Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

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 immune issues, 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.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

@Eeviee
Thanks very much for your reply :)
After my 3rd loss in January, anti-phospho and anti-cardio were negative. In March, both were between 2 and 10. And last month (after my 4th loss), the anti-cardiolipin was 60, anti-phospho quite low though.
He is quite convinced that the cause of my last 3 losses at 6, 9 and 9 weeks might be there (the loss at 9w, after aspiration, showed that embryo had stopped growing at 6w). Regarding my 1st pregnancy, my baby girl had lots of problems, short legs, thorax, arms, facial abnormalities, thick neck and a massive general oedema. There was NO indication of a clear phenotype (dwarfism or growth deficiency). But with the APS discovered, he thinks that the disease may have caused some nutrition problems and caused her inflamation. We ended this pregnancy :(
Considering my geriatric conditions (i am 38 loool), he wants me to start again (ovulation in 8 days.....) and get treated from positive test to week 36 with the classic aspirin, heparin and progesterone. And cross fingers. In attientin, my ovarian is very low, meaning that i would need at least 3 cycles of heavy stimulation to have IVF-PGS.
I am so sorry that you lost another one, despite taking this treatment too (i am worried as hell). At which stage were you?
Consideringthe NK cells too, but still not convinced about the reality of the thing and treatments.
Regarding the anti-TPO, nothing is done, no referral to endocrinologist what so ever. Although something is clearly happening. BUt he says there is urgency to try again, cause if it fails again, it will add extra months to the process, and i will be 39 too.
Take care of yourself :)
xxx
Soph.

So hearthbreaking when friends, sisters-in law, everyone around, are getting pregnant or giving birth :(
I fell i am becoming as hard and cold as stone

@sophfr17 I know how you feel, everyone is having babies around me and I don't want to feel bitter but cant help it. 3 miscarriages and on Dr S complex plan. Still not pregnant although just started again after Covid-19

@Hazlet2 Thank you so much for this, really, really helpful. Can I just clarify one point, does Prof Quenby not prescribe steroids? What antibiotics does she prescribe instead? My understanding was that NKC issues cannot be addressed by anything else than steroids (prednisolone?) or IV immunoglobulins (sometimes in combination with other meds, depending on individual history)?

I've also done quite a bit of reading overnight and came across some contradictory information, such as that in the context of recurrent miscarriage, endometrial scratch is considered more suitable testing method because NK Cells within our reproductive system are different to NK Cells in the rest of our bodies (and this why it's been favoured over a blood test). I can of course see lots of ladies on here on Dr Shehata's protocol, based on blood tests, and multiple positive stories online. Are the articles I read incorrect or have I missed something?

@Sophfr17 just to echo what @Eeviee said, it looks like you’ve only had one set of positive tests for APS?

I tested negative for it before I had my son, but then when I went back to Mr S before trying to conceive my second he ran some tests again and my lupus anticoagulant was raised which can indicate APS. They repeated the test 12 weeks later and it was normal again so I don’t have it. My understanding is you need at least 2 positive tests with a clear gap in between.

PS my anti thyroid antibodies are through the roof, but I was diagnosed with hashimotos as a teenager, so not surprising really. Have you had your thyroid function checked?

@Eeviee sorry you have to wait another month, but really good news your uterus looks good. Do you feel they did a thorough check for any scarring?

@PurplePansy05 you’ve summarised the difference between Mr S and Prof Q’s approaches/beliefs re NK cells. I don’t know what the truth of the underlying science is. I think no one really knows yet. I went with Mr S over Q because I wanted to be seen quicker. His plan has worked for me twice now (and I had a mc in between when I didn’t follow it to the letter so don’t think it was fluke) so I think it works...but who knows, maybe not for the reasons he thinks it does.

@Eeviee Thank you, I'm still 'holding on to hope' and I guess I won't know more til tomorrow. I've refrained from googling too much. Both scans vary so much that I wouldn't know what to google!

Dr S scan - normal pregnancy, measuring 6 weeks, heartbeat detected (seen and heard), possible ovarian ectopic

Nhs scan - fetal pole seen, measuring 5 - 5.5 weeks, too early to detect heartbeat, no ovarian ectopic but more likely a cyst on a blood vessel

🙄😑🤔

I'm glad your scan showed a clear uterus and I hope you have a normal AF. Has Dr S suggested taking a break or will you be back on plan?

I woke up with a cramp in my left thigh it's still there - not sure it's a good or bad sign but it's no longer in my pelvis. My left side still feels tender but if there's a cyst it would be I suppose. I also have developed spots ok my jaw line/neck which is unusual for me.

@Sophfr17 I know the feeling of ppl around you being pregnant and announcing pregnancies. Both my besties fell pregnant same time as me last year, I mc and they continued with having normal healthy babies. It was really difficult as even though I was happy for them I was sad for myself. Sadly they didn't acknowledge how I felt. And right now my other good friend is pregnant, she's hating it as as severe sickness. I'd do anything to have a baby.
I keep telling myself my turn will come. I hope yours does too. Xx

@PurplePansy05 When I saw Prof Q, she told me she wouldn't prescribe me steroids so I'm not sure whether she does for some and not for some. Maybe it depends on the results of the womb biopsy. She said she was looking at how antibiotics help with recurrent miscarriage, there was a recent article about her study in a newspaper - google it to see if you can have a read. As for womb scratch, I asked Dr S this and he said it's how he did it many years ago but found that cells were easily damaged hence why he does it by blood test.
It's all very conflicting I know, but as @HarrietM87 said I chose him as didn't want to wait and sit on a trial. Xx

@HoldingOn2Hope I really hope the scan goes well for you tomorrow!

@PurplePansy05 I thought I would add that I listened to a good podcast by DrS (a link is on the CRP website) and I think one argument for the blood test over scratch test was that the levels of killer cells in the uterus varies so much over a cycle that it is hard to know if it is actually elevated or not, whereas the levels are more steady in the blood. I have tried to do some research to understand better but it's so complicated. I think to some extent we just have to trust the experts, so ask them what you need to to feel looked after and listened to.

You girls are right, it seems that the diagnostic of APS must be confirmed after 12 weeks. But that is a long wait... and in the mean time, APS or not, i think he would have put me under the same treatment anyway. There is no real harm taking this treatment to be honest.
And from what I can read in this amazing thread, i feel that we are all willing to try anything, and that most of us would take all treatments at the same time if it were possible^^
I just dont know what the antibiotics, and which ones, have to do with our problem. It should exclusively be given in case of acute bacterial infection (or as a prophylactic treatment for people like me who has 10 UTI a year).
@HoldingOn2Hope, hope you will soon know what is going on. I suppose you are right, we will get there, eventually.
xxx :)

Thank you so much ladies, lots of useful tips and food for thought. I wasn't aware of some of the newest research you mentioned and also the podcast is certainly something I'll explore.

What you've said has given me a lot of clarity. I'll ask a number of questions first to BCRM in Bristol. I suspect I'll end up going with Prof Quenby instead. I am facing a 16-week wait for my RMC tests on the NHS anyway, so waiting for NKC tests isn't too worrying for me. I think they key is that I'd like the results to be analysed by someone with a lot of experience in this particular field to make sure the treatment I get is tailored to my needs 100%. It costs money and I'll be putting lots of various stuff in my body, I'd like to be reassured this is right for me and has a realistic prospect of helping with my future pregnancies.

I think I know what I need to do now.

Thanks @HarrietM87, no I'm not at all convinced that the ultrasound was enough to rule it out. Apparently scarring can't be seen on an US, I've asked for a hysteroscopy but all procedures are held up with covid. If I experience the same pain next month I'll be calling the consultant for an emergency scan there are then as the pain had reduced by the time I saw him this time.
@HoldingOn2Hope its'so hard but I think staying away from google is a good idea, it does noting other than make you worry and hopefully Dr S can put your mind at ease tomorrow. He does have a wealth of experience so there's a really strong chance his scan was more accurate.
@Sophfr17 could you speak to your GP about your elevated TPO? If you need thyroxine, they might be able to help while you have to wait for a referral to endocrinologist? The antibiotics being used in Quenby's trial is Doxycycline and being used to combat endometritis which is inflammation of the uterine lining I think (not to be confused with endometriosis). www.nihr.ac.uk/news/new-trial-could-benefit-half-of-women-with-recurrent-miscarriage/22110.

@PurplePansy05 it's so tricky deciding who to see but I'd definitely go with someone who understands the immunology side of things, many NHS consultants know about it but they can't test for NK cells and may not be able to prescribe steroids. As far as I know, if NK cells are an issue, most commonly prescribed treatments are steroids or hydroxy and or intralipids or IVIG or a combination of various. Both Dr S and Quenby prescribe steroids but the main difference is Quenby does do from BFP whereas Dr S does from ovulation. NK cells are confusing, but elevated levels is just one aspect, mine weren't; high but they are aggressive especially in pregnancy. Have you had the standard tests to rule out clotting factors such as APS and thyroid problems?

@PurplePansy05 like @Eeviee my NK cells weren’t elevated, just extra aggressive in pregnancy. Also I had an unplanned pregnancy and started taking the pred from bfp and it ended in mc. For me I have to be on it from ovulation, so Prof Q’s programme most likely wouldn’t have worked for me. All my losses were really early (pre 5.5 weeks) whereas I think if they’re later you have a bit more leeway with the pred start date.

I'm waiting for my RMC tests. In my area, there's a 16-week wait.

My losses were later, two missed miscarriages 10 and 13 weeks and one early loss at 5 weeks, which felt completely different to the other two and even the hpts didn't progress much. I appreciate this might mean there might be a different issue, potentially APS or thyroid or progesterone (although I was already on progesterone in my third pregnancy). I think I'll check our Prof Quenby alongside my RMC tests and if it's NK issue and her protocol is no good for me, I'll throw it all at Dr S. I'm 33 now, there's still some time to try different things and different approaches, I'd like to think.

@Eeviee thank you, I've kind of kept that faith today 🙏🏽 feeling more and more anxious as the evening gets on.
I also had a hysteroscopy done in Nov, infact Dr S suggested a HSG but I read about it and was petrified plus I'd had a laparoscopy about 10 years ago to check for blocked tubes and endometriosis. Dr S basically said it was required but was satisfied with the hysteroscopy. It's a lot less invasive then a HSG and results were given by the consultant there and then. I cancelled it 3 times as I'm not good with procedures at all.
Like you I was worried about scarring so it like I'd put my mind at rest. Are you continuing with vitamins and omega 3? I remember my consultant at the time saying it was important I did even if I wanted a break. Xx

@PurplePansy05 I am in Bristol and have seen Mr Akande at BCRM and he’s my NHS RMC consultant (but they don’t do that uNK biopsy on NHS in Bristol) and I’m been under Mr Shehata for this pregnancy.

I saw Mr Akande at the Spire privately back in 2015 and he did the uterine NK cells biopsy after I had had 2 mcs as I wanted to do tests. My levels came out high so he prescribed 20mg steroids from bfp, clexane & prog. It took until 2016 for me to get pregnant but I had my daughter in Nov 2016. I then had two more miscarriages in 2018 and 2019 on his plan (although 2018 mc he put me on 10mg steroids - god knows why?) & both were tested and no chromosomal issues. I had the uterine biopsy again in 2019 and my levels were fine. He wanted me to try again but I pleaded with him to do something different & he prescribed me hydroxy. During waiting for those appts I saw Mr S and had all the tests. Nothing wrong with me - all normal but he agreed due to the testing of the last 2mcs that there was an issue & put me on complex plan.
Mr Akande absolutely does not agree with steroids from ovulation so I was torn between who to follow. I started the hydroxy and decided I’d go with Mr A then chickened out & took steroids from ov as well as staying on hydroxy. I then continued with Mr S as I really rated his care & did intralipids etc. I’m 21 weeks now.
That’s a long story but I really rate Mr Akande & he’s fully into the immune side of things & appointments don’t take long really. He just doesn’t agree with Mr S re timing of drugs. He was also willing to prescribe hydroxy which I am very grateful for.
Let me know if you have any questions x

@HoldingOn2Hope I’m sorry things are so stressful. As the other ladies have said - I totally rate Mr S over an EPU sonographer - I’ve had shocking experiences too & I’m so sorry you had a mean one.
Really hope you get some answers tomorrow xxx

@mezgaski Oh my word! I'm SO glad you responded, you cannot imagine. Thank you. I have an appointment scheduled at BCRM with Mr Akande. From what you said, I understand he follows a similar school to Professor Quenby. Very interesting. Maybe I will stay with BCRM for now. Do you personally felt more confident when you were under his care or under Dr S's care? I understand it's a personal choice. To me, a good patient manner is very important because I was treated poorly by the NHS before my last loss and it contributed to my very poor mental health last year. I would be super grateful if you could share your thoughts. Thank you again, it means a lot xx

@mezgaski thank you! I'm hoping all these positive vibes will give me a positive outcome tomorrow! Xx

@HoldingOn2Hope good luck for today 🤞🏽 Thinking of you xx

Well my first SO cycle was a flop with a BFN this morning 😔 I was trying to stay positive as my temps were looking really good too but it obviously just isn’t the right time. I wish Rona would buggar off as I’d love a holiday right now 😂

Sorry to hear that @wishing5star - are you 10dpo? Or is your period due today? There's a few ppl that were bfn then but had a BFP later.

I know what you mean about a holiday. All my go to things for commiserating when my cycle hasn't gone right are pretty limited!

Can you still give yourself another treat? Xx

@KtAgs thank you! I’m 11dpo so I know it could still be too early but I’m preparing myself that AF will arrive.

I’ve just eaten a Daim bar haha not quite the same as a cocktail on a sun lounger though is it? 😂 I think I will have a few gins at the weekend as a treat xx

@HoldingOn2Hope thinking of you today. Please let us know how you get on.

@Wishing5tar so sorry - bfns suck. Keep testing for the next couple of days and treat yourself in the meantime! Cycle 1 is always a bit of a long shot anyway but you’re getting closer to your bfp xx