Confusing prolactin results rant and how do I find an endocrinologist privately?

[DisneyHopeMagic]

Hi,

I’m relatively new here, only posted some replies a couple of times so hoping I’m doing it right.

It’s been 4 yrs since me and my husband started trying. After 2 yrs without success we went to the GP who referred us to a fertility clinic.

Long story short I had a hydrosalpinx (blockage in the Fallopian tube) from surgery as a child for appendicitis.

Whilst I was waiting for the surgery we completely unexpectedly had a positive pregnancy test but knew we couldn’t get excited as it was unlikely to be successful and made an ectopic pregnancy a lot more likely (which I didn’t know can be life threatening for the mum!!). Had a miscarriage at 6weeks + 1 day. Was in and out of A&E due to the higher risk of ectopic.

I had to wait a year for an operation to remove the hydrosalpinx where they found everything was stuck to together. The tube around the ovary as a mass was stuck to the uterus, pelvic sidewall, bowel, omentum etc. So what should have been a 40min op turned into a 4hr one! So glad that’s all unstuck as I doubt my poor eggs has much chance against all of that!

Now we thought we were FINALLY ready to start IVF (we’ve decided that’s the route for us after all of this!). Had blood tests and baseline scan.

Found out my prolactin was too high at (939mU/L), slightly elevated testosterone and also a haemorrhagic cyst on the left ovary and my right ovary the sonographer said is stuck to the back of my uterus! So frustrating!

2 weeks later I had another prolactin test through my GP (who said “what do you want me to do?” on the telephone appointment even though I’d sent in my first set of results) and they were high again at 785mU/L. GP said the lab had said to ‘retest in a month’s time as they are still high’.

So waited another month, had another prolactin blood test. Called up for the results and was told the Dr had locked them so I’d have to make an appointment to discuss them. Waited a week for the telephone appointment with a Dr (different one because my normal one was on holiday) to discuss the results.

She said she was confused because the previous one at 785mU/L had lab notes that said they had calculated for monomeric prolactin and ‘the patient shows true hyperprolactinaemia’ and ‘to see endocrinology team’. The other Dr hadn’t mentioned that at all!

Also, the most recent results had come back at 402 mU/L which is in the normal range! She said this was the first time she’d heard of macroprolactin which was mentioned on the lab notes and that I’d need a specialist to interpret the results. She has referred me to a specialist but said she knew it ‘would take a long time through the NHS, months’. She asked if I had insurance to see someone privately, which I don’t. She has referred me as “urgent” but then said if I hadn’t heard anything about the referral after 4 weeks to call back.

So now I’m trying to look at how to see an endocrinologist privately. Should it be someone who is a Reproductive Endocrinologist or just an Endocrinologist? Any ideas on where to start?

I tried sending my results to the IVF clinic in Cyprus that we are wanting to use and they just said that it’s good that the prolactin showed normal for September’s results and to have them retested when we want to start. But we have been wanting to start for ages!

I did some research (as usual! Dr Google!) and found that high prolactin can mean a growth or tumour on the pituitary gland so now I’m worried about that. Also the IVF clinic had said the high prolactin levels can affect egg quality so should I now be waiting and hoping the prolactin remains low in order to give my eggs longer in the better conditions in a bid to help quality?

Feeling exhausted and we haven’t even started IVF yet.

Sorry about the super long essay but it’s been a lot and I just needed to rant. Any help or advice or testimonies would be so appreciated. Xx

[Chel91]

Sorry you're having another set-back! Unfortunately, I've never dealt with this but I do see some ladies with it from time to time. Usually it's nothing to worry about, can be linked to hormone issues from the thyroid or PCOS etc.

You can get medications called Cabergoline or Bromocriptine to lower the levels. Definitely you want the levels low and nice and stable before IVF. Maybe your GP can give you a prescription. A Reproductive Endocrinologist is probably more helpful in terms of knowing the best levels of everything for IVF / conception, but definitely see the NHS team too when they call you just in case. Best of luck xx

[DisneyHopeMagic in reply to Chel91]

Aww thank you lovely! How are you doing? Hope your managing to rest as much as possible and hope you start to feel better soon.

Yes, I have read that about Cabergoline etc too. I’m not sure I trust my GP to prescribe anything just because she seemed like she didn’t fully understand the results and was a bit hesitant to advise on anything.

I will try and find a Reproductive Endocrinologist to show them my results and see what they think. I am heartened by the fact that when other ladies have said about taking the medication for prolactin it seems to work relatively quickly (around 5-6 weeks) so at least there’s that.

Hopefully I can find a nice Reproductive Endocrinologist who will help and like you say, I’ll keep an eye out for the referral letter from the NHS team in the meantime too. Xx

[Chel91 in reply to DisneyHopeMagic]

I'm doing quite a bit better thankfully! 😊 Thanks for asking! I think it will be another week before I'm up to regular life, but that's ok with me. Slow and steady wins the race I guess haha.

Good luck finding a RE! Wish I could offer a suggestion, but I'm not in the UK anymore. I guess most RE's are affiliated with IVF clinics, but there are probably some that will give you advice, testing and treatments without doing cycles with them hopefully. With IVF there always seems to be delays, but hopefully you can get things sorted so you can start soon enough 🤞🏻💕 xx

[Eloquentia]

Hi! I've had prolactin issues in the past. The problem is that it can indicate issues but it is also a stress hormone, so if you are stressed during the blood test, it can go sky high! I have been told that for accurate prolactin results, you need to rest and be calm for 20 -30 minutes before the test. Fingers crossed it was just nerves.

[DisneyHopeMagic in reply to Eloquentia]

Hi Eloquentia, yes I’ve learnt (through exhaustive Google searches) that stress can cause it to go up. And before the first test I was quite stressed with work when trying to cover for a senior team member's holiday plus my own work on top so I can definitely think that had a sway in things. Additionally I’ve learnt that doing exercise and anything like a shower which would stimulate the breast/nipple will also affect it. Annoyingly my first blood test was an at home one where you post it off and whilst prolactin wasn’t the only thing being tested, it was in the mix of it all, so it was a bit annoying that ‘in order to help with blood flow’ it said to ‘have a hot shower or do some exercise’ before taking the blood sample! So helpful! I was nervous so obviously did everything they had suggested. Probably didn’t help the levels!

Since then I’ve been taking Vitamin E and Zinc daily as I read they help reduce the levels. I tried taking vitamin B6 because that’s supposed to help but it brought forward my ovulation by 4 days! So I stopped that as I didn’t want it to mess with my cycles.

I’ve also been eating more chicken/tuna and spinach as natural sources of B6. Avoiding fennel and fenugreek (and red clover as it said - but I don’t have that normally anyway).

I had been on Pregnacare preconception/prenatal vitamins but read that the high levels of biotin can also raise prolactin so ended up doing yet more research and am now on one which has a third of the biotin in it (Naturelo Prenatal).

I’ve also been trying to rest and stay as calm as possible, especially before each blood test. Even though I get nervous about it it has been coming down so I’m hoping it was something in all of that that was raising it and not a pituitary tumour.

[Fiolek]

Hi. My elavated prolactin seemed to be related to slightly underactive thyroid. I had TSH in the region of 4 and elevated prolactin. Doctor put me on a small dose of levothyroxine and this brought both prolactin and TSH levels down within less than 2 months. Not sure if this could be the case with you butit may be worth checking TSH levels .

[DisneyHopeMagic in reply to Fiolek]

Thanks Fiolek, I did have my TSH levels checked in my original blood tests in August and it was 0.97mU/L (their range shows as 0.20 - 4.5 as normal) and free T4 was 13.9pmol/l (normal range 7.00-17.00). Not sure if that helps at all.

[Positivechangeplease]

hey! I’m not sure how much I can help but prior to my ivf taking place I also had elevated prolactin results. Not super high but elevated over normal. Previously I was diagnosed with pcos however fertility doctors said I didn’t because my testosterone was normal 🙄

So… I was sent for a blood test over 2 hours where they measured my prolactin because stress can elevate it so they try and make sure you’re very calm and test it. No difference for me, so then I was referred to endocrine and was sent for an mri to check for a tumour (you definitely should be sent for this). I continued my fertility treatment in the meantime it didn’t stop this… they found no tumour and had no explanation for my elevated level said it might be normal for me and I asked why then I have facial hair and he said it was a mystery: fantastic response Mr specialist 🙄 so I’m not convinced an endocrine can even help.

Meanwhile fertility docs were happy to proceed because there was no tumour and they could confirm I was ovulating, if they can confirm you ovulate then there is no issue here.

My ivf egg collection was successful. So the prolactin remains a mystery. So I guess the main thing is- do you know if you ovulate?

[DisneyHopeMagic in reply to Positivechangeplease]

Hi Positivechangeplease, sorry to hear about what you’ve had to deal with.

Yes I did ask about the long (cannulated) blood test but my GP said she thought that was for REALLY high levels only. So she just sent me for a retest instead.

I have learnt that I need to be calm and give myself plenty of time to get to the hospital for the blood tests each time and just try my best to stay calm as possible.

I have been taking Vitamin E and Zinc daily as that’s supposed to help lower prolactin levels and I eat more Vitamin B6 rich foods like chicken, tuna (not too much though for the mercury levels!) and spinach.

I think I ovulate, yes, because I do get a positive each month with the Clearblue ovulation tests. I started using them again thinking it’s best to be more accurate getting closer to IVF starting. But this month I ran out for a day and I have had negatives each day after that so it makes me think that was the day that would have shown positive. I’m due my period in about a week so should know where I stand then.

I did take vitamin B6 for a short time (about 9 or 10 days) and it brought my ovulation forwards by 4 days so I got worried it would also shorten my luteal phase and stopped taking it. Unsure if I’ve thrown things off a bit by doing that.

It’s hard to know what t do for the best!

[Positivechangeplease in reply to DisneyHopeMagic]

Hey! That’s okay. It’s all worked out for the best really… it was just that if there’s no tumour there’s not much they can do. Your GP obviously doesn’t know the long blood test is for any elevated levels it helps the specialists work out what to do.

Haven’t you had scans yet? For ivf they’ll be scanning you and that’s actually how I found out I was ovulating and monthly. They can actually tell from the scans which ovary ovulated.

What we can say though is if you’re having periods too you are very most likely ovulating. So that’s a good sign. Those tests aren’t great if you have hormone imbalance as it can see an elevated LH but your LH could be naturally elevated. However it’s looking for an elevated hormone so missing a day could have upset that too.

Interesting on the foods. At the time I didn’t read anything about lowering it, and in the end it didn’t have any effect on my pregnancy. It might have affected my milk - but so many other things were a factor in that it might not have been that.

If your fertility doctors are happy to go ahead despite the prolactin (as mine were) then you should go ahead. Note you can’t have the mri to rule out the tumour once you start ivf as they won’t do it in the first 3 months of possible pregnancy

[DisneyHopeMagic in reply to Positivechangeplease]

Thank you so much, it’s great to hear that everything worked out in the end and the prolactin didn’t affect your pregnancy. That’s quite reassuring to hear.

I had an Antral Follicle Count scan at the time and I had a Haemorrhagic cyst on my left ovary which the sonographer said is a type of cyst that is usually associated with ovulation and can come and go. So I assume that might have been the side I ovulated on before that scan (which was on day 3 of my cycle).

I do have regular periods though so that’s a good sign.

Good to know that you can’t have an MRI scan once you’ve started IVF. Would that mean a delay of 3 mths afterwards if I did have an MRI scan then?

[Positivechangeplease in reply to DisneyHopeMagic]

yes, although I’m not sure what the benefit is of knowing you have a tumour when there’s nothing you can do about it. Might be best to postpone it totally if you start ivf. The only thing I got late on (and it wasn’t certain) was GDM which could have been due to pcos or this prolactin thing I’m guessing. But everything was still fine…I had awful hormone reactions like skin tags in abundance and got even more facial hair… just hormones… and seems while there’s not much I can do about them - they’re not actually an issue in terms of fertility.

[Ubeeten8]

Hi DisneyHopeMagic,

Please don’t worry. I had high prolactin levels too. Had cannulated tests which showed it wasn’t stress related. Had an MRI to rule out a tumour. I saw a lovely endocrinologist in Harley Street privately called Mr Philip Kelly. He prescribed Cabergoline which I take- a small dose of half a tablet a week and it’s under control.

Hope that helps xx

[DisneyHopeMagic in reply to Ubeeten8]

Thanks so much for your kind words and reassurance. I would like to have a cannulated blood test and would definitely like to rule out a tumour. Then I can just set to working on keeping my levels down and hoping IVF works for us.

Good to know about your positive experience with your endocrinologist. I’m in Cheshire so it’s quite a journey to London but if I can’t find someone nearer then I may just consider it!

[Ubeeten8 in reply to DisneyHopeMagic]

yes definitely worth seeing him. Very nice guy. Agree with you get it sorted then focus on ivf 🙏 it will be fine

[Albs171]

hello, I had this… I had results between 2000 and 400 and had fortnightly bloods for like 3 months and then saw an endo consultant at uclh.

In the end they put it down to stress!

If the numbers are all over the place I think stress is a likely cause. If it’s constant or increasing it could possibly be the pituitary tumour.

Defo see an endo specialist. Depending on wait list private of course an option.

But in meantime I’d defo encourage gp to give you regular bloods so you can see if there’s a pattern?

Try not to worry. Hope all goes well xx

[DisneyHopeMagic in reply to Albs171]

Thank you Albs171, I’m sorry to hear about your levels and stress. If it is right that increasing or constant levels would be more indicative of a tumour then that does give me some relief as mine seem to have been reducing each time.

Blooming stress! Causing all this malarkey!!

Ok, I’ll consider having another telephone appointment to discuss it with the GP and see about continuing the testing. My last one was coming back as normal at 402 but previously had been higher and that one had been tested for macroprolactin which showed me as ‘truly hyperprolactinemic’ so that for me is where the confusion lies.

Definitely going to see an endocrinologist about it all. Just struggling to have the energy to research them whilst working full time etc. I will get there though.

[Cinderella5]

Hi lovely, sorry to hear that you are having a nightmare with your prolactin. I went through a phase of this being the case for me and I was banging my head off a brick wall, mines was 1311. I eventually found out that the first cause of my raised prolactin was due to a slightly elevated TSH which was 4.96. Now this comes in as normal and not high enough to treat but too high for fertility so I was given low dose levothyroxine which brought it down and as it came down slowly so did my prolactin however it then got stuck in the 600's. I did a bit of research and discovered that as you sleep prolactin rises and reduces on waking. I was having my bloods done at around 8.30am so I could scoot to work which wasnt that long after waking. They say to do prolactin around 3 hours after waking so thats what I asked for and my levels were normal. I would have thought if you were looking at a tumour then your levels would be increasing but thats a bit of an educated guess from my reading. Have a look at your TSH and a blood test that isnt first thing and see if that helps? Ive copied a link to my one of my old posts below.xx

healthunlocked.com/fertilit...

[6yrsincounting]

HI 👋 I would strongly recommend seeing an endocrinologist. Unfortunately a GP won’t be able to prescribe any meds or give a proper answer. I have high levels of prolactin. Consistently they have been between 1000-2000, the normal range ending around 540. I have taken the highest dosage allowed on both Bromcriptine and dosage used for people with tumours of cabergoline, which 2 MRI’s have proven I don’t have. They have done nothing, I had to request to be put the only othe drug that can find that helps with levels and NHS will fund. Blood tests this week will say if they worked. My levels appear to be stress related and an immunity to the other drugs. Where I am the NHS fertility team won’t proceed with the IVF unless it is normal and stable and due to this I have been unable to start IVF. For your own sanity sake I would suggest see an endocrinologist so there is no reason for you not proceed with whichever fertility treatment that is suggested.

To find a private consultant, you can Google it as there is a full register of consultants, there has to be by law 😊

[DisneyHopeMagic in reply to 6yrsincounting]

Hi 6yrs, thank you for your reply. I’m sorry to hear about your experience and levels. I hope the new drugs have helped to control them for you.

I’ve given myself the rest of my cycle off to just relax particularly because I have been having quite bad back pain. At first I was worried it might be due to my right ovary being stuck to the back of my uterus but when I’ve taken more time to try and figure out where exactly the pain seems to be emanating from and I think it’s actually coming from quite a bit higher up than uterus level. I’m also waiting for my period to start so thought that might help things to settle down again.

Once that happens I think I should have a bit more energy to get the endocrinologist sorted. I think I’ve pretty much accepted that it’s probably best for us to wait to do egg collection in January because I think if they start me on the birth control pill now and then stims etc I guess the egg collection would fall in December sometime? But as we’ll be flying to Cyprus for that we’d prefer not to have to travel at the busiest time for airports etc especially with trying to avoid Covid and everything throughout all of this.