Immune/NK cells pred thread #34

[Hopeandfaith1990]

Hi all, started a new thread as the old one was full. Not sure if this is the way to do it but I've c&p'd the list of people on the previous one as much as poss:

Old thread here: https://www.mumsnet.com/talk/conception/5228367-immunenk-cells-pred-thread-33?page=40

@Jecca88
@Gizmo1983
@Deerdancer34
@Objectiontime
@SWMum9
@TammyinCork
@Newbeginnings22023
@Fletchasketch
@Morgan236
@CarpeDiem75
@ALittleLight
@MC8
@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

@Hopeandfaith1990 Glad it is now over for you. Have a lovely relaxing weekend hun xx

@Objectiontime Yes, what I would do at one of the later appointments (think its 32 weeks or something like that), book in or plan what you want because you can then always cancel/postpone if you don't then want the sweep/induction/c-section or whatever you decide but its good to have the options in place ready for if you want to use them 😘

Hi everyone, I hope you are keeping well. Sorry for the silence on here. I was logged out of my mumsnet account and couldn’t get back in!!

We had a successful trip to Greece. Surgery showed I had a LARGE septum in my uterus, endo back with a vengeance… my left ovary was stuck behind my uterus and attached to my bowel. My right tube was blocked and I have high inflammation. The doctor agreed that Dr Shehatas protocol was way too strong for me and said she thinks the reason for miscarriage and the gestation I had them at is consistent with the septate. Two NHS doctors looked at this before and decided I didn’t have it…

feeling very glad to have some reasons why we haven’t been getting pregnant but also annoyed I’ve been pumped with drugs for the last however many months when actually a scan would have shown other issues at play.

She said NK cells could be high due to inflammation. I’m on anti biotics and then we will try again naturally

@SWMum9 sorry that u have been through so much!!! I am just trying to catching up but didn’t CRP scan u and notice all this?!? How are you feeling now?

@Jecca88 congrats darling!! How are you doing. ❤️How come u were off meds when u fell pregnant? Was the month break after 6 months? Xx

No they didn’t because I’m under the NHS pathway 🥲😒

@SWMum9: That's awful - I am glad you finally got some answers and that they can treat you and hopefully remove the septum first. I agree that these protocols are way too strong sometimes, or at the very least, taking the meds from ovulation really doesn't work for a lot of people!

@Objectiontime: Hope you can decide on a good birth plan... Sending you lots of warm wishes!

@Hopeandfaith1990: Wishing you a speedy recovery...

@Fletchasketch: Fingers crossed for the NIPT test, and great news re: measuring ahead!

@Deerdancer34: Hope you are doing well!

@Jecca88: Hope the reduction in pred has helped you sleep better!

Sending positive vibes to everyone, including anyone I might have missed!

I just had my second big fat negative on Dr S's plan, despite taking the prednisolone / omeprazole / progesterone from 3DPO this time, instead of from ovulation (and I nearly always used to get pregnant on first try). Last week, we went for a follicular scan at my local IVF clinic in Ireland and it turns out I have 15 follicles and an AMH of 8.4, which is considered good for my age (I'm 42).

I had gotten a second opinion from Dr Thum and he said to definitely do IVF with PGTA testing, plus an immune protocol (but taking the meds later on).

Feeling quite lost now. Should I do the IVF with PGTA testing and immune protocol? Or try superovulation for a few months? Or just keep trying as we are naturally?

@TammyinCork Such a difficult decision. I have heard such good things about Dr Thum, my acupuncturist really rates him. Your results sound really positive though, so perhaps IVF with PGTA testing might speed things up? Sorry, really not an expert here, but rooting for you! Thanks for the good wishes, I'd never expected to get as far as the NIPT test and am so grateful, but that is now the latest thing occupying every waking moment 🙄.

The Greek clinic were very strict that I take the protocol no earlier than 3DPO as it can interfere. When Dr S protocol made me have irregular bleeding and negative OPK I queried this month on month and was told just work out mid cycle and take the protocol… so I could have been taking it too early and preventing ovulation. Got to love NHS

@SWMum9 So glad you have got some good and useful info in Greece and completely understand why you a bit peeved about having had all the drugs. Makes sense about the NK cells too. All sounding very hopeful, so I have everything crossed for good news for you soon.

Dr Thum is who I went to. Absolutely loved him because he listened to my views and didnt laugh at the fact that I had strong research based opinions. It is so hard to make decisions when different consultants have different views isnt it. Anything that speeds things up is helpful but the financial cost can be prohibitive.

Hey Ladies,

Thanks @Rainbowchaser87 so i was still on Hydroxy but we were waiting for our frozen transfer date and we literally DTD twice on holiday - not tracking or anything and got pregnant. I started on the drugs as soon as i found out and presuming i am 5.3 weeks now based on when we did the deed.

I am really struggling with the GCSF - it gives me the achey back and hips and upper thighs. I feel so out of it too, sleeping better but also had some light brown discharge which always sends me into a panic. I have been extremely anxious and can't even begin to think about going to the scan on friday, who knows what they are going to see. I have been testing every two days and the tests are coming up straight away and stronger which is reassuring for all about 10 mins.

@Hopeandfaith1990 have you had any results post hysteroscopy?

@Fletchasketch when is your NIPT testing? did they say how long results take?

@SWMum9 We went for IVF - my AMH was 4.4 and folicle count was 13, but we managed to get 12 embryos, 4 good euploids and 2 untested. Your numbers seem really promising. How do you feel about it?

@SWMum9 wow how had this never been found? Are the greek clinic going to do the op for you?

@Jecca88 sorry to hear you're struggling with the GCSF. Do you think it's something your body will gradually get used to with time? All the luck and solidarity for the scan on Friday. I will be thinking of you. My NIPT/10 week scan isn't until the end of the month, mainly because Dr Edge is on holiday and the thought of seeing someone new makes me want to cry, so I pushed it out to 11 weeks. Hopefully that means I'll be more likely to get a clear result, but also means I need to go back there the following week for the nuchal scan, which feels like a lot in a short space of time. I hope the next few days go quickly for you. xx

@SWMum9 really glad to hear your trip to Greece was productive with a plan to move forward, but I'm so sorry for all you've been through. Super frustrating that it wasn't diagnosed earlier - you had an inkling something else was at play and the protocol wasn't right for you. I'm under Dr S privately but a scan wasn't part of my initial tests either. It sometimes feels they're so tunnel vision the immune side of things that other factors and a more holistic view isn't considered..

@TammyinCork that sounds like a great result! It's a hard decision though... I guess it depends on how quickly you want to keep things moving, and what you can afford. Do you have a gut feeling about it?

@Jecca88 sorry to hear you've been having a rough time on GCSF, the anxiety is the worst without all that as well! Really rooting for you on Friday.

@Hopeandfaith1990 hope you're recovering ok.

Hope everyone else is ok? I've got my 6wk scan tomorrow, extremely nervous, absolutely no idea what to expect. xxx

Thank you, all!

@Fletchasketch: Yes, really keen to speed things up, especially as I know most clinics probably stop doing IVF with own eggs when the woman turns 43 (I will be 43 next June). Worried that if we keep trying naturally, I will continue to get BFNs. I've heard of people on the FB group saying that they did superovulation for six months but got nowhere, and wished they had done IVF with PGTA straightaway instead.

@Jecca88: You got great results on the IVF! Really hope you start to feel better soon on the GSCF...

@Objectiontime: I found Dr Thum very clever, relatable and sensible, and yes, willing to listen!

@MC8: Sending every good wish for the 6-week scan. Apparently there is a noticeable decline in fertility between 41 and 42, according to Professor Quenby, which could be why I always got pregnant on first try, even a month before turning 42 (which was my sixth miscarriage) but since turning 42, nothing! Maybe it is a combination of that and the immune meds?

@SWMum9: The Greek clinic are right. A lot of women don't take the immune meds until they get the first squinter of a positive, at 7 or 8 DPO. But then Dr S says taking them too late can also lead to miscarriages. It's so hard to know what to do...

@MC8 @Fletchasketch @Jecca88 Good luck for your scans, we are rooting for you all 🥰

@SWMum9 At least you have a way forward now and it was worth doing 💪

@TammyinCork I've nothing really to add because I don't know enough but IVF might potentially be a quicker option 🤔

Lots of love to all ♥️ gearing up to my 2nd round of Superovulation. A bit nervous because Dr E is away 😥

@TammyinCork thank you. I didn’t know that stat… with all you’ve said, it sounds like IVF would be a positive next step.

very good wish for your scan tomorrow @MC8

Hey, so unfortunately my scan didn’t go well today. No heartbeat and the sac was misshapen. I can’t believe this is happening again. Well I can, because it’s all I’ve ever known, but just I don’t know how I’ve got to 9 losses now and how I can keep on going. Waiting to hear back from epu to go for another scan and then book in for an erpc etc. Hopefully I don’t have to wait too long, but you know how it is. I’m so, so tired of all this. Xx

@MC8 I’m so sad and so so sorry to read your update. Finding out at a scan is just the worst and my heart goes out to you. Useless as it is, I’m sending you a big hug and if you ever want to chat to someone who knows the experience a bit, just say. I hope the next bit is as quick and straightforward as it can be xx

@Fletchasketch thank you so much. It’s really crap, like you say I just want the next bit to be over with asap so I can start the countdown to test results and hopefully some answers... or not. My epu is a bit hit and miss so we shall see. Xx

Hi all, just catching up.

Firstly @MC8 I am so so sorry to read your news. 9 losses is just so cruel and beyond unfair. Echoing @Fletchasketch with the offer to chat. I often wonder if a WhatsApp group or FB or something might be helpful for us here but not sure if people would be keen. I think its quite nice that we can come to this thread when you are emotionally up for it and not have it kind of buzzing like a group chat can be.

@TammyinCork sorry about your BFN. IVF could be a good shout for you, especially as you could try to 'bank embryos' ASAP - as my consultant says once created, they are frozen in time and aren't affected by aging like ours eggs are when TTC naturally. Worth considering if you'd want multiple children for the same reason - your embryos aged 42 would be fine to implant for a while I'd guess. Personally, I wish I'd started IVF earlier although my failure to conceive could be down to something else, who knows. Not only because I'm impatient but because everything with IVF seems to take longer than you expected/hoped/planned for. Your follicle count is definitely promising and AMH of 8.4 isn't low in IVF terms. Its a really personal decision and it can feel counterintuitive at times when you DON'T TTC in the time waiting for the next stage of IVF.

I don't think I'd do PGT-A again for what its worth, unless you've had chromosomal issues in the past. None of my tested losses have had chromosomal problems and I had a failed transfer with the most perfect embryo you can get! Although I am slightly younger which could be a consideration.

@SWMum9 how frustrating - I can't believe no one has picked it up before. Did they show you an image/measurements of how large the septum was? I always ask about this on scans and have always been told I don't have one but I always wonder! Will you have surgery to correct it and the tube? Or a hycosy?

@Jecca88 sorry you're struggling on the GCSF. Are they normal side effects? Glad you're sleeping better but the other ones don't sound fun and ah yes the brown CM - such a party pooper. Just remember so many pregnancies have it and have positive outcomes, its something that doesn't mean doom but for us recurrent loss girls its just an awful presence. Crossing absolutely everything for you on Friday, I'm so hopeful for you ❤

Hope you're ok @Fletchasketch it sounds sensible to wait for Dr Edge to be back and I'm wishing you all the positivity in the world for the scan once it comes.

Hope you're all okay @Deerdancer34 @Objectiontime @Gizmo1983 and anyone else reading 💕

Christ this turned into a bit of an essay!! No results back from my hysteroscopy yet, but I am going away next week as its half-term so going to enjoy myself when away and then get back on the IVF wagon hopefully for a November transfer. Been SO weird to actively not TTC this cycle - first time in years I think. I still ovulation tested for some reason 😂 (POASA)

Love to all xxx

Hi all, sorry I’m new-ish to this thread and a bit rubbish at keeping up with it but I just wanted to say that I’m so sorry to hear your very sad news @MC8 - take care of yourself during this time and we are all hear to chat. I’ve had two miscarriages in three years of trying to conceive, 9 must be excruciating to deal with. Sending you lots of love at this time

Oh no, I'm so, so sorry MC8. Really sad for you. It is absolute crap and totally unfair. No words really cover it do they. Just sending you virtual hugs, Not helpful really in any way but wanted you to know I am thinking about you hun xxx

oh @MC8 in so sorry to hear this. It’s so unbelievable really and there are no words. Hope your EPU can pull its finger out - where are you based - try and even get the pregnant tested? How many losses have you had with the CRP now? My first two with them were empty sacs and it just made no sense and then I took inofolic and added in the pred and that’s when I saw my first heartbeat - we lost that one due to trisomy 21.

sending you loads of love. I am dreading my scan tomorrow for this exact reason. we are all such resilient women - and if I have got through it before I can do again. Well that’s what I keep trying to tell myself.

@Jecca88 Will be thinking of you tomorrow with prayer and hope your scan goes well xx