment? The appointment is only for me too, so I'm not sure if i should bring my husband with me or if it is best to go in there alone?
I'm 30 years old and TTC my first baby with my husband (he doesn't have any children either).  Any help or advice on what to expect would be highly appreciated :-)
Thank you!

Wesstywoo Sun 10-Feb-19 13:14:17

Hi @callypally I too have high prolactin - this can be caused by a couple of things namely stress or a growth on the pituitary gland called a microprolactinoma. These are NOT in any way shape or form dangerous, the pesky things just cause high prolactin levels and the good news is that can easily and quickly treated with medication. Prolactin is usually produced when breastfeeding and it's nature's contraceptive hence the lack of AF. My endocrinologist started with a regular blood test, then a cannulated blood test to rule out stress being the cause as they take several samples over a couple of hours. Mine was still high so I was then referred for an MRI on my pituitary gland. Was put on meds and levels were within normal range within 3 weeks. So all quite easy except the NHS wait for an MRI as that can take a while.

callypally Fri 15-Feb-19 23:02:38

Hi @Wesstywoo! Thanks for all the info on that, that's really good to know and gives me a good insight of what's to come!
Did you find that once your periods came back to normal you were ovulating? I'm wondering whether to try out the ovulation stick things once my periods do come back to normal (hopefully that is!)
My doctor has taken a couple of blood tests already that were a month apart, so hopefully that can be taken into consideration, but I'd imagine they'd need to do more blood tests.
How has it been being on the medication for high prolactin? I've heard that it can make people a little sick!
Thanks so much for all of your info smile really appreciate it!

Wesstywoo Sat 16-Feb-19 08:08:10

Hi @callypally yes be prepared for plenty of blood tests! My periods never completely stopped, they were just really light and only lasted 1 or 2 days and they went back to normal almost immediately after being put on medication and I started getting positive OPKs. It really is very effective. I read all the horror stories about how the meds make you feel but I honestly haven't had 1 side effect from them. They didn't prescibe them until after I'd had the MRI and in hindsight I wish I had asked to be given them sooner (but I really didn't know anything about high prolcatin and meds at the time!). I've been on them for a year now. The only other advice I would give is that if you are also being seen by the infertility clinic to keep on seeing them too - because while I was waiting for all this to be sorted out I went 18 months without seeing them when I could have been having other tests and investigations to see if there were any other issues. You are a lot younger than me but once you have been TTC for a year ask to be referred to the infertility clinic as well if you haven't already.

Wesstywoo Sat 16-Feb-19 08:17:25

@callypally just re-read your first post and see that you have been referred to the infertility clinic as well!

callypally Sat 16-Feb-19 08:36:43

Hi @Wesstywoo
Yessss I've been referred to an infertility gynaecologist too (is that the same as infertility clinic? I'm never sure with terminology!)
I'd imagine that they will have a look to see if there are any other reasons that's preventing me to conceive, I'm not too sure what to expect to be honest! Not too sure what to expect from the first, whether it's more of just a chat or if they'll arrange tests etc.

Aw that's good to know that not everyone has bad side effects then!

Thanks for the advice on the ovulation sticks, I'll definitely try them out smile I'm just hoping it won't feel really disappointing etc, I went through a phase of taking a pregnancy test every week after my period was first kind of "late" but it still hasn't come 4 months later! And that was disappointment after disappointment, I'm not doing them anymore.. not until my cycles are sorted out and when I should be due etc!
How long have you been TTC? Hope everything is going okay with your journey!

Wesstywoo Sat 16-Feb-19 09:03:27

@callypally yes infertility gyno is the same thing! They will probably do more blood tests! I also had HyCoSy to check if tubes were blocked but that was much further down the line. I've been TTC for 3 years and am now in the process of having IVF. Not that that should scare you - as I understand it if high prolactin is the only issue the meds should fix it and you'll be able to conceive naturally. Unfortunately I never got to the bottom of why I haven't conceived because I found out that my egg reserve is low (even for my age) so despite only being on the prolactin drugs for a year of the time I've been TTC I had to move to IVF more urgently than I would have otherwise. Hope all goes well at your appointments!

callypally Sun 24-Feb-19 14:39:35

Hi @Wesstywoo
Thanks for that, it's so confusing with different names for things! Glad I'm getting the gynaecologist check at the same time as my prolactin bits then! I've got my appointments in a week and a half, so not too long to go now!

Sorry to hear you've had a long time in your TTC process, that must be really difficult. Hope everything goes well with your IVF, wishing you all the best!

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