No answers to why I miscarry.

You don’t need to do the NK test , just ask your dr to put you on hydroxy chloroquine and prednisolon , aspirin & fragmin to prevent NK attack on your next embryo transfer regardless of the test . There is no harm to take those meds even if there is no benefit !

That’s great to know. Thank you. That would save on the cost of testing and I’d just pay for the medication instead.

Also Those medication doesn’t cost much , they just prevent activation of NK without you knowing if you have an issue or not

Do you know if they would need to be taken for the whole of a pregnancy?

For the first 8-12 weeks , until pregnancy hormones override NK

Thank you. I have emailed my fertility clinic to request an appointment with my consultant so that this can be discussed in my next FET plan. I really appreciate your help.

You welcome 😉good luck

I had 6 miscarriages from 6 IVF transfers, similar to you most of my NHS testing came back completely normal (except one blood result to do with my thyroid). We decided to go for private testing and had NK cell bloods and EMMA and ALICE biopsies done. My NK cell bloods came back elevated and I had an intensive personalised treatment plan made based on the results, I’m currently now 17 weeks pregnant with our 7th IVF transfer!
Also your NHS recurrent miscarriage clinic shouldn’t be discharging you just because you’ve had all of their testing done! Have they not said that they will genetically test any future losses you’ll have and offer you scans in future pregnancies from 5/6 weeks? I’ve stayed under my NHS consultant throughout and she is now my obstetrician in this pregnancy x

Also to add, it’s highly unlikely in the U.K. they’d just prescribe you any treatment for NK cells without doing the testing first as it is not backed by the NHS or most IVF clinics. There are only a couple of places that test and treat for it. I ended up under 3 separate consultants to have a full treatment plan and both my NHS consultant and IVF clinic were hugely against the testing and treatment x

Hi Jade, thank you for this. Where about in the UK are you? Where the 3 consultants close to you or did you travel. I’ve only found 1 place locally that does the testing. That must have been so hard, not having the support of your NHS consultant and your clinic.x

Our IVF clinic and NHS recurrent miscarriage consultant were local to us so our IVF transfers and then eventual pregnancy care has all been local within 30 minutes. All of our private miscarriage investigations and treatment has taken place in London which is around 2.5/3 hours away. We had no local options for this and tbh I’m not sure there really is much outside of London. It was massively frustrating but we just had to go with our gut instinct that this was right for us and we told our IVF clinic that although they didn’t agree they needed to support us or we would be moving our embryos to London. In terms of our NHS treatment we have just utilised them for genetic testing post loss and then pregnancy care which has been outstanding so far so we can’t complain too much there x

I feel like London is the place to get the best testing and support, especially when paying privately.
I’m so glad that your pregnancy care has been outstanding on the NHS and congratulations. Wishing you all the best with this pregnancy.
If you don’t mind me asking, what has been done/ prescribed differently to support this pregnancy? Xx

We spent a lot of time doing research and we were either going with London or abroad! We can never thank the clinic we chose enough, it’s the first time we felt listened to and that our opinions and thoughts were validated. I’ll post my protocol and notes below, but bear in mind this was extremely specific to me and my history, investigations and blood results x

Wow! This protocol involves so much and looks so thorough.
That’s amazing that your clinic were so good and listened to you. That’s where I’m struggling at the moment, I don’t feel heard by my GP, fertility clinic or the Tommy’s clinic.
I’m desperate for someone to hear me and help me. Xx

Yeah it was very full on and literally became my life! It took us a lot of research and a fair bit of money to get to the point someone would listen but we instantly clicked with our private consultant and she was just amazing! All of this was done by her, our IVF clinic literally just did the transfer as they didn’t agree with most of this but we told them it was non negotiable for us. My GP was absolutely useless! I was referred to Tommy’s but they couldn’t offer me anything I hadn’t already paid privately for. Id definitely recommend looking into some clinics in London and having initial consultations with them, I found it really useful to write out my own medical notes so I could send it to the clinics before the appointments. This meant they’d already read them and we didn’t waste most of the appointment just going through what had happened, we could actually get on with looking at options for investigations and treatment plans x

This advice is invaluable. Thank you. Also speaking to someone who understands makes a huge difference.
I better get researching and looking into clinics in London.xx

So sorry for ur losses hun. Have u looked into immunology testing?the only reason I ask is because I had 3 losses within 11 months, 2 being missed miscarriages after seeing healthy heartbeats and had no answers from nhs or rmc. I had nk cell biopsy which gave me all the answers that I need. Doctors do NOT prescribe these meds & it IS harmful to take if u haven't actually got diagnosed. We saved up for months for this, because if ubhave steroids for high nk cells when really it's low nk cells u can be jeopardising ur chances!! Sending love and strength, please be kind to yourself x

I had my nk cells biopsy in coventry, which is signifantly cheaper then London prices.

Hi Annie, what’s the clinic in Coventry called please?

@Claire coventry implantation clinic Dr Jan brosens. I can send u a leaflet on what it consists off etc and their details if you'd like,?

thanks Annie, just had a look online. I have a recurrent miscarriage consultation booked in March with Birmingham women’s hospital so I’ll see if they’re going to offer any testing that I haven’t already had done, if nothing comes of it I’ll get in touch with the Coventry clinic x

@Claire ok hun, Birmingham women's ar3 good but they don't do immunology testing. Best of luck you get answers from there x

I’m so sorry for your losses lovely.
Thank you so much for your message. I don’t know how I missed seeing it.
My fertility clinic has said if I have the testing and something shows, they would not follow the protocol. The most they would do is to offer steroids for a few weeks.
I had looked into the testing in Coventry a few months back. We are still unsure of what to do going forward now. Xx

Hi, I've just found this post from searching a similar topic and wondered if you had an update on what you decided to do? So sorry that you went through this. I am currently debating similar issues. After 5 years ttc our most recent 2 embryo transfers implanted but resulted in MMC diagnosed at 8 weeks. As we have additional fertility issues, the EPAC decided refer us recurrent miscarriage tests after the 2. We can have blood tests done to check thyroid, haemoglobin and antiphospholipids at the GP in 6 weeks which is great but I just got the referral letter from gynaecology department saying we had been accepted but there is at least a 6 month wait for first appointment. We have self-funded the last 2 rounds of IVF and have 1 more frozen embryo so would really like to know if there is a reason for the miscarriages before using the final one but also don't want to have to wait such a long time when there is a 50% chance they won't find a reason for why it's happened anyway!

Our clinic don't do PGT testing on embryos so the other option is if we want to do another full round and get more embryos and test them, we would need to do it another clinic which is further away and more expensive. It's been such a journey already and just don't know what the best thing is to do! Really appreciate any advice, thank you.

@Sasha 6 months is pretty average time length tbh with you as frustrating as it is. I highly recommend immunology testing, this gave me answers. Also ask for a 3d scan as this showed uterine abnormalities for me, with an expert in the field. I've had several in the past and they never picked up on it, such a huge cause for my losses mixed with the immune and gyno issues. Its all trial and error unfortunately in the world of unexplained infertility/losses. Sending strength