Consultant wants to cancel my FET on Wednesday and hasn't bothered to call me back as requested due to high prolactin

[PaulaDag]

Hi All,

Really stressed out. I had my surge scan on Friday lunch time and all is fine, lining at 8.1mm and one dominant follicle on left ovary at 20.1mm. Transfer confirmed as booked for Wednesday 13th. I get the prescription for cyclogest and lubion and off i go to Asda to collect.

I am waiting the prescription to be dispensed and I get a call from the Nurse i saw saying Dr *** has said to cancel your FET. We have received lots of blood results from your GP and your prolactin is abnormal at 761. Firstly the GP did not have permission to share my results with the fertility clinic. I actually recently removed consent for the fertility clinic to write to my GP but GP has old letters from them and so their contact details. The results were sent to info@clinic so weren't even addressed to my consultant.

Apparently my consultant told the nurse he did not request these bloods and so cancel the FET. I told the nurse they we're sent in error by my GP, they were not supposed to go them as it is actually for an immunology consultant i am also liaising with for NK cells testing (I just added in prolactin as well as its sometimes slightly elevated due to stress).

I said I want to speak to the consultant and let's do a retest as these are old bloods from 23rd Dec and i am not happy to base a decision on this. I also said its likely to be raised still due to them stressing me out and me crying in the car in Asda car park. They didn't even suggest a retest! I went back they tested, i was highly stressed and it came back at 788 so higher than GP bloods in December.

I said to the nurse I am not happy to cancel the transfer as it is stress related due to redundancy, and i haven't even been given a medical reason for this cancellation. Surely it is normal to consult in this situation and not pass a message via a nurse to cancel. Why? What are the risks to the transfer? He can't just say high prolactin and expect me to accept that! I am paying privately not NHS. I asked for him to call me back and he hasn't, just left me to worry all weekend. I've moved all my work commitments on Wednesday and started progesterone injections and had an endometrial scratch last month to prep.

I also said to the nurse please tell the consultant during my last ivf cycle he was fine to proceed with 739 on a test he did for prolactin, his words were its fine if its below 1000 and he's happy to proceed. That was a few weeks before transfers though and it was before egg collection. If he's now saying it's not fine then that could be the reason for my double transfer failing in November and I'd want a free cycle as I have wasted two perfectly good embryos (5AA & 5BA) as a result.

I called my GP and she said 761 is marginally raised an in her opinion stress related due to fertility issues and redundancy. I had a normal at 538 in September so it does fluctuate.

Has anyone else experienced this? Can he do this ? It seems to me he is annoyed because i requested bloods he didn't ask for, but they aren't for his clinic! My GP has made an error sending to him.

My partner thinks they are unprofessional as they have stressed me out all weekend now until I hear tomorrow. I told the nurse i would be putting in a complaint if this is what is decided without any consultation with us first. Disgusting service.

Obviously if there is a major medical reason that will affect transfer then i wouldn't want to waste the embryo but it brings in question the last fresh transfer when prolactin was 739 a month before and he said it was fine to go ahead. He's contradicting himself and probably forgotten what he told us about under 1000 is fine!

I am now thinking of moving clinics as they did a few things to stress me out during my last cycle - change my meds from menopur to meriofert mid stims with no notice!! Dodgy scan where lots of my follicles had so say gone and when i kicked off another sonographer rescanned and found them!

Any help or tips. I need to stay calm when they call tomorrow! I can't believe he didn't call me back on Friday and left me worried sick all weekend.

xx

[Purpledoggy]

Oh lord you poor thing! That sounds mega stressful. I can’t really give you much advice but didn’t want to read without commenting. My only suggestion is you are super unhappy with their service I suggest a formal complaint—there’s some helpful guidance on the HFEA website on how to complain about a clinic. Really hope you get some answers tomorrow xx

[PaulaDag in reply to Purpledoggy]

Thanks Purpledoggy. I think it is getting to the point we have lost all confidence in them. One consultant is lovely (a lady) and the other is so up himself - but the lead clinician so i guess if he says its cancelled then i have no choice. Super stressful. I was going to put in a complaint last time but they twisted my arm and now i think its too much and i will. Lets see if he change his mind tomorrow, perhaps he was having a bad day. I want the medical reason for his stance as I'm still none the wiser xxx

[Purpledoggy in reply to PaulaDag]

Yes thats the main thing isn’t it-if there’s a specific good reason then, crap though it may be, you can at least make peace with it. Good luck xx

[PaulaDag in reply to Purpledoggy]

Thanks. I was furious he didn't call back and just passed a message through the nurse saying cancelled due to prolactin. No reason, no risks! Totally unsatisfactory service. I'll keep you posted :)xx

[Anipea]

My sister has high prolactin and has struggled to get pregnant for many years. They found a cyst on her pituitary gland after an MRI scan. Since being on medication for 2 months she fell pregnant. This may be a good sign/silver lining for you if there are issues like my sister and might save your embryo as there maybe a high chance it would not implant, plus might help with further pregnancies xx

[PaulaDag in reply to Anipea]

Sorry to hear about your sister. What sort of numbers did she have with prolactin? Were they similar to mine 761? I have had 4 natural pregnancies albeit they miscarried. I have no problem conceiving, its just maintaining the pregnancy apparently due to age related egg quality. You're right though if there is an issue id want it sorted so not to lose the embryo but they don't treat im told unless it over 1000?

xx

[Anipea in reply to PaulaDag]

I'm sorry to hear what you have been through. Yes I think her numbers were over 1000 xx

[PaulaDag in reply to Anipea]

Thanks Anipea. Yes that ties in then as her levels are high enough to warrant treatment. I might ask my gp anyway for an mri scan when this situation is over x

[NittyNatty82]

Gosh, sounds like a right nightmare, no wonder you are peeved with the clinic!

What time was your prolactin test done? I ask because I had mine tested before Christmas, along with a load of other bloods via the GP (ahead of my FET to try and save a bit of money). My GP agreed to doing the blood tests but she didn't advise (and nor did the clinic actually) that prolactin has to be tested 3-4 hours after you wake up because levels peak in the morning.

I only discovered this once my prolactin came back slightly elevated - mine was 640. The GP wasn't overly concerned about this but like you, it wasn't within the desired range. I asked my consultant if we could retest at the correct time - which I did the same week - and then it came back within normal range. I did read that being stressed can impact it like you also said but I couldn't read your msg and not reply in case its something simple as the timing of the test that might be scewing your result!

Good luck with the consultant tomorrow. I hope it all works out one way or another xxx

[PaulaDag in reply to NittyNatty82]

Hi NittyNatty82,

The test with my GP on 23rd December was at 11.40am. The retest on Friday gone was around 2pm. I’d heard about the morning thing so guess it’s not that as they were fairly late

Was your consultant considering cancelling your FET, if you hadn’t had a normal retest?

X

[NittyNatty82 in reply to PaulaDag]

Ah OK, well at least it rules that out then.

I didn't get to have that conversation with my consultant because it was all through the nurse who liaised with him - I'm not sure what his position would have been had it still come back slightly elevated. My nurse did say that it varies by consultant though, as one consultant might not be concerned if it was slightly elevated where as another might have a different opinion. Hope you get the answers you're after tomorrow at least. Let us know how you get on xxx

[PaulaDag in reply to NittyNatty82]

Ok thanks & will update tomorrow 🤞 xx

[Jumpppy]

Awful service! Good news is you can change clinics and transfer embryos easily if you want - I've gone through a change (moved my embryos) and it was totally worth it .

In case it is helpful my RE wants prolactin as close to zero as possible and definitely not above 250. They check prolactin a few days before transfer and often cancel as for some women it is a big deal. They have meds they can give your to get it down - likely they aren't treating your prolactin correctly...someone else may?

As annoying, inconsistent and inconsiderate as they are being...could it be a potentially good thing?

Hope things get better and this is the one!

[PaulaDag in reply to Jumpppy]

Hi Jumpppy,

Isn't it bad, I'm still in shock to be honest. Seriously considering moving after this, I think it's the final straw.

What units is the 250 in for you in the US and I can try to convert? Here in the UK they say it needs to be under 700 mIU/L. I'm wondering if mine is high, even though my GP doesn't give a ****. On Friday GP said they'd do nothing or refer on to another specialist unless its over 1000. Deja vu a bit like the Vit D being low but they said its fine 🤔.

The thing is my fertility clinic don't even ask for any bloods before a ivf cycle or transfer so its almost as if they're happy to transfer if they don't know! If it can effect it they should be checking every time we transfer.

Yes you're right if it will affect it then i don't want to transfer but then he transferred my 2 embryos in November after a high prolactin in September so I'm thinking that was wrong of them to do that then?

So exhausted and tired of all this.

xx

[Jumpppy in reply to PaulaDag]

I roughly converted. They want you at no more than 10-12ng/mL...I think this is around 250 mIU/L. My levels stay really close to zero, so I don't know if there is "wiggle" room on this, just know what they target to discuss canceling.

Main thing is whether *you* are sensitive to prolactin. Has your prolactin always been high normal and you got pregnant anyhow?

As I understand it many women are sensitive and this is why many women don't get pregnant while breastfeeding - some of course do no problem

I agree with others you are spending emotional and monetary capital on this be with REs who you have confidence in. Transfer doesn't have the same immediacy as egg collection. Your embryos are precious - ensure you are comfortable before proceeding. Xoxo

(Slight addition - personally I'd be concerned about a lack of testing. At the end of the day these are endocrinologists and they should eliminate potential issues at the beginning as goal should be natural pregnancies. We knew our issue was most likely MF, but every RE I've seen has done a ton of tests "just in case." I've had friends for which the tests revealed "fixable" issues that led to natural pregnancy. They repeat all test every 6mos even if you are in treatment. In the US these tests are often 80%-100% covered by insurance so doesn't cost much if anything - or they are included in your package. So maybe it is easier to request these if the patients aren't paying. But you should have the info and option to consider.)

[WantedBaby]

Hey, I’m really sorry to hear about your stressful experience. I know somebody who has raised prolactin and she was advised by her NHS clinic that levels need to be under 500 to proceed. She had a microprolactinoma on her pituitary gland and initial tests confirmed her numbers as high as 900. The drug she was prescribed is called Cabergoline which reduced it down to 235 by her second transfer but unfortunately that failed (as did the first fresh transfer). Please don’t let this stress you out! Ask your GP to refer you to an endocrinologist for an MRI to see if there is an adenoma present. I have been told that the level of prolactin can really affect successful pregnancy rates. Good luck and let us know how you get on xxx

[Hope4another]

I'm interested to know why this is a problem. Nurse told me on Friday that I have slightly raised prolactin that's at the top end of normal. She says the consultant needs to review it ahead of my planned FET. I'm not clear why it's tested before transfer or what issues it causes

[sunset212 in reply to Hope4another]

I would be interested to know this too. Mine previously has been around the 482 mark, so just shy of the below 500 recommendation that one of the ladies commented on. But if stress is a factor .. wouldn't that mean more than 50% of us on here will have raised anyway! oh lord ! :))

[PaulaDag in reply to Hope4another]

Me too, I can't seem to get a straight answer between my GP and fertility consultant. My fertility consultant doesn't even do any bloods before transfers which i'm now thinking is dubious if it affects things or could cause issues. He knows i often have slightly out of range prolactin (i told him my history and he's done 1 prolactin test as i insisted and he said ok if you want to waste your money we're happy to do the bloods!).

@hopeforanother What did your nurse say is the normal? I'm now thinking NHS GP run of the mill normal is below 700 mIU/L. but its a different acceptable level for fertility consultants? What was your level that required a review? So yours was tested before your planned FET? What other bloods did your clinic take for routine before FET?

xx

[Hope4another]

She didn't tell me the numbers, sorry.

[PaulaDag in reply to Hope4another]

OK thanks anyway, if you find out let me know and we can compare what the clinics say.

Does your clinic always take some bloods before a planned cycle or FET? x

[Hope4another in reply to PaulaDag]

No, I have never had it before. I had a different consultant for my review and he recommended it. I've got another appointment coming up with my usual consultant and I suspect will say it's nothing to worry about. There doesn't see to be much evidence it's a problem for a FET.

[anz07]

Hi Paula,

I'm so sorry to hear of what you are going through. I recently went through a very similar experience (have a look at my posts for the whole story). I was due to have my first FET and standard blood tests showed my prolactin level had risen to just over 1,000 which is the highest it has ever been. As I've had two early miscarriages, the consultant cancelled my FET and said I had to see an endocrinologist. I was devastated.

Long story short: I had two further blood tests in the two weeks after the high reading. The second blood test came back at 349 and the third came back at 407, so both back within the 'normal' range. I went to see an endocrinologist and he said the fact that my levels had come back down to normal meant it was unlikely I had a pituitary problem. I don't tick any of the symptom boxes for the tumour (irregular periods or lactation) and he did a brief examination of my eyesight, thyroid and hands and said all looked fine. He wrote a letter to my clinic recommending I carry on with treatment, so my FET is now back on. Needless to say, this was all incredibly stressful (how my prolactin levels came back to the normal range during this time I will never know!!). The original blood test I had was done early morning (8am) and I hadn't eaten anything. It was also quite a painful blood test (usually I don't find them a problem) and the nurse was a newbie so I question whether the time of the test and the way in which it was conducted didn't give me a representative reading.

From the research I've done over the past few weeks, prolactin is a very grey area and all clinics appear to have a different approach to it. Some don't even test for it at all! There is some research which indicates a potential link between high prolactin and infertility and miscarriage. If your prolactin is high, it is basically telling your body to not get pregnant.

My advice would be to get another blood test ASAP. Ask your GP for one - I did this and managed to get a blood test at my local hospital the same day! When you go for the next blood test, try and focus on your breathing and keep your body in a state of calm. When I was in the waiting room for my second blood test, I didn't look at my phone or anything; I just focused on my breathing (with my mask on!!) and tried to stay calm. That reading came back at 349 so maybe it helped?!

If you have any questions or want to have a chat, please don't hesitate to reach out. I'm so very sorry for all you are going through because I know the pain and frustration all too well. Sending hugs xxx

[HopeOfYou]

Hi Paula,I'm not a doctor, but for what I know high prolactin may hinder ovulation, which is why breastfeeding usually prevents further pregnancies. However, if you ovulate, my understanding is that high prolactin doesn't really affect implantation - indeed may women still fall pregnant while breastfeeding. Since you don't have to ovulate as you only have embryos to transfer, and you're medically supported for what concerns hormones that help implantation, I believe that a slightly raised prolactin wouldn't be a problem. Take my comment with a large pinch of salt though! But I understand, if I were you I'd be crossed as well.

Good luck!

[Hope4another]

Hi Paula, just wondering what happened- are you going ahead with your transfer today?

[PaulaDag in reply to Hope4another]

Hi, see my post below. What happened with your review? Could yours go ahead? Did you find out yours numbers?

I had progesterone and prolactin retested just before transfer today - should get results in an hour or so. Just interested to see what it is xx

[Hope4another in reply to PaulaDag]

Gosh, what a nightmare! Fingers crossed the embryo sticks. My review is not for a couple of weeks

[PaulaDag]

Hi All, sorry for no replies i've been so exhausted and stressed with it all.

To cut a long story short the consultant rang on Monday morning saying he wasn't particularly concerned (I was livid when i heard this after the weekend i'd had!) but he wanted a second opinion of an endocrinologist as prolactin is not his forte. So i had to wait until the afternoon but he rang back and said they spoke and its ok to go ahead on Wednesday. So cancelling for nothing it seemed! A weekend of stress, no sleep and arguing with partner (as i was getting more and more wound up). If he'd rang Friday saying this id have had a better weekend. He did say on monday its not ideal though. Didn't tell me how it can affect the transfer or nothing. A bit of a pompous **** if you ask me. Might see another consultant in the clinic from now on or move as I'm private. This clinic is nhs and private and attached to a hospital in Bristol.

Then...on Tuesday i wait for the call from the lab to confirm final details, got to 4pm after getting worked up all day but my partner said to be patient, I rang them at 4.30pm and he hadn't told them it was ok to progress to transfer on Wednesday. They had me only as a possibility. Basically if i hadn't called to chase up they wouldn't have thawed the embryo on Wednesday morning.

So all went as hoped with the thaw, still a 5bb quality and no cells lost, lab said it had started to hatch. So i had the transfer at 12pm today. Currently laid in bed hoping it works this time but we'll see.

Some say a frozen is more successful but this is our first FET as all others been fresh. Had endo scratch and embryo glue so just fingers crossed i guess as this is our embryo last one.

xx

[Purpledoggy in reply to PaulaDag]

Brilliant news, so pleased it went ahead 😀 wishing you loads of luck xx

[PaulaDag in reply to Purpledoggy]

Thank you Purpledoggy and for your support. Everyones support means so much xx