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

Yes thinking of you this morning @HoldingOn2Hope. Sending lots of love xxx

Sorry you're going through this @HoldingOn2Hope. I was thinking the same that it might be the ectopic resolving. I think the fact you have a little hb for the little one in your womb and not one in the ectopic is a great sign. Will have everything crossed for you. Please keep us updated.

@Jorun I felt very similarly after getting my results from Dr S. Although my results weren't as high - i'm also on a complex plan. And I was part shocked but also glad because I instinctively knew something was wrong. It sounds like you're very knowledgeable about PGS as well so thank you for sharing.

I hope you're all OK ladies. Xx

@Holdingon2hope I'll be thinking of you today with everything crossed. Keep us posted xx

Thanks @crystal2020 he's started me on 5mg so we'll see next week.

Hope all is well with everyone and you've had good weekends x

Hello ladies,

It seems to get more complicated 😑
The sonographer was just awful today, didn't agree with Dr S's scan report. She was really dismissive and said he's 'just a consultant' I said yep and a damn good one that's why I've chosen to see him!
Basically today's scan showed I'm measuring about 5 weeks and no heartbeat detected. Dr S scan showed 6 weeks and heartbeat which I saw ok the screen and heard. She said the left ovary isn't ectopic and more like a blood vessel and doesn't understand what he's seen on his side.
Called the clinic and Geri has asked me to come and see Dr S on Thursday as he doesn't agree with today's scan! She said well she's just a sonographer not a consultant!
I'm just feeling rubbish to be honest.
Oh and on the report from today I've just read 'double yolk sac seen' which wasn't mentioned in the scan but it's on the report.

Geri said Mr S's equipment is way more advanced but if I'm 6+3 surely a heartbeat would have been seen today.

Thursday can't come soon enough. I feel helpless.

Hello all, hope you don't mind me asking a question.

I had my third consecutive miscarriage last week, I'm being referred to my local RMC, but they do not offer NK Cells testing. I therefore arranged for my first appointment with BCRM in Bristol for the end of this month. I know Dr Quenby in Coventry is the best of the best, but I am 2.5 hrs away and much, much closer to Bristol. Does anyone have any experience with BCRM? Any recommended/not recommended doctors there?

I'm so sorry @HoldingOn2Hope - that limbo is just awful. It never faces to amaze me how much variance there is between machines though. And so I'm going to embody your handle and 'hold on to hope' Thinking of you lovely

@HoldingOn2Hope I'm really sorry that the scan didn't give you any answers and actually just made you more confused. The waiting is just horrendous. I've also seen the variances between different machines so if Dr S' is more sensitive then that would make sense, as there's presumably no way you could have gone backwards and the baby is so tiny at the moment. I hope you can try and distract yourself for these next 36 hours or so, I am thinking of you x

Sorry to hear about your losses @PurplePansy05 it's such an awful time. I'm afraid I haven't heard anything about Bristol, I had NK cells testing at the CRP in Epsom.

Thank you all. I'm a bit concerned, maybe I should be going to an experienced NK Cells tests clinic instead. Really not sure what to do.

Thanks @KtAgs for sending me this link. I'm new to this but really helpful x

@Hazlet2

Thank you *@Countrygirl220* *@HoldingOn2Hope* and *@Crystal2020 ☺️ it's amazing that finding a thread via Google can give me more info and comfort than my GP ever could! I hope you're all well. Sounds like you're all navigating this minefield daily and I'm really intrigued by Dr S' programme now. I guess I'm a bit confused about what to do next. I'm not sure why I'm on an nhs fertility clinic waiting list when that would largely be for those who need ivf as a next step. Not sure ivf is the answer to recurrent MC 🤔 unless there are genetic issues, although I could be wrong. I had the standard bloods done late last yr and everything was 'normal'. I haven't had the next tests yet (they've suggested karyotyping) so maybe I should keep hold of that referral. Who knows when I'll be able to see them - they have a huge waiting list. I called Prof Q's clinic and they aren't open but as soon as they are it seems I can call when I've ovulated and they'll book the womb biopsy in for me for a week after. It's £540 - totally willing to pay but like you said *@HoldingOn2Hope** I don't feel like time's on my side. I guess my main question for you guys is - have you all had something immuno related diagnosed that meant your next step was to see Dr S or Prof Q, or is seeing them a good step regardless because they're experts in the recurrent MC field? Sorry for all the qs - I'm feeling pretty confused about what to do next x

@PurplePansy05 I don't know if you saw the conversation another poster @hazlet2 started a few messages back? Ultimately, its your decision but a few of us shared our reasoning for going down the NK cells route with Mr S/Dr Quenby following this post...

(there's also a lot of discussion on pred thread 24 about this as the question about what to do and who to go to is a big one!)

I fell off the thread for a few days and missed your updates @HoldingOn2Hope. How horrible for you - I don’t know what to say. I definitely trust Mr S over a sonographer, apart from anything else his scanner will be better than the NHS one. Will he crossing my fingers for Thursday.

@hrtbrk2 re SO side effects, it was never flagged to me by Mr S but I’m pretty sure that the letrozole thinned my lining at higher doses. That’s one of the major issues with Clomid and letrozole is meant to be better but as soon as I went to 7.5mg my lining reduced. Saying that I still conceived but think it was borderline. I think if you’re worried then Mr S can prescribe Progynova. Vitamin E and pomegranate is supposed to help thickness; no idea about broader dietary changes though.

@HoldingOn2Hope I'm really sorry your going thru . I would trust what Dr S is saying as i think he would have more specialised equipment. I know it seems like an eternity but thursday is not far. X x x hang in there and try to relax if you can x

Hello All, thank you for your supportive msgs. I actually had a afternoon nap which was meant to be 30mins but ended up being 1.5 hours - not slept well and was just exhausted after lunch

@HarrietM87 That's exactly what Geri said to me. She said his equipment is way more advanced and and it took him a couple of minutes to find the baby and the even the ovaries whereas today she had that probe in my for at least 16-18 mins. She kept telling me il full of gas and it's causing poor visibility - and I kept apologising. She made me feel awful tbh. Then she asked if I'd been constipated and I said no, she said 'are the stools hard?' I said no not hard to pass and she was like 'I'm not asking if they are hard to pass, I'm asking if they are hard stools' I felt like saying well I don't dissect them afterwards! TMI I know but she just wasn't nice.
I'll see what Thursday brings!

@PurplePansy05 As @KtAgs most of us are with Dr S. There's lots of info a few msgs down so have a read of those. Are far is Dr S (Epsom Surrey) from you? It's a 3.5 hour drive for me on a normal day but after my experience today and previously at the local EPAU I'd rather do that drive. Prof Q is meant to be amazing too, however she's nhs and you will be on a waitlist I guess. I hope the posts help you make a decision. They seem to be the 2 leading UK consultants who look into Nk cells so it narrows it down for you. Xx

Thank you. I am in Cardiff, so not a great choice for me either way. BCRM in Bristol is far more convenient, I don't know if I could have the tests there and then take them elsewhere for second opinion.

At the moment, I've realised I am very confused about all sorts of different options, I thought NKC tests are NKC tests and that's that, I have no idea about the differences between various doctors, how to be referred etc. I'm quite overwhelmed tbh. I'd better read 50+ pages of the earlier thread and this ond to catch up and try to understand more. Thanks. Xx

@HoldingOn2Hope she sounds like an absolute cow and I’m so sorry you had to go through that when you were already anxious. Tuesday is almost over and then there’s just tomorrow to get through before you see Dr S. Thinking of you and wishing Thursday here quickly Xx

@Crystal2020, IVF cycle is not for at least a month to allow the hydrocychloroquine to do it's job. so looking at July now (that is if IVF clinics don't close down again!)

@HoldingOn2Hope, you should have demanded to see a different sonographer! That sort of behaviour is unacceptable! When I was scanned at my local EPU my sonographer asked for another one to come over and confirm that there was no longer a heart beat. Although I must admit having read the thing about Dr S having a much better machine, my brain instantly just to thinking that maybe the heartbeat was still there they just had rubbish equipment..hoping and praying that your situation is different.

@Countrygirl220, if you ever have more questions re PGS give me a shout! Most doctors just seem to do exactly that, I'm sick and tired of hearing "it's just one of those things/it's numbers game/next time might be completely different"... it's not like I have an unlimited supply of PGS tested embryos. we were lucky to get three normal ones, some women get none at all. I just couldn't face not doing anything about it..My consultant also said that she wouldn't change anything about my treatment because I'm still on the 1st NHS funded cycle. They don't want to "risk their contract" by prescribing anything extra!

@Crystal2020 She really was! In a way I think it helped as if I'd had a sympathetic one today I would have cried whereas I was more angry and determined to just go with what Dr S is saying. I've looked at the scan and the measurements have progressed so I'm still hopeful.

@Jorun I almost did but but they are all awful there honestly. I've had some really mean ones - my friend has a bleed in her pregnancy and went to the same epau and said they were awful to her too.

Today is almost over and I just need to get through today. Xx

Sorry ladies only mean again.

Last couple of days I've had a lot of stringy white discharge - is this normal? 🤔

@PurplePansy05 hey, it's all very overwhelming - I'm in a similar boat, trying to research what to do next and these ladies have massively helped. I've done a bit of research on both Dr S and Prof Quenby, but @HoldingOn2Hope summed things up really well so I've copied her message below, hope this helps. Others have also said that they are both experts in this area and essentially have the same approach re NK cells but use different methods and treatments at different times in your cycle. Prof Q could have a wait list although I called the clinic and they said once they're open again I should just call when I've ovulated and theyll book me in for the womb biopsy a week later (Mr S does a blood test instead I believe). With prof Q You have to do this over 2 cycles and not be pregnant at the time. They sent me a useful info leaflet so you should call them to find out more. You're right, the NHS does not test NK cells due to the fact that it's not yet scientifically validated through controlled trials but there is a lot of evidence to suggest that immuno issues play a big part in recurrent MC and this is being recognised more and more in the mainstream medical world.

All I've had so far are the standard blood tests and scan on the nhs at a RMC clinic - everything came back normal. I've now had 3 MCs like most people here and at the very least want some more investigation. If I were you I'd wait to have those tests first as they may discover something - then perhaps if they don't, you could move on to Dr S or Prof Q? But obvs totally up to you and your personal circumstances!

"@Hazlet2 hello :) I'm so sorry you've been through heartache, I had 3 losses before I decided I need to see a recurrent miscarraige consultant.
I made appts with both Dr S - most of us on here are under his care and also made an appt with prof Quenby too. I waited 4-5 months for the Prof Q appt so hence why I went ahead with Dr S. I did see Prof Q and she was absolutely amazing. Kind, caring and very helpful and genuinely wants to help women have babies without paying extortionate private fees. However she is nhs and has a wait list. Also she is running a trial and wants everyone to join her trial, which was great but I felt I didn't have time in my side - I was 37 when I saw her and 38 now. She also does Nk cells testing however by womb biopsy and not blood test as Dr S does. She doesn't prescribe steroids but antibiotics instead. She doesn't agree with any of what Dr S does so bear that in mind if you end up seeing both it will just confuse you as it did me. I went with Dr S simply because there was no wait list and I read and researched his success stories. Prof Q did say she would still be happy to support me throughout my pregnancy as an obs/gynea . One of my good friends who is mid 40's has had 2 babies in 2,5 years under Prof Q and says she wouldn't have got there without her, she didn't ask her to join the trial because of age. I'm pretty sure you can call her secretary and get yourself on the wait list. The womb biopsy is charged and she does it twice over 4 months. I think it's about £450-500."

X

@HoldingOn2Hope I'm so sorry you're going through this. Thinking of you and hope you have good news at the next Dr S visit x

I've been hiding away for the last week, I was given an ultrasounds last Friday after getting an emergency referral and he said my uterus looked clear which I don't understand why I would have experienced such pain. So I just have to wait now to see if it happens again next month which is far from ideal.
@HoldingOn2Hope I'm so so sorry to hear of what you've been going through. That other sonographer doesn't sound pleasant, Id definitely trust Dr S over her. I really hope that tomorrow's scan brings you some reassurance, I know how awful the waiting and not knowing is...

@Sophfr17 welcome to the thread. Sorry to hear of your losses. What medications have you been put on? The high anti TPO may indicate autoimmunity towards the thyroid, have they ruled out Hashimotos for you? I also have a dignosis os APS with elevated cardiolipins, I also have aggressive NK cells but the APS worries me the most. Normal treatment is baby asprin and clexane (low weight heparin) but that wasn't enough for me and I still lost my last chromosomally normal embryo. I've had steroids or now hydroxychloriqine added by Dr S, he believes that there is an immune factor so you need to medicate for that as well as blood thinners aren't enough for some people. I'm now 39 so concerned about my egg quality (my most recent loss was trisomy 22) , amh is not set in stone, have you read the book 't strats with the egg' by Rebecca Fett? If not I'd really recommend it. There is also a FB group which is very informative. Hope some of this helps but feel free to message me if you want to know anything more about the APS in particular.

@Hazlet2 welcome, I haven't seen Qunby but have heard great things. I opted to travel fro Scotland to see DR S as I just wanted to get things moving, the initial tests are expensive circa 2.5k but then it's not too bad except intralipidsad for me the travel.

@hrtbrk2 sorry to hear you' re experiencing weird pain, I'd say its most likely your body is just a bit messed up from miscarriages and medications. My periods have definitely been lighter since my miscarriages, I have experienced horrific pain (unlike period pain) since my last loss and only the tiniest amount of bleeding. I believe a lighter period means less of a lining. You could try seed cycling to support hormones throughout the month (just google it, its flax and pumpkin for follicular phase to boost oestrogen and sesame / sunflower in luteal phase to boost progesterone) I'm also trying castor oil packs to improve blood flow and acupuncture if probably the best thing to regulate periods and make them heavier but annoyingly we can't access that right now.

Hope everyone else is
ok x

@Sophfr17 I have just seen that you said your anticardiolipin was only elevated once? These can be elevated with infection and can flare up and down. In order to diagnose APS, your anti-cardiolipin, anti-lupus or . B2GP needs to show elevated on 3 occasions over the course or 12 weeks. I believe mine flare up in pregnancy, but they can't diagnose with only 1 test.