ERA/EMMA/ALICE Testing Thread 3

[Janefx40]

Hello all,

This is a continuation of the ERA/EMMA/ALICE Testing thread.

New posters are welcome. On here you will find a group of women who are either doing these tests or have done them already and are further on the journey

This is the friendliest and most supportive group so feel free to join and post

Xxx

@seven201 I am so sorry ❤️ this is shit. I'd definitely recommend testing before you do a transfer. Have you had your thyroid, vit D levels checked? Ask your GP for them. Your ivf clinic can do lupus anticoagulant and antiphospholipid syndrome tests I would think. I'm under Dr Shehata like @StillTrying10000 he is very expensive but I'd done all the other nhs tests plus nk cells biopsy and still miscarried. Although I've now done his treatment and still miscarried but I'm staying with him.
There is Dr Gorgy too, I know a couple seeing him and his treatment is very experimental and expensive. We're not going to go down that route.

@StillTrying10000 I didnt have a full bladder - I remember doing my morning cyclogest when I got there. I hope it goes well.

Hope you're feeling OK @Janefx40

@VenusStarr thanks yes I'm ok. Have the week off so am relaxed in a way although my mind and heart are still going a million miles an hour. It's good to have time to myself though. How are things with you?

Oh no @seven201 not again prof Quenby will see people with 2 or more 1st trimester miscarriage I think. I think you might need a GP referral.

@seven201 so sorry to hear this. I agree with the others. I would investigate before doing an IVF transfer. Have you done tests for NKC before? Or thrombophelia bloods?

@Janefx40 glad you’re resting up! Good to have the time off work.

@Gardenlady543 how are you? You haven’t been on as much. Hope you’re ok! X

@Dochas1211 I'm ok, I've finally gotten around to booking my review appointment which will be a week on Friday. Prof Brosens mentioned a third NK biopsy which will also act as a scratch so I think I'll do that in my next cycle and then hopefully do an unmedicated transfer the cycle after. Hopefully my specialist will be ok with that.

I can't remember if I said but the Karyotypes for me and my husband came back and they are normal.

@Gardenlady543 I hope your appointment goes well. You always have such a clear plan of action, it makes me feel empowered.
I've heard about scratches but it's never been suggested to me. Would you say EMMA&ALICE would also work as a scratch? It's interested as I was actually worried the tests would cause injury which would send my NK cells into overdrive so have a negative effect but it seams a scratch really works for some people.

@Gardenlady543 that’s good about the Karyotyping! One more potential issue avoided.

Best of luck in your review. I hope that he is happy with unmedicated cycle. I think it’s a good idea to try it next especially with how you react to estrogen. When are you hoping to do your next FET?

Thanks everyone. Another lighter line when I got back from work.

I'm going to have a proper look through everyone's suggestions later this week. So sorry for not replying to individual suggestions. I don't really understand most of it, so need to have Google at the ready! I'm the kind of person who just likes being told what to do for stuff like this, so it's a bit overwhelming at the mo.

@StillTrying10000 I was told the era etc biopsy acts a bit like a scatch.

@Gardenlady543 that's good that you got the clear on that test.

@Janefx40 I'm glad you have this week off. Enjoy some box sets and chill time.

I hope you're ok @seven201 sending hugs, it's definitely worth having a read through and proper think about who to see.

@StillTrying10000 yep as Seven says the ERA EMMA ALICE acts Ike a scratch too, both are endometrial biopsies. My NK cells were normal and then the cycle after low and the specialist said it's because of the biopsy the month before.

@Dochas1211 I think it will probably be March for the transfer. I will likely speak with my specialist about potentially doing a single euploid transfer followed by a double. I just need to get moving now. Since if these last 3 don't work that's all 9 of the blasts I got gone and I want to get on with the next collection asap.

❤️ @seven201 lots of love

That's good news @Gardenlady543 I got in touch with the implantation clinic today as professor B said I might need a third biopsy too. But I've asked if he'll prescribe the sitagliptin anyway. I'm cd8 today and tracking ovulation, so could just book the biopsy in a couple of weeks. Hopefully he'll come back say I don't need another one.

Chased our baby's cytogenetic results and heard back from Tommy's that it's still a bit early (8 weeks today). So I'll try again at 10 weeks.

@Gardenlady543 sounds like you have a good plan in place. A natural then a double transfer is something you haven’t done before so fingers crossed one of those approaches will work. Are you going to go on some immunes too for transfer?

@Dochas1211 I don't think so, I thought about maybe the HLA matching, but if I did that I'd likely end up doing all the tests and I'm just not sure what the point is, I'm pretty much done at this point. Either one of these three will work, if they don't then it's not likely to ever work.

Hello! So lovely to have everyone chatting on here again!

@Gardenlady543 good to hear from you. Hope the review goes well. As @StillTrying10000 said you always have such a clear plan - you're an inspiration. Glad your karotypes are normal too.

@VenusStarr hope Dr B gets back to you soon. I always thought he was a she for some reason!

@seven201 I'm sorry about the lighter line...yes take some time to have a read and make a plan when you feel ready. Annoyingly, it's only possible to switch off and let someone tell you what to do once you have the right specialists in place. Despite all the chaos, that was one of the things I found more relaxing about ARGC. I didn't feel I needed to bother asking questions as they were all over it.

@Dochas1211 how are you? I know it's not the best place to chat about it but I hope all is progressing well and that you are coping ok with the anxiety of early pregnancy post infertility and loss. Although it's what we all dream of, it is still not easy when you're so aware of how precious it all is. Hope you're ok x

@Gardenlady543 and @seven201 thanks! that's given me a new sense of optimism that I hadn't had before. Maybe these tests might make a difference for my next FET.

[quote Dochas1211]@seven201 so sorry to hear this. I agree with the others. I would investigate before doing an IVF transfer. Have you done tests for NKC before? Or thrombophelia bloods?

@Janefx40 glad you’re resting up! Good to have the time off work.

@Gardenlady543 how are you? You haven’t been on as much. Hope you’re ok! X[/quote]
I've not had any NKC testing yet. I've had a mini thrombophelia - all I was told was it was clear, but for IVF they gave me clexane as it couldn't do any harm. I'd guess the next step is NKC - my clinic can only offer the blood test version (at a sister clinic).

@Janefx40 thanks for asking. All ok here so far. My DH is great at helping manage my anxiety.

@Gardenlady543 you could ask for a pre emptive dose of steroids without having to do the testing. At my 2nd clinic I hadn’t done any testing and the consultant said as I was concerned and a complex case he would put me on 10mg of steroids but no more. I left that clinic without doing a transfer as they wouldn’t acknowledge my progesterone issue.

I then did NKC Chicago bloods at my U.K. and they came back raised. The suggested treatment was Intralipids but my consultant was skeptical on immunes so he said his preference would be steroids - so he put me on 10mg for transfer.

No idea if it was the contributing factor to it working but given a consultant was willing to give me 10mg with no testing and this is what I was prescribed after testing it could be worth asking for it as part of the kitchen sink approach?

@seven201 i only did the blood test version - the Chicago bloods I think?

I'm sorry @seven201 😢

@Dochas1211thank you, that's useful. I'd guess that's what I could do through my clinic. Perhaps i'll do that while I'm waiting to see a different specialist.

@greendress789 thank you. How are you doing?

@seven201 the other key drugs to reduce mc risk if you have NK cells are low dose aspirin and hydroxychloroquine sulfate. Have you tried them? That's likely what Dr S would prescribe to begin with. Both cheap drugs with fewer side effects than steroids so may also be worth requesting them? I was prescribed them on NHS treatment and managed to keep a pregnancy to 16 weeks. x

@Dochas1211 I asked about putting me on steroids without a test indicating I need them and my specialist said no. I have a feeling that she will be against an unmedicated FET as well, but I've had enough. I'm worried my lining might not thicken up enough for an unmedicated FET, I guess all I can do is try.

@Gardenlady543 the thing about unmedicated is that you've lost nothing except time. You don't take meds (other than immunes) and they check your lining in scans. If your lining isn't thick enough, you'd have to cancel but if you're willing to take that chance then why not?

Hi everyone @seven201 sorry to see your update.
I saw the miscarriage guy yesterday and my head is spinning as he already identified one potential factor with me which is a heterozygous MTHFR variation in two genes which together affects my ability to process folate. He told me to buy 2mg Methylfolate from Amazon rather than normal folic acid. This result was in a mini blood screen that Trew did after my second loss but was not flagged by him. (I only got the print out recently as he'd previously told me my bloods were fine). I think he saw that I only had a single copy of this gene variation but I suppose he didn't know that one copy of on two genes could be an issue. It seems treatable so I wish I had taken the high dose methyl folate before. Maybe aspirin too.
We will both have further blood tests, including blood work for my DP lupus etc and a hysteroscopy (thankfully under a general) and uterine bioposy.

He said he didn't think it was an age issue as I had been creating euploid embryos. I was feeling so guilty for starting a family late but perhaps this issue was written in my dna long ago.
I liked him which I think is a good starting point.
He said that recurrent loss is usually a combination of factors which makes sense as I keep finding so many things linked to recurrent loss online, so it could be lots of these variations combined.

Hi @AdrianeMole glad you had a thorough appointment but yes how frustrating not to be the info on the folate sooner. Ugh this is a frustrating and heart breaking process. Glad it's not age as that is one thing that can't be changed! Sounds like a lot to digest but but pleased that you liked him. That is a good start. When will you have the next lot of tests?

I'm feeling nothing so panicking here. I know I've told a hundred other women that you can't tell. But I've had implantation cramping 2-3 days post transfer with both my pregnancies and not feeling it! Oh the madness has really started and I've got another 10 days!

Thanks @Janefx40
The dreaded TWW! I didn't have cramping until day 5 or so and maybe sometimes it doesn't happen or you were doing something else and might miss it. Keep distracted I think is the best strategy.
I've obviously spent ages on Google now with the mthfr thing. I'm sure its not the only factor and I can't turn back the clock.