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Miscarriage/pregnancy loss

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Low uterine NK cells( any success stories?)

36 replies

Wants2bhappymumma · 06/09/2022 12:49

Hi all,

I have 5 losses (4 MMC,1 spontaneous,$ naturally conceived and 1 top quality embryo transfer via IVF).Following y 5th lost I had a consultation with Prof Brosens at Coventry Implantation clinic and I was advised to go for Uterine biopsy for NK cell testing.The first one came back a low (1.27%).I was wondering whether any of you have any success story after being diagnosed with low NK cell.All my my losses were early loses, 4 of them between 7-8 weeks and the IVF one was at 5w5D. I never had problem with getting pregnant.

I will probably go for the second biopsy if I don't get pregnant in this cycle 😜.
Anyone willing to share their experiences ?

OP posts:
Butterfly3xo · 20/09/2022 22:24

Hey really sorry for your losses @Wants2bhappymumma I'm confused as to why they told you 1.27% was low they told me over 1.2 was high. I don't believe any of it to be honest with the NK cells I declined treatment and had a healthy scan today at 11. 5 weeks with no treatment I honestly think it's still clinical research and it's technically not a diagnosis, try not to let it reck your head like it did mine how NK cells effect a pregnancy is still not scientificly proven and they do help your immune system.

Alilemon · 30/01/2023 13:44

Hi @Wants2bhappymumma- did you get any answers on your low uterine NK cells? I also have this and am not sure what the treatment options are.

2021ivfagain · 20/03/2023 13:38

@Alilemon Hi. I know this thread is not very recent. I’m preparing for my FET and I have very low nk cells in endometrium but slightly raised nk cells in the blood. I’m in the U.K.

For my low nk cells in endometrium, I will be having a neupogen infusion on first day of progesterone and on transfer day I will have an hcg infusion. For my slightly raised nk cells in blood I will be on steroids 20mg a day.

Butterfly3xo · 25/03/2023 08:46

I declined treatment and am 38+2 weeks pregnant today due in just in less than 2 weeks.

I was really worried about taking anything for this as it is not backed by the British Medical Journal as treatments are still being trialed.

There are also very few drugs that are licensed in pregnancy, anything you have to sign a declaration of helsinki for is a bit scarey IMO.

Best of luck to those on the treatment plans I just thought for those of you that don't want to take anything, I wanted to let you know that there is hope of having a natural pregnancy with no treatment.

I used to Google alot about NK cells after 3 losses, but the 4th time I got lucky everything worked out just fine. Please don't give up I know this stuff can be tough but there is hope.

2021ivfagain · 26/03/2023 12:28

@Butterfly3xo Did you have high nk cells in the blood as well? Mine are only slightly raised in the blood. I’m having treatment for the low nk cells in the endometrium but really worried about going on steroids.

Butterfly3xo · 26/03/2023 14:16

@2021ivfagain Alledgedly I did, I'm a bit of a geek when it comes to test results so I requested a copy of mine, when I found out that there was no limit of detection to measure against I queried it. Miss Viswanatha was really annoyed that I obtained my blood test results.

The theory behind this high natural killer cells business is it is based on a means average based on clinical research.

In other words according to medical science there is no such thing as high natural killer cells because it has not been set in stone by medical science. Or the British Medical Journal. (BMJ) which doctors read.

There are about 2 hospitals in the country researching this NK cells theory. You have probably been told as I was, not to Google it.

I belive that it is a clinical trial your being asked to participate in, that's why u have to sign a disclaimer.

Dr Shehata and Miss Viswanatha run their own private clinic along side their work for the NHS where they effectively charge willing participates a lot of money for treatment which is based on their own reasearch.

High NK cells is not nor has it ever been a formal diagnosis.

Alledgedly they do see good results from their practice but I can tell you I didn't participate in their treatment plan as I went against their reaseach and am responsible for my own successful pregnancy without medical Intervention.

The choice is yours you just have to go into the treatment plan knowing that should it effect your fertility negatively because it's reaseach I highly doubt they would take any responsibility at the private clinic.

Butterfly3xo · 26/03/2023 14:31

By the way as well according to medical science it is currently unknown how NK cells effect a pregnancy.

In other words IMO it's like saying we researched 10 women who all had between 4 and 6 freckles. On average a woman should have 5 freckles, but its not strictly relevant to pregnancy isit...

That is just the reaseach that's been carried out on them.

Strictly speaking I'm not trying to knock their reaseach, I just find it upsetting when I see women then going for IVF and I'm sat there wondering if the NK cells were needed to fight infection as that it typically what they are for generally.

Me personally I just think if u don't take anything, u can't blame anyone if it goes wrong.

So I wasn't willing to chance it. Not to mention the horrible side effects like moon shaped face and hair loss that the consultants appear to take no responsibility for.

I was sat there reading the posts like so if your hair never fell out before then all of a sudden u take this medicine and it does surely it has to be something got to do with what the person has been given.

I hope it goes well for you whatever you decide though really do.

2021ivfagain · 26/03/2023 14:31

@Butterfly3xo I have low nk cells in endometrium which affects implantation so will get tested for that. Did you have low nk cells in endometrium too? Mine was so low it was really out of range something like 0.002. However, when I did biopsy for Emma, era, Alice and nk cells, I never had our charts like others do. I’m with CRGH. My nk cells in blood were only slightly high. One was 23% and they like it below 20%. I’m more worried about low nk cells

2021ivfagain · 26/03/2023 14:33

@Butterfly3xo Also prone to gardnerella and atopobium vaginae as my lactobacillus is low. Only have lactobacillus Jensenni. From what I’ve read steroids can cause dysbiotic bacteria.

2021ivfagain · 26/03/2023 14:35

@Butterfly3xo Meant to say I will only have treatment for low nk cells in endometrium as there are no risks with these. It’s just a neupogen infusion and extra hcg injection on transfer day. But two transfers have been cancelled due to either infection or cold virus.

Butterfly3xo · 26/03/2023 15:42

@2021ivfagain They didn't say anything about low Alison said "These are the levels we refer to There are the levels you can look at if you have the results there ."

total NK count is high if over 200
total Nk count percent is high if over 12%
total Nk 69 count is high if over 0.8

Just letting you know what they told me last year as for all I know the reaseach limts could have changed.

I don't think I had endimetrium tests just 7 files of blood taken out of me.

googleeverysymptom · 28/08/2023 19:33

@Wants2bhappymumma I hope you had a positive breakthrough from the low NK cell count issue ? I am facing the same and not many doctors have success stories to share. Did it work ? What was the protocol followed for your transfer ?

2021ivfagain · 29/08/2023 13:46

@googleeverysymptom Hi. I had some success with low nk cells in endometrium. These can affect implantation if too low or too high. Mine were very low. I did a natural modified FET transfer with mild stims and then a trigger of 10000iu gonasi to force ovulation. The first day of progesterone (day after confirmed ovulation) I had neupogen infusion to boost nk cells in endometrium. I also had hcg infusion on transfer day. Both of these treatments worked: I had implantation and became pregnant but unfortunately lost by baby at 8w 1d. At 6w 5d there was a positive heartbeat and everything was great. I didn’t, however, take steroids for my slightly high nk cells in the blood. The ones in the blood are different to those in the endometrium. I was getting recurring bv due to batching for IVF which completely destroyed my microbiome. Therefore, my consultant decided against steroids as I was struggling to get over an infection near transfer. Thankfully with probiotics the infection cleared by the time I got pregnant but if I had taken steroids this might not have happened. It’s really hard as I had a missed miscarriage. I do have a son but so much wanted him to have a sibling. I have 5 day 5 blastocysts left frozen. I was 40 when I did egg retrieval and when I got closer to 41 egg quality declined. If I had known I would have got more blastocysts, I would have tested. I only got two at 38 as my husband’s morphology was not as good. My clinic would not let me do more egg collections when my amh was good as my consultant was on holiday, I had to renew passport and they broke up for Christmas earlier.

LAURAPAX · 25/02/2024 21:27

Hi @2021ivfagain how are you getting on? i've recently found out i have low nk cells - im going IVF with CRGH and have had x2 miscarriages. I'm freaking out about having low nk cells as im reading quite a lot of negative outcomes and miscarriages. I hope you are doing OK. im trying for my first and soon turning 38. I have x5 embryos waiting to transfer. xx

LAURAPAX · 26/02/2024 19:45

Hi @googleeverysymptom just re-reading this thread? How did you get on with the low nk cells? I have just been diagnosed with low nk cells after blood tests. This was in preparation for my first FET following two miscarriages from natural conception. I hope you managed to have some success and things are working out xx

Wonderwal · 14/04/2024 18:24

@LAURAPAX Hello, I’m also with CRGH and considering what I do. High nk in blood and low in endometrium. I don’t know whether to take up any treatment or not. Do you mind me asking what you decided? Thanks

Prayformiracles · 14/10/2024 11:02

@Wonderwal just seen your post from 6 months ago. I am also at crgh with high nk in blood and low on one marker (gzmb) in endometrium.
One Consultant advised intralipids but no steroids in case that lowers the uterus nk further. But my lead Consultant (he was away when I spoke to other consultant) is saying both intralipid and steroid because he doesnt think intralipid alone will be enough to address the High nk in blood.
I have told him what the other Consultant said and he just said its a difference in judgement. I dont know what to do. Whether to go along with it or refuse steroid or ask for a reduced dose.
It's hard because if it doesn't work I might think it's either because I used steroid or because I didn't use steroid.
Its a euploid embryo. Final attempt.
Any insights?
Thank you 🙏

Wonderwal · 14/10/2024 11:16

@Prayformiracles hello, I had one euploid transfer with steroids, neupogen wash and intralipids which did not take. Based on the fact I had managed to get pregnant previously with no intervention (although both ended in miscarriage at 7/8 weeks) I trusted my gut instinct and had NO treatment prior to a transfer, but took intralipids once I got a positive result. Now 18 weeks pregnant.
I think a decision should be based on your individual history and gut instinct. I had always been uncomfortable with taking steroids, don’t know why. My nk results were not wildly out of range and I felt that steroids was too much of an interference but that intralipids would maybe just ‘calm’ any issues.

i was with dr ozturk but felt like I wasn’t really given any advice on what to do - I made my own decisions on gut instinct rather than anything medical he was able to tell me.

sorry that might not help, all I can say is go with what makes you feel most comfortable. Any questions, just let me know, best of luck.

Prayformiracles · 14/10/2024 12:31

@Wonderwal thanks so much. I am also with Mr Ozturk. Have been with him for 6 years. After one failed NHS fresh cycle and have since always tested so only transferred euploid embryos. One out of three of those implanted and had my child. This was without nk testing/intervention. The others didn't implant so I may have implantation issues hence the nk testing before the final ET. MR O has given me some logic saying that because my nk inflammatory markers are High, he doesn't feel that intralipids alone are enough. But it doesn't really address that the steroid could also bring down further the one lowered nk marker in the uterus. I have asked what the consequences are of lowering this further and awaiting a response. My gut instinct is maybe to not have the steroid or have a much reduced dose. But I don't know how confident I would be with that decision knowing its not what the "expert" believes. Feeling stuck!

Wonderwal · 14/10/2024 13:58

@Prayformiracles im happy to share my lab results so you can compare if it helps?

whilst I didn’t have any nk cells treatment for transfer I did use embryo glue and hcg, although I was indifferent to these as didn’t read anything that convinced me they would help - I just had them added by the nurses and actually wanted to cancel them because of the cost but left it too late to cancel. They could have helped I suppose, but they weren’t immune treatments specifically.

Prayformiracles · 14/10/2024 14:56

@Wonderwal I will also be doing embryo glue for the first time. I had to ask about it. I find things arent really proposed to me if i dont ask first. I was only then told it is usually used for women like me (e.g. unexplained implantation failure with euploid).
What is the hcg?
Happy to see your lab results if you are happy to share but I also appreciate every persons case is different :)

Wonderwal · 14/10/2024 20:35

@Prayformiracles the hcg is a wash done 10 mins before transfer. In theory it’s a ‘headstart’ telling your body that you are pregnant so to start producing the hormones etc needed for a pregnancy.
As I said, this and the embryo glue had maybe a 50/50 success rate based on my research but no harm in trying them.

Wonderwal · 14/10/2024 20:40

@Prayformiracles i also asked Dr O if the steroids would treat bloods but cause further problems with uterine levels. Don’t think I ever got an answer that made sense. I made the decision I felt most comfortable with and made me the most relaxed - very difficult when so much is riding on it, but once I made my decision I got comfy with it and tried to stay positive.

Prayformiracles · 14/10/2024 21:25

@Wonderwal that's really interesting thank you.

I might research and ask about hcg then. I wonder why this (as well as embryo glue) hasn't been mentioned/offered to me as an option. I find it so strange. They also know this is my very last attempt.

May I ask, when you miscarried were they also euploid tested embryos?
Did you do emma and alice tests too in the past? I had that done too as well as era.

Wonderwal · 14/10/2024 21:55

@Prayformiracles yes I had Emma and Alice and no problems came back on them. Miscarriages weren’t tested embryos - one was natural pregnancy and one was an ivf. After the ivf miscarriage we tested the rest of our embryos and majority came back euploid so dr o said we can assume the miscarriages were euploid. The failed transfer on steroids was a euploid.