Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

Thanks so much for your lovely messages! From reading this and previous pred threads it seems like there’s a really supportive community on here. Hopefully things will work out for all of us!

@Rebecca9876 Congratulations on your pregnancy! I know how nervous you must be but it sounds like you’re in very capable hands. Everything crossed for you!

@LookingforAnswers86 it’s the worst isn’t it! When doctors say stuff like that it just feels like the biggest fob off.

@Kittykat08 it’s so great you finally have answers. It’s just so frustrating being told everything is fine when you’re going through recurrent losses. Do you mind me asking what his complex treatment plan involves?

@LaurenAB94 thank you so much for the welcome! As soon as I made the appointment I felt like a weight had lifted. Best of luck on your journey!

@Whyisthistakingsolong thanks for your message. I’m so sorry for your losses too. It’s great that you have started treatment and hopefully it will make all the difference for you.

@NessyT91 I'm currently taking hydroxy, aspirin, the usual vitamins and also intralipids at ovulation and then every 4 weeks after a bfp. I did have a loss recently on this plan so I'm just waiting to see Mr S again.
I asked the ladies on here regarding the next steps and a few mentioned that Mr S might add pred to my existing plan. So will have to wait and see x

@NessyT91 oh and cyclogest from ovulation!

Hi ladies, I have recurrent miscarriages and would want to know whether you stopped trying when waiting for the nNK testing / biopsy being taken? Many thanks.

Hi @nevergiveuptrying I'm sorry for your losses ❤️

I've had both the biopsy and the blood tests and with both you have to not ttc. With the biopsy, you're tested on 7-10dpo and then it's 4-6 weeks for the results. You're supposed to have 2 biopsies but I never had my follow up because of covid.
With the blood tests, if you go to the CRP Clinic with Dr Shehata, it's a 2 weeks wait for your test results. I had mine last week and was given the all clear to ttc from then. X

@nevergiveuptrying so sorry to hear about your losses. I personally had the blood tests to check for NK cells and as @VenusStarr said we were also advised not to TTC until we had our results x

Thank you very much @VenusStarr and @Kittykat08 for your prompt reply! Much appreciated! I will stop TTC while waiting and treat it as a break then. Did @VenusStarr did the biopsy with Professor Quenby/Brosens or somewhere else? Many thanks!

Yes, with Professor Brosens @nevergiveuptrying he's lovely. It's a really simple process, you just call when you've ovulated to book in. The procedure is a bit uncomfortable but it's over very quickly. Fingers crossed it gives you answers :)

Hi @VenusStarr, thank you so much again! I will be seeing Professor Brosens too! Do you mind sharing any findings you had on the biopsy and whether there is any treatment, medication or follow up afterwards? Many thanks!

No problem @nevergiveuptrying :) the clinic will prescribe predisolone and cyclogest I believe. In your first appointment you'll have a consultation with the professor and then when your results are in a telephone call. I do know someone who was diagnosed with high uterine nk cells had treatment and is due in February.

There was a delay with my results because of covid, so I didn't end up getting them until June and had a zoom call with the professor. As my results were normal he prescribed cyclogest from 7dpo and I concieved on my second cycle but had another missed miscarriage. We spoke with him again in October and he said I could try steroids in my next pregnancy but because of covid and having no clinical reason to need / use them, he wasn't sure if the Hefa rules would allow it which felt a bit too vague for us as I'd have to get pregnant and then discuss possible treatment that might not be available to me, so that's when I booked to see Dr Shehata and had the peripheral nk bloods done and discovered that although I have a normal count, they're very aggressive. I'm using hydroxychloroquine and intralipids now. He believes my issues happen somewhere between ovulation and 6 weeks so I need to be on treatment before I concieve again. Hope that helps :)

Thank you so much for sharing, @VenusStarr. I wish you will have your rainbow baby soon!! The whole journey is just so exhausting and only those been through would understand!

Hi ladies, I'm freaking out a little tonight and hoping for some advice. I'm either 7 or 8 days past ovulation today and I've started bleeding. Not loads, but enough. I'm on two cyclogest a day so I'm hoping it's not pre-period spotting, but even so it'd be very early (period is due next Wednesday). Can I dare to hope it's implantation bleeding? Has anyone had that? xx

I'm sorry you're worried @Everhopeful35 I've not had implantation bleeding before, but 7dpo would be early for a period, so hoping this is a good sign for you. How do you feel in the morning yourself, do you have any cramping or anything? I wish we could have a window to see what's going on in there! Xx

Hi ladies. I’ve had a really sad last 24 hours as learned of the death of a close friend, so went into the scan today really worried and expecting more bad news to top off this awful year BUT baby is doing well!

Measuring great, strong heartbeat and hematoma gone so I assume that was the bleeding I had on and off. Lost twin still there but disappearing - we are still sad but have accepted it. Although still not 100% out of the woods, we feel like just maybe there is light at the end of the tunnel now. I would have hugged Dr S if it were allowed! I hope this gives hope to others.

@LaurenAB94 I hope today went ok?

@Hippo20 so glad the scan went well!

@VenusStarr just saw your question on cyclogest - I took it from ovulation as that’s what my plan instructed (perhaps that also follows the natural order of when progesterone normally starts being released?)

@Everhopeful35 I’ve never had it but that does sound like it could be implantation bleeding as it’s around the right time (and sounds too early to be period related?). I have everything crossed! xx

@Rebecca9876
Thank you

My results
Vitamin D - low
AMH - high
NK cells - high
NK activation marker = high
ANA - high positive

Treatment
Hydroxychloroquine till 16 weeks
Intralipids from ovulation , 4 , 8 , 12, 16
Aspirin throughout full pregnancy
Metformin till 28weeks
Inofolic throughout pregnancy
High dose vit D X2 until positive pregnancy test then 1 daily
Cyclogest 2 daily from ovulation until 16 weeks
Letrozole on CD 2-6 then Oridrelle to trigger
Omega 3 , high dose folic acid and prenatal vitamin throughout

Probably have to start In January to give steroids time to work and due to xmas hours the clinic will be closed 24th dec - 4th Jan so I'll probably have to wait till January to start S/O program

Thanks to everyone for their well wishes it's overwhelming but reassuring

I'm so sorry to hear about your friend @Rebecca9876 ❤️ very sad news. I'm thrilled that your little baby is doing well, this really is great news and good news about the haematoma. I'm sorry you seeing your other twin was disappearing 💔 You've been through such a lot but I'm hopeful for you.

Thanks for answering about the cyclogest - I got a positive opk and cramps yesterday so I am almost certain it was yesterday but my temperature hasn't peaked - mine usually climbs rather than shoots up. I think I'll start tonight then, eek the tww!

@VenusStarr good luck! I hate the tww - maybe find a good book or some nice trash TV to pass the time and try not to overthink symptom spotting etc (impossible I know!) x

Hey ladies,

Congrats to all those with positive scans. I am so happy for you and I wish the rest of your pregnancies go well. Xx

Good luck to everyone who is starting 2ww or starting on the plan. I keep my fingers crossed for all of you. Xx

@Rebecca9876 so sorry about your friend. Terrible news in the midst of this very strange year. :( xx

Really bad news on my end. My relationship is breaking down and we are not going to continue with the treatment until the situation is sorted, if it is. I am absolutely devastated. This is the worst I've ever felt in my life. I know there is hope that things will get better, but I cant see how. :(

That's great news @Rebecca9876. Really pleased for you but sorry to hear about your friend. How many weeks are you now?

Good luck in the TWW @VenusStarr 🤞

Your results sound very similar to mine @laurenAB94 - although my vitamin D was ok. Its reassuring getting results but as you say, overwhelming. Be gentle with yourself. X

Sorry @LaurenAB94 we cross posted. I found it massively overwhelming, but it so good we can all share and reassure each other here ❤️

Thank you! @KtAgs

I am so sorry @Lalaifa I'm devastated for you. I hope you both just need some time out and it's a bad patch and that you can work through this. Sending you lots of love ❤️ ❤️ xx

@rebecca9876 sorry yo hear about your friend. This year has been so cruel. But fantastic news about your pregnancy!

@Lalaifa v sorry to hear. These fertility issues certainly put a strain on relationships. I hope you heal. There are many ways to create your family if you want to xx

I got my embryo testing results from my last mc. It showed trisomy of chromosome 16. At least I have an answer I guess, but now worried about translocations etc while waiting for karyotyping results for me and DH. Altho we already have a healthy DS, so my consultant (nor Mr S) said its v unlikely.
There's always something to worry about on this journey isn't there 😭

@KtAgs did you have a positive ANA? If you did do you have a known autoimmune disease? I'm hoping his plan works for me in the new year

@VenusStarr thank you.
@Lalaifa I am so sorry I really hope it's just a rough patch it's such a hard journey emotionally and increased stress with Covid.

@Everhopeful35 I've had implantation bleeding in one of my pregnancies and it was brown in colour apparently if it's light pink or brown then that implantation where as red is period is what the hospital told me not sure if this helps?

I'm sorry the genetic report has caused some worry ❤️ @Whyisthistakingsolong have you had parental karyotyping done? Ours took about 5 weeks to come back. I'm still waiting for our chromosomal report from my last pregnancy, it's been about 8 weeks now. I'm quite anxious to get the results. X

@Rebecca9876 such sad news about your friend :( I am so happy to hear the scan went well, I was thinking of you earlier! 10 weeks is such a great milestone to reach 🙂

@LaurenAB94 that is some list 😂😂 although most of us are on the same meds!

@Lalaifa I am so sorry to hear that :( I hope you guys can work through it. Miscarriages really do add such extra stress and upset...

@Everhopeful35 I have never had bleeding before a BFP but if you never spot usually it sounds like implantation bleeding to me🤞🤞

@Whyisthistakingsolong I was worried waiting for karyotyping results for us too but it really is a tiny % and even less likely if you have a child already.

@venusstarr good luck with the TWW. I received our results the day I ovulated so we decided to hold off until next month but it feels like ages now and I am impatient 😂😂😂