Prolactin & irregular periods

[callypally]

Hi everyone!
I'm quite new on here!
I suffer with irregular periods (always have done really but never thought much of them before), my husband and I have been trying to conceive for just over 6 months now but unfortunately no luck so far.
I had a doctors appointment regarding my irregular periods (my last period was 2 and a half months ago now), and my results came back with borderline levels of prolactin.
I'm having another blood test done in early jan to see if the levels are stress related or my "normal".
Has anyone been in this position too? Any words of advice would be highly appreciated 😊
It's my first time trying to conceive, so it's all quite confusing and worrying that this is happening. It's also really disappointing keep taking pregnancy tests and for them to be negative, especially as I have no idea when my period will be!!
I'm 30 next month, so trying to keep my calm about it!
Anyone who is or was in the same boat, then it would be great to chat!

Hey @agteacht! Thanks for sharing that, it's good to hear other people's stories who are in the same position!

Glad you're still having periods, do you know if you're ovulating each time? I've not tried out ovulation sticks, I was planning on doing it when my periods were more regular as I'm doubtful that I'm ovulating without periods at the moment.

Were you quick to be put onto medication to bring down your prolactin levels last time? Was it an endocrinologist you saw previously?

My appointment with the endocrinologist is on thurs 7th March, so not too long to go now! Just wondering what to expect from the first appointment!

My infertility gynaecologist appointment is on the 5th of March, so it's all go that week haha, nervous about it but hoping it'll be straight forward!

I like the sound of that plan!! I'm going to join you on that one

Hi @callypally hopefully the plan works for us both 😄

Unfortunately I don't quite remember how quickly the prolactin reduced last time. But I feel like it was two months max before my periods came back. Which is good.

I think I'm ovulating as I almost always get a surge on OPKs. But the doctor told me that with PCOS as well you can sometimes get a surge but not actually ovulate. But I do think I am.

I will let you know how my appointment goes next week, have you bloods to share? I'm hoping she reviews the bloods and starts meds. But I have history, I've had MRIs done before etc. If you don't he/she may want scab results too. But I would push for meds to get started ASAP...

It's complicated eh!!!

Hi @agteacht yesss fingers crossed the plan works for us!!

Aw that's good to hear it didn't take too long for them to go back to normal then, hopefully mine won't take too long! Feel like I've forgotten what it's like to have a period, it's been that long!!

Aw I see, hopefully you are ovulating as normal then! I'm going to give them a go once my periods are in some sort of cycle

Was it this week you have had your appointment? Or next week?
Mine are in the first week of March, it feels like it's dragging! I have one with an infertility gynaecologist and then another with an endocrinologist, so it'll be good to see what happens from that!

I've had two lots of blood tests done so far, both a month apart, but both times my prolactin was higher than normal. To be honest she said the level was 580 and 550, so consistent.. and not massively above the "normal", but odd as in haven't had a period for 4 months really!

Shame it is such a waiting game, I am too impatient! Let me know how you get on wishing you all the best!

My appt is Tuesday I'll let you know!

That's odd because my level is around 1200 and I have periods. I think when mine stopped it was over 2000. Have you been tested for PCOS?

@agteacht good luck for Tuesday! Let me know how it goes

I've not been tested for PCOS yet, but I'd imagine they'd test for that during the infertility gynaecology appointment.. not entirely sure to be honest! Have you been tested for that?

It's frustrating as I really should have got it looked at when I was younger, it's only now that I'm trying to conceive that I'm bothered if I miss periods and them being irregular! I was on the pill for 9 years before trying to conceive too, so didn't really think about it then either!

I'm glad I've got the ball rolling now though, fingers crossed it all works out in the end!

Hi @callypally what age did you say you are? I'm 36 so I know the feeling...

today was my appointment with the consultant (endocrinologist) and it went really well. She put me on a drug called Cabergoline for my high prolactin, I have to take it for four weeks, do a blood test and see her the week after. She reckons it will drop my prolactin from 1200 to 100 within that time (the normal range is up to 400/500). So I think that sounds really positive and quick!

She says when that is fixed I'll either conceive or have a clear unexplained fertility issue because everything else is fixed. So I feel quite positive that I just need to get that hormone down to normal.

She also put me back on metformin for PCOS. The only problem now is that the Cabergoline makes you dizzy and nauseous and the metformin makes me need the loo (sorry tmi) so coping with them both will be hard!!!). But worth it hopefully...

My OPK is low again today so I'm counting today as ovulation day and TWW starts tomorrow. This part normally takes 10-11 days for me so AF due around 2 March. I'm not too hopeful for this cycle as the consultant said it's unlikely I can get pregnant with these hormone levels but you just never know so I'll keep my fingers crossed anyway and at least next cycle I'll have a better shot!

Hi @agteacht
Aw that's great to hear that it went well, it sounds really positive that it'll drop it nice and quickly, fingers crossed for you! You'll have to keep me up to date on how you get on

How are you feeling with the side effects so far? That definitely sounds like a confusing mix of side effects, hopefully you aren't feeling ill from it!

I'm not actually sure how those opk work! Not tried them out myself yet! How is it going with it now? Showing any signs yet?

I'm 30 years old now, so I know I shouldn't worry, but the worries always creep in!

Glad everything went really well and you're on the right track, my appointment is in a week and a half, feeling a bit nervous but hopefully I can join you on bringing the prolactin down soon!

I thought I'd reply with my experience. When I was referred to consultant originally, I had a starter pack of my meds to ease into the dosage. I found the meds can make you nauseous, so I used to take them at night, sometimes id have bad days with a bad nights sleep but generally it was okay. My prolactin levels reduced fairly quickly, and at my last mri scan I was asked if I'd had the surgery to remove the tumour as it was no longer present. I continued taking meds while trying to conceive as they make you ovulate, and now I'm 28 weeks. And once I have the baby they are going to check the levels after 6 months (not planning on breastfeeding due to controlling the prolactin) If you have any other thoughts or want to ask questions following your appointment feel free to ask x

Hi @gebs that's so kind thank you! Congrats on your pregnancy. Can I ask how long it took from starting meds to conceiving? Were you taking Cabergoline?

Hi @callypally thank you! Took my second dose tonight and so far so good. In terms of the metformin that's every day 2 tabs, so far I've only been brave enough to have 1 tab but I'll ease into the 2nd one next week.

You should definitely use OPKs. I get mine on amazon really cheaply. I am pretty sure I ovulated on Tuesday so am now 3dpo. Not hopeful for this cycle given the prolactin issue but you never know... maybe next cycle when it has come down!

I've been taking the meds alongside the pill since I was 21 ish, but stopped taking the pill beginning of June last year so conceived within 2/3 months? I took bromocriptine to make me ovulate/bring the prolactin down. I always used to think about it a lot/worry about it through my 20s, being told you were infertile so young, I wanted children, but neither me or my husband were quite ready and I worried the later I left it would I struggle? But luckily the prolactin issues are gone for me. I tried ovulation sticks on the month i did conceive just to check and did get a positive result so relaxed into more as i knew I was ovulating which I wasn't years ago. Once baby's here I can post my experiences post birth, going back on bc, if I have to go back on prolactin if you want too x

That's really positive @gebs
Makes me hopeful for my next few cycles. Would be great to hear how you get on. Will you breastfeed do you think?

No not planning too, one of my symptoms of high prolactin in my 20s was lactating, I found it quite stressful at the time so didn't want to do it when having babies. I got the feeling it wouldn't be an easy ride from the consultant either so just said I wouldn't planning to at my first appointment

That's interesting
I also got the impression that the consultant felt it would make the prolactinoma worse but wasn't sure if I had misunderstood. Will delve into it further if I have a BFP!!

Hi @agteacht glad to hear it's going well so far and the side effects are okay! Hope it continues for you!

Thanks for the advice, will definitely look to use them when my periods finally come into a normal cycle! Don't think there will be much point now hmmm, I'm assuming I wouldn't be ovulating if I'm not having periods etc!

That's good to hear you've ovulated this month too, you never know it could happen this time around but least you've got an even better chance next cycle round too as your levels will be lower!

Hi @gebs thanks so much for posting your message! It's always good to hear positive stories of people who are in the same position! Congratulations on your pregnancy!!

Can I ask whether you had irregular periods before you were on the prolactin medication? Mine are pretty irregular/currently non existent!

I was taking the pill, so I controlled them, I'm not sure how they would of been off the pill but I was told my prolactin was too high to be fertile so I wouldn't of been ovulating...

Hi girls!
Thought I'd give you an update, I've had my infertility gynaecologist appointment and endocrinologist appointment this week, both went pretty well!
The endocrinologist said that as my prolactin levels are only slightly raised, he doesn't think that is the primary cause of my periods stopping and having trouble getting pregnant. He thinks that I'm likely to have PCOS instead. I know some of you girls mentioned it before too! So they're referring me for an ultrasound to check in a few weeks time.
The gynaecologist has put me on tablets called Provera to get my periods re started again... she's given me 3 months worth and hopefully that'll set my body into a "normal" pattern! She's asked me to go for a hycosy assessment in a few months too... has anyone had that one?! It doesn't sound overly pleasant!!
But it'll get me on the right path to see what's going on!
I need to have more blood tests done too when my periods are back again too, which fingers crossed will be next week if the tablets do what they should!
How is everything going with you girls? Hope everything is going well!

Hi @callypally thanks for the update!! Really glad it went well. It's good to eliminate a few things too isn't it?

I'm afraid I haven't heard of Provera or a hycosy but will be interested to hear what others say...

Well I am 5 tablets into my 8 tablet prolactin course before my next blood test on 20th, returning to consultant the week after. I'm also taking metformin twice a day which so far is okay. I had secretly hoped that by some miracle I would get a BFP this cycle (you hear stories of people who do as soon as they start a medication don't you!!!)... but unfortunately not. I had my usual 36 day cycle and am on CD4 now.

But going to be using OPKs like crazy once AF finished as hoping done of these meds will be shortening my cycle...

But who knows...

It's good to be investigating but dissent stop you just wanting it all to be solved!!

My brother and SIL just announced their pregnancy last week literally 4 months after they got married which is fab for them but we have been married almost 5 years albeit started trying about 15 months ago... so it's hard not to wonder... they don't know about that but it wasn't easy to congratulate them but of course I did!

*doesnt :)

Hi @agteacht
Yes definitely feels like I'm getting somewhere having some bits ruled out, although still feels like I'm very much at the beginning of a long journey!

She gave me the Provera to try and kick start my periods again, they are some kind of synthetic progesterone, so I just need to take 7 days worth then stop.. then I should get the normal period bleed! I just need to do that once a month.. hopefully that'll sync them into a pattern!!
She said she needs me to be having periods to be able to have the blood tests and hycosy done!

Hysterosalpingo contrast sonography is the proper name for the hycosy, it's the one with the dye and the camera to have a look at what's going on in there!

Although I won't be having that for a couple of months until my periods are sort of back and my husband has his sperm test done too (he's now booked for beginning of April!)

Sorry to hear that it hasn't worked out how you wanted just yet, but hang on in there! Your doc said it can be unlikely the first month, so keep the hope for the second month! I know it is really disappointing though!

Have you had any troubles with side effects on the meds? Hope it won't feel like too long until your blood tests and results are back, is there any more bits they can do for you in the meantime? Or is it more of a waiting game?!

Congratulations to your brother, it's really difficult isn't it, it's hard to be really happy for them when you're struggling so much yourself! I don't think other people understand who haven't been in the same situation, everyone I know either gets pregnant by accident or first time trying! So frustrating! We will get there eventually though!!

Yes we will get there @callypally :)

The provera sounds great. Will it take long? I bet you will be so happy when AF arrives 😂

Ah I didn't know that was called hycosy. I've heard good stories about that. I looked it up and enquires about the costs, I might do an internal scan and hycosy because then I will have ruled that out too which is pretty much everything investigated. I think it would be worth the money privately rather than taking the current staged approach of ruling things out sequentially if that makes sense...

We are waiting for my husbands SA results, he gets them on Wednesday. I am really really hoping that there's nothing wrong with him and it's just my hormones! If both of us that would be depressing!! I'll let you know...

Hi @agteacht
Yesss I'll definitely be glad when my period finally makes a reappearance!! Although must admit I'm feeling a bit nervous that it's going to be a heavy one as I've not had one for so long... hoping it won't be terrible!! I've stocked up on chocolate and painkillers just in case!

I should be expecting the period some time this week.. not overly sure when! But I finished the last tablet of my 7 day Provera tablets yesterday, so should be in the next few days I think!

I'll then need to start the 7 day tablets again in 3 weeks or so to bring on the next period. I've got to do a pregnancy test first though to check, but I feel like I doubt I'd get pregnant that quick if I've not been ovulating for ages! Going to take the opks after my period though!

Aw that's a good idea, how did the search for the hycosy go for going privately? Is it expensive? Would you have to wait long to have it done? That's good there is some positive stories about it, sounds like a very thorough check!

Good luck with getting your husbands results! Hopefully everything is okay there

My husband needs to have that test done too, he's booked in for early April. Feels like ageesss away, there are such long waiting lists! Then it'll be another 2 weeks to get the results too, Just need to be patient!

Hope everything is good with you!

Hi I’m in a similar position haven’t had AF since January and doctor just keeps saying it’s normal. I’m on day 61 of cycle bloated and feeling emotional I wish AF would come or either all these test I have done would just be positive. It’s very hard isn’t it x

Aww sorry to hear you are having troubles with irregular periods too @Pinksunset1 it's so frustrating isn't it!! Have you been TTC long?

Have yours always been irregular? Or more so now than usual?

When I originally went to the doctor about it she asked if I was stressed etc, as this can cause them to go a bit awol! I'd suffered with irregular periods for years before I went on the pill, so I think that helped with getting them to do something about it!

Have you seen a female gp about it? Might be worth a try if not, I went to see a female one and found that she was really understanding, she arranged all the blood tests and then referred me to a specialist. Male gps can of course be the same, just talking of my experience with it!