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.

@VenusStarr thanks all went fine.

Hope everyone's feeling ok today

Hi ladies, how is everyone doing? @VenusStarr I'm sorry to hear you found out the sex. That's so hard and makes the loss even more real. Look after yourself 😘
@NICK7nick7 Did you manage to get your intralipids?
@rainwillmaketheflowersgrow So sorry you find yourself here but hopefully you'll find comfort and support from this lovely group of women. Good luck for your appointment tomorrow - let us know how it goes.

And good luck to anyone testing soon - I hope it's your month.

Update from me: bleeding has stopped, which is good, and morning sickness is awful. But I'm so scared of bleeding again that I've barely left my bed or the sofa. Really really nervous about the scan on Tuesday now, but I think it's sensible to go given what's happened in the past few days. I'm being scanned by someone called Radhi Viswanatha - anyone have any experience of her? x

@Everhopeful35 pleased to hear the bleeding has stopped. I’m having my intralipids as we speak!

I was scanned by her when I had my last miscarriage and she was very good. She phoned Dr Shehata whilst I was there so I could also discuss with him.

@Everhopeful35 ah I know this feeling, I also didn’t leave my sofa/bed much at all at first and now I am still like a sloth. Just listen to your body and don’t worry about pushing yourself. Are you fed up with day time TV yet? ;)

I’ve also had Radhi before (and she’s doing my scan next week while Dr S is on holiday) - she’s very nice. I got upset earlier when I learned I wasn’t seeing Dr S next week (didn’t realise until they sent me the reminder email today) but they caught me at a bad time (do you find you have really down days too?)/ I initially felt that I needed the support of Dr S himself next week, but I’m fine about it now and you shouldn’t worry at all. Laura told me she works side by side with him at the NHS and always covers his holidays, so is totally up to speed. X

@NICK7nick7 Great that you're in for your intralipids 😊 Thanks for the reassurance on Dr Radhi too.

@Rebecca9876 Totally know what you mean about daytime TV - I've just found myself watching Supermarket Sweep!! How is your bleeding now? And how many weeks will you be at your scan next week? Hope you're feeling a bit better. xx

@Everhopeful35 hahaha! My thing has been Escape to the chateau DIY 🤣 It’s now stopped which is great. I’ve said this before and it’s started up again, but hoping this time that’s it. They dated me slightly ahead at the 12 week scan and I’ll be 14wks,5days then. If it goes well and I have no more bleeding I think I can start to relax a bit and enjoy the pregnancy :)

I’m so hoping you get to this point too, I really feel you will althoguh I know the bleeding has been very worrying. I have everything crossed for you! xx

*although.. ;)

Had my BFP this morning .. well yesterday morning (very faintly but was only 9dpo but was too eager to wait another day 🙈) but confirmed with a nice dark line this morning.
Booked in for intralipids tomorrow.
I have a quick question for those on the complex plan - I do double my aspirin now don’t I? I can’t seem to find my plan paperwork right now so thought I’d check.

@Jellystar23 congrats!!!! No I don’t think so - low dose aspirin is fine but higher doses aren’t good in pregnancy. My dose (low) on the complex plan certainly didn’t change upon a positive result x

@Jellystar23 Lovely news 🥰!!I have everything crossed 🤞🤞🤞 re aspirin no I thought everyone was just on 75mg, I think you just stick with it (that's what my plan says anyway:))

@Jellystar23 my plan is 75mg once daily until 36weeks 😊 xx

@Jellystar23 just checked mine says 75mg once daily until 36 weeks but at 12weeks gestation we will double the dose to 150mg to reduce the risk of preeclampsia so now I'm not sure, I'll have to ask him xx

@LaurenAB94 that’s interesting. I just checked mine and it is low/75mg until 20 weeks when it says stop unless advised otherwise. But at 16 weeks it also says there will be a discussion about stopping then. I’m actually off it (came off at 5 weeks when I had the hematoma bleed and won’t go back on it) but it looks like the plans are all very individualised. @Jellystar23 maybe best to double check your own plan so perhaps email the clinic tomorrow if you can’t find a copy? X

Thanks all 😊 didn’t think I’d be this chilled, I thought I’d be on edge so 🤞🏻 this feeling continues!
I’m sure mine said to double, but I’ll stick with 75mg for tonight unless I find the sheet and ask at the clinic tomorrow. Thank you all for answering xx

@Jellystar23 yes he is so unique in the fact that everyone's plan is individualised but I know some people do have to go onto a stronger dose of aspirin. 75mg will be fine for tonight and then tomorrow I'm sure the nurses can ask him for you or did you get an email with you clinic letter it might say it in their? I'm very pleased for you I hope all goes well with your intralipids tomorrow x

@Jellystar23 congratulations! Lovely news! My complex plan also says 75mg, and I have Factor V Leiden.

Hey, was just catching up on everything - wow what a rollercoaster...Massive congrats to those with new bfps - and so happy that you and baby are ok @Everhopeful35. @VenusStarr I'm so sorry, that sounds absolutely gutting to find out 💛 hope you're ok.

@rainwillmaketheflowersgrow my husband is a teacher too, and I'm planning to go to dr S some time in the new year, for the first time. I'm currently with ARGC clinic and on a humira plan with them but having spoken to the lovely people on this thread I just knew I'd end up going to Dr S. Anyway, ARGC just said I had to be cautious re covid when taking humira, there isn't much else we can do really! I guess that's not the same as taking steroids but would be interested to hear what he says to you about this 😊

Hope everyone's ok and looking forward to some kind of break at Christmas x

I’m on 75mg of aspirin till 20 weeks but I’ve just seen Dr S and he said I can stop now at 17wks.
But definitely worth checking your plan.
Hope everyone’s doing ok congrats to the BFP this week fingers crossed for everyone else testing this week ❤️

Hi ladies!

Just had my results appointment! Feeling pretty overwhelmed! He picked up 7 issues. Both thyroid antibodies were high - one 10x normal. Both antinuclear antibodies high, NK activation very high and toxicity high.

He also did a scan because I've been worried about my lining and discovered I have PCOS. Which I've been checked for 3 times by the NHS and somehow they missed it!

So I have hydroxy, intralipids, aspirin, metformin and inofolic alpha

We can start trying next cycle. I'm due to ovulate on Sunday so he felt that was a bit soon given my levels

So relieved we have answers

Hope you're all well!

X

Had a new plan printed today 🙈 (you‘d think for the amount it cost me in tests - I’d be able to look after a piece of paper a bit better 🙄) I’m on double aspirin until 36 weeks 🤞🏻 It must have something to do with Mr S thinking I have CHI which clots the placenta but thank you all for your help.
Had my first intralipids today - anyone else have the intense burn when they flush it out at the end? Wowzers that was an unexpected stinger!!

@rainwillmaketheflowersgrow
Glad you had some answers, It helps to make it all worth while but can totally understand how overwhelming it must have been to hear the results. I’m sure another lady mentioned a few weeks ago that the NHS missed PCOS with her also - I wonder why that is?!
🤞🏻 For a fresh year, full of success for you xx

@Jellystar23 thanks hun! What time were you there? I wonder if we were there at the same time!

@rainwillmaketheflowersgrow that does sound overwhelming, but also really positive that they have found the problems and can so something about them. Terrible that the PCOS was missed :( .

@rainwillmaketheflowersgrow I'm the same as you've I've had several CT scans and 4 ultrasounds , one where my GP sent me because he thought I had PCOS and they said I haven't.
I've ended up making a complaint with the NHS as they wouldn't prescribe the meds for me and it was getting so expensive I understand the steriods and stuff but wanted to get metformin for my GP , they've seen Dr S scan photos and can see I have PCOS so doing an investigation as to why it was missed so many times but I still have to wait for it to be confirmed by NHS.
I had to wait a month before trying again so the metformin could get in my system so I bet it's the same for you it goes quick and because you have a plan and your starting your meds it makes you feel like your still doing something in the right direction. Be warned the metformin made me feel crappy for a few weeks I did get used to it and feel fine now , I had no side effects from hydroxychloroquine

I've lost all faith in them now with them Im so relieved to be under Dr S plan now and just hope I get my BFP soon.
Xx

@rainwillmaketheflowersgrow I was there from around 2pm but mainly in the intralipid room. If you were, I’m the one the nurses dread coming in as I don’t have any accessible veins 🙈 Mr S himself has even had to try once with no luck 😂