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

@TheHopefulEgg wow that's really interesting and sounds like it'll be really useful.
Hopefully it will get you some answers and solutions to at least part of the issue. Are you under St Mary's at the moment? Xx

@myrainbowjourney I’ve decided to go with The Evewell, mainly because of their patient care, and my consultant referred me to Raj Rai for the TEG test specifically. All other tests will be with the clinic and we’re repeating immunes, although my partner is going to see the urologist Jonathan Ramsay as he’s previously had high sperm DNA frag.

To give you a bit of background, I’ve previously had immune testing with another private clinic in London (results have been borderline, once slightly in positive range but later in negative) and been to Athens for a hysteroscopy and treatment for endometritis. My local NHS have performed a lot of tests over the years, some were even repeated, so I’ve had fairly good care but felt so hopeless (and like a bit of a science experiment) after our sixth loss. I did have aspirin and clexane in that pregnancy because clotting was a possibility. (I was steered away from progesterone and steroids.) I just couldn’t carry on trying naturally and expecting a different result.

I feel a bit more like myself again after a two year break. Being in a good place emotionally and mentally was my aim I suppose and I’m now trying to get into slightly better physical health before starting IVF for the first time. The reason for that is ICSI and PGT-A as we know for sure that we’ve had one chromosomally abnormal pregnancy. Two have been normal. But we don’t know about the others. So IVF gets us over some potential hurdles before a pregnancy even starts. Hopefully, it’s the route for us.

Going to have a longer read on this thread later and find out more about your experiences. Only been back a few pages, so far x

@TheHopefulEgg gosh I'm so sorry to hear what a long journey you've been on. I agree with you with keep trying naturally. The NHS wanted us to keep trying and it will happen and I just didn't have it in me to go through loss after loss and hope for luck.

I've heard great things about the Evewell. Do they do the immune testing/steroid treatment etc?

Can I ask if it's much more expensive than some other clinics? Please don't answer if you don't want to.

A 2 year break sounds refreshing. I can totally see how you needed it to feel like yourself. I feel like I'm a different person and I seem to not do as much as I used to - I guess as I said earlier it feels like I'll miss something of TTC or I'll do something to reduce my chances. Socialising has become 'risky' because of a few Proseccos 🙄

Another question you don't have to ask - do you mind me asking how old you are?

As I said please feel free not to answer if you don't want to.

It's so lovely talking to amazing ladies who know what this all feels like. Just wish none of us were here talking about it xxx

@myrainbowjourney we spoke with a couple of clinics, and a friend was with ARGC, so we spent some time weighing it all up and decided on The Evewell because of their record for patient care. They're doing the immune testing and will also offer treatment (whether that's steroids or intralipids) if needed. I don't know an awful lot about current treatments for immunes tbh as it's been a good few years since I last looked into it. I’m sure things have changed? But I can’t forget the twixmas I spent reading Lesley Regan’s and Alan Beer’s books back to back

On costs, I’ll be honest, we’re investing a good few thousand more by going with The Evewell over other clinics. We sold our home to help make this happen. (Gah!) But I suppose I felt seen and heard by them and they get that I want to cover every possible base. I need to know I’ve done what I can otherwise there will always be a “what if?” We’re fortunate to be able to give it a go though so I'm kind of seeing this opportunity as a fresh start.

Even being in a new home is kind of helpful, in a way, as I was so affected by my old surroundings and the various miscarriages. My mental health was so bad before the pandemic even hit, and my NHS care was poor after the last miscarriage (which was a shock as up to then it had been spot on), so it’s about getting the right support in place this time.

I’m 37 but feel about 57 so got a bit to do before I feel energised enough to start the process. Tell me more about you x

@TheHopefulEgg thank you for sharing. I suspected that the Evewell was a little more pricey, but from what I've seen, they are brilliant. So I think it's amazing you are having treatment there, I'm jealous for the day I might need IVF!

Sounds like you've had a real good refresh and I'm sure it really will do the world of good.

I am on steroids and intralipids so it sounds as though the treatment is the same.

I think with cost, it's so difficult. I feel like I've wasted a load of money, but only because it hasn't worked (yet). But I know I'd be in the 'what if' camp if we hadn't done it. And I think for me it's just feeling like you are doing something that might help. I think if we were going at it alone, I'd feel so much more anxious.

Me in a nutshell, because you may have read it so apologies if you have.

I'm 36, feel hugely like I'm running out of time even though everyone tells me 36 is young. Definitely not feeling that.
Got pregnant with my first in March 2020 and was elated. Lost it at about 6 weeks. Had another 2 losses over the course of the next year. Pregnancy tests now fill me with dread as opposed to any joy.
Referred to RMC and they said all tests came back perfect. I'm sure it's good but I just wanted something I could do something about.
Fell pregnant again, same gut wrenching scans where nothing could be seen. They eventually diagnosed a miscarriage so I had an MVA so we could test the tissue. Was sent away after that and a couple of weeks later I fell very poorly at home, sent to A&E where they found internal bleeding and a ruptured tube. HCG had risen hugely since the MVA and it was actually an ectopic.

I had already decided to go to Dr S as I needed a second opinion and one which wasn't just the basic nhs tests I'd had. I have high NK cells and very high activity.
Because of my one tube and long cycles we are doing super ovulation but only 6 cycles and we are on cycle 5. Pretty sure my next step will be IVF.

I just find myself to be incredibly angry, mainly at the nhs, and I have some bitterness that I don't like. The nhs did an internal investigation after it and concluded they wouldn't do anything about it. At the time I didn't want to re-live it and hoped I'd be pregnant soon. But I'm not, and I'm re-living it every day! So I'm going to make a complaint about it. I think my anger needs to go somewhere, and if it isn't there it'll ruin me.

Ahhh, what a sad situation for us all to be in xx

@VenusStarr how are you today? xx

Also @TheHopefulEgg, that is a really long message. Grab a coffee and strap yourself in. And sorry again if you've already read it further down x

Hey @myrainbowjourney thanks for asking. I'm not too good today, had lots of tears, it's all a bit overwhelming today. I feel a bit broken.
How are you getting on?

Hi @TheHopefulEgg I was under Tommy's and asked for the TEG blood test but mine don't do it. After some pestering, they agreed to redo the lupus anticoagulant 6 weeks after my 4th loss. But we'd decided to see Dr Shehata at that point and he ended up testing me at 4 weeks past anyway and it was fine.
I've had one round of ivf (nhs funded for the fresh transfer) as we couldn't conceive after the immune diagnosis / my 4th loss. My fresh cycle ended in a chemical pregnancy (I suspect low progesterone), so I did the Endometrio tests and added lubion (they've already put me on clexane for implantation). Nothing showed up in my tests, my era was receptive, so we did a FET in October and I got pregnant. But the baby stopped growing at 6+2 which is about the same time as my 4th baby, despite all the immune meds. I'm hoping cytogenetic results will be back in the next few weeks and we can speak to Dr Shehata about what went wrong this time. I have one frozen embryo but we think we're going to try a few medicated cycles first. Although, ivf and recurrent losses have killed our intimacy 💔 I have low amh and did mild ivf. I think I need to prepare myself for more ivf 😢 (I'm 38) x

@VenusStarr oh lovely, sorry to hear that. It does build up sometimes doesn't it? Especially when you are just waiting for that call, you can keep distracting yourself but it's never far from your mind. Just consumes your every thought and every day. Ugh.

And thank you for sharing your story again. How long were you trying after your 4th loss before you decided to try IVF?
It's so difficult with the intimacy, I think it's natural that things become a bit more cumbersome when in this situation.

I'm fine thank you. Did my trigger last night, but still feeling fairly downbeat. I just don't think we have a shot this month which is just really crap. But as I said, I'll try and hold on to the small chance and bit of hope, otherwise I'll just be miserable xx

@myrainbowjourney it sounds like you've been through so much in such a short space of time. And during the pandemic too. My heart goes out to you

I'm with you on the costs. We've spent so much on testing and treatment over the years, probably the equivalent of what we're about to spend, but I'm trying to see it all as moving me closer to a positive outcome. (Last week it was a slightly different story when I was working the costs out and couldn't sleep!)

I remember being told by the founder of a London clinic that I was “just a baby” at 32. We’d had three losses by that point and I didn't find it reassuring at all. If you've experienced any kind of fertility hurdle it doesn't feel like age is on your side. It's hard to feel like anything is on your side.

But onwards we go. This seems like a lovely, supportive group, so I’ll hang around and hopefully see some positive news from you x

@VenusStarr thanks for sharing your story, though I'm so sorry to read about your experiences and your most recent loss. I hope you can get some answers.

How did you find the Endometrio? I'm having that in the cycle between egg collection and FET and our consultant also wants to do a hysteroscopy. Only discovered today that's it’s not while I'm down for egg collection so that's three trips. Hopefully just a day or two for those two procedures though. I'm struggling to get my head around how consuming it is already x

@TheHopefulEgg definitely hang around. I joined a thread on here when I first miscarried and it was such a huge support to me. I often feel so alone on this journey so being able to talk freely is amazing.

Can't wait to follow your journey to your rainbow 🥰

It's always so lovely hearing good news on here, relights my hope! xxx

I'm driving myself insane! I hate having to test early. I'm 10dpo now if you stand under a light and move the FRER around you can see a line but I'm fairly sure it's my kind playing tricks on me 😂 I've never had a "proper" line this early before (but also never had a successful pregnancy!)...

Should I carry on with the medication and test again in two days? Or just stop now?

Also thanks everyone so explaining with the super ovulation cycle is like, I was asking because last month I didn't ovulate and then this month I've ovulated about 6 days earlier than I usually would. The medications seem to have made my body go haywire!

*my mind playing...

@SunDance21 I had this exact same thing with the first 2 cycles. I had a line but it was so faint. I was advised by the clinic to keep taking the medicine and test the following day. A couple of times I held off for two days just to check and then stopped once it was clear it wasn't anything - think possibly the trigger shot for me, one I think could have been a chemical but I don't really know.

Anyway, I really hope yours is a line! And I would say you are fine to keep taking the meds and test tomorrow again. You should hopefully see some progression.

Did you not ovulate on super ov? I have been temping this time and had a big spike on day 11 (day of my scan) and then since the trigger it hasn't really gone up again. I think it was @VenusStarr who said the letrozole makes your temps higher so it's probably a pointless exercise, but I would like to know if I've ovulated!

Good luck for this cycle! Let us know how you get on tomorrow xxx

@myrainbowjourney I haven't tried super ovulation but wanted to know more about it so I could ask them. It was so depressing when the first month we tried on the protocol I didn't even ovulate :\

I definitely think it's line eyes tbh. I only have one FRER left, so I'll carry on for two more days and test again on 12DPO, thank you for the advice ❤️

Also, regarding temping, progesterone also makes your temperature rise so if you're on that, the day after you start taking it your temp will rise. 😊

@SunDance21 yes I am on it, I just hoped to see a natural rise to show I ovulated. I think I probably shouldn't use temping etc when on all this stuff as it definitely skews things.

Sorry I was confused over your super ovulation. Really hoping you won't need it. Sounds like it could be positive if you've had a line at 10DPO!

No problem, I asked them a few times and they said there's no harm carrying on xx

@SunDance21 how did you get on?

@VenusStarr how are you doing?

Hope everyone is doing well 💗 xx

Hello, I'm just posting this in case there is anyone lurking or anyone who is searching later on... a follow up from my post below. I just did another test and it's now definitely positive. Thank you @myrainbowjourney for the advice to carry on the meds. On 10DPO the line was essentially invisible.

I know how supportive everyone is on here, but please don't wish me luck or anything because I honestly just feel that for me this is like a tick box exercise and I've got through one hoop. I've seen a heartbeat on the screen and still that wasn't enough. I'm only posting in here because I know what I'm like 😂 when I had the faintest of faint lines I was Googling like there was no tomorrow so I just wanted to share incase someone else is in my situation

I feel very fortunate to see the two lines though, I know how lucky I am for that considering I didn't even ovulate last month.

What an absolute rollercoaster this is. I hate that I don't even feel excited. And then I feel like I'm a brat for not being excited as I know I'm lucky to even see the two lines...

@SunDance21 spooky - our messages must have crossed!

thank you for the update, really pleased to hear it. I'm terrible for googling so it's definitely good to know the conclusion.

Don't feel bad for not being overly excited, I think it's totally normal considering.

Please keep us updated with all the tickboxes to follow. Please also take all the good positive messages from this that I won't actually put in writing 🥰 xx

@myrainbowjourney thank you, I really do xx

@SunDance21 ❤️

@myrainbowjourney sorry I've not been around much. I'm struggling with the waiting. It's 10 weeks and we got our previous cytogenetic results in this week, but I've chased and had no reply. I just feel like time is passing and my hope is diminishing. I just keep thinking that we won't get any results back and we'll have to stick to the same plan and if I do ever get pregnant again, I'll just miscarry again. I've been tracking my cycle and although I'm ovulating, my post-ov temps are not very high, so worried that means something bad. Sorry for being negative.
How's things with you? Did you carry on temping? When is your test day? Xx

@VenusStarr don't apologise for being negative. It's hard to find any glimmer of positivity on this journey, and you're going through a tough time.
You will definitely get results and a new plan from Dr S. Are you going to wait to try until you've seen him again? I'm no expert on temping but I do think they can be a bit misleading. The rise doesn't have to be that significant, as long as the trend is there. And even so I'm sure that progesterone or something will help sort that out if you need it.
Please try and hold onto some hope. I'll keep it for you ❤️

I'm fine thank you. I am trying not to think too much about it. I'm almost certain this won't be the lucky cycle so I'm just cracking on in prep for the next one. I temped for another couple of days and got no rise and realised it was just adding stress, so I've stopped. Test day I think is Monday or Tuesday. I tend to go a day over because I kept getting faint lines on test day which faded away. I can't deal with that every month, though I think I should probably be aware if I was having chemicals. Just think 10dpo seems early for a definite answer xx

@VenusStarr don't apologies for being negative at all. It's a shit experience and time.

The NHS weren't very forthcoming with my results either a few months ago. Give them a call to chase.

I think there are always things they can change to help. My temperatures have been all over the place from all the medication, and obviously I'm no expert, but is it possible you think they're low because your body is adjusting to not having the additional progesterone etc?

@myrainbowjourney good luck for your test! ❤️ I agree about 10dpo being early. My degree from University of Google informs me that on average implantation happens on day 9 so day 10 is often too early for a positive even on an FRER.