GP won’t refer me to recurrent miscarriage clinic after 3 miscarriages

[RainbowRoad123]

In October I had my 3rd miscarriage in the space of 9 months, all losses around the 5 week mark - I’m 37.
After my 2nd miscarriage my GP arranged Hormone and Serum TSH blood tests which they say were normal. I also requested a pelvic ultrasound where a polyp was found in my uterus lining and this was referred to Gynae for advice.
Whilst waiting for that advice I fell pregnant for the 3rd time and the GP said that Gynae had advised they weren’t going to take any action on the polyp anyway as it was ‘a common presentation and likely endometrium’.
My GP did however refer me straight to Gynae to see if there was anything they could do to help this pregnancy stick. They prescribed progesterone on the off chance it might help even though my levels hadn’t been tested, however I still miscarried at 5 weeks but didn’t find out until 10 weeks as the progesterone masked the miscarriage.
After this 3rd miscarriage I was given an appt with another GP who confirmed that now I had had a 3rd miscarriage I could get more help. They requested blood tests for Vitamin D, Diabetes and Clotting and said once I had those results, to make a joint appointment with my partner (who has had 2 poor semen analysis) for the referral.
My tests came back ok and we had the joint appt with another GP who said she didn’t think I needed to be referred to Fertility as I can get pregnant but I should be referred to the Recurrent Miscarriage Clinic and to have a break from trying in the meantime.
I then had a message a week later to say that if I get another positive test, I should contact the EPU who will look into progesterone and aspirin. However the progesterone didn’t work for me last time and I wouldn’t have thought aspirin was relevant as my clotting results came back as normal (although I would of course be open to trying it). Also, if I wait for a positive test at 4 weeks, by the time I contact them and get an appt it will likely be too late again as I seem to miscarry at 5 weeks.
I called the RMC at my local hospital to ask if I should have been referred to them and they confirmed that they just need a letter from the GP confirming I have had 3 miscarriages and they would see me.
I’ve told my GP this but he is telling me that I’ve had all the tests so there is nothing else they can do, and started saying it was just ‘harder to keep a pregnancy as we get older’. He also said he then thought referral was only after 4 miscarriages whereas the other GP’s and all online advice says 3.
Throughout this whole process I haven’t spoken to anyone who specialises in miscarriage and I feel like I’m just being fobbed of by GP’s who all say different things.
Apologies for the long post but does anyone know where I go from here? TIA

Sorry to hear of your experience and that you are being fobbed off. Could you maybe show the GP the advice on Tommys website about being referred to a recurrent miscarriage clinic and ask them to refer you to your nearest one shown? It even tells the GP how they would refer to an appropriate clinic.

My GP had no idea what to do with my referral so I’ve been referred to my nearest hospital gynae unit but am about to ask them to refer me to St Mary’s in London as they have a specialised recurring miscarriage clinic.
In the meantime I self paid for an initial consultation with one of the consultants there today, but I am lucky in that I can claim that one back with work. For the remainder of the tests I am hoping the referral comes through in time. if you aren’t close to one of the specialist centres they do zoom consultations, I had one today and it worked well.
Also to the remark your GP made about age, I’m 35 and the specialist consultant kept calling me young and said several times he didn’t think my age was anywhere near being an issue. I would keep pushing a referral, 3 misscarriages is more than enough for that and they clearly aren’t up to date on the current referral pathways if they are saying otherwise.
Good luck!

X3 miscarriages here is the criteria too. However they will not count an early chemical pregnancy as a miscarriage. I can’t quite remember the exact guidance now but could it be that you don’t meet the local guidance to the very letter?

its odd your gp was willing to do progesterone without obs input, as that’s very relaxed. I’d suggest making an appt to discuss the referral advice/criteria - you can often get them online too for your trust.

They may have already put in a request and got back ‘advice’ from miscarriage clinic saying if these tests are all normal and you’re happy to give progesterone etc they wouldn’t do anymore at this point.

I'm sorry for your losses OP and the mixed advice you've had from your GP. I lost 3 pregnancies, TTC 12yrs, no living children and found that I needed to read up/learn/and know exactly what I was/wasn't entitled to and explain to GP's and GP secretaries the correct info! I was initially told to go home and relax and no testing would be done because I was a few days early for the 12mth mandatory wait when TTC. Finally, when a D21 blood test was done and it was normal- again, no referral and no tests done. I changed GP's eventually after they completely cocked up sending the fertility referral to the right hospital, the GP secretary claimed I needed to be seen at my closest hospital- despite that fact they didn't have a fertility clinic nor do IVF! I pointed this out- to be told that I was in the wrong and I needed to be referred to the closest hospital!

I'm sorry if this is TMI, but during my 3rd MC, I put the products in a sterile container from the pharmacy, contacted the local EPU and asked for genetic testing on it. They can't always find a cause, but in my case- they did. IF you sadly did MC again, I would strongly advise you to do the same. You might at least get some answers- was it a blighted ovum, genetic issue, molar etc.

Read up about what funding and rounds of IVF might be available in your area. Some allow 3, some none and many have certain criteria for NHS treatment. You may not need this at all- but if they have a BMI criteria, smoking criteria etc, you can work on that now.

I'd try getting an appointment with a different GP- not the one that said you need 4 MC's before referral, and show them the advice online- like someone else suggested.

The book 'It starts with an egg' is worth a read and you can get copies off ebay. Wishing you all the best OP and hope things work out x

I think your GP is wrong, it’s after 3 not 4. Please insist to get referred. I was referred after 3 by my GP. If you are near London, I can highly recommend Dr Nicolaides at the Fetal Medicine Centre. He helped me massively after my multiple miscarriages. And he also wrote a very clear letter (letters in fact) to the GP and hospital with instructions on what to do. Good luck!

Thank you for your replies and sorry for your losses too.

@Lalalala77 I have heard a lot about Tommy’s and that’s a good idea to show my GP their referral criteria. If the nhs refer you to an outside clinic such as Tommy’s, do you know it is still covered on the nhs or are there fees involved? I’m in Hampshire and it’s so hard to find info on the referral process.

I assumed that now I’ve had the tests via my GP, even though the results are normal according to the nhs ranges, I would be referred to a specialist who could go through those results with me and look at any other tests that might be useful. Maybe I’m wrong and they have done all the tests they can offer, but if that’s the case, why did the GP tell me that once I had all my results, I could make the appt to be referred. I’m so confused.

@UncharteredWaters i’m pretty sure it’s 3 here too as when I spoke to the EPU (as I couldn’t find any details for the RCM at my local hospital), they said 3. The GP who I saw after my 3rd MC also told me I could get more help now as I’d had 3.

The Gynae dept at the hospital advised progesterone last time on the off chance it might help as they said even if it didn’t it wouldn’t cause any harm (although I wish they’d warned me it could cause a missed miscarriage as the experience was so much worse). They seem to be saying that if I get pregnant again, they will look at progesterone and aspirin, but again just on the ‘off chance’ it might help, not because test results suggest I need it.

I think they said Gynae have written back to say they wouldn’t do any more at this point because I’ve had the clotting checks but then I don’t understand who does get referred to RCM. Even being able to speak to someone who specialises in miscarriage would help as some of the GP’s I’ve spoken to have even admitted they don’t have a broad understanding of fertility.

@JC03745 sorry that you’ve been through this too. I did request genetic testing on my 3rd MC and am currently awaiting the results so hopefully they might be able to shed some light. It’s been just over 2 months but they said that the wait in our area is 12 weeks plus, so a little longer to wait.

I also bought ‘it starts with the egg’ a few weeks ago and am about to get round to reading so that I know we are doing as much as we can. I’ve heard lots of positive reviews.

@BananaSplitX thanks for the recommendation, I’m in Hampshire but not too far from London and am willing to travel for specialist help. I hope you don’t mind me asking but had you already had the main tests done on the NHS before they referred you? They seem to be telling me that the reason they won’t refer me is because I’ve had all the tests but I thought the whole point of being referred was to speak to a specialist who will have more suggestions if your previous tests have not shown anything concerning.

Sending all the luck to everyone going through this.

Just to answer your question. I had some tests done on the NHS after the 3rd miscarriage and they also had put me on progesterone and mini aspirin but that didn’t work. A friend of mine told me about Dr (actually Professor ) Nicolaides so I went to the clinic and they were amazing. They look at so many more areas than the core tests and they advised the hospital /GP on specific tests to do, so I wouldn’t have to pay for all of the investigations privately. They really were amazing. And successful so I had a healthy little boy after all the miscarriages. I hope they can help.

@BananaSplitX thank you so much, that’s really helpful. I’ve just googled Prof Nicolaides and am seeing lots of good things. I will definitely give the clinic a call for some advice.

@RainbowRoad123 I’m not entirely sure but I think if they refer you to a Tommys affiliated clinic it’s still NHS and therefore should be covered. No idea how long it will take though, it’s something I’ve only just asked my GP to do myself.
its so tough to go through this 3 times then have to fight to get yourself heard. I hope you get through to them soon and get that referral!
I wonder if Tommys have a helpline you could call to get extra help with the referral process?

@Lalalala77 I did call Tommy’s earlier and spoke to a really helpful lady who thought it was strange that I wasn’t being referred to either my local RCM or Tommy’s and within 30 mins she had emailed me a list of all the tests they would do at Tommy’s so that I could cross check them with the one’s I’d already had incase there was any that I hadn’t had so i could use that to push my GP for a referral. To be honest most of the tests on the list I have had but not all so it’s worth a try.
Thanks for your advice and wishing you luck with your journey.

@RainbowRoad123 would you be willing to share the list of tests that Tommy's gave to you please? I'm also battling with my gp it's incredibly frustrating, the last thing we all need after our losses x

@ElectricWatch I'm sorry you're going through this too.
Of course, the list of tests that Tommy's sent me are:

1. Lupus anticoagulant (for sticky blood conditions)
2. Anti-cardiolipin antibodies (for sticky blood conditions)
3. Thromboelastogram analysis (for global bleeding tendencies)
4. Pelvic ultrasound
5. Rubella test
6. TSH & T3/T4 test (for thyroid)
7. Vitamin D
8. Coeliac disease screen - TTG antibody test
9. HbA1C test - for diabetes

10. Fetal karotyping - to identify any structural or genetic problems of the foetus. 11. Parental karotyping - performed if the above test reveals any genetic issues, to identify any genetic abnormalities in either partner.

I hope this helps, I have had most of the above tests via my GP (apart from Rubella, T3/T4, Coeliac and parental karotyping), so hopefully they can do the same for you.

Good luck 😊

Just an update incase anyone in a similar situation is reading this...I made another appointment with a different GP and explained I was confused as to why I hadn't been referred. They were very understanding and did a 2nd referral to the recurrent miscarriage clinic in my local hospital. Within 4 days, I had a call from the hospital saying they had a cancellation appointment the next day. The consultant I saw looked into all my previous results and has booked some extra blood tests.
I think I was lucky with it being so quick but just wanted to say keep pushing if you feel you are being fobbed off and don't be afraid to ask for a second opinion from another GP.

I'm pleased you got through with a different GP!
I have learnt the hard with with previous problems that not all GPs are equal and stuck with a dismissive GP and then found a more helpful one later.

I'm 37 too and had 2 losses last year. I was under the epu for both and they were able to do a referral to the reoccurring miscarriage team after 2 losses as I'm over 35. I know not all hospitals have this policy but just wanted to raise it for others as you might be able to get referral in some areas over 35 after 2 losses instead of 3

@Superscientist yes that's a good point, when i did have my appointment this week, the consultant mentioned that they are busy as it has recently changed to 2 if you're over 35, so just proves that it's worth trying a different GP.
Good luck on your journey 😊

Can you pay to see a private specialist initially? Ive had a few issues with pregnancy (not exactly the same as you but similar) but found the NHS to be lacking in care/too slow/didn't refer me to the right people so ended up going to private clinics instead (thanks to credit cards!) for a few appointments to get me started and for reassurance.

Also definitely worth trying aspirin. I lost a baby at 18 weeks - I was found not to have any clotting issues but was recommended to take aspirin for any future pregnancies and now have 2 little boys. I can't prove it's what helped the pregnancies continue but it definitely didn't not help if that makes sense!

@RainbowRoad123 the leaflet from the epu quoted waits from 2 months to 2 years!
I was told that they wait 12 weeks after your last loss, necessary for some of the tests. I had my 2nd loss in December and my appointment is the end of march so not too much of a wait thankfully!

@Jajajagi we did book an initial private consultation with a recurrent miscarriage specialist when the nhs said I couldn't be referred, although the specialist was part of an ivf clinic and although I was clear when booking the appointment that we are not considering ivf at the mo, they spent most of the appointment telling us all of the different costs and how ivf works so I don't feel like we got much advice on the recurrent miscarriage side. That said, there have been some other specialists mentioned on this post who I would definitely look in to.
With the aspirin, when my GP said I couldn't be referred, I did ask about aspirin and they said I could take it from a positive test, but then at the recurrent miscarriage appointment this week the consultant said not to take it as it can affect inflammation which is needed to some degree and to wait until they scan me at 6 weeks. Although based on past experience 6 weeks is too late. I've heard lots of positive stories about aspirin and really tempted to give it a go. We are having a break from ttc for a couple of months as I feel like my body needs some time to get back on track, so hopefully by the time we do start trying again we will have more test results and can ask about the aspirin again.
Sorry to hear of your loss, glad that you had your 2 little boys though 💙

@Superscientist yes my GP did initially say it can be a 1-2 year wait which I was surprised at. I'm glad you don't have too much longer to wait and hope you can get some useful help and advice.
I find that I'm always hoping one of my test results will show something wrong so that at least we could treat it. The not knowing and conflicting advice from different professionals makes everything so confusing.
It helps hearing other people's experiences on here though.

@RainbowRoad123 it's hard. I had my daughter without any issues but the last two pregnancies didn't progress past 6 weeks gestation, losing the pregnancies around 10 weeks. In the last one I was being monitored by the epu. At 7.5 weeks I was measured at 6 weeks with a heartbeat. The repeat scan 2 weeks later showed a little growth but not consistent with 2 weeks gap and no heartbeat so I lost the pregnancy around 8 weeks. In my first loss my all day nausea stopped at 8 weeks so I think the same thing happened that time too.
I saw my psychiatrist this week (I'm bipolar) and am due to have my annual bloods done. She mentioned a couple of things that they will test for that might impact pregnancy so I'll check them when the results come in. There's a couple of things that would be higher on my list to check. Until April last year I was on a medication that can mess with thyroid function and my dad possibly has APS. He had the diagnosis for a number of years following a stroke but when they retested him years later he has no markers so he's no longer got the diagnosis.
I'm on a semi break at the moment as I'm going through redundancy process and having to reapply for my job. Most just not in the mood rather than actively stopping. I struggle in the first trimester with hyperemesis so I couldn't face that and stress at work.
There's a TTC after loss page on the conception board that's full of lovely people going through TTC after loss. There's a mix of TTC right now and those taking a break. I can dig out the link if you would like.