High NK cells and high cytokines - help, explanations, advice?!

[LewisLongbody]

Hi, I'm a 38 year old Low AMHer with two failed rounds. I've just got my results from the Chicago test - positive for NK Cells (21.4), and both inflammation markers high (43.2% and 23.9%). My doctor says I need medicinal mushrooms to reduce inflammation, should re-start acupuncture, and will need steroids and intra-lipids for my next round. I've had IBS for 20 years and this may be the cause. I don't know very much about these (new to me) issues and am looking for some basic advice and info on what it means, and the implications of the treatment (steroids compromising immune system etc.). A lot of posters seem to have the background already and dive straight into the detail :> Thanks in advance, appreciate any help you can offer!

[Zebedee1971]

Hey,I have high nk cells and, good news, is the treatment worked for me. I'm currently 30 weeks pregnant after 3 years of trying.

When you have high/aggressive nk cells all it basically means is your blood cells attack embryos, treating the embryo like a foreign body, which is why embryos either don't implant, or come away soon after implanting. So you're more like to miscarry before 7 weeks.

I took steroids - no issues with them at all. They actually make pregnancy easier, I literally had no symptoms in the early days- no sore boobs or nausea. Steroids mask all the usual pregnancy symptoms of first trimester. You take these until 12 weeks then start weaning off. I won't lie, my face did get a bit rounder, they call it moon face, but by 20 weeks all was back to normal. I was told to shield when taking the steroids, but I isolated instead.

Intralipids are taken by athletes, they're no bother. Basically, you get hooked up to a drip once every 4 weeks. Nothing bad or chemical in them, it's pretty much egg and some other stuff.

The other stuff is new to me, I didn't need mushrooms?! Or acupuncture. But I did have Humira, an injection to calm nk cells, and Hydroxychloroquine too. Didn't need ivf for this pregnancy, the drugs did the business on their own x

[LewisLongbody in reply to Zebedee1971]

Hi Zebedee1971, thanks so much for your reply and firstly, huge congrats on your pregnancy!! Such great news that you've found the answer for your particular situation/case, after a tough journey. And So cool you didn't need IVF either, congrats!!

Thanks so much for the info. I have never had a positive pregnancy test in 3 years of trying including 2 failed rounds of ivf. I had a hydrosalpinx in my left tube which was removed in Feb 2020 so the fluid in that tube would have been toxic to embryos as well but removing that wasn't enough to help me get pregnant either naturally or via ivf. These NK cells result and the high inflammation markers might help to explain why. I'm so glad we got the chicago test done.

I have a few more questions, if you don't mind (and you may not be able to help me with all of these):

- I understand the steroids suppress the nk cells which would otherwise attack our precious embryos; you mentioned taking humira - is this the steroid? I've seen people talk about prednisole as well, which i think is an alternative steroid? what role does the Hydroxychloroquine play?

- and you have to take the steroids from egg collection/transfer or a positive pregnancy result for the first 3 months, and during that time you're immuno-suppressed so you need to shield/isolate because it would not be good to get covid during this time? I'm in Ireland and our vaccine roll-out is much slower than in the UK, and now I'm wondering should I wait to get the vaccine before starting my next round and hopefully 3 months of steroids...

- Then the intralipids are just to support your system?

On the medicinal mushrooms, my consultant is a fan of TCM and has seen really positive results using mushrooms, including for high inflammation markers, so both the mushrooms and the acupuncture are to reduce the inflammation (which apparently is double what it should be).

I'm also worried about why i would have such high inflammation more generally; I've never been on a cleaner diet than the last 8 months (zero sugar, alcohol, gluten, dairy about 95% of the time). It's great that we can deal with it for the fertility side but I feel like I should know why it's so high in the first place. Understandably my consultant is only concerned with the fertility side, and unfortunately without wider symptoms its hard to get doctors to look into it.

Thanks again for your reply!

[Zebedee1971 in reply to LewisLongbody]

Hey,So honestly I don't really know what Humira does, I think the specialist said it calms the nk cells down, and the Hydroxychloroquine - no clue! He did explain it all to us but I'm not much of a listener, my other half usually takes it all in and the dissects it down for me. The steroid I took is predisolone, but I've seen variations of the spelling- all the same as far as I'm aware. I have seen people on here prescribed just steroids, but my specialist uses Humira and hydroxy too... He has really high success rates, so although I can't tell you what exactly everything does, I do know his treatment worked a dream for us.

Yes, to all the info about steroids! Start at egg collection and take them all the way through to 12 weeks then start weaning off. I literally just quit work. I'm a supply teacher and I didn't feel safe, this was before Xmas and I knew it would all flare up again in January, so I left work at 6 weeks pregnant. If you can get a vaccine before you try again then do do that. They are saying you can get the vaccine when pregnant (two have been tested on pregnant women in the US) but I personally am waiting til baby comes along in July.

I was super healthy for 2 and a half years. In the lead up to this pregnancy I had so many takeaways and fizzy drinks- I don't believe diet makes much of a difference, otherwise there wouldn't be so many chavs walking the streets puffing on cigarettes and eating McDonald's, with 5 kids in tow all stuffing their faces with haribo. Most of the women on here are super healthy, do acupuncture, look after themselves.... But if there's something wrong with your body that makes conception harder, an avocado isn't going to put that right. So do make sure you treat yourself too 😋

Hopefully you finally have all the answers to get your positive pregnancy result, fingers crossed for you 🤞

[LewisLongbody in reply to Zebedee1971]

Thanks Zebedee1971, that's helped a lot! Our new consultant is well-regarded in Irish fertility circles for immune issues, so I have a high enough level of trust to just go with her protocols and recommendations as well, so i get it.

At the same time, I'm so used to having to advocate for myself at this point, it's become ingrained to try and get a handle on all the details. Plus I would like to figure out the underlying cause of the inflammation as well as treating it short-term for fertility reasons.

Infertility issues just go on and on, you think you've worked through so much of it already, and then there's a whole other area for you to learn about ;p It is great to have this knowledge though, and hopefully it'll be a game-changer for us, as it's been for you.

Totally agree re the diet side, and actually finding a concrete reason may help me loosen up on that side. To date because its been unexplained, and just low AMH, poor quality I've felt like I needed to do everything possible to improve quality and give myself every chance. it's kind of nice to find a tangible issue!!

On the steroids and being immuno-compromised from COVID perspective, I'm working from home, so that would be fine, but my husband is out in the world meeting new groups of people every day so that would be a risk. He's also not keen on the vaccine in general, including from concerns around how it might impact fertility. I would prefer to wait as well in general, but if I'm taking steroids that would probably change the risk balance for me. No idea when I'll be offered one either! Love this extra layer of anxiety and crap COVID puts us under on this journey!

Anyway, thank you so much for your help, and congrats again on your pregnancy!!

[Millbanks in reply to Zebedee1971]

Your take on diet really made me chuckle and couldn't agree more! x

[soccerkt6]

Hi lovely, it sounds like your doctor is open-minded and has a plan, which is fantastic.

If I may, before you start steroids and your next IVF round I would highly, highly recommend an initial consult with Neo Fertility. They're based in Dublin, which is handy seeing as how you're in Ireland.

They're a fertility clinic that works to find and solve the root causes preventing conception and from what it sounds like, you may have a little bit of autoimmunity which they're well-placed to help with. They're the only fertility clinic (that I'm aware of) that prescribes low-dose naltrexone to help with immune issues, which is very safe, doesn't suppress your immune system so you wouldn't need to shield, and you can take it throughout your entire pregnancy.

I've been working with them for 6 months now and they've identified and helped fix some problems I wasn't even aware of. Obviously, the ultimate goal is to conceive and have a child, but since they're treating underlying issues their treatments have also improved my general heath.

Feel free to pm me if you have any questions. Good luck! xx

[LewisLongbody in reply to soccerkt6]

Thanks so much for your reply Soccerkt6, I am aware of Neo (they were recommended by friends), but we haven't gone to them as yet.

We're with a fertility specialist already (alongside our clinic) who would do quite similar investigatory work, and who recommended we change clinics to our new consultant including to investigate possible immune issues. So we may have that type of work covered already.

We'll also be having our first consultation with a TCM/acupuncture fertility specialist next week who works with our consultant on foot of these results. So we have a few different irons in the fire! Will definitely look at Neo again though, and consider if they have an additional angle to add to our case, possibly looking into the inflammation and possible autoimmune issue.

I was diagnosed with IBS 20 years ago and at the time it was quite close to being Chrones apparently so that could be the cause, but I really felt like I had that under control which is why I'm surprised the immune markers were so high.

The puzzles continue!

Thanks for your help!

[soccerkt6 in reply to LewisLongbody]

Oh good, glad to hear that you have quite a team around you and that they're looking more into possible immune issues.

Besides the investigations and monthly hormone testing, I think Neo's use of low-dose naltrexone is really what sets them apart. They prescribed it to me after our initial consult (even before we signed up to a full treatment plan with them), so if you wanted to go down that route you wouldn't necessarily need to sign up for the whole package.

Best of luck with everything! xx

[LewisLongbody in reply to soccerkt6]

That's great to know, we'll add it to the list! Thanks so much!