Immune/NK issues - aka Pred Thread no. 21!

[Tee4me]

Roll call for all moony faces!! 🌝🌝🌝

Waiting for our rainbows 🌈❤️💛💚💙💜

Tee4me
Age: 34
TTC DC#2 since December 2015
x2 MCs (second was 'missed')
DS turns 5 this month 😱
Seeing Dr Shehata - diagnosed with Hypothyroidism and aggressive NK cells
Currently on cycle 2 of Pred and week 6 of Thyroxine
CD10, expecting to ovulate at the end of the week 🤞🏻🤞🏻🤞🏻

Hi everybody, sorry, guilty of dropping off this because of the Facebook group 😱🤦🏻‍♀️
Congratulations Bala! Dr S certainly does have a good track record!
Ferntwist the only thing I've read is that adrenaline can block receptor sites for progesterone, I make a conscious effort to make sure I keep things calm in the 2ww! Although I think the stress would have to be pretty extreme to cause MC?
Schnitzel I think CBT is a great idea. I think sometimes I might need some kind of therapy. Having said that, my acupuncturist has a lovely holistic approach, so that's almost been my therapy for the last few months!
Drttc so glad things are progressing well for you!
x

Congratulations Bala What a beautiful moment for you and DH

Awww that's a fabulous response and just the kind you want!! So happy they they're as happy as you (of course they would be!). And if SIL's get arsey - fuck them!! Their own miserable mind that suffers!!

drttc I'm so happy for you! Of course they were delighted! Hope telling the SILs went ok!

I've told most of my friends now - it's starting to feel real!

Hello to everyone on this (hopefully) lucky board and thank you so much for your thoughts about how stress might contribute (or not) to our miscarriages. Very interesting theory Tee about adrenaline blocking progesterone receptors.
It's so difficult to know how much to cut down.
How is everyone feeling today, any news?

Yesterday 14:52 Adrya

Hi all, can I join your thread please - I am making my way through reading your great stories (very new to mumsnet).
Here's my story: I had 4 early miscarriages in 18 months (between 5-7 weeks), and have been referred to Dr Shehata through NHS. Have been diagnosed with high NKC (total number and % are over the normal, NCK69 are within normal range through) and have been put in 25mg Prod / baby aspirin/ vit D3 and the usual Pregnacare which I have been taking anyway. Have been on the steroids for 5 days now and apart from agitated sleep I haven't had any other symptoms, especially the hunger some people mention - I seem to have the opposite, where I feel full all the time! Just wanted to hear some success stories I guess, as this NKC therapy appears to be quite controversial? Thanks in advance and wishing everybody good luck with TTC.
Adriana x

Hi @Adrya Hun, welcome!

Sorry you’ve had so many losses, certainly sounds like classic NK mischief!

So you are on Pred full time? Or just from ovulation for 10 days? I didn’t get any hunger the first 2 cycles with the Pred, but now I’m hungry - I am also 5 weeks pregnant today so could be that too lol!

Loads of the girls here have had incredible success with Dr S and the steroid/progesterone/aspirin etc treatment - you are in th best hands now poppet and we are here for you for advice and support!

Thanks for your lovely reply, LunaB! And feeling more hopeful when reading some of the stories on here! Big congrats to you!
Keeping everything crossed that it works for us! I am taking Pred from ovulation day for 10 days, than I'm supposed to test and stop if negative. I have emailed Dr S's midwife for a bit more clariry if I get a positive after the 10 days (I didn't get one this early with any of my previous pregnancies), and waiting for a response - just worried that if I stopped and I find out I'm pregnant on day 14-15, as before, it might impact the potential success. You mention you've been on it for a previous cycle, were you on the same plan as me, if so, any advice on the 10 days window? Thanks again x

Hi adrya!

So sorry for your losses. But you're on the right path now, I'm sure you'll have success soon.
I'm a bit of an old hand at the regime - currently 17 weeks pregnant with my second DrS baby.
Last pregnancy with my DD took 6 cycles. This one was actually while not really TTC, although I did have an appointment planned to discuss TTC with DrS. Any way - this current pregnancy I started the pred late and have been fine, lots of others have too. One of our lovely ladies is also currently going (successfully) drug free with baby #2.
Don't worry too much if you don't get a bfp at 10dpo, stop the pred and then get one a few days later. The pred builds up in your system a little bit so you should be absolutely fine with a few days off of it.
Any other questions, fire away. Good luck Hun!

Hi Seekingmiracles, thank you so much for the reassurance! And many congrats on your two successful pregnancies!
I think I am driving myself crazy a little bit, reading lots about NKC, and comparing with my case, which I'm not entirely sure it's good! Like just earlier I read that for most ladies on threads like this the CNK69 are over the normal limit, and they are the ones with success stories, where my CNK69 number is normal (0.6 count), but my total number and % are high, so something new to worry about
Just wondering if anyone on here has a similar diagnosis? Sorry for all the questions ladies! xx

Just having catch up, sorry I’ve been awol too.

@Bala that’s great news! Glad it’s all looking very positive for you. What a lovely moment you and DH had together. You can look forward to plenty more of those :)

@Ferntwist, I got singed off sick at about 6 weeks pregnant and it’s been great tbh. Lots of lovely therapeutic country walks and time with Mum and Sis. I’ve had many worries through pregnancy but Work thankfully hasn’t been one of them.
With regards to stress, I’ve been very stressed throughout this pg, very badly in the first 8-10 weeks but all is ok here. I think worrying about stress can exasperate it which is annoyingly unhelpful. Stress when TTC I think can be a bit of a shit though as can upset your cycles :/

@SchnitzelVonCrummsTum Yes I’ve started seeing a lady that’s going to try some CBT with me. It’s quite common for women like us to have PTSD and I rate high for that and anxiety- only really since I’ve been pregnant again. She’s started me with some controlled breathing mindfulness. I have relived past events many times during this pg- it actually sounds like you may be suffering PTSD too.

@Drttc That’s awesome that the in laws responded so well! And so they should, it’s fantastic and well earned news. Lovely to hear you are doing so well 💕

@Adrya Welcome! Sorry for your shitty experiences. You’ve landed yourself in the perfect spot for personal success on the baby mission AND success stories.
3 x MC’s here, (1 chemical and 2 missed) over 5 years (we had TTC breaks) 38 years old now, high nks, APS (sticky blood) and now almost 20 weeks pregnant!
I was on 10 days of pred which I took from ovulation and I tested not pg at day 9 so came off until day 14.
I still have risks all the way through due to APS but if you just have those issues it sounds like you’ll be in the clear on the meds after around 12 weeks 🙌🏼
I’ll take a shot of my NK test results for you as admittedly I’m not entirely sure about the different types you’re talking about 😖 x

xxx

@Adrya What I would say about NK cells is that It may not be worth spending too much time trying to unravel their mysteries.
Many fab specialists and scientists don’t believe the pred works to calm the NK cells, only that it supports the womb or maybe the pred helps in different ways to support the pregnancy. My belief is most unsuccessful pg’s When on pred for nks are due to chromosomal abnormalities or another less common hidden issue.
I’ll bet this plan will work absolute wonders for you 💕
I just checked and had high CD69 x

Thank you so much all! Lots of reassurance, so pleased I found this thread🤗
I will be 10dpo on Sunday so will be testing then, and I'll stick to Dr S's plan and stop Pred if negative, but keeping everything crossed that I get a positive either on Sunday or shortly after, and I will resume taking it. We were very lucky to get pregnant pretty much at first try during the cycles we were ready to try, so hoping that will carry on. Although my obsessive reading has now revealed that in some women steroids might affect fertility, so something new to worry about now! I HAVE TO STOP READING!!! Sadly neither of the little beans stuck, so praying the next one will!
Thanks again and hoping we all get out little miracles soon xxx

@Adrya, yes do try to stop reading - easier said than done! 😂 There’s always that 1% of people that have terrible experiences and they are the people who naturally want to share online, I think.
I remember about 4 weeks ago furiously googling ‘can you miscarry from constipation?!’ Everyone said no apart from one man who said his wife did, at the time I was like OMG no! Now I realise sadly that MC was probably in progress anyway :/
Some feel pred can mess with your cycles, that’s what may ‘affect fertility’ I’m guessing.
Since I’ve started visiting this thread at around 5-6 weeks pg (I think) I can count 7 people that are now having successful pregnancies and 2 further that have given birth! (One is having c section today!) all of us had multiple mc’s before we sought treatment, hope that helps!
It’s so hard to try not to worry, but save that for when you get your lovely BFP as the worry wobbles are almost an inevitable part of the pg journey for us
Xxx

Thanks JustLa, great to hear so many successes out of a small group of people- very encouraging!
And congrats on your pregnancy, how far along are you now? x

Hi lovely ladies, another question from me - was just chatting to a nurse and she mentioned that when you're on steroids it can mask your pregnancy symptoms almost completely, have any of you experienced that? I've had very standard symptoms with my previous failed pregnancies so knew I was pregnant even before testing, so wondering whether that might change now I'm on Pred? Thanks in advance xx

Hi adrya sorry I've fallen off this thread recently! I'm another Shehata success - 3mcs all conceived first try (2 in consecutive months earlier this year which was tough). Then I started the pred and conceived 2nd cycle, now almost 15 weeks.

In my other (failed) pregnancies I had loads of symptoms - terrible nausea and sickness and sore boobs - but have had none of that with this pregnancy (apart from some occasional nausea) so pretty sure that's down to the pred. Have felt exhausted though! Sadly the pred and progesterone bring their own side effects - mine have been extreme hunger, weight gain, bad skin and terrible wind! Can't believe my DH still likes me!!!

Tomorrow is my last day on pred though. You've definitely come to the right place on this thread - loads of knowledge, experience and support here!

Hi Harrietm87, thanks for your reply, congrats, so great to hear your success story! The more I'm on here the more hopeful I get! And so sorry to hear about your 3 miscarriages. Similar to you, we had 4 miscarriages, fell preg at first try. First cycle now on Pred and meant to test on Sunday, so keeping everything crossed! I have only been on Pred for 8 days now and apart from taking a bit longer to fall asleep, I've not noticed any side effects, if anything I feel less hungry- but I suppose it might be too early for full blown side effects- I won't mind them if it gives me a successful preg! Again keeping everything crossed for Sunday or shortly after! x

Hi Adrya! I'm on my third cycle of Pred after being diagnosed with normal number of NK cells but more aggressive than normal. Dr S also uncovered that my TSH was on the high side (Hypothyroidism), so have been given Thyroxine too! I'm 9dpo today and due to test Sunday! If you are taking your (potentially) last dose of Pred on Sunday, why don't you wait until Monday FMU to test? Just gives an extra day's grace to see a line (I'm also concerned 10dpo is pretty early which is why I go for 11dpo!) x

Just had a thought, if you took Pred from day of ovulation, your last dose will be Saturday actually... slightly different to me as I start at 1dpo.
We'll be testing buddies! x

Hi Tee4me, a testing buddy, yayy, exciting! I was actually thinking to wait until Monday (day 11), as I never got a positive that early before...I don't mean to pry or be insensitive, so feel free not to share, but can I ask whether you feel Pred it's affected how quickly you get pregnant, as you're saying you're on your 3rd cycle? I have read quite a few stories where women say it's taken them longer than before, and a bit stressed it might happen to us. We fell at first try will all previous 4 failed pregnancies, so really hoping it won't change that (I'm 37, no kids, so feel like time is running away from me!).
I also have a 2nd thing Dr S has identified, borderline sticky blood, so I am taking aspiring 75 and will be having the dreaded Fragmin injection following a positive test. Thanks xx

And forgot to add I've been taking Pred from day 15, as have a longer cycle. Dr S's midwife whome I emailed to clarify some things said where you have a longer cycle, you can take it from day 16, as it should cover conception and implantation and if you don't get a positive on day 10, it will reduce the gap between stopping and restarting Pred x

Oh I don't mind sharing at all!
Well I fell on cycle 3 when we conceived DS. When we started TTC #2 we fell on cycle 3 again, but MC'd. After that it took another 7 months to conceive again 😤. Fell in October last year and had a MMC, and it's been a year since that 🙈
I feel like for most people MC can make them more fertile (this was the advice/reassurance I kept being given), but for me they almost seem to disrupt my system, so I certainly wouldn't put being on cycle 3 of Dr S's protocol down to Pred disrupting things. Most ladies on here have had more MCs than me, but I went to Dr S to nip things in the bud given that it's also been taking a while for me to fall (my sister had x4 consecutive MCs so I didn't want to leave the 3rd to chance given how long I've been waiting).
It's sounds like you are super fertile, so I'm sure this protocol is the ticket you need to that sticky bfp!! Hopefully you'll hit the nail on the head first go!! x

I really hope that's the case! As I've said in an earlier post, I am obsessed with reading up on stuff and that makes it worse, but just can't seem to help it! Just hoping we both get our BFPs over the next few days - please keep me posted! x

Step away from Google! ✋🏻
FX for us both on Sunday!! x