Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

Thank you @VenusStarr 💖. Lol yep fucking shit sums it up. Wasnt sure of the rules on here lol. It's nice to talk with people who get it and are still on the process. So many online friends I've made have cracked the code and had their babies!
I'm sorry to hear you've also had a recent difficult cycle.

My cytokines is the main immune issue for me. Blood nk cells are only slightly raised. So I tried humira last year April/May and it flared my cytokines. I wonder though if that's how it works. I'll ask again. What I did last year is switch to tacro after the 2 doses of humira went badly and then saw a drastic reduction in my cytokines. That being said, I didn't retest before the transfer. I tried LIT in 2021 and my LADs improved but then tried that with natural pregnancy and made no difference. I wouldn't be against trying it with a pgs tested embryo though. So hubby's frag was initially 40% then went down to 35% then 29% when reated before our last egg collection in 2020. Still using the embryos from that batch as we took a long break. If we make more embryos which looks likely though, I'll get him to do it again.

We did the Emma Alice test back in 2020 which looks for hidden infections and didn't find any. Not sure if it's worth doing it again though or doing the menstrual blood one... it is just such a specific time that they end which makes me think its a specific issue. But knowing my luck it'll be an issue that hasn't been discovered yet 🙄. It's so hard to walk away after everything that we've put into this.

Have you had any of the biopsies to check your unk cells at all? Xx

You've been through so much 😔 @Danni8 it consumes everything. Swear away 🙂 you do start to feel like you're the only one left still trying. We're over 5.5years now. Feel like it's been so long but if we stop now, all that time money and effort is just for nothing.

With the hidden infection, we only discovered it through a urine pcr test. I'd previously done the endometrio tests and nothing showed but we then got dh to do the dna frag test after a disastrous ivf cycle last year and it was higher than average, so we saw the specialist attached to Dr Shehata's clinic and he recommended the urine test. When dh's came back with the ureaplasma I had to have one too and we both had it. No idea why the Emma / Alice test didnt show it though (can't remember which ones which). Dh has been on impryl ever since but not retested so far.

I had the uNK done with Professor Brosens in Coventry. One was fine, so just got given progesterone and conceived quickly but had my 4th loss. We saw Dr S after that. But I went back just before our first ivf cycle as I'd wanted the endo scratch benefit. That one was very low, 0.71% so they prescribed sitagliptin for 3 months. But I think that made my lining crap. Dr Shehata wasn't happy with me taking it and doesn't think uterine nk cells are an issue. I regret the sitagliptin because I just the had months of thin lining issues. I had to do a low dose stim to get my lining just over 7mm (it was shrinking on normal medicated FETs). We collected the eggs but with low amh we got one rubbish morula, our last frozen embryo degenerated after the thaw, we put both back and had no implantation.

Does LIT not last? I really am starting to resent the money we have to spend just for a chance. Xx

Exactly. I keep thinking we didn't come this far to just come this far right!?

Aah thanks for that. Did finding the ureaplasma make any difference at all? Like did it get you further along? I keep looking for signs that my treatment is at least on the right track but so far nothing. Not seen a heartbeat before. Do you know who the urologist did the urine pcr through?

Oh gosh the sitaglitpltin made your lining crap!? No way. I tried it for 3 months then did another 2 month stint. No difference made. They've not published any studies on it since 2020 which isn't encouraging. 🙃Xx

Hi - I’ve just been catching up on the thread after a while and I just wanted to say how sorry I was to read about your updates @InvisibleDreamer @VenusStarr @Danni8

Absolutely heartbroken for all of you. I wish I had helpful advice or words of wisdom but in the absence of that - I’m sending you all a big hug and lots of love.

I’m sure everyone on this thread can relate to the pure heartbreak that comes with a negative pregnancy test or bad scan ….. your heart absolutely sinks and you’re not sure how to pick yourself back up, regain the hope that’s been shattered and carry on. But know that we’re all rooting for you! Xx

@Danni8 We only did the Doxycycline in February and cycle just gone was our first time ttc. We saw Dr Stephen Gordon at CRP in Epsom. He only works Mondays there, so not sure where else he's based. But we liked him, he explained things well and didn't want us to spend unnecessarily. We also tested dh's testosterone (was normal but he said if under 12 he'd prescribe him clomid).

It seems sitagliptin is more common to use now but like you say, not convinced on the evidence.... my last pregnancy was November 2021 from my first FET, all textbook. Saw heartbeat but was measuring 2 days behind and no yolk sac. Next scan heart had stopped. We tested and she was healthy, so all the immunes got me to the exact same point. Dr Shehata has added gcsf now but I've barely tried it as couldn't transfer last year due to my crappy lining. We've got no embryos left now (ivf was when I was 37 and I'm 40 soon).
I think well save for one final round of ivf for later in the year.

@SReyn thank you. I hope you're well ❤️

@star2022 any sign of af? Hope you're not in limbo much longer.

Spotting has started today, so think I did ovulate on the evening of my trigger. We'd definitely covered all bases so couldn't have done much more. The only thing that was off was my thyroid. I'm going into my 3rd week of a higher levothyroxine dose, so it's probably best to take this month off, although not going to avoid ovulation either.

How are you @comingsoon786110 ? Hope you're doing ok. Xx

@Danni8 I'm so sorry to read about everything you've been through, sending you lots of love. I wish I could help in any way but I don't have any experience of what you've been through. Just wanted to say that I really hope you find some answers and you get your miracle soon! 🍀

@VenusStarr How are you feeling today? Oh so you think you ovulated on trigger day? I always thought it was 36 hours later but yes if you're spotting then the dates would make sense. Do you usually feel ovulation? It makes sense about your thyroid and giving it a month off, I have read thyroid is really important and that it should be between 1-2 so I think you've made the right decision to make sure thats all fine before you go ahead.

AF finally arrived for me yesterday, but its spotting and even this morning so I can't quite class it as day 1 yet. Just hope I get full flow so I know for sure when to start my letrozole. I also haven't had any period pains so i'm really hoping my bad periods were due to the polyp and that they'll be much better now 🤞

@Zest11 How are you feeling about friday? Good luck for EC!

@VenusStarr I'm okay I guess just keeping really busy at work. I emailed the nurses at CRP about the heparin being offered to me at RMC and they said Dr Edge has advised against it. I sent them over my report but they are advising not to take it. So again I'm in a limbo.

I feel like after so many losses you are literally willing to try anything in the hopes that it will work! Not sure how I feel about all this.

I'm not willing to risk another loss but then again I don't want to be taking medication when I have been advised against it by the clinic.

@VenusStarr how are you getting on? Hope you have tried to keep your mind off things and kept positive even though we all know how extremely difficult that it given what we are all struggling with.

It just seems so unfair that this is something we have to go through and spend so much on. Don't want to seem ungrateful but some days are just so difficult and bring you down.

@star2022 I was on such a downer yesterday, ate loads of crap and just felt lethargic and crap. I've booked a gym class for later though so not dwelling on it. Spotting is very light, so hopefully will pick up.
My follicles were 20mm and I did feel like I was ovulating strongly about an hour before the trigger. I actually ovulated my largest follicle before egg collection last October as well, so I guess when mine reach a certain point, there's no return 😕
My thyroid was over 3, so hoping with this extra dose (am on 75mcg now) it'll get back in range 🙏

Sorry af is having a slow start for you, hopefully it'll get going and you can start letrozole tomorrow 🤞good about no pain though, hopefully now the polyp has gone it'll be better.

@comingsoon786110 I'm sorry you're getting mixed messages from specialists. I was on fragmin with ivf, but its not part of my usual protocol as I don't have any markers for it. Why did St Mary's prescribe it?
Its so hard to know what to do and fully trust anything, I'm sorry you're in limbo with it though ❤️
Yesterday was a washout to be honest, I realised that I'd done nothing in the evening, so when I went to bed, I booked in some gym classes for the week. I'd been in a good routine before this cycle, and it made me feel better in general. I feel very sluggish today but am looking forward to the class later.

I can't remember if I said, but dh is being made redundant 😬🙄 (hate the company he works for). But he secured a fab job following an interview on Monday 🤩 better work-life balance. So that's a relief. And he can hopefully have a week or two break before he starts to recover. He still needs more surgery after what happened on holiday but things are moving in the right direction.

X

@VenusStarr I literally think St Mary's had no other advice to offer me so they said heptagon. I haven't heard anything from them after that, don't even know what's going on there. All pretty shit tbh.

Aww that's good news for you finally! I'm pleased for you 🧡🧡

Does anybody know what Dr S can add if GCSF doesn't work? I'm definitely not going to be trying IVIG ever because that's just disgustingly expensive. I'm thinking of having my embryos tested but I know he doesn't agree with that as he said if you are able to get pregnant there should be any issues. Also when it comes to several repeat miscarriages then it's unlikely an chromosomal issue, more immune.

I feel defeated 😔

That is really shit of St Mary's 😪 @comingsoon786110 I think Sr S would maybe look at Tacrolimus that @StillTrying10000 used. I know its an intense drug and you need regular monitoring but haven't looked into it myself.

I'm sorry you're feeling defeated ❤️ it's a lot to deal with and it does start to get on top of you. Are you going straight into another ttc cycle?

It's really hard not to feel like it's unfair when you're on so many medications to control your immune system and they still don't work. Like, I don't understand how it works for some and not others 💔

Hope you're getting on OK today @Danni8 let us know how it goes with Dr Gorgy x

@comingsoon786110 sorry to hear you're in limbo about all this, it's so hard isn't it when different healthcare professionals say different things. I know when I went for my initial consultation with dr s they mentioned about not prescribing heparins and that they're against it as there is no real evidence that it helps. I have looked into it (I have a medical background so this stuff intrigues me lol) and can see so many studies saying there's little to no evidence of the use of anticoagulants and that it can in fact create more of a risk later on. Have you done any research yourself at all? I know when I hear conflicting advice, I have to just do my own research and make my own mind up. I know that CRP do everything backed by research and I do believe they don't just prescribe or do things just for the sake of it, it's always based on your bloods and results. I would maybe just see if you can get some clarity from your other clinic perhaps as to why they think its necessary? Are you also on aspirin as that would be working similarly. I was put on Clexane during ivf, and my consultant just gave it to ''cover all bases'' but I had no real need for it nor did he give me a reason why i needed it.

@VenusStarr ahh you're so good hitting the gym up! Honestly, these small wins are so hard when you're feeling like shit so well done for keeping going 💪 I did about 20 mins on the bike today despite feeling crap too but glad I did it. Also, full flow has arrived thank god!!

Yay! 🙌 @star2022 glad you can get going again. My period has arrived too... there's some sort of irony that my body really does like to perform like clockwork, except when I'm pregnant 🙄 I did even have a thought about doing letrozole and then we could schedule a CRP / intralipids meet! But decided that was nuts. Definitely taking this month off hormones!

Thanks @SReyn and @star2022 its such a hard process. I'm starting to feel untreatable which is soul destroying. I'll take some time to process before making any big decisions.
@comingsoon786110 it's so hard when Dr's say different things. Why is Dr Edge against the heparin for you? Can it have the opposite effect if you don't need it?

@VenusStarr Aaah that makes sense so you're doing superovulation now until you can save for more ivf. I didn't know Dr S was offering tacro now! Interesting.
Well done on booking a gym class lovely. That usually makes me feel better too. What class is it? Fertility Consultant made me stop the gym so the past 2 years I've just done classpass when I'm not trying but now I think fck it, I'm going to join a nice gym with a good spa area.
So the appointment with Gorgy was okay. The nice part is, he thinks there are tweaks that can be made. But I feel really discouraged and close to quiting which I've not felt before.
Anyway he said that testing (as my clinic does) for pregnancy 14 days after transfer is too late. It should be 9 days and if the beta is sufficient, then to do ivig then. He said I need a bigger ivig dose (the even more stupidly expensive one) as I'm heavy (thanks to nearly 6 years trying, miscarriages, steroids, hormones and comfort eating). He also told me to retest my LADs to see if i need to do LIT again. He was hesitant to add more immune stuff because he doesn't want to over suppress the uterine lining. He also mentioned PRP (platelet rich plasma) which I'd never heard of. Apparently used for thin lining and to improve lining quality. I never have issues with thin lining so it would be for quality and instead of the neupogen wash. Really unsure of my next move tbh. Maybe I just need time to think.
Xxx

@Danni8 I went to zumba. I always just find them quite fun and I do get my heartrate up. I'm totally uncoordinated so it makes me laugh too.

I'm glad you seen Dr Gorgy have he's explained things a bit more. I'm sorry you're feeling untreatable ❤️ its very hard, especially when you're going through another loss at the same time. I'm glad he was able to talk through some other options for you. Its so frustrating that it's all so expensive though.
I've heard of PRP, I think sometimes it's used directly into the ovaries to give the follicles a boost. I didn't think it was done in the UK, have seen it more in ivf abroad.
It does sound very overwhelming and time to look at the options sounds good.
How are you managing this pregnancy loss, will you have surgery or medication? Sending a big hug xx

@VenusStarr ahh that would have been a great idea as we're cycle buddies! Well if i'm back here again next month, and our cycles line up we can definitely do that <3 how are you feeling today? I love a good zumba although my coordination is terrible!

I'm just in shock at how different my period is this month. I've had hardly any pains and not heavy at all. It used to be so bad before the polyp was removed that I was genuinely worried if I had endo because I used to be bed ridden for the first two days and had so much pain. It makes me wonder whether my uterine environment was just that toxic that embryos weren't implanting so I feel a lot more hopeful that I'm heading in the right direction now after getting the hysteroscopy done so thanks to everyone who advised me to get it done. I've got my scan booked for next week, and start my letrozole tonight 🤞🏼🤞🏼🤞🏼

@VenusStarr I used to LOVE Zumba! I didn't know they still do it. Felt like it was really popular pre 2014 but died out. Flad it's still going somewhere!

So as if it was possible, my week has gone from bad to laughably worse. I was meant to go out with 2 friends this evening that I met on a friend app back in 2019 when I was trying to pull myself out of miscarriage antisocial life. An hour before the booking friend 1 (who im closest to) cancels and says she has been napping nd struggling to get up. She thought she could cope but can and she's really sorry. So of course I ask in the group and 1-1 if she's okay. Then she says something like "I'll explain next time I see you whats up". Then about 30 mins later, puts in the group "I'm 🤰🏼and exhaustion is kicking my ass so yeah that sums it up" then deletes it from the group and messages me that message directly because (yes, she knows what I've been through). It's ridiculous just how one can be kicked while they're already down. Wtf am I supposed to do with that!? Also she got with her boyfriend a few months ago. So yeah. Extra cherry on top. Any other time I think I could handle it better bit 2 days after a shit scan while I'm waiting to miscarry is horrible timing

Anyway. For all more losses its been expectant management. Never had the meds or the surgery for it. The shit thing is that's its my bday in just over a week and so it would be great if it happens before but something tells me otherwise 😔 xx

Oh @Danni8 I'm so sorry, that's really insensitive! Can't believe she did that ❤️ and the timing is really awful.
I'm so sorry you've got this over your birthday too. I mean there's never a good time, but the waiting is awful. I wish there was something could do or say. Just know I'm thinking of you xx

Zumba is going strong by me, there's literally classes every day! I only discovered it last November when I joined the gym (I was a bit snobby about it before) so gave it a go. The lady who does the Saturday class is amazing, she's got so much energy and it's good fun. My fitbit tells me I burn about 600 calories with her. Full convert now 😍

I'm still your cycle buddy @star2022 I'm tempted to just try loosely this cycle. The likelihood of us conceiving naturally is tiny. I'm not going to do any meds though.
I'm so pleased your period is better since the polyp removal 🙏 this is a good sign for you xx

Hi all, hope you're all doing well!

@VenusStarr I'm so sorry your period came :( I have done 3 letrozole cycles before (2 with trigger) and didn't conceive on any of them, despite scans showing everything was looking great. It is so disappointing because you have your hopes up, and have spent loads of money too. I think it's a great idea to have a cycle off the SO programme so there's less pressure and you can feel better mentally.

@Danni8 I'm so sorry about all of your losses, can't imagine how you are feeling. Hope you are holding up as ok as possible. Also can't believe how insensitive your friend was, that is absolutely awful. What a dick.

I had a horrible appointment with a doctor yesterday in a follow-up after my NHS RM appointment. She told me I haven't had recurrent miscarriages, because only one of them was seen on a scan and the other 3 are all chemicals which are very common. I understand the other 3 are classed as chemicals (happening around 5-6 weeks) but other doctors have agreed it's recurrent miscarriage, and I really felt she was undermining my experience.

She also said I have been testing too early and that's why I'm picking up these chemicals, which most people would miss. I told her that my period was 2 weeks late and I think most people would suspect they were pregnant if that happened!

She also said the NHS won't do any more tests on me, but then spent ages saying that NK cell testing is a complete waste of time and money. She said to just keep trying and it will work out at some point. I was crying my eyes out during the appointment due to feeling so invalidated and basically to be told I have to keep going through this experience. I've had so many doctors appointments for fertility/miscarriages and have never cried before but she really got to me. And still feeling angry today :(

Seriously hope Dr Shehata's plan can work for me and I can write to her telling her I did have high NK cells and benefit from his treatment!

@Lily1990 I'm so sorry you had such a horrible appointment yesterday ❤️ what a bitch. Its completely invalidating and dismissive. But also, she's not offering anything. We had similar, just keep trying it should happen. No support for the trauma or repeated losses, no matter how early they are. I'm so angry for you. I really hope the plan works and you can tell her to shove her advice.

Thank you, I'm feeling OK now. I was really disappointed but should know really that it would've been a bit of a miracle if it had actually worked the first month everything went to plan. The other 2 times I did it were a disaster so trying to take the win that i do respond to letrozole abd my lining was good. My period is nearly finished now. I think I'm resigned to us needing to do one more round of ivf. I'm not ready yet, so think we'll do 3 more superovulation but over 6 cycles and then get the ball rolling. It'll be our last go I think as we have no more money (I think we're on about £35k spent now). We'll have to plan it because dh's new job is Monday to Friday now and he was shift working before. But will cross that bridge when it comes.

Hope everyone is ok today 💗 xx

@VenusStarr what is Tacrolimus and what is it used for? apologies if its been mentioned before.

I received my letter from St Mary's RMC letting my GP know that they have discharged me because I refused the hysteroscopy. Does anyone know on what grounds NHS offer IVF and if it will work if I have high NK cells. Don't think it will really as my immune system would also attack that embryo.

I've had a rough few days. Literally balling my eyes out to the point they are sore. I feel heartbroken and devastated. I picked a massive fight with my husband yesterday and ended up blocking him on whatsapp which I have never done since I've known him. Hubby and I have discussed adoption as well as I feel as though I'm done trying. I say that now but during my next fertility week I will be tracking like crazy again. I just don't think I can even get to that scan point to see a flickering heart beat let alone have a baby in my arms. I honestly don't know how you all do this and I admire you. I feel like my time at CRP has come to an end as I honestly cannot afford it anymore and even if I did continue with them, there is no guarantee any sort of treatment would work for me.

Okay rant over, back to work.

How is everyone else doing. It would be good for a few people to post some of their success stories on here. I feel like we could all use some positivity this Friday afternoon.

Sorry to all of you who are going through tough times right now and I pray we all see light at the end of the tunnel😙

Oh @comingsoon786110 big hugs ❤️❤️ it's so overwhelming. I've definitely picked fights with dh before now. It's stressful. Hope things are better today.

That drug is something the Dr S used with @StillTrying10000 and she had success. But I haven't been offered it or looked into it much.

I don't think we'll go down the adoption route if we decide to stop. I used to think we might and my friend adopted a few years ago after infertility (they didn't do ivf or have losses. Just never conceived). But I don't feel I have the capacity to navigate another complex issue/system.

I thought my period was nearly done but this afternoon its suddenly got heavy again 🙄

I do find going to the clinic intense. It's a lot of travel and you get your hopes up and then your period comes and you start again. We did it for 6 months and I look back now and can't think how I did that. Every other month for me feels more manageable now. Especially with the cost of all the meds.

We had nhs ivf. Due to our infertility issues initially, we were already on the ivf pathway. But I got pregnant on cycle 16 then had 4 natural losses over 18 months. I think you'd need the immune stuff alongside ivf (although I did and I still miscarried so still not a guarantee). But some nhs ivf clinics don't like add ons so you might have to do it under the radar. The policy in my area is no lives births after ttc for 2 years and we were entitled to one fresh cycle. Some areas say no pregnancy in 2 years though do you might need to check your area. Xx

hi all,
reading your thread and so sorry to read of some of the stories here and hoping everyone gets the outcome they are dreaming of.
I have joined as just looking to find out more about people’s stories with immune issues.
My story:
TTC for 3 years
diagnosed with low ovarian reserve AMH 1.5 at age 33.
first ivf abandoned due to poor response
second ivf one embryo, ectopic pregnancy
found to have positive antibodies for immune issue and given steroids
third ivf, two embryos, one resulted in miscarriage at 7 weeks
now found to have high cytokines and Nk cells
got one frozen embryo
going to do steroids and intralipids in June hopefully.

it’s a journey!!

@Danni8 a friend saying they're pregnant as you're going through a miscarriage is horrible. I've been there - walking out of hospital and getting a scan photo. To be fair the feiend had no idea but I remember feeling like I couldn't breathe.

@comingsoon786110 I didn't want to be insensitive before to everyone going through a tough time but hopefully my story will give everyone some hope.

• Had a son in 2017 with no issues
• Conceived again in Dec 21 but had a miscarriage at around 6 weeks
• Conceived again in March 22 - saw a heatbeat at 7+3 days and had a miscarriage a few days later
• Was referred to Dr Shehata via my GP and had an appointment in Oct 22. Confirmed I had v high NK cells and put on Hydroxy, Progesterone and the other standard vitamins Dr S recommended
• Conceived again in Dec 22 which turned into a chemical pregnant

-RMC recommedes trying again on the same plan and I'm now 13 weeks pregnant

It's not been so completely straightforward as I've had bleeding throughout but by some miracle the baby was fine. The only thing I did differently was that I started accupuncture. Injust felt mentally I needed something more holistic.

I hope this gives others hope xx

Hi all sorry to hear everyones having a rough time lately @Danni8 @Lily1990 @comingsoon786110 sending you all love, lets hope brighter days are coming xx

I also picked a massive fight with dh last night and was bawling my eyes out. Not sure if it was the letrozole making me feeling super low and ratty, and maybe a combination of starting a new cycle again, trying to stay hopeful but then feeling so fearful at the same time of it not working and just feeling like shit again riddled with anxiety. I'm also feeling super deflated and not sure how much longer I can go on being on meds and not being able to feel like myself while everyone else around us seems to be getting on with their lives so easily popping kids out. I've also had that insensitivity of an announcement during a chemical. It really is such a cruel and lonely process but i'm so thankful for this group ❤️

Thanks for sharing your success story @SReyn and congrats! Anyone else got any more to share?

@VenusStarr I think you have a good plan in place. I genuinely don't know how people do these cycles back to back and how you did it, part of me thinks doing a cycle on and off would be better for me too because the longer i'm on this process, the more i feel my health and mind deteriorating each day. Dh and I were also discussing the travel to epsom too today and how much it takes it out of us, not to mention the cost racking up too. I hope your period gets better, mine has come back with a vengeance today too, I think I spoke too soon! xx

Thank you @SReyn for sharing and all the best in your pregnancy 🧡🧡🧡

For those of you who take GCSF injections do you get random bone pain in your arms or legs etc... I will be sitting and something will randomly start and then go away on it's own.

I've also come down with a cold today and dreading to take a test. I work in social care so wouldn't be surprised if it was covid. All the meds I'm on are really making me weak, I keep getting a cold almost every month.

How is everyone doing 🙂🙂🙂