Immune/NK issues - aka Pred Thread no. 22!

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

Oh gosh @chilliandlime so sorry you’ve had to go through all that. The scarring was my worst fear when I had the D+C in fact because of that fear I requested a Senior perform it as I was worried that someone less experienced may bodge it up. Thank god you’ve been on the ball and managed to get it looked into pronto! Best of luck with Mr S’s protocol 💐 it’ll certainly help if the NK cells are playing a role in the miscarriages x

And welcome @ginandtonicfor meplease wow what a journey it has been for you so far - big hugs! I think your going down the right line with focusing on improving DH sorry through nutrition and supplements. If your on Instagram there’s a wonderful lady under the name of Fertilitynutritionist she focuses specifically on nutrition for sperm and fertility health. She is worth a follow and gives lots of free advice! And as @chickjen mentioned the speed comet could be worth a test! So sorry your having to navigate such a complex path. Don’t give up, there will be light at the end of the tunnel one way of another! And still plenty of options for you x

Sorry @ginandtonicformeplease didn’t tag you properly. And sorry = sperm and speed comet is sperm comet 😂 damn autocorrect!

Thank you @Sunshineblonde1, it's been really stressful on top of dealing with the mcs. You were wise to request a senior Dr, I wish I'd been less trusting when they told me it'd be fine and waited it out longer or had more rounds of misoprostol. It's cost us a lot to fix, but hoping we are through the worst now and it's onwards and upwards x

In really feel for you @chilliandlime, that’s an awful lot to deal with during a very upsetting and stressful time. So glad your coming out the other side now and can move forward with your next go 😘 x

@Chickjen @Sunshineblonde1 From what i understand, as we achieved good embryos through IVF that then managed to develop enough for a heartbeat, it's more likely to be autoimmune problems on my part, or a very small chance that we have a genetic problem. While I'm making DH do everything he can to improve his sperm, I don't hold out much hope that I'll get pregnant naturally. I just need to keep busy and overhauling our diets is something I can do!

Another slight complicating factor is that I have epilepsy, taking several meds for that. No research has ever been done on ivf on women with epilepsy - everything seems such a gamble.

I've booked in for some fertility reflexology next week, I've never tried it before but I'm looking forward to it.

Totally understandable @ginandtonicformeplease. And that’s a great idea re: reflexology! It really does all add up to help support the journey. I grasped at restorative yoga and Accupuncture and I’m so glad I did as it really helped to balance me and keep positive. I loved the holistic approach alongside the science and your hitting up the nutrition too so covering all bases.

Hi everyone, I am just looking for some advice on the pred protocol. I have had 3 CPs and just this week a MMC at 8 weeks. This was with pogesterone aspirin and clexane. I am not based in England so don't think that actually going to see Dr S is an option but my consultant has mentioned NK cells to me in the past, so I'm wondering if this is an avenue I should perhaps go down. All other tests have come back normal for me, so we are very much unexplained. Do you have any advice on what questions I should be asking at my review appointment?

Dear all,

Welcome newbies. I'm so sorry you find yourself here but you are in the right place where you'll get all the support and suggestions you are after :-) Sorry I have not kept up with the thread due to terrible sickness. I will have to back track and learn all the updates.

A quick positive update from me:
Had a scan at week 10 last Friday due to spotting issue. Saw a hb and baby was measuring right for the gestation. Gosh after all the mcs, first time ever... Can't explain how happy it made us. Wanted to post here and give you ladies more positivity re the protocol as soon as we had the scan..

@Thumbellini - So sorry to hear hun.. Get some time off hun and pamper yourself. Wondered if you could request a blood test for NK cells and start taking steroids. Not sure if you had
been offered a test for Thyroid and Sticky blood in your region. Perhaps worth a try.

@Sunshineblonde1 - So sweet of you to keep checking on me hun. Screen is making my nausea worse.. So staying off as much as possible... I'm throwing up like crazy, hopefully will see it fade soon. Hope you are doing great

I shall keep posting whenever I feel better.. Please excuse me until then. Sending lots of hugs and positive vibes to everyone here

XOXOXO
HappyApple05

@HappyApple05 that is wonderful news 😄 I am sorry to hear you are being so sick and yet completely delighted at the same time 😂

@Thumbellini the first step is a blood test to check the NK level, then you take steroids from ovulation for 10 days and do a pregnancy test, if it is negative stop the steroids, if positive keep going till 12 weeks. I have some other factor too which causes chemical pregnancies, I think it's another kind of immune response and the blood test that picked it up was for 'TNF Alpha' so that might be worth asking about. 🍀

Thanks for the responses! Are NK cells ever tested for on the NHS? The test is offered at a private clinic here for around £700 so can definitely get it there if not. Have any of you got the steroids on the NHS? I have had the RPL panel done which I think tested for sticky blood etc but I need to recheck that. I was put on aspirin and clexane with cyclogest to help with implantation, as this was my original issue with the multiple CP but sadly didn't help the most recent one. So I think I need to explore new avenues. Of course we could just be unlucky but 4 in a year definitely suggests a bigger issue x

@Thumbellini I have to say I have found the NHS completely unhelpful and dare I say obstructive. I asked my GP if she could help point me in the right direction of avenues to explore privately and she told me to go away and google it. However when I went back with my diagnosis and treatment plan she knew all about NK cells, pred and intralipids ( and will not prescribe anything either) I think it is literally a postcode lottery. Even my local RMC is based in the antenatal department and the consultants diagnosis of 4 miscarriages and me crying at him about how stressful I now find being pg that I'm worried I stress myself into miscarriage was 'I think you really want to be pregnant and your not'
Sorry rant over! ☺️

Oh my god, how unhelpful! I have found my NHS experience to be ok, I was allowed to have the RPL after 2 CPs and my GP was very thorough with tests etc albeit a bit clueless. I went private to see the Miscarriage specialist on the advice of the EPU after the 3rd CP. He gave me the clexane/progesterone/aspirin just to see if it would work lol. He did mention NK cells but said it had kind of fallen out of fashion a bit. So I think I will see if he thinks it'll be useful in my case. I would happily pay if I thought these things would work but it's just so hard to know isn't it

@Thumbellini I have just started the steroids and progesterone on the NHS for NK cells as my local hospital is Epsom. It may be possible to be referred there, I'm not sure? I had to wait 4 months but it worked out ok in the end as I couldn't ttc anyway til now due to dealing with Ashermans syndrome. I'm so sorry for your losses, it's such a painful and lonely road. Thank goodness for all these lovely women who understand.

I am quite confused about the aspirin, we had a private consultation with Raj Rai at St Mary's in January and he said it can increase risk of miscarriage, and Lesley Reagan says the same in her book. I asked my Ashermans specialist about it a week ago and he said a new study from St Mary's has indicated that it can reduce your chance of conceiving, so he advised me to stop taking it prior to bfp. But seen lots of people have successful pregnancies on it on these threads! Such a minefield x

Oh that's interesting about the aspirin! Although I suspect in my case it works as it was the only change I made and 2 cycles in I conceived and had a v dark line at 10dpo. And I did see a hb at 6 weeks (albeit measuring behind) so I do believe the drugs helped combat the implantation failures I'd been having with the CPs. But then again who knows?!

This is a lonely road, the threads on here are just so knowledgable it's amazing. I opted for generic testing with my ERPC so perhaps that might shed some light. Probably not though. If someone said to me in a year or two you will have your baby I'd be ok with that it's just the constant unknown that's so hard to deal with x

@thumbellini know exactly what you mean about the uncertainty. I really hope the genetic testing provides some answers. You are strong and will get there x

Welcome new ladies. I definitely think it's true that the uncertainty is the hardest thing. I was saying that to a friend (with Asherman's, actually) at the weekend: if you told me it would happen in 3 years, I'd deal with that (and drink a lot more ).

My treatment has been delayed. Not by much but it's so annoying and also means I may have to cancel a holiday I had planned with my lovely Mummy....

On the plus side, that bastard panel is done now. Onto the next challenge my stupid job has to throw at me

@HappyApple05 so lovely to hear things are going so well. Hope your nausea calms soon.
@KittyKatSmile I'm so sorry your treatment has been delayed and you may have to cancel a holiday, I'm sorry I tried reading back but didn't manage to catch what it was for?
I agree on the dealing with/drinking more! By the way does your friend know about the closed Ashermans group on FB (only use FB for that these days)? There's an international one and a UK and Ireland one, have learnt so much from that x

Hello everyone and all those new on here! Good luck to all trying the protocol and so happy to hear positive news from some of you. Sorry I have not been very active, have been traveling and have my mum is visiting us from thousands of miles away, keeping me preoccupied. After the 12 week scan I have been significantly more relaxed. 16 week scan at Dr S went well too. I have been told the blood flow is a little low, nothing alarming so have been prescribed aspirin. I do feel some tugging and pulling in my belly but no kicks yet.

Someone asked about IVF and protocol - yes I underwent ivf (due to a previous ectopic and having one tube) and continued with the meds prescribed by my ivf doctor which mostly coincided with Dr S plan. Except he asked me to amended two of them - pred of 25 mg instead of 29 and progesterone to be taken till 16 week instead of 14.

What's the update from you @Sunshineblonde1 ? So happy to hear about you @HappyApple05 !! @Chickjen @KittyKatSmile @DaniMERL how are you guys??? Xxxxxx

Pred 25 mg instead of 20mg*

Hey @nixwix I was thinking of you the other day and hoping all was well 😀💐 Snap! I’ve got twinges, tugging and pulling but no ‘kicks’ yet but the nurses said as it’s our first that it won’t happen until 20Weeks plus as our stomach muscles aren’t ‘shot to pieces’ ....yet 🤪 With second baby it can start as early as 14 weeks. I’m doing really well thanks hunni! Just started pregnancy yoga which is really informative and is helping with foot cramps and baby bump bonding 💗 feels weird not taking Cyclogest anymore! And so glad my appetite is back to normal.
@HappyApple05 I can’t tell you how pleased I was to hear that all is going well still and hope to hear from you soon when the nausea subsides, fingers crossed within a few weeks 😘🤞

Re: aspirin, that’s interesting, euch we are damned if we do, damned if we don’t in pregnancy by the sounds! It’s meant to improve blood flow to the baby .... all I know is every specialist I’ve seen has advised it so that’s all we can do right! We have to have faith that what they are instructing us is correct and faith that one way or another we will all get the babies we are working towards. We are all strong determined women who find ourselves here, women who don’t just settle for being told ‘you just have to try again’ without researching into why and what we can do to help things along. The path isn’t easy but the end goal will all be the same, I know that for sure 😘 X

I hope everyone on this thread finds that being here makes the journey much less lonely 💗💐🥰 x

Hi all,
Things seem okay here. I have my 6 wk nhs scan on weds next week. I have symptoms and got to 3+ on a clearblue indicator. Anxiety levels are really v v bad. I’m struggling quite a lot and am still feeling negative about the outcome. This is the hardest yet.
Sending love to you all x

Sorry to hear your anxiety is through the roof @daniMERL it is a very very anxious time, the first trimester is the hardest on that tho the second and third bring a whole new set of worries 🥴 but at least then it’s our the miscarriage zone. Thinking of you. 💐 You just have to put trust in the universe now that everything will be ok. The one thing I kept telling myself is that there was nothing I could do to change any outcome. It was already written in the stars at point of conception. Breath deep and trust and surround yourself with love and support. All will be well. Have faith. I have everything crossed for you keep us up to date x

Thank you @sunshineblonde1 xx