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.

@Rebecca9876 to reiterate what @Everhopeful35 has just said - this is the exact reason this group is here! Pregnancy after miscarriage is the scariest thing ever, and with every pregnancy being different, it helps to have others to turn to when something happens we can’t explain as “normal”.
Please try and stay positive, and just increase back up to 1200mg as per Mr S advice. I dont think missing one single pessary would have caused any harm and you still had 800mg anyway.
Rest up, have an early night and get onto the EPU first thing xx

@Rebecca9876 How bloody awful to have been treated that way by your hospital! Not sure where you live, but just wondered if there's another hospital you can visit? I'm in London, so I know I probably have more choice, but after I received appalling treatment at my local hospital for my miscarriages last year, I went to another hospital for my miscarriage in July. It was about half an hour away but the treatment was SO much better. Sorry, I didn't mention before that I had an SCH in my second pregnancy because it didn't end well for me and I thought it'd be unhelpful to mention. However, I was very early (just before six weeks) and my SCH was larger than the pregnancy sac. Because the baby was so small, it didn't stand a chance. The further in you are in pregnancy the better, so 10 weeks is a much better place to be. Stay strong until the morning and don't panic. Honestly, I have a friend who bled the entire way through her pregnancy and all was fine. Sending big hugs xxx

Thank you girls. I’m also in London @Everhopeful35 so that’s a damn good point - I should go somewhere else and see what happens there. Pretty silly I haven’t tried that already, I guess I’m not thinking well these days/acting on pilot mode every time I go to my local hospital for an issue (seems to have been all the time this year!). I’m going to get a good night’s sleep as you say @Jellystar23, man up and try to get someone somewhere to see me tomorrow. Thank you both xx

Hi ladies, Thanks @venusstarr from the other thread 😊

I wanted to hop on here and follow the discussion... in a bit of a mental pickle. I am 38 and have been ttc for almost 2 years. Not a hint of a bfp and diagnosed as unexplained which doesn’t sit right to me. I have experienced one early stage loss in my twenties so wondering if auto-immunity may be a factor here. On top of this I have just had some bloods back which show high eosinophils count, which could be an allergy, parasite or autoimmune disease 😒 (not spoken to doc about that yet)

I also have TSH of 3.7 which isn’t great for conception.

I am starting the process of IVF, waiting for a date, and cleaning up my diet, losing a few pounds etc, but wondering if it’s worth meeting Dr Shehata before spending 10k on IVF? Or am I just over-thinking everything?

I am also doing some intolerance and allergy testing to see if there’s any triggers I can avoid.

I can see you guys are a lot further along on your journey than me, and I feel a bit stupid for posting this. But any thoughts or advice would be great.

Hello @farfromperfect82! I would say not stupid at all, very sensible. Although you haven’t had multiple miscarriages, according to a lot of the literature I’ve read immune system issues can cause unexplained infertility (presumably attacking early on, before the embryo even implants). Maybe it’s one of the reasons Dr S treats from pre-conception and ovulation and not just after a positive pregnancy test (as well as generally calming everything early on)?

I would say if you don’t mind the cost of the initial tests then go for it - and he tests for the whole battery of issues not just immune system problems, so you would have all bases covered (plus optional tests like sperm DNA fragmentation, which is probably worth having from what you’ve said?). Then at least you have the knowledge of whether there is an underlying issue. Or you could just have a consultation with him, ask lots of questions and decide if you then want the tests. There are some alternatives to Dr S of course but I can only speak about him (I’m at the similar end of the age spectrum as you and just wasn’t willing to wait for NHS referrals etc, and he’s basically the main pioneer in the UK). Good luck whatever you decide! X

@farfromperfect82
Hello 😊
Personally I would look into the Zita west clinic. They provide IVF and the tests that CRP do, whereas CRP don’t do IVF. They are on Instagram and are having regular Q&As with the Doctors. They have an extremely high success rate and the clinic looks amazing. I had been recommended them by a specialist midwife but when I looked into it, I thought it was more IVF but a lady on here also used them (for both IVF and NK testing) and that’s how I found out about their Instagram. You may even just pick up some info from their IGTV so you can get started in preparation as they recommend preparing 3 months prior to IVF transfer.

Thanks so much for your thoughts 😘

@Rebecca9876 yes that is what I am thinking... we have been having so much sex, all the right times, for song long and not even a whiff of a positive. His sperm results are pretty good but he's not been tested for DNA fragmentation but defo think it's worthwhile to do. My results aren't terrible for my age (although testosterone was elevated, but been tested before and it was ok). So maybe Dr Shehata can help and he's about an hour away from me.

@Jellystar23 Zita West is amazing and currently following her diet plan for calming over active immune system. I think Marylebone is too far realistically. We just moved out of London after years of living there and I don't think I could go back as regularly as is needed, I think it might stress me out. We are going with Care in Tunbridge Wells I think, unless Dr Shehata can work a miracle for me

@farfromperfect82 you could also just ask about superovulation as an option (which he does in-house at the clinic). I think it’s sometimes a first step in fertility clinics before the higher costs/invasiveness of IVF (I know that’s the case with the nearest fertility clinic to me, where they try it for 3 cycles before going to IVF if unsuccessful - I wasn’t treated there myself but had some tests a while back and they ran me through their procedures). I don’t know the whole background to your situation of course or if it would be suitable but just an idea/maybe something to ask about. Good luck x

@Rebecca9876 I think his assisted fertility sounds like a good thing to explore. Kind of like a half way house between jumping straight in and working with someone who's taking a more holistic approach. Thanks for your advice, really appreciate it x

@farfromperfect82 welcome to the thread 😊 I think maybe look at the superovulation program and see if you can do that first it's a bit cheaper and easier on our bodies and then if that doesn't work you can always try IVF. I'm sure Dr S would either be able to find a cause or give you advice on how to increase your chances. I wish you all the best of luck with your journey

@KtAgs thanks for the links. I'll try and find the intralipids one i don't really understand the use of them but I trust Dr S.

@Rebecca9876 I'm so sorry your pregnancy is so stressful it's so hard not to feel anxious after all we've been through. 10weeks is quite far along so I really hope that if you manage to get a scan all is well and the bleeding was just the haematoma. I'll keep everything crossed for you

@farfromperfect82 Welcome! I hope you find this thread as informative and reassuring as so many of us do. I think superovulation could be a good option before you go down the IVF route. I've done it in reverse and I'm now doing superovulation after two failed IVF rounds (though my story is complicated - all of my embryos we ended created were abnormal, so the specialists think it's either an egg quality issue or just that I simply didn't agree with the stimulation and a natural route would work better. Thankfully, we do also get pregnant naturally). Superovulation, as I've learned so far, can be a little trial and error. This is my first month doing it and frustratingly I only created the usual one dominant follicle. But they're upping the dosage of the stimulating drug next month, if I'm not pregnant, in the hope of creating more eggs. I really hope it helps you and Dr S can give you some answers.

@Rebecca9876 Did you manage to get to an EPU today? How's the bleeding? I've been thinking of you. xx

Thank you @LaurenAB94 and @Everhopeful35.

So, the bleeding tailed off and I decided to just rest at home today (but a very kind lady PM-ed me and suggested one that happens to be reasonably close and does not have a long pre-booked waiting list appointment system - it’s first come first served - so I will go there if it starts again). Spoke with the clinic and as Dr S doesn’t work there tomorrow, I’m happy now to wait until Wednesday (would prefer he scans me just because he knows me and the history very well, although I did have a nice lady last time).

Lauren you’re right of course and I’m feeling tentatively hopeful, but we still haven’t passed the date of our first loss yet so that’s the big milestone in my mind. It’s coming up this Saturday so everything crossed! I think you get your results back this week is that right? Very exciting if so, you must let us know how you get on! xx

Everhopeful you are so sweet. I hope you’re ok - you’re in the middle of the awful two week wait aren’t you? I have always found it awful and hope you are coping - and I’ve absolutely everything crossed for you! xx

@Rebecca9876 I'm so glad the bleeding tailed off. I'll keep everything crossed for you. You've done amazingly well throughout it all I can't imagine how stressful it is. I'm at the clinic Tomorrow afternoon for my results with Dr S and discuss where I go from here. I'll post with an update soon

Just wanted to say that my scan went well yesterday - everything is looking good and I was measuring 13w 4 days.

It feels like such a big hurdle as the dating scan has always been bad news in the past, so I'm very happy!

Fingers crossed for those of you waiting for results and scans x

@Rebecca9876 I'm so glad the bleeding has stopped! That's great news. Nice to know there's a hospital you can go to if you need scanning, but I agree that it's probably best to wait for Dr S on Wednesday if you can. Thanks for thinking of me on the 2WW. If I'm honest, I'm not expecting much from this month - what with the fluid in the womb and slight lining issue, I keep thinking that this isn't destined to be my month. I don't always get pregnant super quickly either - last year I had two pregnancies within three months, but earlier this year I tried for five months and had one very brief chemical pregnancy. I'm also getting so many side effects from the cyclogest like cramping that it's made symptom spotting impossible! Test day is Saturday, so we'll see...

@Hippo20 Great news on another successful scan! Really thrilled for you x

Lots of catch up on!

@Rebecca9876 I'm glad the bleeding has eased up, keeping my fingers crossed for you for Wednesday.

@farfromperfect82 glad you found us :) I definitely think the superovulation is worth a try. We've struggled to concieve and do have a cycle of nhs ivf that we can use and Dr S said at my appointment last week he'd support that as my amh has fallen quite low, but would need to adapt my plan.
But we're going to ttc on our own first because of Christmas and the dates won't work out for scans. Dr S did say that because my nk cells are aggressive it's likely that's why we've struggled to conceive and then had the losses, so I think you seeing him before ivf sounds sensible.

@LaurenAB94 wishing you lots of love for tomorrow ❤️ I can't believe my results was almost a week ago - I'm already gearing up to ovulate and feeling hopeful, so I hope it's the same for you. Looking forward to hearing how you get on xx

@Hippo20 fantastic news about your scan! That's brilliant.

@Everhopeful35 🤞 for Saturday, sorry you're getting side effects from the cyclogest but in the nicest possible way, I hope you have to take them for a while longer :)

I had a scan on Saturday to check for any retained tissue and was given the all clear - to be honest I felt that it had gone and that I had had a period following the tissue passing, but it was nice to get confirmation. What wasn't nice was the sonographer saying during the TV scan, 'I can't find your uterus?!' it is retroverted but it must've tucked itself right back. Scared the life out of me.
My cycle seems to be back on my normal track, cd10 today and we're giving it our best shot. I usually ovulate on cd10/11 and all the signs are there and my temps are stable with a drop today 🤞 When does everyone start cyclogest? My form says from ovulation but I was thinking from 3dpo once my temps have confirmed ovulation. In my last pregnancy I used them from 7dpo and I did get a faint positive from 10dpo. Feels weird having short cycles, if I ovulate today or tomorrow, I'll be testing next weekend. Not expecting it to work this cycle, but I feel so much better knowing I'm following a plan.

Sorry if I've missed anyone! Lots of love xx

Congrats @Hippo20 - that's great news.

@VenusStarr - glad you've got the all clear about retained tissue although terrifying when they couldn't find your uterus! It's good you had a period too. Things sounds like they are all moving in the right direction.

Glad the bleeding has stopped @Rebecca9876. I think getting scanned with Dr S makes most sense - consistency across the scans is helpful. My dating scan and Dr S' were a bit off and not that it matters in the scheme of things but I am very much in the business of worrying about everything.

@LaurenAB94 This is the article I found most helpful about intralipids as I was super sceptical. www.ejog.org/article/S0301-2115(20)30380-8/fulltext - It's from this year as well and the authors are from a reputable hospital in Paris, and also did a lit review on the subject which I found interesting. If you need a link to the full text, I can send it to you over DM (and anyone else that wants it).

I hope everyone's scans and results go well this week. Take care ladies. Xx

Thanks for sharing the link @KtAgs, I had a read but would be interested in the full article, if you wouldn't mind sharing please? X

@KtAgs thanks I'll take a look this afternoon it's just something I don't really understand how it works and would love to learn more about.

@VenusStarr I know I'm nervous and excited all at the same time for tomorrow. We've been avoiding pregnancy until we get our results but I'll be due to ovulate this weekend/ start of next. I can't decide if to try naturally first just with xmas coming up or to start the SO cycle straight away.

Hi ladies,

I hope you don’t mind me jumping in here.

I’m 29 and my DH and I have been trying for one year now. I got pregnant on our first go but lost that pregnancy at 6 weeks in December last year. Then I had two chemical pregnancies in March and April, followed by a MMC at 6 weeks in June, with a D&C in July. I just had another chemical pregnancy at the beginning of November.

After the MMC in the summer I got diagnosed with Factor V Leiden and MTHFR, so I was on Clexane and heparin at the time of my chemical pregnancy in November. My doctors do not believe in NK Cells so wouldn’t test me for immune issues. They’ve told me I’ve exhausted all tests at this point and it’s really just a matter of bad luck and to keep trying, which is pretty devastating to hear after the year we’ve had.

I’m not happy with that explanation and having done quite a bit of reading myself, I’ve made an appointment to see Dr S in a couple of weeks.

I just wondered if any of you ladies have had similar experiences with your miscarriages and have gone on to be diagnosed with immune issues? I’m a little concerned as my losses have been so early that maybe there’s something very seriously wrong... Really hoping that Dr S is our answer!

Hi @NessyT91 so sorry for your losses. Most of us on here have been diagnosed with immune issues, and many of us see Dr S, so yes you’ve come to the right place for support and a chance at something other than “bad luck” and “keep trying” (I hate those phases, but so many of us here have heard them and understand how devastating it can be - but it’s also not necessarily true). This thread will give you a lot of hope as there are many successes, even if it can be tough along the way, so I hope you get some answers soon xx

Hi girls!

@Rebecca9876 I hope tomorrow goes well. Let us know how you get on 🤞

@LaurenAB94 good luck with your appointment. It's great to have the ball rolling and start the plan. I started taking the medication 2 weeks ago now!

@NessyT91 gur that actually annoys me when they say that. They clearly have no understanding of the emotional trauma we have all been through ...that or they just dont care 🙄🙄 Dr S will definitely advise you and hopefully help:)

@KtAgs thanks for all the great links! Our in house scholar 😜😁

@VenusStarr glad scan was clear and you are ready to get going again 💪

@NessyT91 hello, my story is similar to yours however we're trying for a second child. I had no issues conceiving my first but have had multiple losses (all before 6 weeks) whilst trying for our second baby. I was told by various hospital consultants that everything appears to be normal and its just bad luck and to keep trying. However I knew deep down there was an issue. I did my own research and that's when I discovered that NK cells can sometimes be the cause of early mc's, so I went to see Mr S and he diagnosed me with highly active NK cells and said he was confident that's what was causing all my mc's. I'm currently on his complex treatment plan.
I think you've definitely done the right thing to go see him, hopefully he can give you some answers xx

@LookingforAnswers86 thank you so much for all your help throughout this 😊

@NessyT91 welcome I hope you find this group as helpful as I do. Good luck at your first appointment I can't tell you how much seeing Dr S has reduced my anxiety and helped me cope mentally just finding answers.

@NessyT91 sorry you're here at all but you're in the right place! I have 1 ds (conceived 1st time we tried!!!) and since trying for our 2nd I have had 1 CP and 2 MMCs both before 6 weeks. Mr S said the early miscarriages are among the hardest to treat but he was confident he could help. My tests showed high TNF Alpha and highly active NK cells which he thinks was the cause. I am on the complex plan too. I'm having a scan and going through results of my hormonal tests this week. Fingers crossed I can Try again next month now I'm on hydroxy.
Hopefully he will have some answers for you too.

@rebecca9876 pleased to hear bleeding has eased and GL on your scan.

@Everhopeful35 good luck on TWW 🤞Hooe the Humira worked!

@VenusStarr good luck trying! I'm gearing up for in a few weeks too.