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

@Gardenlady543 yes I think it's estrogen. Shows low fertility, then high (estrogen/flashing smiley), then peak (lh surge/solid smiley face). Probably looks for the same stuff as the full monitor. Wish I'd invested in one of those years ago! It's just frustrating to not get the proper lining measurement this month.

I went to the gp and asked for a print out of my blood tests to see if the other results were back. She clicked the wrong button so now I have 70 something pages worth of my medical history! And the blood tests aren't even back yet

I'm glad you went for your scan @seven201 hopefully your lining will continue to thicken as your follicle gets bigger. Are you ttc this cycle? I can't remember when your appointment is with Dr S? Hope your other bloods come through soon.

How are you @Janefx40? Been thinking of you.

How's things with you @Gardenlady543? I've got an appointment with Professor Brosens tonight. I'm going to ask him for sitagliptin, he'll probably say no and make me have another biopsy. I hope he doesn't, I'm finding medical procedures really triggering - got my smear soon and I'm already panicking about it.

Hope you're OK @StillTrying10000 are you having your transfer soon? Hope you're getting on OK x

@VenusStarr Have you had any more luck chasing down the report this week?
I'm feeling stressed about it for you. I will never forget chasing mine up every day getting fobbed off, only to be told they'd had it sat there for two bloody weeks.

This cycle has been going to plan so I'm booked in for my transfer on Monday. I feel it's such a waste of an precious embryo as nothing is really different this time I can't see how it will suddenly start all working. It's sad as all my previous cycles I had a flutter of excitement but it's totally gone now. Dreading the TWW already. x

I'm sorry you're feeling this way @StillTrying10000 ❤️ it's so hard to keep going. I know what you mean about not having any changes, for some reason changing something helps my mindset. I think Jane posted a while ago that using the same protocol has been shown to work. I guess with everything else you've been through its harder to put your faith in that.
I'm pleased things have gone well and you're on track ❤️

Thank you for thinking of me. I'm disappointed that the hospital still haven't called. I chased yesterday but they didn't call me back (it doesn't ring, just straight to voicemail). I'm trying to keep busy but it's constantly on my mind. I'm between meetings now, so might just quickly try now. I work for the nhs and I know I would always follow things up, especially when you know it's a sensitive situation. It's hard when you don't get treated the way you would to others 😢

Hi everyone.

@StillTrying10000 it must be so hard to be positive. Yes it's true that I was told that there was a large study where they did the exact same transfer procedure three times and 95% of women got pregnant across those three cycles. We just have a tendency to think we need to do something different. I'm the same tho. That's why I'm seeing Mr Shehata.

@VenusStarr so distressing that you've still not heard back. I really hope they call soon. As you said it's about treating people with care and respect even if they don't have an answer for you.

@seven201 what were the mid-cycle scans aiming to find out? So annoying about the blood results.

I'm ok, thanks for asking. DP is finally coming out of his depression/insomnia and that just makes everything easier. It's hard because when things go wrong, not only am I distressed and not only can he not comfort me but he's at his most distant and difficult too. I've learned that I just need to wait a few days and he'll come back but it definitely adds to the misery.

We're planning a few small nice things and life is starting to seem easier again. I can't help calculating the "what ifs". If I hadn't miscarried the baby would be 10.5 months. If this cycle had worked tomorrow would be 6 weeks. But it's ok. Am going out tonight with some good friends. It's lovely but I'm tired and I find it hard to socialise because I don't want to tell people about the cycles and yet that's my whole life. I find myself a bit blank and lacking in conversation. But it will be nice too

Xxx

I hope you have a lovely night @Janefx40 I know what you mean about struggling to participate in conversations, but it is nice to be with others ❤️

I had my appointment with Prof Brosens at the implantation clinic. He's agreed to let me try the sitagliptin without another biopsy. So it does mean around 3 months no ttc or transfer but I feel OK with that. Hopefully we get the baby's results soon too and can see Dr Shehata as well. (not going to mention the sitagliptin though) xx

@VenusStarr that's good news about the sitagliptin. I had to Google it! Sounds promising. Do you have to take it for a few months prior to transfer? X

Thank you @Janefx40 it's given me a renewed sense of hope. I definitely feel like I need to try something different. Dh said that he wants us to try this and go straight for a transfer to make the most of the potential benefits. There's no safety data in pregnancy but I can take right up to transfer. So maybe 2 months on it and then we go into a FET cycle. Originally we'd said we were going to try the superovulation with letrozole again. It's strange how it's for stem cell regeneration but the nk cells biopsy I thought only looked at nk cells. It's weird how my nk cells in my blood are a normal amount but very overactive in pregnancy and I have very low nk cells in my uterus but it's making sense around our struggles to ttc on our own. I'm also hoping that the d&c has helped clear everything out, kind of like starting from scratch.

I'm using this time to focus on my health. I've been doing yoga everyday since new year (even roped dh in) and I do a workout every morning. Not made a bit of difference to my weight but I do feel a bit better physically.

How was last night? I hope you had a nice evening with your friends xx

Gosh so many of us are back to the investigation stage. I'm waiting for the second opinion still. I also started reading into immune things, the things I always said I wasn't going to bother with! I have spoken to someone with HLA mismatch between them and their partner and wonder if I'm doomed for it to never work.

I bought the book last night, is your body baby friendly that Dr Beer wrote, so much seemed to have been written for me, with 2.5 years of negative pregnancy tests. In the book he says how people come to him after many years of miscarriages or having never seeing a positive test and 85% get pregnant in either 3 natural cycles or Ivf cycles with his treatment. I don't know though. It's such a contentious area.

Fetilysis do a package of immune tests for €765 inc postage:

• NK cell profile
• NK cell cytotoxic assay
• TH1/TH2 cytokine ratio assay
• Regulatory T cell assay (tregs)
• Leukocyte antibody detection panel (LAD)
• HLA DQa matching

I guess it's worth a shot, if it's all normal then I'm stumped again. If it's abnormal then I'll need to decide whether I want to pursue treatment that can be very expensive.

Hi @Gardenlady543 I've recently got that book too. I have been re-examining my previous failures/losses. I was always a bit skeptical about immunes - I know they work for some women with multiple losses because I've seen it but I thought the blood tests tended to over-diagnose - pretty much everyone who does the tests comes back with raised levels so I was just a bit skeptical.

But now I'm thinking again. Dr Beer's description of the impact of cytokines on miscarriage fits my profile exactly. I did have raised cytokines and I did have a small gestational sac.

Also having got 2 euploids from 4 aged 44, I'm questioning whether aged 41 it's likely that only 1 embryo across my 2 cycles was normal (my DD) or whether my chemical and miscarriage might actually have been related to immunes after all.

Are you going to go ahead with the tests?

@VenusStarr thanks yes I had a good night. It was lovely to be with friends - there were 6 of us so plenty of chat without the need to share anything.

So impressed with your health regime! Go you! X

@Janefx40 yeah I'm going to do the fetilysis tests, which work out cheaper than doing them elsewhere. And then I'll have to see what the treatment would be based on the results, if it's steroids that's one thing but treatment like IV Ig are about £3000 per FET and there's no guarantee it will work.

The book kind of draws you in, talking about the emotional aspects we go through which are spot on and then sprinkling in success stories. If people have either never had a positive or have recurrent miscarriages the book kind of states well this is your missing link. But I don't know, I thought the microbiome was my missing link!

I skipped to the chapter on diet at the end which kind of threw me off, the author of that chapter was basically saying some people can normalize abnormal results with diet, well I already have a text book diet, since I'm vegan, I eat all that stuff already and clearly I'm still never implanting.

Just on the topic of the Beer book - I brought it too thinking it was the answer and still had 2 failed transfers 🤦‍♀️

I had a my immunes tested with Dr Gorgy and went on his treatment plan and still nothing. Had some very expensive LIT therapy which was super painful ☹️

@greendress789 @Gardenlady543 yes I'm definitely far from thinking "this is it!". Because I was at ARGC, immunes have always been part of the conversation so it's not new to me.

We're now down to our very last shot with our very last embryo so I'm just wanting to make sure that I don't have regrets about things not tried. But I also don't want to go too far down this road.

We're down to our last few thousand pounds so I can't afford to do expensive treatments anyway. The problem with IVIG is that you need to do it several times if you get pregnant so that could be a fortune. I did IVIG on our failed cycle in March although as I only got 6 eggs there's a fair chance there were no normals there anyway.

It's a rabbit hole...but it could hold an answer at the end of it I suppose...

@greendress789 I totally get this, I'm reminding myself of a thread on Reddit about immunes, I looked at every post from a couple of years ago where people were talking about their immune issue and treatment plan, then clicked on each user and it didn't seem to have help with their situation. It's very easy to get drawn in, people saying spend all this money and the issue will be fixed. I was looking at LIT, which people seem to get advised to do after an abnormal LAD result, the LAD and HLA seem to be specific to basically a mismatch between partners, I just have this feeling that that's my issue, whether it is then fixable is another question though.

@Janefx40 I didn't want to go down the immune rabbit hole either, soon I would have had basically every single test I could have possibly had! I guess it's mostly a case of, can I tell myself I did everything possible, and I want to feel that I did.

It's a mindfield!! @Janefx40 @Gardenlady543 I got that book a while ago. The immune things do make a lot of sense for me, my missed miscarriages have been exactly the same to the point I know the day things went wrong. I also have positive ana antibodies and rosacea which flares when I'm stressed (now!)
We have decided not to go down the LADS / DQ alpha matching as we can't afford the treatment.

Professor Brosens was interesting last night. He said he wouldn't recommend us testing our embryos, he was very firm that our issue is miscarriages and the more miscarriages you have, the likelihood for a live birth drops each time and pgs testing wouldn't make much of a difference to us as its the environment that breaks down. He also feels like my recent loss was likely a normal baby xx

@VenusStarr it wouldn't surprise me if the results come back normal for your recent pregnancy either. I've only just started the book but it talks about this. I think the specialists that look at immune issues are against the idea that implantation failure and miscarriage is related specifically to chromosomally abnormal embryos.

When I had my embryos tested and 5 out of 6 came back as euploid (I'd had 2 untested transfers at this point), my specialist said she was quite sure that the first 2 were likely euploid as well.

Get all of us with the same book lol!

@VenusStarr yes I'd agree that immunes definitely make sense for you. I know women who've had 7+ miscarriages and had success with immunes so I don't doubt that it works for some people. I just think that the tests also over-diagnose and find people who may not need it. I did do intralipids anyway on this cycle so didn't ignore completely but could try more.

How is the rosacea connected? I have rosacea too

X

@Janefx40 in the book it talks about 100% of people with 5 unsuccessful transfers having abnormal results. I guess that immune tests are mostly done in people who have either recurrent miscarriages or implantation failure. So I guess this group are likely to have issues. I haven't looked into the research I know it's very contentious, it would be interesting to see if people without any infertility issues have abnormal results.

@Gardenlady543 ARGC generally test immune bloods with everyone. I'm on various forums with women from there. Yes it is definitely true that most women go to ARGC because they've already had failures elsewhere but there are also others (like me) who start their journey there. I've only heard of a handful who didn't test as needing immune support.

In our first consultation, we were actually told that most women test positive for immune issues but they don't know how many healthy women would also test positive.

So personally when someone says their tests have shown raised NK activity or raised cytokines I'm not surprised. In my anecdotal experience nearly everyone tests positive - it may well be that nearly all those women need immune support for fertility or it may be that lots of people test positive who can go on to have healthy pregnancies without it.

The other confounding factor is that once you test positive, you inevitably accept treatment of some kind. So it's impossible to know whether those women would have had successful pregnancies anyway.

But just to be clear, I'm not knocking immune treatment so I don't want anyone to think that I'm casting doubt on their treatment plan. I definitely think it can work and I will be doing it myself. I just think sometimes extra women may be diagnosed x

Ah that's interesting about ARGC and I agree with everything you say @Janefx40 I always say people should pursue the evidence based things first, unfortunately there is then a group of people (like most of us here) who have done all that and still need answers. It will be interesting to see if my tests flag up anything.

Well my second opinion report is back. Their opinion was that I could have PCOS phenotype D (lean PCOS) interestingly this is the same potential diagnosis as the person that posted about this service on the forum I saw it on.

The reasoning for this is because my FSH and AMH are slightly off, these numbers are supposed to correlate with one another although obviously they go in opposite directions with FSH gradually increasing and AMH gradually decreasing over time. My pattern is interesting, my FSH is slightly high so it would be expected that my AMH should be slightly low but it isn’t, it’s at the high end of normal for my age. I had wondered about some form of PCOS given that I have a high AFC. I know people with pcos can be very prereceptive and have awful microbiomes, which I definitely have. The report suggests that the next step would be androgen testing, I haven’t had a free androgen test although I have had my testosterone tested in the past which was normal.

They also mentioned that because of the potential underlying PCOS type D I could have a hyperactive immune system, which is obviously where I was moving next anyway.

I think I'll probably send off some day 3 hormone blood tests for the androgens and see if it finds any abnormalities.

Our test results are back. As we thought, a normal healthy baby. It was a girl this time 😢💔

@Janefx40 Dr S kind of pooh-poohed me on my rosacea but I've always seemed to have an inflammatory response to stress. So my skin will become itchy and red on patches. I've had a couple of bad flare ups, one was after my 3rd loss. I know it's not technically an autoimmune condition but I think it's shows I'm probe to inflammation. I do have positive ana antibodies too which can indicate an immune condition.

I definitely think there's room for scepticism about immune treatment. Dh wants us to try again with the sitagliptin treatment and change nothing else, which I agree with. Will be interesting to see what Dr S thinks. We're not going to ask to see him until March.

That's interesting with your second opinion @Gardenlady543 has lean pcos ever been mentioned before? X

Oh @VenusStarr I'm so sorry 💔. Sending you so much extra love tonight.

@VenusStarr Oww my heart goes out to you. A little girl 💕🥺. How are you feeling? Are you managing the grief as best as you can?

@Gardenlady543 interesting to hear that. How do you feel about those results? Will your consultant be able to recommend anything new as a result do you think?

@Janefx40 thank you for your positive vibes. I’m trying to crack myself out of the negativity now. I’m glad your DH is feeling a bit brighter. The milestones are so tough. Both my own and those around me, now celebrating 1st birthdays for their little ones, just cracks through my heart so hard. One day I just hope the dates become more of a bruise rather than a raw punch every time. Stay strong xxx