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Prolactin & irregular periods

122 replies

callypally · 28/12/2018 11:26

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!

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Pinksunset1 · 16/03/2019 17:21

Hi @callypally I have had irregular periods so my life since 13. I got out on pill but lots of them didn’t agree with me. Had a laparoscopy four years ago to check for endometriosis as had pelvic pain they found none and put coil in. I was ok since getting coil then had a flare up in October had to have it removed been in pain and cripppled every since I’m being sent for my second laparoscopy next month and a dye test to check my tubes I have been attending gynae and doctor since October and got more helpful doctor on Friday who was female my gynae consultant and usually doctor didn’t help but this one has. My gynae consultant was female to but was horrid. I have been TTC since October but it’s hard with my AF being all over place.

How you getting on? How long you been TTC?xx

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agteacht · 20/03/2019 18:14

Hi all

I had my blood tests this afternoon so only a week to wait now to see if my prolactin has come down... and just as I enter the TWW!

Hope you are all doing well

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callypally · 24/03/2019 18:42

Hi @Pinksunset1 aw sorry to hear you've been in lots of pain with it!

Ive not heard of the laparoscopy before, is that like a scan type thing? I'm having the scan with the dye end of next month or in May time to check my tubes etc!

I've finally had my first period in 5 months!! I thought it would be terrible and painful seeing as she put me on be highest dose, but didn't have any pain at all and it was quite a light period, not sure if that's normal or not really! Will see how it goes next month!

I've been TTC since June last year, so I feel your pain and frustration that it's taking a while!

I'm going to try out the opk sticks this month too to see if I'm going to ovulate!

Glad you have had better luck with your next doctor! Have you got any more appointments lined up?

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callypally · 24/03/2019 18:46

Hi @agteacht
How did your blood tests go? Have you had the results back already? Hope the prolactin has come down now!!
I had my blood test done on the second day of my period, so just waiting on the results now, think I'll call Monday to see if they're back yet!
They're doing prolactin again, along with the lh and fsh, so we'll see what they're like! Have you had that tested for too in your blood tests?
All my fingers are crossed for you for your two week wait!! Did you use the ovulation sticks this month? How has it been On the medication? Hope there hasn't been any nasty side effects!

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callypally · 24/03/2019 19:33

Forgot to ask @agteacht how did everything go with your husbands tests? My husband needs to have his in a couple of weeks!
Hope everything went well with it!

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agteacht · 25/03/2019 17:49

Hi @callypally
That's such fantastic news that you have had a period at last!!
You must have been so pleased (can't believe a period can make someone happy eh 😂)

Definitely start using OPKs straight away. If you haven't already buy the cheapies from amazon, you get loads, and try to do it at the same time every day any document it somehow given you need to figure out what's going on. I tend to start mine immediately after my period. I am glad I did as this month I would totally have missed ovulation as it came about 10 days easier than normal.

Yes I have had the day 2 bloods done and they came back fine - FSH and LH - which my doc said was good news as it is more likely then that the prolactin is the only issue.

I am getting the prolactin results tomorrow, bloods were last week. She also did an AMH test which I understand tests your eggs reserve to see how many eggs you have left which she is doing given I am 36. So interested in both results! She did caveat though that high prolactin and PCOS can skew the AMH number - I think make it too high - but anyway let's see how tomorrow goes.

My husbands SA came back normal, we just got the results written down (marked with normal) rather than anyone explaining them so I would like him to check them with the doctor in case any are borderline but all of these things take time and appointments don't they!!

I am 6dpo today and not a pregnancy symptom in sight but I'll be starting to POAS I'm sure by next weekend too just in case!!!

It's a rollercoaster 😂

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agteacht · 26/03/2019 22:39

Me again, good news my prolactin has dropped from 1300 to 104 after five weeks of meds.

Also had AMH test which doc said was totally fine but now I've been googling I'm less sure but will wait till she sends the results to my GP.

However all in all she said she could see no hormonal issues now prolactin is under control and said if I don't get a BFP within 6 cycles I should look into a fertility clinic as she can't see a root cause now. So fingers crossed 🤞

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callypally · 27/03/2019 14:12

Hi @agteacht
So good to hear that your prolactin is now under control!! That's great news 😀 bet you are so relieved now!

That's really good news that all your hormones are under control now, you just need that dash of good luck and you'll get your bfp!!

Aww what is AMH? I don't think I've been tested for that, is it a blood test? Is it called AMH on the blood test form thing, or something else? It's so confusing with abbreviations sometimes haha!

Haha thank you! Me either, didn't think I'd be happy to see my period! Glad it's finally here though!! Will see how things go from now on!

Although I had my day 2 blood test on my period, the results have come back but not with any information really (the gp surgery printed it out for me- I'm imagining the gynaecologist will write to me!) but my LH was double that of the FSH, they are still both within the limits.. but apparently they are supposed to be about the same sort of level? I've seen it online, but will see what the consultant says! My testosterone was also a little above the normal too, along with my prolactin being 550., so again a little above normal! Story of my life haha!!

Glad your husbands results came back good! My husband is having his in early April, fingers crossed!

How much longer do you have in your 2ww?

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agteacht · 28/03/2019 20:19

Hi @callypally - update!

9dpo, maybe even 8 and guess what?

Very very faint and very early days

But something worked after 1.5 years of trying! Will be testing again tomorrow morning...

Will also try to find my FSH and LH results for you

Prolactin & irregular periods
Prolactin & irregular periods
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KnitKitty · 28/03/2019 20:52

Hi Prolactin ladies! Just thought I'd weigh in. (Although possibly I'm just going to confuse everyone as I'm confused myself)

I've been TTC since Dec '17. I've been pregnant 5 times since then; but none have been successful yet. As part of my recurrent miscarriage tests they checked my prolactin levels in December '18. My levels came back at 1835. I was referred to an endocrinologist, I had repeat bloods and an MRI on my pitruitary. MRI was clear, repeat bloods had gone down to 565 in January. I had another blood test in Feb and it had gone up again to 760.

Now; my periods are regular-ish (Cycles vary between 28-35 days); and I get pregnant quite easily, so it's obviously not affecting ovulation for me. However after my follow-up RMC appointment yesterday I am baffled. The gynae I saw yesterday seemed non-plused as to why the first gynae I saw in Dec had ordered tests for prolactin and he said there's no risk with MC.
The endocrinologist I saw was very vague about prolactin and MC; and kept asking me if my cycles were normal. (Maybe she too didn't know why I was there?) But said if my bloods were still borderline she'd prescribe medication. She mumbled something vague about prolactin possibly causing implantation issues... Maybe if the prolactin is high it throws off other hormones?

I mainly came on to say; don't be disheartened, you can still get pregnant with high prolactin; and it is treatable if it's affecting your cycles. I'd encourage any of you who are borderline but have irregular cycles and trouble TTC to be your own advocate and push to be prescribed something just in case it helps. Best of luck to you all!

But I also came here to ask, have any of you heard any mention of risk of MC with high prolactin?? I'm getting really mixed messages from the specialists.

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callypally · 29/03/2019 12:23

Hi @agteacht ooohhh wow that's amazing!! I can see the faint line too!!
How exciting!
Let me know how it goes with the re-tests, it's a good sign it is showing this early on before your AF is due! All my fingers are crossed for you!
Yes please if you can send over what your LH and FSH were that would be fab!

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callypally · 29/03/2019 12:30

Hi @KnitKitty so sorry to hear about your losses, that must be so awful for you to go through. That's good that they are investigating into the causes of them, hopefully on the next time round they can help you!

That is a really high prolactin level though, the "norm" is apparently 500, as mine are just above the normal of 550-650. Honestly I'm not sure if prolactin and miscarriages are linked, I've only heard about it from an irregular period perspective and difficulty getting pregnant in the first place.

Have you ever been tested before for it? It is linked with the pituitary gland, so could possibly be involved?!
Might be worth chatting to some of the girls who have had miscarriages by starting a group chat, maybe ask if and what they have been tested for.

I think he usual process is to bring the prolactin down and usually to do an mri scan, the prolactin reducing meds are safe for getting pregnant, so surely they would have no problem in helping you to reduce it?! Just in case it is an issue!

That's a shame the experts don't seem to know, keep pushing it though! It can be so confusing and frustrating can't it!! Hope you are okay!

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KnitKitty · 30/03/2019 15:57

Thanks for the reply @callypally

The recurrent miscarriage clinic ordered the tests; I haven't had it tested before. The endocrinologist I saw was very vague about high prolactin and miscarriage but she did say something about it being able to affect implantation. From Google searches they haven't done wide studies on it and the jury's still out, so I suppose it's just an unknown at the moment?

No one else I've spoken to on MN who's gone through RMC testing has mentioned high prolactin so drawing a blank wherever I go!

I had an MRI and my pituitary looks normal.
The endocrinologist did mention putting me on medication if my last blood test came back as borderline or high, so hopefully I will be given something soon. It can't harm to try!
I've written to my GP about the conflicting advice with the different specialists.

@agteacht That line looks very promising. Have you taken another test?

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agteacht · 30/03/2019 17:50

Thank you @callypally and @KnitKitty
I am tentatively excited but of course nervous something will go wrong and it's so early still. The last two mornings the line has been stronger, I was hoping today's would be darker than yesterday's but I read hcg doubles every two days so will see what tomorrow's looks like. I keep thinking AF is coming but I remember last time I was pregnant I thought the same. It's difficult because I know how gutting that miscarriage was so it's hard not to be nervous. But really there's not much you can do eg!!

Knitkitty im so sorry to hear about your recurrent miscarriages, that is heartbreaking. I can barely imagine.

I don't know about prolactin being linked to miscarriage - I hope not! I am stopping my medication now I have had a BFP and even stopping it makes me nervous!

However I think I was told once that high prolactin can make it difficult for implantation to occur. In my mind that meant it was causing problems with actual conception. I think if you are managing to get pregnant so easily then implantation for you must be okay. Hope that makes sense!

Prolactin & irregular periods
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agteacht · 30/03/2019 18:06

Hi @callypally found my day 2 results.

LH 4.9
FSH 5.3

I think I read somewhere that a LH:FSH ratio of 2:1 suggest PCOS. Remind me do you have that?

Ironically I am meant to have PCOS but those results say otherwise. Are you seeing the doctor soon?

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KnitKitty · 31/03/2019 09:09

@agteacht I hope you have a successful pregnancy. Congratulations on the BFP! Remember not to rely too much on line-progression because different tests can have different amounts of dye in etc.

RE implantation; I think I must just be an odd case. For all of my miscarriages I've start heavy spotting as soon as implantation happens right up to losing the pregnancy, so I think there's been a problem with my uterine lining; which would fit with the prolactin issue I think. Hopefully having medication for prolactin while implantation happens helps when the time comes.

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callypally · 01/04/2019 13:36

Hi @agteacht thanks for sharing your blood results with me!
I was under the same impression that the LH and fsh should be at a similar level too, I suppose it is my first period in 5 months so maybe it will take a couple of cycles to "normalise" hmmm we will see!!

I'm currently being investigated for PCOS, so it is looking more and more likely that I have that! I have a scan booked for this Saturday coming (not the hycosy one with the dye... this is a different one just for PCOS!) so we'll see what happens from that!

I was hoping to hear from the consultant about my blood results.. but they haven't said anything! Maybe they will write to me hmmm! Unless I need to wait until my next appointment, but I need to do the 3 months of Provera tablets to sort my periods first! It's going to be a long waiting game I guess!

How's everything going @agteacht ? You feeling any effects of the pregnancy? Hope everything is going well! Try not to worry about it and go with the flow, relax and look after yourself 😊

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callypally · 01/04/2019 13:42

Sorry to hear it isn't a clear Answer @KnitKitty it must be such a confusing time 😞

I know stress can really effect prolactin, my doctor kept asking me whether I'm stressed each time I got my original results back. Recurring miscarriages would of course be a stressful time though, so no way of escaping that!

Are you having any further tests done? Good luck writing to your doctor! Hopefully that will help you!

Is your doctor usually quite good? Would the clinic that requested the tests be able to help? Hope it all works out for you

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callypally · 01/04/2019 14:08

Forgot to say! My blood results were
LH 12
FSH 6.5

My testosterone was also 1.8 (the blood work thing said it should be under 1.6... so that was also a little high!)

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callypally · 25/04/2019 13:28

Heyy girls!
Just thought I'd check in!
I've recently had a scan and it's confirmed that unfortunately I have PCOS, I got a letter through from my consultant endocrinologist recommending metaformin to my gynaecologist, just need to wait to have a hycosy scan done with the dye, then I'll get my next appointment with the gynaecologist for the next step and hopefully some medication to help ovulation!
How's the pregnancy going @agteacht ? Hope everything is going well so far!
How's everything going with you @KnitKitty ?
Hope everything is good with you girls!

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agteacht · 26/04/2019 17:52

Hey @callypally how's it going? Sorry to hear PCOS confirmed but metformin in pretty straight forward. Remind me are you now ovulating?

I've had a stressful few weeks, I hadn't anticipated how worrying being pregnant is after you have had a loss.

But today I had an early scan and there's a baby there with a heartbeat 💗
1.4mm, how tiny, and 7w5d. Due date 8 December

So maybe it's really happening!

Only DH knows for now, we are keeping it a secret until we get past the 12 week hurdle.

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KnitKitty · 27/04/2019 22:36

Hello ladies,

Thank you for asking after me @callypally.

I had a letter from my endocrinologist explaining that they want to put me on Cabergoline twice weekly to lower the progesterone levels. It's a huge relief to be able to try something which might make it easier to get pregnant with a sticky bean next time. I haven't picked up my prescription yet (haven't had a moment to spare for the past few days). The letter said they want to do a heart echocardiogram to get base-line readings in case the medication has any adverse affects. Confused It didn't make it clear whether I needed that before starting the meds... Has anyone else on here had to have an echo before starting on Cabergoline? I hope I don't have to wait any longer to start treatment though... I've been on a break since November and I'm getting really impatient to TTC again.

Sorry to hear about your PCOS diagnosis cally. It's difficult not having any answers; but then sometimes getting the answers is hard to deal with. Hopefully to be forewarned is to be forearmed in this case and you can start making some changes to make it easier to get pregnant. I hope the hycosy goes ok. Any idea when that will be?

@agteacht Congratulations I'm so pleased the scan went well!! I totally understand about pregnancy not being the magical time it "should" be after loss. Just take each day as it comes for now. I hope you're feeling well with the pregnancy, aside from the expected anxiety?

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agteacht · 28/04/2019 12:37

Thank you @KnitKitty

My symptoms seem to come and go. One day want to vomit, next day I'm totally fine. The only consistent symptom seems to be the light cramping. 8 weeks today so still a long way to go, will breathe easier after the 12w mark.

Cabergoline was the med I took to get my prolactin didn't, also twice a week, I didn't have an echo before taking it. Did they explain why?
Also I don't know a lot about it but I do think that people who have IVF have some sort of progesterone supplement or injection once they get a BFP. Do you think that would be worth looking into? I've also heard of people taking baby aspirin, although again these are all hazy points in my mind!

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KnitKitty · 28/04/2019 13:24

Apparently there's a risk of heart disease in Parkinson's? Not sure why my endocrinologist wants me to have the echo as clearly I don't have Parkinson's... But I guess she's being thorough?

I've been prescribed progesterone pessaries to take once I get a BFP by my gynae; which I'm really pleased about because I was going to ask for that if it wasn't offered, but I didn't even have to ask.

From everything I've heard the symptoms coming and going is totally normal. I know after loss it's worrying on the days that you feel fine and I won't say try not to worry about it, because that's easier said than done. Just keep focusing on the positives and take every day as it comes; you'll get there!
Sounds like your womb is stretching, which is great. How exciting!

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agteacht · 28/04/2019 22:01

A stretching womb, I know, who knew that was something to get excited about!!

Progesterone pessaries that's it... sounds perfect... when do you start the cabergoline? The Parkinson's thing is a bit random but I guess doctors know best!!

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