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

Hi everyone, I've dipped in and out of this thread as I had 2 mmcs and one very early loss in February. I had one nk cells biopsy at the Coventry implantation clinic and was waiting for my second when lockdown happened.

I finally had a follow up consultation last week and professor Brosens said my first set of results were normal and due to the type of mmc I had (no growth beyond 5.5 weeks both times) he feels that its more likely the babies were genetically normal (which was hard to hear) and it's likely that my uterus environment wasn't conducive to pregnancy. He's prescribed cyclogest from 7dpo and then to up to 400mg if I get a positive test. So we're no closer to answers but have ruled out nk cells and the typical rmc issues. The professor was confident we would have a baby, we just need to get me pregnant, which has been an issue.

We are ttc naturally from next cycle and hopefully will start ivf sometime before Christmas (we've been ttc 3 years in November).

@HoldingOn2Hope I'm very sorry to hear of your recent loss ❤️

@Sophj19 I'm sorry for your losses 💜 I had a series of blood tests looking for anticoagulants and lupus. Mine were normal but if they show positive they will be redone. I didn't get much more from my recurrent mc clinic, only that I'd be offered early scans if I got pregnant again (but they're currently closed). Have your babies been tested for chromosomal issues? I'd recommend going privately if you can afford to as there is a delay on nhs clinics. X

@VenusStarr have you been tested for TNF Alpha cells? A high level can cause trouble with implantation so either prevent conceiving or early loss. Might be worth looking into if you haven't, if only to rule it out.

Hi @Chickjen do they do that as part of standard rmc tests? I'm not sure if I have but I wasn't given copies of my blood test results - just told they were normal.
I'll look into it though, thank you :)

@VenusStarr I don't think they do, they certainly didn't for me, it's one of the tests Mr S does as part of the immunology screen.

I think its worth getting hold of your blood results anyway @VenusStarr. They give you the 'normal' ranges for things. But often the normal range for the nhs might be in a range another doctor would treat privately. For example, your TSH will be up to 4.2 in a normal range but guidance says it should be below 2.5 for pregnancy/conception. Or something like that.

@Sophfr17 sorry you find yourself here but welcome. This thread is for ladies with RPL and tends to focus on women who have accompanying issues with reproductive immunology and/or thyroid problems. In terms of what tests to ask for, they will usually test for lots of things but TFT (thyroid), FVL (clotting factor), hba1c, coagulation amongst other things. I didn't know much about any of those and what they do or mean until I read the Lesley Regan book about miscarriage. There's also some helpful booklets on the miscarriage association about RPL if you haven't seen already? Sorry if I'm telling you things you've looked at already - I just thought I'd share what I found useful. Keep asking questions as the ladies here are lovely and very knowledgeable. X

Dear strong and courageous women,

After 1 termination for growth abnormalities and 3 mcs in the last 12 months, an anti-phospho syndrome has been diagnosed last month (and also very high anti- thyroperoxidases and super low ovarian reserve) .

So we had the green light to start again, like asap, with me being treated with aspirin, heparin and progesterone from positive test until week 36 (if i reach that point...).

Today the test is positive, so I should go this friday to collect the medications at uclh and learn how to do the injections.

I am scared as hell, my stomach is in knots (not sure about this translation...), not excited at all, and a lot ashamed for not feeling joy :( but, you know what i mean...

I will let you know how it goes.

Take good care of you

Sophie

@Sophj19 I'm sorry to hear about your losses, it's such a painful journey and it's annoying as I found there's not one go to place to go to learn about all this stuff. To be honest this thread is where I learned most about the different tests, the ladies here are very knowledgeable.
But in regards to your question about tests, (hopefully, this is helpful and not telling you to suck eggs), but there's a couple of different categories of tests that you can do based on reasons for miscarriage.

1. Chromosomal - which is either testing the baby after miscarriage or karyotyping which is testing you & hubby to see if you've got a balanced translocation (you appear perfectly normal but the unbalanced chromosome is passed to the baby at conception). I think you can get this on the NHS, but rarely. We had to pay and it was about £500.
2. Hormonal/Clotting - these are the standard tests that they definitely do on the NHS like Thyroid, anti-coagulants (clotting), there are a couple of others which the NHS will do as standard. There are medications for all of these that you can take like Levothyroxine (Thyroid), Clean/Heparin/Asprin (Clotting issues). There are also other things like checking your lining etc, but you might have to ask for those. This typically is treated with progesterone suppositories / injections.
3. Immunological (this is the most divided reason in the medical community) 30% of doctors believe, 30% don't, 30% believe but don't believe in the treatment. This is ultimately about getting your NK cells tested - where they believe that these cells are over active and attack the pregnancy and therefore cause you to miscarry. Those who believe it can be treated will treat with Prednisolone (there is some debate on when to take it either from ovulation or BFP) and Hydroxychlorine (which I think is quite new some of the other ladies on here would be able to tell you more about it). Both of these are a form of immunosuppressants - the theory being that if you suppress the immune system the NK cells won't attack the pregnancy). Unfortunately, because it's such a contested area you will have to go private for this. Many ladies here are either under the CRP Clinic (Epsom) which is definitely private and will probably set you back £1700 for the tests (if you've had the standard ones on the NHS) or Dr Quenby/Brozens (Coventry) - I think they might be both private and NHS but again some of the other ladies would be able to tell you better, but I think it's a bit of a wait and they'd want to put you on a trial.

I hope that's helpful, I agree with @KtAgs and would definitely read Dr Regan's book (Miscarriage) and Dr. Beer's book (Is your body baby ready) who focuses on reproductive immunology. Most of the ladies on this thread are here are being treated for No. 3 amongst the other things.
@HoldingOn2Hope I hope you are doing ok, you have been in my thoughts. In your message you said you were thinking about your appointment, are you debating changing clinics?

Hope everyone else is well x

@Sophfr17 our messages crossed, gentle congrats, keeping everything crossed for you x

Yes mine too. @Sophfr17 gentle congrats and @Sophj19 my message above was directed at you. Sorry for the mix up - the handles are similar xx

Thank you @KtAgs.ive already had an argument with my GP about my thyroid (it was 3.06 in January - am on levothyroxine now). I also had to argue for them to prescribe the cyclogest. Everything feels like such a battle.

Just been on the phone about our nhs ivf funding - being passed from pillar to post. Am very close to giving up on that and just going privately. I think we'll give the cyclogest a couple of cycles and then proceed with self-funded ivf if the ccg is still dragging it's feet.

Congratulations @Sophfr17 one of my friends who has high nk cells started on a similar protocol (clexane not herapin but the rest is the same), she's just had a good 6 week scan.

Thanks for the positive messages :)
xx

@Countrygirl220 yes it's been a good few days of thinking. I have a consultation with Dr Taranissi's clinic and once I've had that I'll decide what to do from there. The webinar with Dr Gorgy was just to get info on ivf/Icsi. I guess I have to wait for results from the last miscarriage and only then can decide how to move forward. I want to believe in Mr S, but those few scans have really put me off mixed with the fact I didn't have a reply drop the clinic until I chased again yday. Kind of feel a little lost.

@Sophfr17 keeping everything crossed for you xx

@HoldingOn2Hope I totally understand that, I would be exactly the same, you definitely want to have faith in the person who's helping you with this as you're putting yourself in their care and trust. It's already a hard enough journey without worrying about if you believe the doctors. I hope the consultation goes well - and hopefully not too long to wait for the results. I forget did you do the pred only this time, or did you have the Hydroxy too? It'll be interesting to compare the protocols of the different doctors. Hope you are taking good care of yourself x

@Countrygirl220 it was just pred so I guess Mr S will recommend hydroxy next. Yes it will be interesting to see what this next consultant says and if it's similar and he recommends hydroxy then I'll make an appt with Dr S.
I've been ok, keeping busy and hoping AF arrives soon!

@HoldingOn2Hope
Hey lovely lady, I hope this month is going to be a good one for u, I can feel really bad period cramps so not good for me.:(
You said you had 5 follicles was that just with gonal f or anything else too? Did you have IUI or timed intercourse? Hope you don't mind me asking xxx

@CATALYST2019 Hey, I don't mind at all so ask away :) I only had a good response to g-f and was on 225units a day. 5 follicles, 4 were dominant and 1 was getting there but I had the trigger the same day. What day are on? It can be normal to have cramps and I did. Oh and it was timed intercourse xx

@HoldingOn2Hope thank you so much
That is an amazing response and he has prescribed me 225 next month too. I'm so excited for you
My cramps are really bad I'm on day 17. I have had 3 miscarriages where I got pregnant really quick but it's taking a while nor :(
Hoping 225g will help xxxxx keep us updated , I hope its great news xx

Morning ladies I hope you're all doing ok. Quick question - AF arrived yesterday but quite lightly and not until about 4in the afternoon, with then a total temp drop and full flow this morning - from a letrozole perspective would you take today as day 1 or day 2? X

Sorry AF turned up @hrtbrk2. I can't help you on the letrozole front I'm afraid. Katy x

Hi @hrtbrk2 I'd class today as cd1 as you woke up with full flow.

I'm also cd1 today, we're going to follow smep and I'll take the cyclogest from 7dpo. Feeling hopeful that we're trying something different this time.

Thanks @KtAgs it's ok, after Dr S told me my follicle was too big it wasn't a surprise so for once I didn't get my hopes up!!

@VenusStarr I think you're right - although I desperately want to get in to the clinic next Friday for my scan which would be day 9 otherwise I'll go back on day 12-13 again and last time I went that late my follicle was past viable so I don't want to waste this cycle. Just waiting to get through to them to see if they'll let me x good luck to you too - yes there is a lot to be said for just feeling positive about trying something new that might just be the thing your body needs! Fingers crossed xx

Hi @hrtbrk2 - hope you’re ok. Dr S doesn’t work Fridays but I pushed to go for my scan today (day 9) as Monday would have been far too late for me. And the last time I went on day 8 it was too early. Basically, day 10 seems about right. Anyway, I am seeing Dr Jan later who I haven’t had before. Fingers crossed.

Was yesterday’s bleed more like spotting @hrtbrk2?

I have recently started taking hydroxychloroquine and I’m getting bad headaches - not sure if it’s from that or from hayfever/something else. Did anyone else on it have any side effects? And if so, how long did they last?

Fingers crossed they let you class yesterday as cd1 🤞 @hrtbrk2