Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

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

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

Also NHS fertility dr won't test me for NK cells as "don't see the point" wondering whether to pay private for this? Can anyone advise?

@elc19 that's a tricky one. If you have elevated NK cells they are likely to treat you with all the things you've already been treated with. That said it's definitely worth seeing a specialist in recurrent miscarriage so that they can do the relevant tests...

So sorry for your losses and sorry you find yourself here with us x

Thanks @KittyKatSmile that's why she thinks it's pointless but I've heard of being treated with intralipids? Hope I spelt that correct! X

Morning @elc19 I totally agree with @KittyKatSmile - you should 100% see a specialist like Dr S. there's nothing worse than being told "there's no point". There are all sorts of things that can be looked into. Can I ask what dose of steroids you were in and when you started them? My heart breaks for you and hope your next pregnancy is the one. All my best wishes.

@FrannyAnny82 thought I'd fill you in - I emailed the nurses with the hydroxy question to pass on to Dr S but the answer was (unsurprising) No to the hydroxy and if I want to speak to Dr S directly then I need an appointment. I kinda figured this would be the response but thought I'd ask anyway. I'm not sure if I'll make an appointment with him before we crack on or just see how this first cycle goes - it's a bit of an experiment really to look into egg quality which worries me everyday.

Thank you @Ultra26 I was on 20mg from about 2 days after BFP. I lose all my babies before 8 weeks. We see a HB then they're gone 😢 I've asked for a referral to Dr Shehata (hope I spelt his name correctly) and also to St Mary's but they just keep sending me back to my local gynae/hospital it's so frustrating xx

We also can't afford to go private so I just feel like we are drowning in this with no way out or hope x

I'm sorry you're going through this @elc19 but yes a referral would be great. One thing to say is the Dr S recommends we take the steroids from ovulation so before a BFP and if it's a positive to continue and if BFN to stop till next month.

So sorry that you are going through this @elc19 xx My consultant prescribed that I take 25mg pred from ovulation as stated by @Ultra26. I think it gives your body enough time to prepare for the baby then if bfn stop but if bfp carry on with the steroids. Did you have progesterone added to your meds?xx

@elc19 yes, that's the huge difference with Dr S, that he advocates starting at ovulation and not BFP. I started at BFP on my previous pregnancy, which I lost and he pretty much told me that was why. Delightful. So if you've got the pred anyway, it might be worth tinkering with your own protocol that way. Good luck to you, this is a horrid thing to be going through

Thanks for the update @Ultra26 and good luck with your cycle if you decide to go ahead with it 🤞 it's hard to know what to do isn't it, and the plodding on is so hard.

Has anyone had karyotyping done? Dr S doesn't do it but we would like to have the test as my husband's mum also suffered a load of miscarriages.

Apparently I need a referral but I don't know who to get referred by or where to get it done!

@FrannyAnny82 I had this done via the NHS. It's a simple blood test and probably worth you doing it if there's a history. I would say the waiting time for the results to come back is quite long we were told (no idea why) and it took 12 weeks in the end. Good luck. We've had a BFN today so officially on the ivf route now.

Sorry should have said this was suggested by the NHS recurrent miscarriage consultant.

I'm so sorry about the BFN @Ultra26 that really sucks. Test day is the worst 😢 and coming to terms with IVF is so tough too. We deserve a medal! Thanks for the info. I get my results from St Mary's in March so they might offer it then. Just want to get it done ASAP as we will go straight to IVF if there's a problem. Hope you're okay. Do something lovely for yourself today and take it easy xx

Hi, hope it's OK to pop in. I don't have confirmed immune / nk issues but have had 3mc and am over 2 years ttc. All my miscarriages have been within the last 10 months with the most recent an early loss last week.

As we've struggled to conceive, we're under a fertility clinic and just had funding come through for IVF, but feeling unsure if we want or even need this right now as we don't know why I'm miscarrying, seems a bit of a waste of our one and only cycle when I have been conceiving but then miscarrying.

I've been seen by my local recurrent miscarriage clinic and my bloods for lupus and anticoagulant are normal (my fertility doctor told me, so not gone into detail of the results but seeing the rmc at the end of this month). The only thing that was borderline was my thyroid which was 3.06, I was prescribed levothyroxine and conceived that cycle - coincidence? I took aspirin from bfp but lost the pregnancy 5 days later. The aspirin was on the recommendation of the fertility consultant - even though he said the rmc wouldn't recommend it...

We're debating private implantation tests with Professor Quenby at Coventry. Just wondered if anyone had any advice?

Thanks

@pickledsausage I’m really sorry - somehow missed your last message. How are you doing? I did lose my last pregnancy (started steroids at bfp) and Dr S told me it most likely because I hadn’t been on them since ovulation, though of course always possible it was a “normal” chromosomal mc. But I have other friends who didn’t take steroids til bfp and they were fine - it must depend on how aggressive your nk cells are. The levels also fluctuate and it’s possible that you can have a healthy pregnancy with no treatment whatsoever - Dr S told me that if I did nothing I still had a 15-20% chance of a baby (80+ with treatment). Best of luck to you!

@elc19 as I said above, for me I really need to be on the treatment from ovulation. If you’ve already got the meds you could try that yourself while waiting for the referral? Mr S’s plan is to take pred and progesterone from ovulation for 10 days and then stop if not pregnant.

@KittyKatSmile I've got Prednisolone at home as have some as back up for when I get my dwellings (angiodema) I'm just wondering whether to take a low dose of say 10mg a day anyway, but I'm worried about long term use harm and whether dr will prescribe more when I run out xx

@KittyKatSmile was meant to say swellings not dwellings!

@HarrietM87 ahh thanks so much for responding, I worried it may have been insensitive to ask. I’m doing well thanks, had my appointment yesterday, intralipids, blood tests and a quick internal scan that showed 6 weeks and a heartbeat. However I’ve had heartbeats before and it not worked out so not getting too hopeful! Started on the pred today, feeling very edgy 😬😬

Are you on the pred again now pre conception? How are you finding it and feeling?

@elc19 so sorry for your losses, that is heartbreaking.

@KittyKatSmile that’s harsh of Mr S! I’m in the same boat now, just started pred 1 week after bfp.

Hi @VenusStarr, I saw your message and thought you sounded a bit like me. We have been trying 2 years also and have had 3 miscarriages in the space of the last 11 months.

I just got my results from Dr S and I have high presence of NK cells and very high activation levels so am now on his complex plan. One thing he mentioned was that NK can cause ‘delayed fertility’ which is exactly what we experienced with nothing happening for the first year. I thought that was really interesting. So maybe NK could be worth you exploring also before you use your IVF cycle?

@Luckyducky2 I was thinking of you when I was in Epsom & hope your results meeting was ok. X

Thank you so much for replying @Crystal2020 I'm sorry that you're on a similar journey to me but pleased to hear you have a plan moving forward. That's really interesting about the delayed fertility.

I've contacted the Coventry implantation clinic, just waiting for them to respond... I'm totally impatient! Hoping we can get the biopsies done over my next 2 cycles.

Wishing you all the best 🤞 xx

@pickledsausage congratulations - great news! I always lose mine pre-heartbeat stage so I guess must be more aggressive at the early stages. Fingers crossed for a happy and healthy pregnancy for you! How old is your first?

Is anyone else doing SO? I had my follicle scan today and had 3, possibly 4 follicles, which seems like a lot! My lining was thin though which worries me, though it’s only day 9 of my cycle and I won’t trigger until day 11.

Does anyone know how much your lining thickens each day and whether it keeps thickening post-trigger?

@Crystal2020 so glad you have finally got some answers! So do you have to be on the plan for a certain length of time before you can try to conceive again or do you just start trying straight away?

We dont go back down to Epsom till the end of next week for our results. Have to say I've been feeling a bit deflated last week or so. The thought of jumping back on this merry-go-round of trying/testing/failing is just too much to think about. I dont know why I'm feeling like this, I've been full steam ahead so determined to fight this but I just feel totally drained by it all x

Hi @Luckyducky2 - so I headed off with all my meds & he said we can start straight away. I thought we’d have to wait!

I 100% know what you mean. I had been feeling bad anyway but was feeling even worse in the run up to the appointment. I’m actually feeling a bit better now I have a plan but def not as fired up as I’d like to be about getting going again! I hope you get some relief from getting your results too, keep us posted on how you get on. Xx

Pred experts...I'm due to start taking it next week but I'm a bit unsure about exactly when to take it. I use the Clearblue digital ovulation tests to track and when you see a solid smiley face, you apparently ovulate within 48 hours. So, should I start the pred when I see the solid smiley? Or wait 48 hours until ovulation has definitely taken place?

Not sure if I'm overthinking and it's just not an exact science but want to get it right if I can.

Thanks in advance for your help xx