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Conception

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Original poster

Very high prolactin levels TTC

27 replies

pigeon166 · 03/07/2023 19:20

Hi all, wondering if anyone has had a similar situation to this as I’m somewhat freaking out!
I conceived first month of trying in December but had a missed miscarriage diagnosed in late January, used medical management to miscarry.
Been TTC since February but periods have been quite irregular - I was on the pill for 12 years but remember I always had short cycles before going on the pill, however since the miscarriage they were even shorter ranging from 21 to 24 days.
I got a blood test privately and it came back with an extremely elevated level of prolactin - 2,000 vs a normal level of less than 500 according to the medical report.
I have a GP consultation booked for Thursday and I have spoken to my acupuncturist who said this level is indicative of a pituitary tumour, which is benign but prevents ovulation.
Has anyone had experience of successfully treating this condition with medication and going on to conceive? I’m quite scared reading about the side effects of the medication but it seems it can be quite successful. How long did it take to get an MRI scan and be prescribed medication on the NHS?
For extra context I am 31 years old.
Thanks in advance!

OP posts:
Bosabosa · 03/07/2023 19:27

Yes I had this! Easily solved with drugs. I got pregnant after 3 weeks of being on them and now have my beautiful child (primary school aged). I was lucky to have medical insurance at work so the MRI and medication were all completed and prescribed pretty quickly. I was 35 at the time. I can't remember what the drugs were called but they did knock me out a bit, couldn't work much whilst on them but as I say, I didn't take them for long. Hopefully your tumour is relatively small as mine was. If it is large you may need an op but I expect you would have had other symptoms if it was very large. I hope this helps. It's called a microprolactinoma.

Original poster
pigeon166 · 03/07/2023 19:30

Thank you so much for your reply, this is very reassuring! I think I have private medical cover through work, but the complication being I’ve just accepted another job so I don’t think I’ll be covered at my current job during my notice period and I know I won’t be covered at the new job during my probation period. But I will see what the GP suggests 🙂

OP posts:
MicrowaveRice · 03/07/2023 19:33

I had this with PCOS ... Metformin and a low carb diet sorted it. Good luck.

ATerrorofLeftovers · 03/07/2023 19:34

These are common and often go by themselves or with a bit of help with diet, time, etc. The acupuncture sounds like a good call and the meds are very effective.

Original poster
pigeon166 · 03/07/2023 19:48

Thanks all, I think with how high my levels are it’s indicative of a tumour rather than anything else that can be treated naturally. But hoping I can get an MRI booked in relatively soon to confirm it.

OP posts:
Bosabosa · 03/07/2023 19:57

I am sure you are covered whilst you are on notice as an mri can be done pretty quickly. But do check with both your current and new employer about cover. Good luck!

Ttcmumma · 03/07/2023 19:59

Following as I'm going for a blood test tomorrow to check my prolactin levels 😔. MMC at 14 weeks in January, cannot concieve since and my breasts leak some form of discharge 🤦🏼‍♀️

Also intrigued if anyone had the between 500 and 1000 level as I was told this is high enough to affect fertility but they can't treat until it's over 1000? Obviously don't know my number yet but just preparing! Very coincidental that I came across this thread day before my blood test.

Underthesea88 · 03/07/2023 20:06

I had this but tested again and they came down. Doctor said any stress can make them high including the blood test itself. Even things like being on antihistamines can affect it. I was a frantic mess thinking I couldn’t conceive but did another test within 2 weeks and the levels had come back down. They shouldn’t go off one set of blood tests. Another set should be taken in the morning because of circadian rhythms which also have an effect on levels. Although I didn’t have the leaking boobs but I know that it can be rectified fairly easily.

Of course if you look it up online then you tell yourself that you’re infertile and doomed like I did! Google if not your friend (we all
do it!)

@pigeon166

Throwawy · 03/07/2023 20:15

I had this. My periods completely stopped for 3 years before I was diagnosed (drs tested everything but prolactin in that time Confused.

I've been on Cabergoline 10 years now. I've been pregnant twice, first time it took 6 months to conceive. Second time was an accident and ended up ectopic.

If it makes you feel any better, it's meant to be the most easily treatable form of infertility.

NoIncomeTaxNoVAT · 03/07/2023 20:18

MicrowaveRice · 03/07/2023 19:33

I had this with PCOS ... Metformin and a low carb diet sorted it. Good luck.

This was the same for me too. Caused by PCOS. Conceived in the end with letrozole.

Original poster
pigeon166 · 03/07/2023 21:14

Ttcmumma · 03/07/2023 19:59

Following as I'm going for a blood test tomorrow to check my prolactin levels 😔. MMC at 14 weeks in January, cannot concieve since and my breasts leak some form of discharge 🤦🏼‍♀️

Also intrigued if anyone had the between 500 and 1000 level as I was told this is high enough to affect fertility but they can't treat until it's over 1000? Obviously don't know my number yet but just preparing! Very coincidental that I came across this thread day before my blood test.

Sorry to hear about your miscarriage, it’s horrible isn’t it 😔I hope you get the answers you’re looking for with your blood test. I don’t know what the levels need to be to get treatment, I’ll update the thread when I hear more from the doctors.

OP posts:
Original poster
pigeon166 · 03/07/2023 21:15

Underthesea88 · 03/07/2023 20:06

I had this but tested again and they came down. Doctor said any stress can make them high including the blood test itself. Even things like being on antihistamines can affect it. I was a frantic mess thinking I couldn’t conceive but did another test within 2 weeks and the levels had come back down. They shouldn’t go off one set of blood tests. Another set should be taken in the morning because of circadian rhythms which also have an effect on levels. Although I didn’t have the leaking boobs but I know that it can be rectified fairly easily.

Of course if you look it up online then you tell yourself that you’re infertile and doomed like I did! Google if not your friend (we all
do it!)

@pigeon166

That’s a good point, thank you! I’m guessing the GP will order further blood tests as a first step.

OP posts:
Original poster
pigeon166 · 03/07/2023 21:17

Throwawy · 03/07/2023 20:15

I had this. My periods completely stopped for 3 years before I was diagnosed (drs tested everything but prolactin in that time Confused.

I've been on Cabergoline 10 years now. I've been pregnant twice, first time it took 6 months to conceive. Second time was an accident and ended up ectopic.

If it makes you feel any better, it's meant to be the most easily treatable form of infertility.

Sorry to hear about your ectopic. I’m glad I’ve got tested early, hoping there are still options available. How do you find being on Cabergoline, any side effects? Is there benefit to being on it for a prolonged period as opposed to just when TTC?

OP posts:
Throwawy · 03/07/2023 22:01

Cabergoline was fine side effects wise. I take it before bed - drs recommendation - so that I sleep through any. I took Bromocriptine to start and really didn't get in with that. Dr said that most people don't but it's cheaper so they usually try it first. It's also sometimes reccommended as it's meant to be safer in pregnancy. I had to stop Cabergoline one I got a positive test.

In terms, of taking it long term. I had other effects of prolactinoma, mostly weight gain (I stopped Cabergoline at one point and gained 4st in 3 months!!), but also headaches and fainting. Also high prolactin often means low estrogen which means osteoporosis.
If your high prolactin is caused by a prolactinoma you have a 50% chance it will resolve in pregnancy - sadly mine didn't.

Original poster
pigeon166 · 03/07/2023 22:28

Throwawy · 03/07/2023 22:01

Cabergoline was fine side effects wise. I take it before bed - drs recommendation - so that I sleep through any. I took Bromocriptine to start and really didn't get in with that. Dr said that most people don't but it's cheaper so they usually try it first. It's also sometimes reccommended as it's meant to be safer in pregnancy. I had to stop Cabergoline one I got a positive test.

In terms, of taking it long term. I had other effects of prolactinoma, mostly weight gain (I stopped Cabergoline at one point and gained 4st in 3 months!!), but also headaches and fainting. Also high prolactin often means low estrogen which means osteoporosis.
If your high prolactin is caused by a prolactinoma you have a 50% chance it will resolve in pregnancy - sadly mine didn't.

Thank you for responding, glad to hear you were ok side effects-wise. I’ll definitely note all this info down for talking to my doctor.

That is interesting re taking it long term - I haven’t noticed any side effects other than irregular periods so really I would only need to take medication for conceiving if it is otherwise benign.

OP posts:
Runninghappy · 03/07/2023 22:40

I have very high prolactin too. I had bromocriptine, cabergoline and quinagolide over the years. I conceived my daughter (14) on bromocriptine but I actually came off it all eventually as I was diagnosed with ms and that took priority and all the meds for the prolactinoma made me so unwell. It’s not very sensible as I’m high risk for osteoporosis but I couldn’t cope with the medication.

Original poster
pigeon166 · 03/07/2023 23:39

Runninghappy · 03/07/2023 22:40

I have very high prolactin too. I had bromocriptine, cabergoline and quinagolide over the years. I conceived my daughter (14) on bromocriptine but I actually came off it all eventually as I was diagnosed with ms and that took priority and all the meds for the prolactinoma made me so unwell. It’s not very sensible as I’m high risk for osteoporosis but I couldn’t cope with the medication.

Sorry to hear about your MS and that you had a bad time on the drugs. Yes, I’ve read about the osteoporosis risk so that is definitely something to ask my doctor about. I’m glad to hear you were able to conceive in the end!

OP posts:
Newbieatthis · 04/07/2023 01:01

Hi Op, also found out I had prolactinoma at around age 40 after no periods for a year or so, thought early menopause, but no. Had prompt MRI & meds prescribed fairly swiftly and decided to try and conceive. Bromocriptine wasn't great but managed to work throughout with only few queasy moments. Conceived in a few months but had early miscarriage then pregnant again in a few months, had twins at age 43. Stopped meds straightaway and never went back as I just had annual checks, MRI etc for about 10 years after, also dexa bone scans. Just to reassure you I'm absolutely fine now, age 58, no meds, no osteoporosis, in good health, and teen twins doing great.

Newbieatthis · 04/07/2023 01:03

All treated on the NHS by the way, had a really great endocrinologist..

ScrantonDunderMifflin · 04/07/2023 01:50

Had two m/c so git prolactin tested, first results came back high but the repeat was normal. Prolactin can vary so much e.g. depending on stress levels etc so a one off high result might not mean anything. All the best x

Original poster
pigeon166 · 08/11/2023 20:27

Hi to anyone who finds this thread in the future - I wanted to pop in and give an update in case anyone finds this thread and doesn’t like being left hanging like me! So I had the test repeated a few times and each time the prolactin was elevated but all other hormones were normal. I was referred for an MRI but a couple of days before it was scheduled I found out I am pregnant! It was a total shock and not planned, but I’m now 13 weeks and everything is going perfectly. I decided not to go ahead with the MRI in case of any risk to the baby, so my doctor said to re-test my hormone levels after baby is born and I’ve finished breast feeding. Thought I’d share my positive outcome for anyone going through the same ♥️

OP posts:
Bosabosa · 09/11/2023 00:35

Congratulations!! Yes once you have finished breast feeding have your MRI! Brilliant news x

Eggsellenté · 12/11/2023 00:14

pigeon166 · 03/07/2023 19:20

Hi all, wondering if anyone has had a similar situation to this as I’m somewhat freaking out!
I conceived first month of trying in December but had a missed miscarriage diagnosed in late January, used medical management to miscarry.
Been TTC since February but periods have been quite irregular - I was on the pill for 12 years but remember I always had short cycles before going on the pill, however since the miscarriage they were even shorter ranging from 21 to 24 days.
I got a blood test privately and it came back with an extremely elevated level of prolactin - 2,000 vs a normal level of less than 500 according to the medical report.
I have a GP consultation booked for Thursday and I have spoken to my acupuncturist who said this level is indicative of a pituitary tumour, which is benign but prevents ovulation.
Has anyone had experience of successfully treating this condition with medication and going on to conceive? I’m quite scared reading about the side effects of the medication but it seems it can be quite successful. How long did it take to get an MRI scan and be prescribed medication on the NHS?
For extra context I am 31 years old.
Thanks in advance!

This week I asked for a copy of my blood test which was taken in july and saw that my prolactin was 857. At the time the doc told me my prolactin was a bit on the high side but wasnt concerned. I didnt question it and didnt know what prolactin was or the impact it could have in TTC and possibility of tumor etc. But when i saw the results on paper i was a bit surprised how high it was, so I have called GP yesterday to get a new blood test done to see if it has come down. I did some research and learnt that Biotin, usually in hair and nail vitamins, can increase prolactin numbers as well as thyroid TSH numbers. So maybe dont take anything with biotin (if you are taking that) to be on the safe side. I was taking hair vitamins during that time but have stopped for coupla months now. Hoping the new blood test will come back normal.

Mumontherunn · 19/11/2023 05:39

Congrats OP! I was actually reading in the future… and just saw your happy news

watermelonsugarmum · 15/05/2024 14:12

@pigeon166 Hi your TCM accuppunturist seems very knowledgable are they based in London by any chance ?

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