If you were to have extra tests done (i.e NK cell testing, which the NHS doesn't do) whilst technically under NHS funded IVF treatment (though you were on a break from that after yet another recurrant miscarriage), would that be okay? It wouldn't mean you'd potentially lose your funding? I don't know the rules and don't want to fuck anything up!!
Thanks 
Hey Esb. So sorry you’re having a hard time… I feel you 😘 I’m interested to hear anyone else’s stories with this. Hope you find some answers xxx
Thanks Rainbowretrieval😘 Fingers crossed someone has some answers / experiences with this xxx
Hi, I don’t have a conclusive answer to your question but I cant imagine doing the tests would affect the funding.
What I wanted to say is, that I had my NK blood tests via the nhs. I was recommended by my nhs clinic to the recurrent miscarriage unit to have them done.
Oh really?? You were? I always thought the NHS didn’t do that? I swear I asked my clinic and they said they didn’t do it, but I’d rather as my consultant about it as he seems more in the know (plus they aren’t a recurrent miscarriage clinic so that makes sense).
I didn’t think Tommy’s offers it either (though I’m not too sure so maybe it does!).
My only other concern using the NHS (whilst it is fucking amazing!!!!) is wait times. Since my consultant agreed we would do exploratory lap/hysteroscopy surgery to the date of my follow up which is coming up in June it’s going to be 5 months. I know in the grand scheme of waiting that’s not that bad but when you’ve been on an unsuccessful fertility journey for 4 years already waiting like this has been torture (plus it took us 9 months to even get to doing one IVF transfer last year, not due to the NHS but because my body kept rejecting treatments etc, so I feel like I’ve already waited enough to be essentially in the exact same position I was pre IVF with no answers to my miscarriages. It’s so hard 😞)
Did you have to wait long for the NK cell testing with the recurrent miscarriage clinic? I was going to call my GP to start the Tommy’s referral on Tuesday but I was also considering private testing to see if that can shed some light before we did another IVF transfer.
If I remember correctly, my ivf clinic (which is nhs) did the first full blood test which confirmed I had high Nk cell. They referred me to the recurrent miscarriage unit. That was in the end of oct, Jan I had a phone consultation and march when I got my full bloods done again with them to confirm.
But I think it can be quicker now. As far as I know Tommys do the NK testing also. I’ve only done blood tests, not biopsy.
I totally sympathise with the time issue …I’m similar to you. 4 years 🙄 my Laporoscopy was meant to be last month and was cancelled due to strikes also. Hopefully going ahead end of May, was meant to be feb 🙄 the year is nearly gone 🤬🫢
So sorry you’re going through all this. I agree with what Rol81 said and see if you can be referred to the recurrent miscarriage clinic via the NHS.
If you went private for testing, I can’t see why that would affect your NHS funding tbh.
Good luck. X
Hi! We were NHS funded and were told by our clinic that the NHS had to approve any additional tests or treatments, which would be quite difficult in practice (depending on individual circumstances, of course) and would take time. This is because very few of these add ons are on the HFEA list of approved tests and treatments. Worth having a look at the list though or asking your clinic.
Oh that’s really interesting! Thanks for sharing Eloqentia!! It’s only frustrating as I’m not seeing my consultant until June so won’t be able to ask until then. I know you can do Tommy’s testing at the same time as NHS funded treatment as I’ve asked that question on here before and people have come back to say they did it, but the paid for private testing I might have to wait until June to look into by the sounds of it!
You can refer yourself to the Warwick (Tommy's) clinic here warwick.ac.uk/fac/sci/med/r... rang up, had an appointment within about 3-4 weeks, biopsy in my next menstrual cycle and results within 2 weeks. They do NK testing and others to check the robustness of the womb lining and timing (similar to ERA). It was about £900 I think all in, and I ended up being given medication to improve my womb lining to reduce risk of miscarriage. Feel free to PM me xxx
hello, I just came across your message and wanted to sayI had also been giving some medication to improve the robustness of my lining , im on my second cycle of taking it. I couldn’t work out how to PM you to see if we were taking the same xx
Could I ask what medication you took for your lining my clinic has suggested a 3 month course of tocopherol, pentoxyfilline and viagra is that what you are on?
I'm taking sitagliptin - once daily tabletIt's a diabetes medication which has been shown in initial trials to improve robustness of the womb lining. It's still in research phase though
Thanks I think that one was mentioned too.
I am also taking the same
hello, I just wanted to say I’m sorry you are going through all of this, I don’t know the answer to your question but I too have suffered recurrent miscarriages over a long 4 years of trying.
I recently had the biopsy with the Coventry Implantation clinic and it showed the robustness of my womb lining wasn’t great so I am trying a 12 week course of medication and my NK cells in the uterine lining were only borderline high so it wasn’t seen as an issue.
I am now about to proceed with NHS funded IVF too.
Take care xx
Thanks for the kind words Sunflower004, and I’m sorry you are going through it too. It’s soo hard isn’t it.
How did you get involved with the Coventry implantation clinic? Is that Tommy’s?
Really hope the meds work for you this time!! Xx
that’s the one, it’s the Tommys implantation clinic in Coventry , I heard other women talk about it online so I contacted them and paid privately for the testing. Xx
We had had private immunology treatment for NK cells alongside our NHS funded IVF and just didn’t tell the NHS clinic. LG is now 13 months from that cycle xx
Thanks for replying GJW2018! Oh really?? Did you not have to do a certain protocol or take a certain medication that the NHS clinic would need to know about? Congrats on the successful cycle😃xx
It was an FET with the NHS so just oestrogen and progesterone with them then the private clinic it was clexane, intralipids and some tablets. I was being monitored by the private clinic and they assured me there wouldn’t be any interactions so I just didn’t mention to the NHS hospital and all was ok xx
Hi, our clinic treats NHS and private. We have had loads of tests done that aren’t covered by the NHS alongside our treatment. Trio biopsy and genetic tests ect. It hasn’t affected our funding at all. Although we have found it really hard because every appointment feels a bit like a sales pitch and we come out counting the pennies. I think as long as you’re not paying for a private cycle of IVF you would be ok. X
Ahh that's annoying but at least you got access to extra bits though!! Thanks for the response x
Hey,
I was pretty much told by my clinic whilst NHS funded that unless they reccomended it r.e they referred us to Coventry hospital where the implantation clinic is and recurrent miscarriage clinic is that we can’t go off testing on our own. We did actually try to lol! But surprise surprise a lot of places wont test you without a referral, and like above said, if it’s not on the HFEA regulations as green they will be very hesitant to refer you. I dont know how many tries you have funded but we have two, went with our first straight away and our second and then it was after that, that my clinic suggested the implantation clinic which even though it’s NHS you still have to pay for it as it’s a research centre. This was the only way really. I think it is something to do with the funding but not sure the exact details! Best of luck x
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