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IVF and Natural Killer Cells anyone?

(18 Posts)
LH2016 Sat 02-Dec-17 23:10:59

Hello, just wondering if anyone going through or having gone through ivf has been diagnosed with a high level of natural killer antibodies, and that is having treatment with intralupid infusions? We had all this for baby number one now 11mo. Thinking about ivf for baby number two in spring and I now hear the test for diagnosing nkc may be flawed and my research certainly points to that. Considering doing a biopsy to see if I do have nkc afterall. Anyone in a similar position pls? Thanks!

LH2016 Sat 02-Dec-17 23:17:51

By my own research I mean I’ve read a ton of articles linked to the hfea (fertility watchdog) and from obstetric professors etc. I’m trying to read up and not just read newspaper headlines!

geeup Sun 03-Dec-17 09:42:48

I haven't had it but was considering maybe doing some tests if this third round of ivf I'm doing is unsuccessful. What has the research you've read suggested? My current clinic won't have anything to do with immunes so I'd have to change clinics to try it.

notpastaagain Tue 05-Dec-17 21:59:43

I'm taking a trip to Coventry to see Professor Quenby this Friday to have a test for this. Successful 1st fresh cycle but since then I've had miscarriages pretty consistently in week 6-7. Don't know a lot about killer cells but my consultant recommended me to get tested as every embryo transferred has lead to a pregnancy (unusual in itself), only to end in miscarriage. I'll be interested in what is said on Friday, particularly because we are doing our final FET in January. I'm half hoping I have got the killer cells so it can be treated for the upcoming FET.

Ging78 Thu 07-Dec-17 03:25:26

Hi

I do keep reading that it's experimental and that some don't agree with the diagnosis. However, I had been tcc for 18 months. We had issues with sperm morphology, endometriosis and then with not ovulating. Our fresh embryo transfer was a 5aa and was unsuccessful.

We asked our consultant if there was anything else we could test for on our follow up and be sent us for killer blood cells testing.

Our consultant put me on predysylone a steroid 6 days before et. I'm now almost 7 weeks pregnant and had my first scan this week.

As well as the endometriosis I suffer from psoriasis. I've seen on the zita west clinic that they link these to nk cells.

So I don't know if they helped but it worked!

geeup Thu 07-Dec-17 09:16:13

That's really interesting @Ging78 I'm probably too late to consider it for my next FET with xmas and all but it'll be in my plan if this is unsuccessful too.
Does anyone think it's possible to have the NK tests and maybe get prescribed pred whilst having an NHS cycle at a separate clinic? My NHS clinic won't entertain the thought of NK at all but I still have one more FET after this one with them. However I can't help but think a fourth round of doing exactly the same (standard buserlin downreg and a scratch then progynova) is a waste without trying something new!

harrietm87 Thu 07-Dec-17 09:25:12

I haven't had ivf but after recurrent miscarriages (3 in a row, each conceived first try) I had private testing and diagnosed with high NK cells. I was treated with prednisolone, progesterone and intralipids and now 23 weeks pregnant. TBH I'm not sure about the intralipids - think it was the pred that fixed me!

geeup Thu 07-Dec-17 09:41:56

Hi @harrietm87 pleased to hear your pregnancy is going well!

Ging78 Thu 07-Dec-17 13:07:33

Chat to your gp to see if they would prescribe it or go to a private fertility clinic and see if they would? It might not be too late I started 6 says before my transfer.

LH2016 Thu 07-Dec-17 15:47:34

Hello and sorr for late reply! Amazing that so many of you have replied with your stories and I’m sorry for all that you’re all going through - it’s such a mission.
So the research I’ve read can easily be found by googling nkc evidence but I’ll post links when home.
In essence they say the diagnostic test if done as a blood test is redundant it could only be picked up with an endemetrial biopsy so the £800 blood test is rubbish. They say that nkc simply don’t attach the embryo. Yes the treatment is experimental but ultimately the actual test carried out the way it is, is wrong.
So - we had prednisolone too and that combined with nkc Intralipid and embryo hatching and embryo glue we have a baby. However anyone scientific and sensible pretty much says all the things we had are as useful and proven as unicorn farts. Prednisolone is good yes but everything else apparently not. The endemetrial scratch or scratch and wash as they call it is the only add on that they say works.

LH2016 Thu 07-Dec-17 15:51:59

Sorry that’s should have read nkc simply don’t ATTACK the embryo and indeed some say the cells are a good thing and buggering about with them could even be harmful. Your body finds a balance and works with the growing baby.

So basically we don’t know what made us pregnant and herein lies the dilemma, with my unscientific expensive load of bollocks add ons I got pregnant. Do I have the guts to not do that and not get pregnant and know that this is just how it is and that it’s a marathon not a sprint? I know the add ons don’t work but think what if they do, what if they do!! But I’m really thinking they don’t and I was just lucky - it was just coincidence. So those of you saying your clinical don’t entertain nkc maybe they’re the clinics to be with.
We are going to ours to present the evidence and let’s the battle commence as they’ll have an answer for everything but fundamentally they’re selling not just a treatment but a diagnostic TEST which is rubbish. The hfea watchdog said to go back to them if we don’t get a satisfactory reply and we certainly will. I’ll update you!! In January! Sorryfor long post!

LH2016 Thu 07-Dec-17 15:56:41

PS To the lady who has managed to get pregnant but has recurrent miscarriages I’m so sorry. I’m not saying nkc won’t help but what I am thinking is perhaps there’s something in the chromosomes that a PSG test could pick up. That is “proven” in as much a sense certain chromosome disorders cause a baby to stop developing and miscarry. If I were in your shoes I’d consider PSG as it seems that the nkc just doesn’t do what it’s been being said they do. I have no medical background just doing my own research but please be careful before you do anything that will give a huge amount of money to a clinic. It’s in their best interests for you to be as infertile as possible. They’re amazing when you’re pregnant and the world is awesome but they’re a business and I’m quite sure they like the financial benefits of this terrible situation we are in which means we’ll pay for anything. Even unicorn farts.

harrietm87 Thu 07-Dec-17 16:46:54

OP if you're talking about me (I had recurrent mcs as mentioned above), I'm pregnant now and it's all going well. I don't have any chromosomal issues and don't need PSG.

I'm 30 now and my mcs were in my 20s. The likelihood of having 3 "random" chromosomal problems causing mcs at that age is tiny, which is why the NHS test you after 3.

I don't have any of the other known issues that can cause mcs, like sticky blood. The only issue that was found and treated was high NK cells, and it worked.

TBH I don't know and I don't think they know precisely how some of the immune treatment works but I know that in my case and in many others, it is prednisolone that has enabled me to keep this pregnancy going. Once my immune system was suppressed with the steroids I stopped miscarrying.

I have other autoimmune conditions though where my body attacks healthy cells (as do many people in my family) so it makes sense to me that my immune system has also attacked developing embryos in the past. There are lots and lots of conditions (thyroid issues, diabetes, arthritis, crohns, lupus, Addison's, uveitis etc etc) where the body's immune system is unbalanced and it attacks itself, so not surprising that there may be other conditions where the embryo is the target, as opposed to, say, the thyroid gland, the pancreas, or the villi in the intestines. Sure the body should "find a balance and work with the developing baby" as you say, but what if it doesn't?

Obviously this won't be the case for everyone and it's not a panacea, but I wouldn't write it off entirely.

LH2016 Thu 07-Dec-17 17:21:18

Harriet I'm so pleased for you! It's so hard isn't it because there's such a part of me that thinks that I shouldn't write it off entirely but then part of me looks at the research and thinks I should go off that. But as I said and as you say everyone is different and so I can't comment on anyone else. I think like you say I'm going to probably look into the prednisolone as actually til you mentioned it I forgot I was even on it. I know I also had a shot in the bum of ibs meds to stop me from contracting as after the transfer the first time I had huge cramps and they said that the embryo wouldn't stick if it was being aggressively thrown around. You just don't know do you, it's very hard. And each cycle takes its toll mentally physically and financially! Good luck xx

LH2016 Thu 07-Dec-17 17:22:32

Links -

www.createhealth.org/news/2016/reproductive-immunology

www.ncbi.nlm.nih.gov/pmc/articles/PMC534451/

www.bionews.org.uk/page_583653.asp

pregle Thu 07-Dec-17 20:36:12

I have a 10 month old baby after 3 cycles of IVF - first 2 cycles included prednisolone but the 3rd followed the Chicago blood tests (expensive bloody things!) that showed high nkc and as a result, this last cycle included the intrallipids treatment (at zita West) no idea at all if it was this, or the diet or the acupuncture or timing or whatever that led to success but If I was doing ivf again I’d go with the exact same protocol.

HOWEVER somehow I’ve just gotten pregnant naturally so who the hell knows what’s happened!

LH2016 Thu 07-Dec-17 20:56:23

Pregle that's amazing!! Congratulations!! Know what you mean about wanting to do everything the same because it's a success, it seems tempting fate not to. What a dilemma. Head or heart! I'm so made up for you!

pregle Thu 07-Dec-17 21:33:18

Thanks so much LH!

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