London Recurrent Miscarriage Clinic

[2725London]

Hello, I’ve had three miscarriages and I’m feeling really down. Things are moving too slowly on the NHS and my 35th birthday is fast approaching so want to go private to get tests done. Any recommendations for London clinics?

Hi, I'm also looking into this so I don't have any recommendations but from what I understand the leading clinic in London is St Mary's, lead by Prof Lesley Regan and Dr Raj Rai. It's NHS but you can pay to go privately.

Then there is Dr Shehata, who runs a private clinic at the CRP in Epsom, but they have quite different approaches. St Mary's is more conservative whereas CRP take a more experimental immunological approach. But he has lots of success stories on here.

Hi @sweetpea2000 I’m so sorry that you’re looking into this as well. It’s a club I never wanted to join

Those three names come up time and time again so I think they are my next port of call.

Good luck x

Hi there,

I'm so sorry you're going through this. I'm approaching 35 too and have had five early losses, so I feel your pain.

I have seen Raj Rai at St Mary's - he did lots of tests and found various blood clotting and autoimmune issues. However, we treated them all before my latest round of IVF and I still had a miscarriage. He is now recommending that I have a hysteroscopy, but hasn't said we should change anything else - I think he's quite conservative. I am considering going to see Mr Shehata who is a bit more experimental, as @sweetpea2000 said, but he specialises in immune issues which I think is my problem.

Other options I've heard about are Dr Gorgy and Siobhan Quenby in Coventry. Wishing you lots of luck x

@2725London it really is the club no-one wants to find themselves in. We have to remind ourselves that most people who keep trying and seek answers do get a happy ending eventually. It's just so hard that to feel the responsibility is ours to educate ourselves and to advocate (and pay) for the right tests and treatment when it is all so complex to understand and so emotional to deal with.

@WishingWaiting, so sorry as well to hear about your experiences of loss. I think it's the worst thing I've ever had to cope with.

Can I ask a little more about your experience with Raj Rai? How long did you have to wait to see him, which tests did he recommend? Would you be comfortable sharing approximate costs?

So sorry to hear you had another loss on his treatment. Were you able to have this one tested to see if it was a chromosomally normal? From what I have read in Lesley Regan's book (Miscarriage: what every woman needs to know) it's really important to test each loss wherever possible, as if it was a chromosomal problem, the treatment could not have prevented the loss anyway, so it should be tried again. Whereas if it was chromosomally normal, the treatment probably needs adjusting. You probably already know this, so apologies if I am stating the obvious. I am only beginning to get my head around it all.

I also read 'Is your body baby friendly' by Alan Beer, which is more about the immunological route that Dr Shehata practices. What's confusing is that Lesley Regan, open discredits this approach in her book. She is the leading authority on miscarriage within the NHS and says the immunological approach is unproven and exploiting vulnerable women with ineffective treatments they don't need.

Alan Beer and Dr Shehata say instead that the NHS mainstream route (which Lesley Regan and Raj Rai are leaders of) is outdated, conservative and failing to look at new evidence because it doesn't meet their traditional standards of clinical rigour (randomised, double blind trials with large sample sizes). But there are many success stories from Dr Shehata on here.

From what I've read, Professor Quenby in Coventry also looks at the immunological route (NK cells) but is more conservative than Dr Shehata and is very research focussed, so trying to recruit women into clinical trials that take 2 years.

I am thinking of starting another thread asking specifically about people's experiences of Raj Rai vs Dr Shehata as that's the decision I'm trying to make next.

It would be great to keep sharing on here as we each learn more.

@sweetpea2000 it really is the worst thing that I've ever had to go through - I'm so sorry you're struggling too. Do you mind me asking what your experience has been?

I'm more than happy to share my experience of Raj Rai. He's a little odd but he's nice. You can get a private appointment with him within a couple of weeks, I don't know how long it would take on the NHS (particularly now). The initial consultation is £300, and each follow up is £225 - so not cheap at all, but probably normal for private healthcare. After the first consultation, he sent me for a whole load of blood tests, and tested my husband for a few things as well. They were mainly for autoimmune issues, blood clotting disorders and genetic mutations. The blood tests cost around £1000 in total, which was a LOT but also money well spent as they revealed a few issues. He also recommended that I have a hysteroscopy after I first saw him, to check for chronic endometritis (not endometriosis) and uterine defects. We decided not to do that because of the cost (or NHS wait) - but we will now be doing it as soon as the clinic reopens - I think they've been requisitioned by the NHS while they deal with the current Covid spike.

Sadly I always use my pregnancies too early to test the embryos - all my losses have been before six weeks. However, we've been doing IVF (for an issue unrelated to the miscarriages), and the embryo we transferred in December had been tested and was chromosomally normal.

I've read 'Is your body baby friendly' as well, I thought it was great. I agree that the different approaches are really confusing and it's so difficult to know who to 'believe' and which route to pursue.

I'd love it if we continued to share what we learn, it's great to feel that you're not alone.

x

Hi @WishingWaiting. So I had a missed miscarriage in May, which was diagnosed at my 12 week scan. I had never heard of a missed miscarriage, so when I made it to 12 weeks without any signs of loss I was pretty sure all was well. At the scan I found out the pregnancy had stopped developing at 8 weeks. I found that really hard to cope with but everyone (the hospital, my GP and everything I read online) assured me that statistically it was very unlikely to happen again.

I then got pregnant again and found out at an early scan (8 weeks) that the pregnancy had stopped developing around 6 weeks.

I'm now in the limbo of waiting for my HCG levels to fall so I can begin trying again. But I'm really keen to get some tests done in the meantime.

I think I naively thought that medicine - and the NHS - have an answer for everything and would have a clear plan for fixing this, but instead it's all so confusing. Once you begin private treatment it's hard to know when to stop or change as well, so I want to make the most informed choice I can.

@WishingWaiting also, I was a little sceptical of Is Your Body Baby Friendly. I felt it used a lot of emotive quotes and miracle case studies which felt a little manipulative in places. It seemed like a hard-sell, whereas Lesley Regan's book was gently empathetic but mostly stuck to the facts.

I just don't have the clinical skills (obviously!) to differentiate between the science of the two approaches. They both seem adamant on their view points, which each make sense, the way they explain them. Yet they disagree on so much. How are we supposed to discern which is more valid?

It's so hard when you are willing to do whatever it takes, but you don't know where to put your trust.

Alan Beer points out that the NHS only diagnose a cause in 50% of recurrent miscarriage investigations, and says it is not acceptable to just write the other half off as unexplained. He believes most of these people have immunological issues (which is Dr Shetata's approach, as I understand it).

However Lesley Regan says many of these immunological treatments have no clinical validity, and suspects that most of the success stories are just women who would eventually have had a successful pregnancy anyway. Her view is more to keep on trying and play the numbers game.

On Dr Shehata's website (CRP) it says only 3-5% of miscarriages are caused by anatomical issues, 6% from blood disorders, 20% from hormonal causes and 60% from immunological disorders. I don't know where these numbers are from, but the NHS seems to focus mainly on anatomical, blood and hormonal disorders. Which would of course give an incomplete picture, if Dr Shehata's data is correct.

It's interesting that you say Raj Rai has identified immunological issues in your case though, so he (and the school of thought at St Mary's) are not against this completely.

It seems to be the theory around NK cells that is controversial. From what I've read on here, almost everyone who consults Dr Shehata is told they have a problem with their NK cells, and then put on quite an elaborate treatment protocol, for each cycle, from ovulation - not just upon conception. So you can imagine this can quickly become a very draining and expensive treadmill of treatment that is hard to get off.

I think I will try Raj Rai first and hope he identifies - or eliminates - some of the basics first.

@sweetpea2000 you articulate so well my anxieties and doubts about which route to take. I find it extraordinary that respected, well-qualified doctors can have such diametrically opposed views on an issue.

It's definitely NK cells which are controversial - I believe that issues around autoimmunity and miscarriage are quite well established and much less controversial. Raj Rai gave convincing arguments for why NK cells aren't a 'thing' (I'm afraid I can't really remember them), but then I read articles by Shehata and am totally convinced by him too. I will read Lesley Regan's book, I think I need some convincing that I'm on the right path!

It sounds like a good plan to go to Mr Rai first and see what comes up. Let me know if you'd like me to DM you his and his assistant's email address.

Sorry @sweetpea2000 just seen that you posted twice. It must have been so hard to go through missed miscarriages, I can't imagine the anxiety that they must cause for subsequent pregnancies. Really hope that Mr Rai can find some answers for you x

@WishingWaiting thank you. It would be great if you could msg me those details.

Hello all, thinking of booking an appointment with Lesley Regan and was wondering how you progressed since then? Hope you had luck 🍀 The information you shared is very useful, thank you for posting!

I was treated by Lesley Regan and it was fine. Very methodical and scientific process (which I wanted). She recommends buying her book so I’d do that first anyway…..and all the checks came to about 2k. They didn’t find anything though.
Her book is good in that it has a few dos and donts that might be of help.

Anyone any updates please? Especially if you’ve seen Mr Rai as I am currently considering to go with him but after 3 losses I just want to make sure it’s not happening again so wondering if the safest approach is to see both Mr Rai and Mr Shehata.
Thx

Hi @Carminai , I consulted Raj Rai. He diagnosed me with a thrombophilia condition and prescribed aspirin and injectable blood thinners (Heparin).

He also recommended testing my husband for DNA fragmentation, which he was found to have, and isn’t picked up in the basic semen analysis. I’d recommend getting that done too, if you want to check for everything.

On the basis of my husband’s DNA fragmentation Raj Rai recommended we pursue IVF/ICSI with pre implantation testing.

My IVF clinic then tested me for NK Cells, which I was found to have elevated levels of, and I was also prescribed steroids (prednisolone) in my latest pregnancy, which was successful.

Drs Rai and Shehata have very different approaches so you could see both but would need to ensure the protocols they prescribe are compatible.

There are other doctors who will look at both thrombophilia and immunes like Amanda Tozer at Aria and Yau Thum at the Lister and this might be more straightforward.

Hope this helps.

Thank you for coming back to me, may I ask which IVF clinic did you go with? I am glad it worked well for you.
Thanks

@Carminai I went with the Lister and would strongly recommend them. Feel free to ask me anything more that’s helpful.

Hi @sweetpea2000 just read some of your posts and wanted to ask were you prescribed prednisolone on falling pregnant or once you were pregnant please? For your raised NK Cells did you have any other treatment. Just intrigued. I’ve had my TH1/TH2 tested but not NK cells. History is 4 miscarriages. We were referred to recurrent miscarriage clinic at St Mary’s and all tests came back fine. We saw Dr Raj Rai who suggested we had DNA frag test done for my husband and started taking Coq10 ubiquinol which we did. Didn’t have the DNA frag test done because our consultant at clinic said we would need ICSI IVF anyway so kind of no point in paying for the test. Anyway fallen naturally pregnant which is a shock as we haven’t last few years only after a laparoscopy. We were due to start IVF next month. Praying all works out but the consultant has prescribed prednisolone, clexane injections, hydroxychloroquine and cyclogest. What other medication were you on? I guess I don’t know if I have NK cells but I’d asked I’m given the medication anyway in case I do.
thank you in advance!

Hi @Sprinkleofbabydust - I took Prednisolone from 10 days pre embryo transfer, until 12 weeks.

I also took Cyclogest until 12 weeks, and Clexane until 24 weeks. I also took aspirin from 8 weeks but this was for a clotting disorder that came up in Raj Rai’s tests, so sounds like it wouldn’t be relevant for you.

It’s really great that you’ve got this all prescribed to support your naturally conceived pregnancy.

I had the Chicago blood test for NK Cells. As part of the results it estimates the % effectiveness of Steroids, Intralipids and IVIG in treating you, according to your specific profile. I have no idea how accurate this is, but the results basically said I would respond well to steroids and didn’t recommend Intralipids or IVIG for me. My consultant also said he thinks Steroids are the most effective for most people (though I know opinions vary on NK Cells so much).

It must have been such a shock to get pregnant just before your IVF cycle, and I know pregnancy after recurrent loss is a real mix of emotions. Wishing you all the best with your pregnancy.

Ah thank you so much @sweetpea2000 Yeah because we were about to start a treatment plan for IVF the consultant at our clinic had said if we did fall pregnant to let him know straight away and he would prescribe any meds. We absolutely never expected to and didn’t even try!
I had said to my consultant that even with the IVF would he start me on meds pre conception and I’d said what meds I’d want and he’d agreed so he is great in terms of flexibility and listening to us. He didn’t seem to think NK cells was worth doing and i was going to try and get them tested elsewhere if I could but found out we’re pregnant.

Obviously I’ve done loads of research so was keen to have a say in my treatment plan and I know steroids would be my best bet if I do have raised NK levels anyway.
thank you that’s useful to know you started pre embryo transfer. Fingers crossed it works for us this time as it’s so hard each time to know what to do next. Also so expensive privately and nhs from my experience are useless and there’s no clear structure in place and we tend to be more knowledgable than the GPs.
did you pay for all medication privately then? Or did you manage to get your GP to prescribe? It’s just cost £210 for one month 🙈 of course we will just pay but I know some say their doctor has prescribed.
really appreciate you taking the time to reply :) and hope all is well with you and the baby! Gives me so much hope!

You’re welcome. Well done on doing all the research and advocating for yourself - I know how overwhelming it can be.

That’s great that your consultant is so cooperative re NK Cells and steroids.

My GP was willing to prescribe anything from her register of medication, as long as I had a letter of recommendation from my consultant(s). She could prescribe Clexane, but not Cyclogest (as Cyclogest wasn’t on the register).

I don’t think I actually asked her to prescribe Prednisolone - I just got this from my clinic. I think she would have been able to prescribe it, as it’s used for lots of autoimmune conditions, not just fertility. I don’t think Prednisolone was very expensive though.

Hi all, i got Cyclogest, Prednisolone and Clexane through my GP after giving them letter from the private clinic and prescription. Just for your info … all the best!

Thank you @sweetpea2000@K8dferXdder thats great to know. Yeah I think it’s the cyclogest that’s expensive as I remember I paid privately for that earlier this year and it was a lot.

Could I also just quickly check did you still get pregnancy symptoms or did the steroids mask them? I’ve heard they can so just want to be prepared before I start worrying!

@Sprinkleofbabydust I had normal pregnancy symptoms. The steroids just gave me some insomnia (waking early in the morning) and made me feel a bit giddy & lightheaded sometimes.

@sweetpea2000 ok thank you that’s good to know yes I’ve been waking at 4am since started taking them 🙈 so insomnia has already kicked in!

I had insomnia too and from week 6 to 16 i had proper pregnancy symptoms with nausea etc.. but everyone is obviously individual