Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

Thank you for the extra detail. It’s so helpful! Isn’t it absolutely crazy what you have to go through to get anywhere. I’ve sat in front of so many “specialists” in recurrent miscarriage and endocrinologists who all told me - yes, you have hashimotos but your thyroid is fine. They didn’t even look at my antibody levels or talk about how to get them down. Unfortunately, all this research and trial and error takes so much time. 18 months of blockers! But I honestly now feel like I’m getting close to answers. To be right back at hashimotos again but with the knowledge that there’s a direct link with implantation failure. Just unbelievable. This information should be part of an early appointment for recurrent miscarriage! It actually scares me that all the progress I’ve made has been down to lucky google searches of mine! Sorry for ranting 🤣 But only you ladies on here know what it’s like! X

Hey, not a good update from me. The baby died a couple of days after my last scan. My second loss on the plan with Dr S 💔 I'm having surgery on Wednesday 😢 and we'll send the baby for testing. It's awful but I hope that there is a chromosomal issue so we know it's not the immune plan. But what if its normal? 😢😢 I can't face miscarrying at home again, so chose the surgery but am scared something bad will happen to me.

I just don't understand what went wrong. Why is this not working for us? 😓 😓

@VenusStarr I am so so sorry

@SunDance21 😢❤️ thank you xx

@VenusStarr Again I am so sorry for your loss and and I apologise if this is not an appropriate time to mention this but if my story helps you in anyway then I would like to share. Have you considered having your embryos genetically tested? Obviously every fertilisation event is different and can depend on so many factors including age - I had my first egg collection at 38 and my husband was 44. We got 10 embryos to blastocyst stage but only one was normal once the genetic testing was performed. This was a bit of a shock. Whilst the transfer was a success I had a MMC and this is what what trigged me to explore further testing and hence the immune treatment this time round. Second time round we got 13 to blastocyst stage of which 6 were normal. The first time round our IVF consultant did say that the chromosomal abnormalities may well be part of our jigsaw puzzle in relation to the losses we had experienced after natural conception and this has stuck with me. If we hadn't had the genetic testing we would still be working through the first 10 embryos. Again I apologise if this wasn't an appropriate time and appreciate nothing can change the hurst you are experiencing but the testing has certainly saved us a lot of additional heartache so I'm only mentioning with best intentions. Sending you lots of love and I really hope you get some answers 💕

Thanks @RosieLeeD ❤️
We did talking about embryo testing with the ivf clinic and Dr S and both thought that due to my low amh and the fact that I'd had 3 identical MMCs previously (one tested as normal) that it wasn't necessary. This one stopped growing at exactly the same point. I'm hoping this time it was chromosomal but I feel like it might not be 😢 I don't know what Dr S will suggest, they obviously want to wait for the results, but last time it took about 10 weeks.

We'd have to embryo bank as I only got 3 fertilised eggs this time at 37 (38 now). X

@VenusStarr I'm so so so sorry to read this. I have had everything crossed for you since your last post and desperately hoped you'd get good news today.

I know you must be so heartbroken and disappointed right now. Nothing any of us can say will help with that, though I wish it could, but do know we are thinking of you and sending all the positive vibes.

I really hope Dr S has some positive suggestions for you. When are you seeing him? I do have faith in him that he can help even difficult cases, he seems to have huge success even if it takes a few attempts at tweaking medications. I know that isn't much consolation then you're in the middle of another crushing disappointment though. Sending lots of love x

@VenusStarr I'm so sorry for your recent loss, it's heartbreaking. I echo what @treesall has said and that he can help you find a way to a solution and that you can feel some hope. Sending so much love x

@VenusStarr I’m so sorry you’re going through this. It is so heartbreaking and so brutal ❤️ life can be so so cruel xx

Thank you @treesall ❤️ I was absolutely exhausted yesterday and managed to sleep until about 5 but woke up and my breasts are hurting lots and have just been crying since 😢 I had to get up but I'm just downstairs crying on my own. I'm so scared about the surgery. I just feel I've let everyone down, especially the baby. I don't understand.
CRP said to wait for the baby's test result before I see Dr S, but they took 10 weeks last time and that was with me chasing them. I hope he can help us. I don't know what else he can suggest or why it isn't working why doesn't my body let my babies live beyond 6+1/2?

I can't remember if I said, but in the first epu scan they couldn't find the yolk sac but obviously there was a heartbeat. I've tried to Google and I can't find anything about lack of yolk - everything just says anembryonic pregnancy if no yolk, but we definitely have a small embryo. So I'm so wondering (and driving myself crazy) if that means something significant like a chromosomal issue? Does anyone know?

I'm scared they won't get tissue to test or it'll be inconclusive and we'll have no answers. I just can't believe this is happening and this is my life. Six babies 😢

Thank you as well @Lozfish @NImama ❤️

@NImama I'm happy you found a good endocrinologist now. It's not easy to find someone that has a clue and is willing to help. Similar to @Wireless77 I have tried all sorts of things previously. Some things improved my Hashimotos, but I never got into remission. I also think that it's probably worth looking into stronger medication such as hydroxy or prednisolone.

@VenusStarr I'm so incredibly sorry to hear what happened. I don't even know what to say. ❤️
I was really hoping for a different outcome.
Hopefully tomorrow will be over quickly and all will go well.
Take good care of yourself. I'm sending you a big hug. Xx

Hi @VenusStarr. I'm so sad for you reading your message and I do understand the feeling of having let everyone down, even though of course you haven't. Being the female is a lot of pressure in this situation and I've often wished it didn't have to be me going through it all.

I don't know much about yolk saks or embryos, however one of my close friends had something similar with her last round of IVF - there was a strong heartbeat but at 6 weeks they could already see it wasn't growing properly. I think the heart stopped somewhere between 7-8 weeks. She didn't find out whether it was a chromosomal abnormality or not but she has carried to full term before so it's likely that it was that rather than anything else. Do you have any more embryos frozen? What is your IVF consultant advising you do next? Thinking of you xxx

@VenusStarr it's not the same thing, so I'm not sure this will help you, but... my last pregnancy was a MMC. The embryo grew fine, we saw a heartbeat twice, but the gestational sac didn't grow at all. It was essentially the same size at every scan I went for. The embryo died when it reached the same size as the sac.

There was clearly something wrong, as it clearly didn't grow properly. Our tiny embryo was 7 weeks in size and the gestational sac was just 4.

However our results came back saying "nothing wrong". We were told when we sent it off that they only scan for a certain set of things, so even if you're told it's chromosomally normal, it doesn't necessarily mean that there wasn't an abnormality. This was through the NHS, I'm in SE and it was sent to London at the Tommy's clinic.

Make sure you continue to be your own advocate. You're not a failure, you've done nothing wrong. By being in this group and going through what you are you're proving that you're so strong, resilient and trying your absolute hardest. None of this is your fault ❤️

I'll be thinking of you tomorrow ❤️

@VenusStarr I just wanted to send you love for today and I really hope that you get some answers. In the mean time be kind to yourself, absolutely none of this is your fault xxx

@VenusStarr I'm so so sorry for your loss, such devastating news. Try not to be hard on yourself, you are doing your absolute best, you have let noone down. Thinking of you today and sending lots of hugs. X

@VenusStarr thinking about you today. Sending you strength xx

@VenusStarr thinking of you and understand what you’re going through. Give yourself time and be kind to yourself x

Just catching up and so so sorry to hear your news @VenusStarr, utterly heartbreaking, I hope you are recovering as well as possible and have good people around you :’( xxx

I'm not sure if anyone has seen the news about Jessie J. I'm so devastated for her but so so grateful she's shared her story. With over 10million followers on Instagram that will do the world of good for the silence around miscarriage ❤️

@VenusStarr I have just checked in here after a few months off and I am so so sorry to see your sad news. It can feel like you're the only one going through this over and over but you're not alone, I've had 7 losses now (2 on Dr S' plan) and I too just can't understand what is going on? Where is my happy ending?

I'm thinking it is what @RosieLeeD says and maybe just chromosomal issues? I got 5 blastocysts at my last egg collection but couldn't afford to get them tested....I have no other answers what it could be? We have only 1 embryo left and the ivf team have messed up my dates so I may have to wait till after Christmas now for my next transfer and they said there's no point testing it as it probably wouldn't survive. I feel like I just want to get it over with as I can't take many more losses.

I was walking round the shopping centre today and there were so many new mums pushing their prams and I just kept thinking what is it that's wrong in me, why is this happening yet its so easy for everyone else? I try not to think too much, else I would cry forever! Time is very much against me like a big ticking clock aah!

Anyway , that's literally no help to you at all but I feel your pain. I'm still here if you ever need a chat, sending big hugs ❤ xxx

@VenusStarr so sorry to hear your news. I had to take a bit of time away from this thread as there is at least one person on here who is exactly the same number of weeks pregnant as I should be. Just thought I’d pop back to see the latest, am gutted for you. I hope the surgery went ok. Let me know if you decide to embryo bank as we are starting in January & PGS testing. I’m pretty depressed about it for various reasons & don’t think it will work. I won’t be back on here very often but will try and check back every now & then.

Hi again everyone, I just wondered if I could once again use your wealth of knowledge. Does anyone know if you have immune issues, after you carry to term, do you still have those immune issues? Or is it like an illness type situation where your body learns how to deal
with it if that makes sense? I'm basically asking if we're lucky enough to have another, is it likely I need to take steroids again? I'm not sure I'm willing to take the risk of not, but I'm just wondering if anyone knows.

I don't really want to start that discussion on this thread, because I know it's hard to read about successful pregnancies, so if any of you do know, maybe could you send me a PM?

I'm still thinking of you all ❤️ @VenusStarr I am so very sorry to read your news 💔

Hey @Daffodil21 I don't know much about this, but I did listen to Katherine Ryan talk about her issues and how the doctors wouldn't take her seriously when she was having miscarriages because she had previously had a healthy baby at full term. She actually saw Dr. Shehata after two 13 week losses last year and he treated her for an auto immune condition, so I think I would err on the safe side and have a consultation with him to check where you're at x

@Daffodil21 I asked dr S this as the end of my treatment. He said that in almost all cases the immune response is stronger and definitely requires medication in a subsequent pregnancy. He said he's had two cases ever where retesting prior to a second pregnancy showed normal killer cells not needing treatment. Not what I was hoping to hear!

@Lozfish this is interesting - I remember seeing her on celebrity beat the chasers and I said to my friend I thought she was pregnant and on steroids because she had the pred look going on that I had. I'm guessing she probably was then. I'm not under his care and I can't afford to without asking my in-laws to pay for it (which they were going to before we had our successful pregnancy). My GP has said to book an appointment so we're already on the waiting list for referrals when we are ready for a second, so it sounds like they are going to help. But if they don't I'll just book an appointment with the clinic I used before and take the same meds again. Thank you. I hope you're ok x

@treesall thanks, I'll definitely take the same again just to be sure. I think I would have anyway but just in case the answer was 'no you definitely don't need to be treated again' I thought I would ask the question! Hope you're doing well x