Killer cell testing - thoughts?

[PinkCat22]

hello all,

I am having a uterine biopsy on Friday for Alice/era/emma testing. We were supposed to have testing for NK cells and were told it was a good idea back in December because I have endo.

so we decided to do the lot.

Fast forward to my scan last Friday and I asked about that test when the nurse mentioned the others. She said my clinic no longer offered it. I was understandably really upset to be getting this info after three weeks of down regulation and a week of estrogen…this was, I thought, the main test for us and we found out it wasn’t happening…by accident??

Today I’ve spoken to my Dr and he apologised for not notifying me. He also said my only option would be to have the blood test for NK cells instead.

I said my understanding was that didn’t show if uterine NK cells were present and he said the science just isn’t there to be sure on that conclusively. Waiting for costs on that but I hear it’s pricey.

Apart from feeling annoyed not to have been told and given the choice before starting the last (horrible) 4 weeks of meds, I feel really torn. Do we just do Alice/emma/era and hope that finds something?

I’ve done 3 egg collections and I’m completely unable to do more financially or emotionally or physically. So we have three embryos (none amazing quality), and our dr’s reasoning for doing any of these tests was to give them the best possible chance because they are our only chances (which I do recognise is a privilege to be able to say we have any).

Do we shell out money for the NK blood test? Or do we just stick with the other tests and hope killer cells aren’t the reason my last transfer failed….

I know I need to decide this myself but I just don’t feel I have enough info and everything I can find is so contradictory…

Anyone have any thoughts or experience with any NK tests (blood or uterine) or treatment for killer cells?

I’d be so grateful xxxx

[Millbanks]

Hi lovely,

Ugh how frustrating - I would also be livid.

I had the ERA/ALICE/EMMA test done and it did show my window of implantation was out by 24 hours. We adjusted this for my 5th transfer and alone it didn't help us get a positive.

Then I read about NK cells and decided I wanted those testing too. My dr said I could do the uterine biopsy or have the bloods - and I really didn't want to wait for another cycle to have another biopsy so I opted for the bloods. She said that you can measure NK cells either way but if they are high in the blood they are likely high in the uterus too - so it didn't really matter.

They came back really high in my blood - so for my 6th FET I was on steroids and had intralipids before and it was successful (plus the ERA timing and it was a euploid embryo)

Our route was really convoluted but I am certain that the fails before was my immune system rejecting the embryos each time.

xxx

[IVFat40]

Hello hun, for me NK cell testing I believe was crucial, I was treated with steroids and then got pregnant first transfer (5 previous failed transfes). My clinic didn't offer testing so I had a uterine biopsy at the implantation clinic at Coventry hospital, run by Tommy's with Warwick University (part of Dr Brosens research trial, not expensive). My clinic then implemented their recommendations, which were primarily steroids and also the endo scratch. Another option might be if your clinic were willing to just prescribe the steroids without testing, many won't (for some understandable reasons) but worth asking perhaps. Wishing you all the very best of luck.

[PinkCat22 in reply to IVFat40]

Thank you xxx

[Batsford]

Hi PinkCat22,

I think the NKC testing can be a game changer. My consultant told me that the NKC uterine biopsy isn’t accurate and only the blood test is accurate. For instance, I had a normal NKC uterine biopsy a couple of years ago, but when my blood was tested last year my NKCs were off the scale and I also had high Cytokines and tested positive for Anti Nuclear Antibodies. If you can get the NKC blood test I would go for it. Good luck xx

[PinkCat22]

thanks so much. They came back to say it’s £1060 for the NK blood test so I’m just not sure (biopsy we budgeted for was £550). We have blown budgets so many times with IVF though. I did also have the ANA test already and it was negative. Not sure if that’s a possible marker or separate. X

[PRAYINGFORTHISTOWORK]

hi my daughter had four miscarriages then had nk test which showed high, on her trf she followed immune protocol and she’s now pregnant with twins, if ur able to afford the test I would certainly say have it done x

[PinkCat22 in reply to PRAYINGFORTHISTOWORK]

Thank you. I think we will go for the bloods (biopsy not available to us easily) and at least that way, if we get another failure we can look back and have no regrets. Congrats on your daughter’s pregnancy! ❤️

[PRAYINGFORTHISTOWORK in reply to PinkCat22]

She didnt have the biopsy she just had the bloods done, Many thanks, and i really hope it works out for you x

[PinkCat22 in reply to PRAYINGFORTHISTOWORK]

Thank you so so much. And I really am so very happy for your daughter and for you. I’m a twin myself and it’s super cool being born with a bestie! ❤️

[PRAYINGFORTHISTOWORK in reply to PinkCat22]

Thank u so much and yes I’m a twin too and love 🥰 the closeness we have, it’s just the best x

[Boo718]

Hello. Personally I would do the Alice Emma and era test and see what the outcome is. If that comes back all clear I’d then consider the nk cells. It was our very last choice when doing ivf coz it’s really expensive and a pain in the butt to get done where we live xxx

[PinkCat22 in reply to Boo718]

Thank you! Did you do the biopsy or blood or decide not to in the end? X

[Boo718 in reply to PinkCat22]

We did the biopsy and changed our protocol following the results. That transfer is asleep upstairs 😍 transfer no5 xxx

[PinkCat22 in reply to Boo718]

Awww congratulations ❤️❤️❤️

I think at the moment the blood test seems to be all that is available so we might just do it… if nothing else to feel we tried everything

Thanks so much again for your helpful replies x

[Cook7786]

Our clinic do not do the nk testing either but after my partner had 2 bfn and 2 positives (couldn’t get past 6 weeks) we were offered three weeks of steroids leading up to this transfer, to see if this will help. Our OTD is next week.

We did the ERA Alice and Emma. It showed pre receptive - we tweaked the transfer window and this is where we were getting the positives, just couldn’t retain the embryos.

X

[PinkCat22 in reply to Cook7786]

Thanks so much for this reply. I’ve got everything crossed for you for next week ❤️❤️❤️❤️