Clinic saying NK cell testing not worth it….

[Mlove12]

So I asked my clinic if they offer NK cell testing, they said they spoke to a consultant and the advice is that they only complete the blood test, and the testing is ‘on the red list’ (whatever the hell that means). They only complete blood test and not uterus testing so would offer ‘no useful information’ , in accordance with HFEA.

Has anyone else run in with a similar experience to this?

Autoimmune issues run a lot in my family and I have had autoimmune issues where I’ve had to take immune suppressants.

Its annoyed me a bit- cant lie!

We have NHS funding and was more than happy to go to another clinic to get full tests and pay for those privately prior to our NHS funded cycle

[Kimbob82]

Have you looked to see if you can find a reproductive immunologist in your area? If your clinic isn’t acknowledging that your immune system is playing a part, you might need to start doing your own research. Dr Norbert Gleicher on YouTube has some really interesting videos on how an over active immune system can prevent implantation and pregnancy x

[Mlove12 in reply to Kimbob82]

I found one in London which is only couple hours away from us.Most of my research is from on here which is so helpful as it’s real life experiences and I’ve seen a few people mention nk cells testing and it’s been a positive experience by adding steroids etc.

However my partner done some research and he found barely nothing regarding nk cells linking to failed implantation so he’s not sure if it’s worth the testing now either.

I’ve asked my clinic about going on steroids etc and paying for this on top of treatment even without the testing as I saw someone else do that but just waiting to see what they say.

Thank you for getting back to me x

[Purple276]

Hey,

We had a similar discussion with our clinic but although they said limited evidence they did at least do what we asked and we paid for some of the immunology tests.

I suspect the red they mention is this...

hfea.gov.uk/treatments/trea...

IVF was probably once on that red list before they had enough randomised control studies so there may be benefit for some people they just haven't got the evidence yet.

I agree with Kimbob - you know your body and if think that doing the test would help see if there's a clinic who would do it while you pause your NHS treatment.

Good luck x

[Mlove12 in reply to Purple276]

Did your clinic complete the tests for you? And May i ask if you ended up having nk cell to a higher level or were they ok? Sorry another Q- bit cheeky but can I ask what made you want the tests in the first place? As I mentioned to Kim above ive asked if I can have steroids etc anyway as I saw someone else do this and went on to have a successful pregnancy.

My partner has been researching and hasn’t found much evidence that nk cells effect implantation but from what I see on here, it’s a different story

Thanks for replying x

[Purple276 in reply to Mlove12]

They did and came back that NK cells were okay but spotted a couple of other bits like a gene thing, high TPO levels and so suggested steroids and aspirin/ Inhixa injections. We took the tests as did 3 transfers and nothing. To be honest I'm still not convinced that would makes all the difference. I've gone gluten free though and feel so much better and got thyroid levels down so feel that was worth finding out.

For me I always felt my cycles were shorter and that the normal IVF process was the issue as I've transferred 5 embryos and non of them implanted. I've just done ERA tests which my gut told me would show I need fewer days and that was correct so I'd say if you feel like somethings not quite right and would be helpful to know it's worth pursuing. I wish I'd done the ERA sooner but hey! Let's hope now we've got the right protocol and this next transfer will work.

Hope all goes well for you too xx

[happilyevershahs]

Hello, your clinic is right, NK testing is on the red list meaning there isn't substantial evidence to support it's use. Like yourself, I asked if I could just go on steroid tablets after reading many ladies stories and my gut told me that it's something I needed. Due to covid, my consultant wasn't happy to just prescribe me steroid tablets along with it's side effects so I paid for the blood test. As my gut told me correctly, there was an immune issue and I was consequently prescribed steroid tablets. I would say it's more likely you will need them too given your family history. If your NHS clinic offer the blood test, that should be sufficient I think.

[Mlove12 in reply to happilyevershahs]

This is exactly how I feel, just a gut feeling and I would feel as though I’ve wasted a round without just giving it ago. I’ve emailed them back about private tests else where but they haven’t got back to me yet. After reading your response (thank you by the way!) I would be happy to complete the blood test at my clinic and not uterus scratch and see how that goes. I hope your cycle goes ok! X x

[Ganges]

I agree with above that ivf was probably once on the red list. My clinic were discussing me in mdt this week as to whether I should test for killer cells. They offer the blood test only. But there is a specialist clinic in Warwick that are the leaders in NK testing, my clinic recommended them. I have the info message me if you’d like it x

[Mlove12 in reply to Ganges]

Hey, thanks for replying.Would you say just doing the blood test is worth it? My clinic offer it but wasn’t keen on offering it to me x

[Ganges in reply to Mlove12]

My consultant said it was up to us. They could give us the steroids anyway, some people like to know for sure. It’s so hard to know what to do. Personally I’m going to see what the mdt outcome is for me and go with that 🤷🏽‍♀️. Through Warwick it’s a biopsy and think it’s about £550 fyi x

[McQueeny]

My clinic also said the NK cells isn’t really worth it, but agreed to put me on steroids for the next transfer to see if it makes a difference (as that’s what they would do if NK cells came back high). I don’t love the idea of being on steroids if I don’t need them but have decided to give it a try…. 🤷🏼‍♀️🤞 x

[Koala365 in reply to McQueeny]

They also give you intra lipid infusions if you test positive for a high level of Natural Killer Cells so you might want to ask for those as well

[McQueeny in reply to Koala365]

Ok thanks, will do

[Koala365]

My previous consultant reckoned there was no point doing the implantation issues tests because it was clearly an egg quality issue due to my age. Even though by this time I had had 6 embryo transfers none of which had implanted. Even when I insisted and my thrombotic risk profile test came back with the MTFHR gene mutation which indicates implantation issues and they prescribe low dose heparin/clexane for in an IVF cycle he still said he thought that wasn't my issue. I changed clinics and noting this they wanted me to hVe the Natural Killer Cells blood test and that came back with high levels of Natural Killer Cells and high cytocaine (inflammation) so they have prescribed steroids and intra lipid infusions as well as the clexane during my IVF cycle. I haven't had a chance to test it out properly as my last cycle was cancelled part way through and sadly my AMH has dropped now to 3.2 so perhaps we will never know if I don't get anywhere with my next cycle but at least I have had the tests and am trying and that is some comfort. I just wish I had had these tests right at the beginning of my IVF journey as it would have given those 6 embryos a better chance. Even though I am older, I can't help feeling that one of those embryos might have been normal and resulted in us having a baby if we had. I would say get the tests done at least then you won't end up in the position I find myself in or always thinking that you should have done them!