Does anyone have experience of high prolactin levels? I just finished my second IVF cycle and have had a second early miscarriage. The consultant required me to do a hormone blood test before I moved onto my FET and my prolactin levels have shot up. They are meant to be 496 or below but are 1057. The consultant said he wouldn't recommend continuing with treatment until I've seen an endocrinologist who can investigate my levels further. I am devastated as this means my January FET has to be cancelled.
I know that stress can be linked to high prolactin and I have obviously been very stressed following my recent miscarriage, various work sagas and a string of close friends telling me they are pregnant. I've also had high levels in the past which have eventually come back down to the normal range. However, on this occasion, I don't fancy waiting 6-8 months for my levels to come down as I am desperate to continue my IVF treatment and move forward with my life.
Any advice or shared experiences would be greatly appreciated. Thank you.
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anz07
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Around June 2018 when I had my first investigative blood tests my prolactin came back as over 1000 so they put me on a list to see an endocrinologist - the appointment was 3 months away so I paid for a private endocrinologist who I saw that day (about £110) and he basically sent a letter to the GP saying to test it again in 6 weeks and if still high to send me for an MRI.
Had an MRI to check I didn’t have a prolactinoma (harmless tumour on the pituitary gland). I didn’t luckily and it’s unexplained - it ended up going down for quite a while but then June this year I had already done 2 weeks of buserlin for ivf and I thought I ought to go get thyroid and prolactin checked again (also have thyroid problems). Anyway my prolactin was high so my cycle got cancelled - annoying!!
Got put on Bromocriptine 2.5 twice a week and it came down when they retested 6 weeks later so could start again. Apparently the GP should’ve put me on this and kept a closer eye on it earlier on - really annoying!
But all good in the end - am 16 weeks pregnant from the cycle we started in August. Any Qs message me xxxx
Thank you so much for sharing your story, it is so helpful. It must have been soul destroying to have had your cycle cancelled after 2 weeks of Buserelin. I have read about Bromocriptine...I'm hoping I can be put on it as my levels seem to frequently go over the normal range. Have booked in with a private endocrinologist for next week. Am guessing an MRI might be on the cards...just hoping things can get moving sooner rather than later.
It's so great to hear you 16 weeks pregnant, congratulations!! This gives me much needed hope! xxx
Hello! Me again (sorry!). Not sure if you are able to offer any advice. I had a repeat blood test done (a week after my initial one with the high reading) and now my level has come down to 349 which is within the normal range. My GP has said that 'no further action is necessary'. All seems very strange to me. I have written to my clinic and am awaiting their advice.
It is clear that my levels are prone to fluctuate so I think I will still see the endocrinologist, much as it pains me to delay my treatment. Just wondered what your thoughts were? xx
Hey so sorry only just seen this!! Better to get sorted with an endocrinologist first - my cycle cancelled in June was so annoying due to raised prolactin but at the end of the day would’ve been unlikely to be successful if it had gone ahead! Now here I am 17 weeks pregnant after doing my cycle starting in August and obviously looking back it was the best thing - and the time really does pass! I know it doesn’t seem like it when you’re in the thick of it but the days come and go and soon enough you’ll be on your way with the best chance. GP should still let you have regular blood tests to check on it at he very minimum if it’s prone to fluctuating xxx
No worries at all! Thank you so much for your reply. I am going to pursue investigation with an endocrinologist as this definitely needs looking in to. I really hope I can head in the same direction as you! I had a third blood test today (I have had one every Monday for 3 weeks now) so it will be interesting to see what this third test reveals. In the meantime, I am trying to remain calm (haha) and eat a little healthier. Endocrinology appt is tomorrow - I will keep this thread updated. Take care and hope you have a lovely Christmas xxx
Hey, I was found to have high prolactin over 3 years ago after some routine blood tests for fertility. I was referred to an endocrinologist and had an MRI to check that there was no prolactinoma (which there wasn’t, but they aren’t sure if it’s just too small to be picked up) so classed as unexplained. I’m on bromocriptine 2.5mg once a day at present but sometimes this increases to two a day depending on my blood test results as they test me every 3 months to check the levels are staying low. They’ve said now my levels are back down it doesn’t affect the IVF treatment - just to stop taking the bromocriptine as soon as you find out you’re pregnant. My GP said I would have to be referred to a different midwife too once we actually fall pregnant so they can keep an eye on the prolactin levels?
Thank you for sharing your story! Its is really interesting to hear how your journey panned out. I am hoping I will be put on Bromocriptine too as my levels have fluctuated quite a lot over the past year. I can't envision my levels dropping and staying permanently low. Damn prolactin! It seems to be quite a rare issue to have; most IVF'ers I speak to have never even heard of it. I guess we are the chosen few! xxx
Your levels arent crazy high so it could be something affecting it. Have you had your thyroid checked? I had high prolactin like yours and mine was related to subclinical hypothyroidism. Once this was under control my prolactin came down. You're right stress can affect it too. The other thing is prolactin rises as we sleep and falls on awakening so never have it tested too early after waking. I've written a post a while back about mine, I was so fed up but we got it sorted out.xx
Thank you so much - I have read your old post which was really insightful. My thyroid results came back within the normal range but I'm guessing the endocrinologist will do further investigations. My recent blood test states "No significant amount of macroprolactin detected. The measured prolactin predominantly reflects bioactive prolactin." From what I've read this isn't great news as it means it isn't stress-induced. We shall see.
I had the test done early morning and hadn't eaten anything. I went to have another blood test yesterday (a week after the previous) which was mid-afternoon so will see if the levels are any different. I hope my endocrinologist can find some answers for me soon. This prolactin story is worrying as I've read about brain tumours (although I appreciate they tend to be nothing to worry about), increased risk of breast cancer and, of course, problems with getting pregnant and staying pregnant. My prolactin level will probably double because of the stress of the prolactin!! xxx
All the best, I hope it gets sorted out soon or the timing of your recent bloods help too! My thyroid was almost within normal limits but too high for pregnancy.....think it was 4.96 if I remember correctly and it should be under 2 and when I got it down to this level with low dose levothyroxine my prolactin came down too.xx
I am still on levothyroxine. I was only on 50mcg and stayed on that throughout treatment until I recently got our BFP.....you have to up it in pregnancy so taking 75mcg at present.xx
Hello! Me again (sorry!). Not sure if you are able to offer any advice. I had a repeat blood test done (a week after my initial one with the high reading) and now my level has come down to 349 which is within the normal range. My GP has said that 'no further action is necessary'. All seems very strange to me. I have written to my clinic and am awaiting their advice.
It is clear that my levels are prone to fluctuate so I think I will still see the endocrinologist, much as it pains me to delay my treatment. Just wondered what your thoughts were? xx
Oh that's great news!! I just waited until a normal test and started treatment! Prolactin levels are prone to fluctuate in anyone and small things like the time of day for testing and stress can have an impact. If you would feel more confident waiting to speak to the endocrinologist and don't mind waiting until treatment then go with that, you need to be comfortable starting treatment that all is as it should be!xx
Thank you for your reply! It is great news, although I think I'm more bewildered than anything else! I was so stressed about my treatment being cancelled, I can't understand how my levels have managed to drop!! I think I will still speak to the endocrinologist about whether fluctuating levels are a cause for concern (and hey, why not lose £200 for a quick chat with him?!). Let's hope I can get moving again in the next month or two xx
Just posting here (20 days later!) for anyone who reads this in the future and is in a similar situation. After my initial high reading of over 1000, I had another blood test via my GP. That came back at 349, so I had returned to the 'normal' range. I then had a third blood test just to be absolutely sure and that came back at 407, still within the 'normal' range (which is anything between 102-496).
I paid to see an endocrinologist who said that, because my subsequent readings were back in the normal range, it was unlikely I had Hyperprolactinaemia as my level should stay consistently high if this was the case. He did a short examination of me, checking my eyesight, feeling around my neck to check my thyroid, examined my hands, checked my pulse and asked me some questions (how regular are my periods, had I experienced lactation...basically symptom checking). He was satisfied that there was no need for further investigations and has written a letter to say I can go back into IVF treatment (I was so relieved!!). He said there was no need for an MRI scan as, once you start poking around, you are likely to find something and then start treating it unnecessarily. Had my readings gone back beyond the 'normal' range, he said the next step would have been to do a 'resting blood test' where blood is taken over the course of an hour and you are lying down. This way, they can see whether the prolactin level drops as your body begins to calm.
I hope this thread helps someone out there - feel free to reach out if you have any questions!
Hi Anz, I had the resting blood test, having your bloods taken can cause you to panic even when you’re not nervous, therefore the levels spike! They put a canula in and take your bloods at the start, the middle and the end. Just to see if there’s an initial spike at the start cause of stress.
I have a prolactinoma so I am on bromocriptine 3 times a day.
Thanks Amy, that's good to know. Am hoping my levels will stay in the normal range now but, if not, hopefully a resting blood test will resolve the issue! Take care xx
Hi Anx07, thanks so much for been thoughtful, your update is very helpful! I had my initial prolactin level above 800 in September and repeated test in October and it was over 790. My GP didn't offer medicine and referred me to endocrinologist. My appointment with the speciality is tomorrow, so fingers crossed.
I hope your appointment goes well and the specialist can offer some help. Mine went down on their own. It’s a very difficult test - really does depend on the time of day, alongside stress levels. Hope you are able to reduce your levels soon. Good luck xxx
Thanks anz07, I was kept for almost 4 hours and blood was taken at different times. (cannulated blood test). I was told the consultant will be in touch with me once the results are ready. Giving myself 3-5days to follow up if I don't hear from them.
My prolactin was high but so was my TSH. My gp gave me levothyroxine 50mg per day and both came down to normal range. Am still on the meds now. I would ask your GP to check your TSH levels if you haven’t already. 😊 I had 2 early miscarriages in 2021 and I’m sure my high levels may have contributed, along with having low progesterone levels.
I’m planning a FET for early next year and my protocol this time I’ll be having heaps more progesterone. ☺️
Hello, thank you for sharing - I'm sure that will prove very useful for all in the dreaded prolactin situation! I actually have a daughter now (a miracle!). And it is interesting to hear what you have said re progesterone. That made all the difference for me. Got to my fourth transfer. First double transfer and last 2 embryos remaining (both low grade). I begged them to check my progesterone levels after transfer. My clinic were reluctant to do so but eventually agreed to do a blood test 3 days after transfer. I was already on 3 progesterone pessaries and 2 Lubion injections a day. They called me early morning on day 4 and said my levels were surprisingly low considering all I was on. They upped my dose to 3 Lubion injections a day. I honestly think that, if I hadn't pushed for that, I wouldn't have my daughter today.
I ended up having a twin pregnancy but lost Twin B at 8.5 weeks. I still can't believe my daughter held on. She is almost 2 now.
I wish you the absolute best of luck for your next transfer. It is such a tough road - look after yourself and put your own needs before anyone else's! Sending love and strength xxx
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