Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

@Welshlady89 oh wow, thank you for replying. Stories like that are so so good to hear. I hope I have high TNF A cells now!!. I just googled them and I really don't understand them at all! Awww your 12 week scan is sooo soon...that's really exciting but also soooo nerve racking. How have your scans been so far? I think Dr s sees pregnant patients fortnightly doesn't he? I remember being so so frightened at every scan with my son as I was soooo worried something would be picked up but when I could feel him move around it was much calmer. I really hope it goes well and you get to officially "announce" to all your family and friends, please keep me posted?

Hi everyone,

I've not posted before. Tentatively reaching out and hoping you might be able to give me some advice please.

Firstly, I am very sorry for all your losses and struggles. I share in your pain and admire your strength and perseverance. Also massive congrats and best wishes to those of you who are pregnant or have had your rainbow babies.

I have been ttc for 6.5 years and have had various fertility investigations and treatments (including IUI and IVF/ICSI) and 3 miscarriages along the way. I am fortunate to now be in a position where I have 3 embryos in storage, ready for a FET. However, my Consultant first wants me to have further miscarriage investigations, including the NK cell assay and TH1/TH2 cytokine profile (I have already had all the NHS/Tommy's tests plus the antiphospholipid syndrome and thrombophilia tests - all fine).

I'm with Care Fertility and they have quoted me £1,374 for the immune testing. My understanding is it is sent to the USA and results take 4-6 weeks. As I hurtle towards age 40, and with ever increasing fertility costs/debt, this is both a cost and time delay I'd rather avoid if possible.

I've done some research and have come across the Reproductive Immunology Centre in Croydon who appear to do the same profile for just £700 with results in just 48 hours - sounds much more like it!

I wonder if anyone has any experience or knowledge of RIC? Or if you can recommend anywhere else for the testing? Or any general thoughts/advice on the test please?

Many many thanks!

@Sezmarelda1 aww that's great news to hear all is going well for u x
I had my nhs scan yesterday and they dated me as 12 +5 days. They done the downs screening so waiting to hear the results 😬. My next scan with CRP is with professor Akelokar next Thursday. I always find crp and nhs always give me different dates. Did you find that also?

@Zest11 aww thank you x

@StillTrying10000 oh my goodness I do not know how I missed this news! Many many congratulations 😃. I wish you and you adorable baby a quick recovery! So happy for you both xxx

Happy New Year to all. It’s so good to hear things are going well for some of you @Sophi81 @Sezmarelda1 and wonderful news @StillTrying10000! Also thinking of those who are still struggling to fall pregnant. I think I’ll be in the same boat when we can finally ttc again, as it never happens easily for us.

Sorry @Faithhopelove83 I have no experience of RIC. From my research, I wanted to go with Dr.S because he looks at how your NK cells respond in a pregnancy state, which for me felt important after a tricky first successful pregnancy and losses since. He is very expensive however.

So I’ve got my follow up appt with Dr S in a few weeks time after completing my Humira and I’m also on Hydroxy.

I was wondering if anyone here with Dr. Shehata has been prescribed Fragmin as part of their pregnancy plan?

I know he has recently dropped the anti-phospholipid and clotting testing from his panel, after the paper he wrote has been published proving no increase to the risk of miscarriage - however - he has suggested CHI (Chronic histiocytic intervillositis) might be an issue for me, which is something to do with my body’s immune system attacking the placenta and causing clotting. From my research blood thinners as treatment seems standard… I’m wondering if he’s generally not prescribing Fragmin now off the back of his own research, or if anyone here is still using Fragmin or other blood thinners - and if so why?

I was also wondering if anyone here took dhea and melatonin for low AMH and egg quality whilst trying naturally? As per ‘It starts with the Egg’?

Tia xx

Hi @HopefulH they prescribed me fragmin, however that was due to going down to IVF route (I’m still not really sure why I was on it) but I don’t see you having any issues getting it from them

Hey @Faithhopelove83 so sorry to hear about your journey. I have to say I'm not an expert but I did listen to a podcast with Dr Shehata who is the doctor a lot of us on this thread see at the CRP clinic in Epsom. On the podcast He was very sceptical about using US clinics for testing If you're in the UK as the specimens would likely not be in the best state by the time they got there so results might not be as accurate as they would be if you used a clinic in the UK. There is a Chicago clinic that gets talked about a lot which I'm sure is excellent if you're in the states but might not be so helpful if you're not (I'm assuming you're not I might be wrong!). Totally go with your gut instinct but if you can speak to someone closer to home to get the tests you need it might save you time in the long run and you'll have more reassurance. Good luck with everything!

@HopefulH I've not been prescribed fragmin I'm afraid so can't be of help but I can't imagine they wouldn't give it to you if it was something you needed.

@comingsoon786110 so sorry I missed your post. Dr Edge told me to start taking it as soon as I saw my positive OPK so I started the following day basically. Hope you're getting on ok with everything? Are you with the CRP clinic? I've felt sooo tired recently and wondering whether it's a side effect to the meds but I could just be recovering from a busy Xmas.

Hi @Hayley220 so sorry to hear about your losses, sounds like we're been through similar journeys with secondary infertility. It's a rough ride and I hope you've got lots of support around you. I'm nearing the 1yr mark since we started trying for #2 and three miscarriages later it feels like it's never going to happen and I just feel so sad about it. I know I'm so lucky to have one already and should just feel grateful but it's hard when you've got your heart set on another and a sibling for your child. I hope you get some answers soon, I did have the NK testing and it flagged quite a few things so I'm hoping it's going to be the miracle solution I've been waiting for. Sending lots of luck for 2023 to you and everyone else reading this going through a difficult time.

Thankyou @Maxime34 where did you have your nk cell testing? My results are Monday I feel nervous but so eager to find out. Have any of your losses been genetically tested? Xx

Hey @Hayley220 I'm with the CRP clinic in Epsom. They were all very early losses which happened naturally so non of them were tested. I hope your results are positive and you have some answers on Monday! X

Hi all,

Happy New Year! Would you mind if I joined this thread? I've been under Dr S care via the NHS since Oct 22 and woukd be lovely to connect with others on this difficult journey!

Hi @HopefulH and @Maxime34 - Thank you both so much for taking the time to respond and for all your help and advice :-)

@HopefulH - I'm just beginning to explore this topic but that makes perfect sense what you say about the importance of looking at how the NK cells respond in a pregnancy state - and it doesn't look like the RIC profile covers that. So thank you, that really helps! At the moment, I'm just looking to have the test done, but I will consider Dr S if there is an issue and I need any treatment. The explanation for our first 2 miscarriages was sperm DNA fragmentation (after initially being diagnosed with "unexplained infertility" for years). I think the 3rd miscarriage was down to a hormonal imbalance after a long protocol IVF cycle on max stimms (I wish now I'd done a freeze-all cycle, but I got bad advice). But our Consultant wants me to have the immune testing just in case...
All the very best with your follow-up appt with Dr S in a few weeks time.
Re your last question, I will try to help with this. I would recommend getting your DHEA-S tested before supplementing. I got tested (per 'It Starts with the Egg') and my levels were fine, so I didn't supplement. Interestingly, it's not something my fertility consultant mentioned. What he did advise me to take for egg quality was - CoQ10 600mg, Resveratrol 600mg and NMN 500mg. I believe this (together with work we did on DH sperm quality) vastly improved our 2nd IVF cycle results (egg quantity and embryo quality). I hope this helps.

@Maxime34 - That's really interesting that Dr S is sceptical about using US clinics for testing if based in the UK (I am in the UK). I am still agonising over whether to go with my local IVF clinic for the test (test already booked for this Tues, before I started researching) or whether to do a bit more research and perhaps travel to London for it (e.g. to CRP). We previously got DH's sperm DNA fragmentation test done at our local IVF clinic, but we knew once we got the results that they were out of their depth and we needed to source our own expert advice/treatment, so we ended up under the care of the infamous Mr Jonathan Ramsay in conjuction with our clinic. So I'm not sure whether again in this instance to test at our local IVF clinic and then only get expert advice / treatment (eg from Dr S) if the results show an issue - or go straight to the expert for the test. Could you possibly send me the link to Dr S's podcast you mentioned, please? Thank you, and all the very best to you in conceiving #2.

@Faithhopelove83 I think this is the podcast that was referenced

https://open.spotify.com/episode/7eQPTjV8nd4HnVWSZOPmyC?si=VpAF44mbQg2sq4ofYWOnRA

I felt reassured listening to it!

My message was v brief earlier and very sorry that that you're all on this rollercoaster. A bit of background on my situation:

- had a son on 2017 - had no issues

- Pregnant again in Dec last year - had a miscarriage in Jan and subsequent MVA. V physically traumatic but put it down to bad luck

- Pregnant again in April but miscarried between 7-8 weeks and there was a heartbeat

Had all the tests done by Dr S and have v high NK cells - which makes sense as I suffer from Crohn's. Put on treatment with Hydroxychloroquine, Cyclogest and Asprin. Managed to get pregnant 1st time being on treatment but had a chemical pregnancy last week. This one has been difficult to deal with and can't help but think the treatment won't work.

Thanks for sharing the podcast @SReyn I found it very interesting and helpful to understand a bit more about this very complex topic.

So sorry to hear about your chemical on the plan I can't imagine how hard that must be for you. Have you spoken to the clinic?

Thank you @Faithhopelove83 good luck with your results. X

@SReyn Thank you for the podcast link! I'm so sorry for your losses, they are so hard. It's easy to get despondent and think that treatment won't work, especially after repeat failures, but I really hope it works for you. All the very best xx

@Maxime34 Thank you :-) xx

Thanks @Maxime34

It's been quite hard to pick myself back up from it as it was a bigger blow than I expected. The clinic said that it's impossible to know whether it was because of the treatment not working and could have been an abnormality.

They've said I should carry on with the treatment plan and booked me in for another appointment in april to assess whether I need steroids added. Have also said I can try again.

Sometimes you need that bit of reassurance to give you the boost to try again but I think they're so busy that the communcation is quite matter of fact and direct.

I'm not sure if others have gone on to success with just Hydroxi after a failed round?!

Hi everyone happy new year to you all - I really hope this year is everyone's year, it's so sad to see so many people in the same boat on this cruel process.

I've got an initial consultation booked in with Dr S in a few weeks time and this thread has been super helpful - thanks to you all!

I was wondering if anyone has a list of any tests that could be done via my GP to save on some costs? Also does he give you a private prescription to take elsewhere if you wanted or do you have to get the meds from him?

Like you @Zest11 I was also wondering what others' views are on Dr S helping with implantation failure and whether he can help or what he puts in place to help you get pregnant in the first place. I've already had ivf which hasn't worked for me so now wondering if trying naturally alongside his 'cocktail of drugs' is the way forward..

My brief background : I have been ttc for 4 years, unexplained infertility. Had 4 IVF transfers, 2 egg retrievals, 3 of which failed to implant completely and my first ever BFP in 4 years (from 3rd ivf cycle) was a chemical. My issue is not getting pregnant to begin with, which is why I am now down this rabbit hole of looking into immunology.

The only thing I have tested positive for so far are antinuclear antibodies, which doesn't really tell me much as my consultant seems to think it wouldn't affect anything.

Wishing you all the very best wherever you are in your journeys! 🍀

Hey everyone..
Just got home from my appointment at Epsom Nhs.
Everything else was normal apart from Nk cells test which showed levels of 374.5 (normal below 200) and total activation CD69 1.61 (0.8 was the normal number they gave me)

They have prescribed hydroxychloroquine to start taking asap and progesterone from ovulation each month.
They haven’t prescribed me steroids and I am worried about that.
The consultant I was supposed to see was off unwell so I had a man who usually works on labour ward who apparently used to work at that department.
He was unsure on what days and doses so he got Allison in (a midwife there who works on the RMC) to confirm everything. I asked her why they wont prescribe me steroids and she said they look at the whole blood test result, how many miscarriages I have had, and suggest just the hydroxychloriquine for now and if I am to miscarry again they would look at steroids.

Just feeling a bit nervous about it all, and worried my numbers are so high.
Has anyone had success on hydroxy alone?

Wondering now should I be seeing Shehata privately to get the steroids.
He is just so expensive!!

Also really worried about the side effects. Particularly if I took a “loading dose” which is double for the first 2 days. Anyone have advice/experience on this?

Hi @Hayley220 ,

I'm a little ahead of you in the process - was put on the exact same treatment plan in late Oct. I also have v high NK cells of over 300. I've had a chemical pregnancy on first month of trying and Alison has booked an appointment for April to review whether steroids should be added.

She has said that it doesn't necessarily mean it was because of high NK and treatment not working but an abnormality.

Can completely understand wanting to throw the kitchen sink at it and avoid another MC! I do have a friend who was put on exactly the same treatment of just Hydroxi after 3 miscarriages who is 7 months pregnant.

On the podcast I pasted Dr Shehata does say he doesn't like mixing NHS and private. You almost have to pick one route or the other but I haven't asked personally.

Hope that helps!

@Maxime34 hi there and thanks for responding!

Yes I am with Dr S between Harley Street and Epsom. I'm currently on the complex plan with HCQ, Pred, Omeprazole, Intralipids, Cyclogest and Asprin (plus all the other vitamins).

I've had one second trimester loss and 3 CP's and we started trying again this month. Something odd did happen though and I could really use some further info if anyone has something to share. I got my LH surge on Tuesday meaning I would have ovulated on Wednesday and then it dropped back down and then on Friday i got another surge which was even higher than the previous one and then it dropped back down again. This has never happened before but there's a lot of conflicting stuff on the internet as to what it could be...

Because of this I am either 6dpo or 4dpo but according to my cycle I should be starting my period this Saturday.

any advice would be much appreciated xx

@Hayley220 I have just found this post and I’m in the same situation as you. I’ve had 1 D&C + 2 miscarriages. I have just got my results back from Epsom hospital and have high killer cells. I’ve been put on progesterone, hydrox, aspirin & vitamins. I was just wondering if you have started your steroids yet? I’m on my second day today and worried about the side effects

@Hayley220 @SReyn i have been reading your posts and I’m on the same medication as you both hydrox, progesterone, aspirin & vitamins. I found out I was pregnant before receiving my test results as my appointments at Epsom kept getting cancelled. I have just started the treatment at 4 weeks pregnant so hoping for a miracle after 1D&C due to chromosome abnormalities at 13 weeks and 2 miscarriages

please keep me updated on how you both get on with the medication. I’m only on my second day of hydrox but they have doubled my dose for the first 2 days due to already being pregnant