Recurrent miscarriage recommendations

[Superstorefan123]

I am currently going through my third miscarriage and trying to be proactive to block out some of the pain.

I know I am eligible for NHS referrals now but worry it will take a long time - does anyone have any recommendations for private recurrent miscarriage specialists? I am probably going to move to IVF (lots of fertility issues mixed in with the miscarriages so feels like it might be the right call) - any clinics who do recurrent miscarriage tests alongside IVF?

I have already had lots of scans, basic bloods and a HSG which looks good - what other tests are needed?

Sorry so many questions but I’m feeling desperate and sad :(

I was referred for testing but nothing showed up. I waited over three months for initial appointment. I've been for fertility testing (privately) too for FSH and amh.

I’m so sorry you’re going through this. There’s an online fertility community called Hoopsy which has lots of fertility specialists on it, it might be worth joining and posting on there to ask? I’m sure someone will be able to guide you to the right place.

I’ve gone through two rounds of IVF - I had one early MC 4 and a half years ago and nothing since. Happy to chat !

I am so sorry for your losses. I am currently investigating immune related issues for infertility and miscarriage. I have just had a consultation with the Lister in London who’ve been very helpful. However I went there as I wanted to see a specific immune doctor. His name is Dr Thum and he ran through a host of reasons for recurrent miscarriage in our initial consultation.

Hi @Superstorefan123 I’m really sorry about what you’re going through.
I also unfortunately have experienced recurrent miscarriage (4 in a row) and have experience of getting support both through the NHS and a private clinic. Happy to share information on anything I know on what aspects they’re likely to investigate and what support and treatment they may be able to offer. Feel free to dm me if you’d like x

@Superstorefan123 - I am sorry. That sounds brutal. I can't help, but I'm in a similar situation (going through another miscarriage right now) so would be interested to hear how you decide to take this forward.

I also have fertility issues (which are known and can be somewhat helped with medication) and when I finally do conceive, I can't keep it (not sure why). I mentally can't cope with this anymore, so just want to try and do something concrete to help.

Immune issues can often be the reason for recurrent mcs. There are lots of threads on here with recommendations for clinics and specialists that test. Look for NK cell threads.
Gp can do initial bloods to rule out things like thyroid issues. Go there to do full bloods.
Youll probably need to go private for other tests or your Gp can do a referral for the nhs recurrent miscarriage clinic but the wait can be long. I just went private and tested everything like clotting issues. There is a list of tests, sorry I don’t have them anymore.
it’s also worth having scans to check womb after dcs to ensure no scarring or other issues.

I'm sorry to hear about your losses and know the pain you're currently going through. I too suffered 3 miscarriages last year (all around 5/6 weeks) despite having no issues with my daughter born 2020.
After my second miscarriage I was told by my EPU that if I fall again, I was eligible for progesterone which helps strengthen the uterus. So, 3 months later I got my BFP and called the EPU. When I went in to collect it at 4+5 they could not see the pregnancy on a scan as it was too early so asked me to come back the following week. Unfortunately I lost it 3 days later. They told me to go to my GP for a referral to a fertility clinic. My GP made the referral in September 2022. 3 weeks later I called the clinic who advised me realistically I was looking at an apt in March.
I couldn't face the wait, so, like you, I researched online and put a post on mumsnet which I found really helpful. I was told about a charity called Tommys who deal with recurrent miscarriages. Based London, Coventry and Birmingham. www.tommys.org
I asked my GP to refer me and he did (you can be referred out of area as it is a charity). 2 weeks later I was sent a link to book a telephone apt online. I booked the earliest apt which was for 3 weeks time. The Dr called and asked me to go in the following week. She ran a series of bloods to rule out a number of things and also gave me a prescription for progesterone to collect and start taking as soon as I got another BFP.
Last week I got my BFP and have been on Progesterone since. I am only 4 weeks so early days, but I honestly feel so reassured that my body has the support of the progesterone. And to top it off, I received a letter from the original NHS fertility clinic made in September 2022 to say I had an apt in July 2023!! ...not worth the wait if you don't have to!
I hope you find this as helpful as I did xx

Sorry you're in this position, it's not an easy journey.

I would definitely recommend going private if possible, you'll get much quicker access to far more investigations.

Immune issues (specifically the exact role natural killer cells) are still somewhat controversial and some specialists won't really look at this angle. I'd recommend seeing a specialist who will investigate immune issues along with everything else. Like @Ems123456789 I had a great experience with Yau Thum at the Lister but you'll find recommendations all over mumsnet for Hassan Shehata, Siobhan Quenby and Amin Gorgy.

Have an initial consultation with the private specialist and they can write to your GP recommending standard tests and you should be able to get most of these done via the NHS. The 2nd line private tests (I.e testing for natural killer cells and TH1/2 cells) are where it gets more expensive. If nothing comes up initially don't overlook testing for sperm DNA fragmentation levels as research is showing that it plays a much greater role than previously though in miscarriages. Best of luck

@Tweetingbirds What treatment did you do with Dr Thum? I would be keen to hear.

@Sunshine00x I am glad that with Tommys help you managed to get to a prescription for progesterone. How are you getting on? I really hope all is going okay.
I too am low in that. It’s interesting because I was prescribed it during my ivf cycles but my clinic didn’t ever check my levels on day of transfer and when I recently got a 2nd opinion with Dr Thum at the Lister he advised that he always checks it for embryo transfer even if a patient is already on a high dose.

@Ems123456789 I had high levels of natural killer cells and TH1 cells so I was on 25mg predisnolone per day for the first trimester along with 2x daily progesterone suppositories and I also had 3 intralipid infusions, one every 4 weeks in the first trimester. I'm currently 38 weeks pregnant so something seems to have worked! It was a natural conception so the plan might have been slightly different.

Hi
I am currently going through my 4th mc :( I would also appreciate any info anyone can provide.
im so sorry for your losses op and everyone else who has experienced the same. It’s just awful 😞

Thank you @Tweetingbirds for the info.

@Lottie2267 so sorry to hear this. Have you had or are you planning to have any investigations?

Thank you @Ems123456789 ❤️ I have had the standard blood tests with my GP (thyroid, vitamin d) which I had done after my last one but nothing else. I just feel like I’ve been passed around different people and nobody actually wants to help. Yes, I am hoping to get some further testing done but I’m feeling overwhelmed with how many things it could be. Sometimes I wonder is it as simple as I have low progesterone but it could be anything couldn’t it. I don’t really know where to start with it all and makes me want to give up. Which tests have you had?

@Lottie2267 has your gp tested your progesterone?

it can be overwhelming. I’m currently going down the immune system route as that has revealed some issues. But I’ve also been told I could get a variety of other tests on things like vaginal microbiome, the ideal transfer window and uterus pathology. I find it all a bit overwhelming so have decided to just stick to the immune stuff for now and see if that works for our next transfer.

we have been trying natural since December when I had my last miscarriage but no luck. I’ve never had a natural pregnancy. However I too know my progesterone levels are fairly low and during ivf they supplement you with it. But no one’s ever talked to me about doing this for my natural cycles!

Hey , sorry for your pain and losses , I am in the same boat , I have had 7 early losses and still not pregnant at the moment , all my bloods came back perfect including the genetic testing so I had nothing else to check . Only thing that made sense to check out was the womb with hysteroscopy , which ofcourse showed polyps . Embryo cannot survive there as there are polyps and it causes inflammation in side the uterus. So now I just had it all removed and onto ivf now . I strongly suggest you to have hysteroscopy as normal scan doesn’t often show polyps . I had normal scan and they said there is nothing wrong but I thought I wanted to make sure 100% and booked private hysteroscopy and then they found the polyps and the issues that possibly is the cause for my losses . Good luck !

@Superstorefan123 I'm sorry for your losses.

there's a Facebook group you could join called UK Reproductive Immunology Support if you have specific questions. Most people on there seem to be with Gorgy.

I went to Mr Shehata at CRP in Epsom. They were excellent and once I did get pregnant it was great to be somewhere that didn't fob you off but was specifically looking for problems. I did that alongside IVF at CRGH who do some immune stuff but not much. CRP also do some IVF there I think linked to Kings. I'll admit the location wasn't great and it took a lot of travelling.

Gorgy is central London so easier to pair up with another clinic.

ARGC do extensive immune treatment alongside IVF.

Many of the other clinics do a more limited range of treatments (I think) although the immunology stuff is so disputed that it's hard to know what and how much to try. I can never really know but I think the Humira made the difference for me. I was also taking prednisolone and doing intralipids alongside progesterone but that is standard for IVF anyway.

Wishing you lots of luck with it all x

If you're not near London it gets harder to find people.

I hope things work out for you.

@Janefx40 I too have had several failed transfers and miscarriages I am looking at immune testing for the 1st time . After8 rounds we are financially strained but also would do anything to sooth the pain of this journey.
is it worth going ArGc? I work right next to it so the intense testing should work fine for me… do you know approximate cost, with or without IVF. Thank you