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 everyone- I know this is an old thread, but wondering if anyone can tell me anything more about their experiences with Dr Rai (more clotting focused) versus Dr Gorgy or Shehata (more immune focused?)

I’ve read that Rai does some clotting testing which is quite niche and isn’t typically included in standard clotting tests (I’ve already had the thrombophilia screen and Antiphospholipid syndrome screen)- is this true? I can’t work out if it’s worth seeing Raj as well.

honestly I feel quite overwhelmed by the fact that every specialist I see seems to have a different opinion. It’s a relief to know I’m not the only one in this position.

Hi All - I would also like to hear how you made the decision on where to go for the 1st time.
I'm on the same boat, 3 miscarriages and no test results so far.
I thought that at this point I would just have to choose a clinic but is much more complex than that :(
I feel I don't have the time to be running in circles....

@Pupsandturtles yes, Dr Rai looks mainly at thrombophilia whereas Dr Shehata (I don’t know much about Gorgy) looks mainly at immunes (NK Cells). They are both sceptical of each other’s approaches. I know it’s so overwhelming trying to work out who to consult.

Rai does a test called the Thromboelastagram (TEG) which is used to look at the level of clotting in your blood and prescribe the right level of blood thinners (Heparin/ Aspirin). If nothing came up on your thrombophilia screen you might not need this, though he might screen for a wider range of conditions. You could try emailing him to ask. If you can get through to him, he’s pretty helpful, he’s just not that responsive by email. His email address and tel number are on his website, and I can share the details of his PA if you like.

I think Dr Shehata is much more experimental when it comes to immunes, and prescribes much more in-depth and complex treatments. The other doctors I spoke too were very sceptical of his approach, though in the back of my mind I was willing to try it if I had further problems.

You could get the Chicago immunes test done first at a fertility clinic and see what profile of treatment is recommended first. All the evidence is pretty new/ limited but it seems that most people can be treated by steroids (and possibly Intralipids). If you’re in London then Amanda Tozer at Aria or Yau Thum at the Lister Clinic could do this.

Wishing you all the best.

Thanks so much @sweetpea2000 . I’ve actually had a bunch of testing done already (including immunes), now trying to work out what to do with the results- everyone seems to have different opinions! and I’ve spent loads of time down rabbit holes trying to interpret them myself- I think they’re quite concerning (my TNF ratio is high) but the specialist at the lister I've spoken to (not Dr Thum but works with them) told me not to worry too much, a bit of steroid should be fine. And I’m guessing Dr Rai will say the TNF doesn’t matter at all! I’d like to try intralipid as well, but I’m not sure how it works- whether you take it regularly, just on ovulation, or just after a positive test….

It’s such a minefield! Such a frustrating powerless feeling to not really know what’s going on and who to trust…

@Pupsandturtles if it helps I’ve seen Dr Rai at St Mary’s recurrent miscarriage clinic as they did all the standard testing for us but he wasn’t very useful beyond that so I wouldn’t waste your time. We then went to a fertility clinic and spent money on Chicago test and that all came back fine and it’s not until we’ve seen Professor Shehata we have now had all NK tells and TH1/TH2 testing done that we have a clear treatment plan and clarity. We don’t know whether it will work but at least we have some answers and a clear plan of what combination of medications we need. It’s not cheap and if you’re under the CRP clinic it is a longer term investment. With intralipids you have them pre ovulation and within a few days of positive pregnancy test and then every 2 weeks potentially. Hope that helps. All the best!

@Pupsandturtles it sounds like you’re really well informed and prepared. The report I got back from my immunes testing (Chicago test) rated the effectiveness of steroids, Intralipids and IVIG (as a %) in treating my personal profile of NK cells - did you get a report like that too?

I didn’t really go further in trying to understand it myself, as I just trusted my IVF consultant’s opinion at that point.

Raj Rai would definitely tell you that the theory of treating NK cells in this way is invalid, but I think he’s regarded as quite conservative in this respect (that’s what my husband’s andrologist said - we spoke to so many doctors!)

The risks of taking the steroids (under supervision) are minimal, so I’m not sure why it’s considered so controversial- probably because the threshold of evidence isn’t high enough to be funded on the NHS.

I remember that Amanda Tozer recommended Intralipids, before I actually had the Chicago test, and said I would have one infusion before embryo transfer and then monthly for 2-3 months after a positive test (from memory). On the Aria website she seems to recommend only two - one prior to conception and one soon after.

Hopefully someone else on here can help with more experience of Intralipids.

Hi!i have five years old son which we had with thr help of iui and I straight away get pregnant,no complications at all .After him we have tried icis and I had 5 failed icis cycles.Then they did pgt test last time which came back normal so they gave me some steroids for NK but today i got my period after three weeks of FET.Any success stories and recommendations for any good recurrent miscarriage dr??

Hi everyone, @sweetpea2000 @Sprinkleofbabydust can I get any update of your pregnancies and outcomes? I had 3 miscarriages, 2 of them were missed miscarriage which I had no idea until the scan. I really dont want to experience it again.
I book an appointment with Prof Regan, but I am still thinking of cancelling it and going for Raj Rai. Would there be any difference in between these 2 doctors or they are generally the same as they are following the same approach? Can I get tested for NK cells somewhere privately even if they dont test it in St Mary’s?
any information and your updates will be much appreciated.

Hi @Econi , so sorry to hear about your losses. I think I mentioned upthread but my sixth pregnancy was successful and I had a baby last year.

Prof Regan and Raj Rai are from the same clinic (St Mary’s) and I think you would get the same tests and treatment from either of them.

I think most private fertility clinics will test for NK Cells. I had my test at The Lister Clinic, where I was also undergoing IVF (with preimplantation genetic testing). However I think you could see them (or another IVF clinic) for the NK testing independently of IVF.

Wishing you all the best.

Hi @Econi I also did mine in Lister and paid £1100. They send them to St Helier and you only need to do them once. Other clinics do them multiple times and you pay £800 each time so they regulate your medications etc but I was not keen on spending that much hence went with Lister. However I must admit that abroad these tests cost like 75 Euro! Huge difference in price, not sure if you want to explore that option. Let me know if any questions. I had a successful pregnancy following a miscarriage by being on Clexane 400, Prednisolone 25mg and the white pessaries progesterone (I forgot the name of it). I tested positive for some trombophilia blood disorders for which I had the blood thinners and high NK cells for which I took the Prednisolone for the first few weeks of pregnancy. If I had further miscarriages, I think I would have gone to dr. Shehata but I heard mixed opinions of him.

@sweetpea2000 many thanks for all the information and quick response. How many IVF cycles you gone through? Was is just one and successful? Pre pandemic we tried 2 ivf cycles (my husband and I both carrier for some genetic disorder and we didnt want to risk it) in both there were no healthy embryos, then pandemic hit our 3rd cycle cancelled, then we just tried our luck naturally. From the first month I was pregnant and we had a healthy baby (she is now 3) I guess we were so lucky at the time, last 1.5 year we have been trying and we cant even come to the point that we can get the CVS and genetic testing done as I miscarrying before that point! It would he great to hear your IVF story in Lister as I didn’t have a great experience (I was going to CRGH at the time)

@K8dferXdder thank you for your reply and all the information. Can I ask which Dr were you under when you had a healthy pregnancy? And would you recommend? Or was it just you were in Lister without any other clinician elsewhere? Many thanks.

Hi @Econi Lister agreed to give me 25mg Prednisolone after the Immunology tests. I wanted intralipids as well but they refused and said no need. I was under their director Dr. Nicopolous and he is great however he consults with his immunologyst for the tratment of it.
I visited dr Regan before privately and based on the blood results from abroad, she gave me Clexane 40mg. she will not test immunology as their practice don’t believe in it. I see the immunology treatment as no harm doing it but probably made the difference for me too, who knows.
I had the prescriptions and the medicines from failed IVF cycle and when I got pregnant naturally, I used the remaining medicines and requested more from my GP. Good luck.

@Econi I did a few cycles as I wanted to batch and freeze embryos in case I had further losses with euploid embryos, and needed to try more experimental treatment protocols.
I did have a successful pregnancy from my first transfer though. I had a brilliant experience at The Lister - I really can’t fault them at all.
I thought IVF would be stressful but I found it less stressful than my journey with natural conceptions and miscarriages. For example, I had spotting in the early days and they carried out a quantitative HCG test to check the levels were rising. Also I felt my symptoms lessened around 9 weeks and they saw me the same day for a reassurance scan. This really helped me, as two of my miscarriages had been missed miscarriages too, so my anxiety was very high.