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

@StillTrying10000 I'm sorry about what's happening, I hope you're ok ❤️

@VenusStarr have you got the Ivf appointment, when do you think your transfer will be?

@Janefx40 and @seven201 are you both on the medication now, how are you finding it?

The good news is that my thyroid test after being on the meds for 2 weeks is stable and in range so hopefully the numbers will stay like this. I had been getting a fast heart rate but it seems to be in the low 80's at the moment. I'm seeing the thyroid expert on Monday evening, I'm also speaking to the lab about my immune tests later in the week so they can advise a treatment plan. I imagine the treatment will be steroids, intralipids and LIT. Did someone on here mention LIT? If so how much is it? I know Gorgy does it and it cost £850 a time a few years ago. I haven't told my specialist about the immune results, I had sent in my thyroid results though, but didn't hear anything from her. She already thought I was complicated so I dread to see what she thinks now.

Good to hear from you @Gardenlady543 that's really good news about your tsh. I've not seen Gorgy, but I think he's the only person who does LIT. I think he does ivig too but Dr S doesn't. If you're on Facebook, there's a UK Reproductive Immunology private group and there's a few on there under him.
I hope your thyroid specialist appointment goes well.

I'm seeing our ivf doctor on Friday, they've already said it's OK to do a FET in May, so just need to sort my protocol. I'm happy to do the same as before to be honest. Period would be due around 11 May, so transfer in the last week maybe. Just realised as I was thinking about the date, I've agreed to go to a work event on 21 May as my team has been nominated for an award, might have to cancel that if its pre-transfer.

Definitely think the metformin is affecting my stomach, going to try 2 tablets from Monday. Hope I can tolerate the full dose x

I'm not sure of the IVIg @VenusStarr it's so expensive :(

Oh dear sorry about the metformin, it often causes gut side effects :(

Could you plan to go ahead with the work event and cancel if needed? I'm such a hermit, I don't go to anything!

@Gardenlady543 there is a girl on Instagram called gimmeaBFP who has had LIT and IVIG. She had high Gardenella in Emma/Alice and thin lining, high NKC. Could be worth sending her a message. I find people on Instagram super helpful. I set up a account just for IVF stuff. She is pregnant now still getting IVIG and LIT during the pregnancy.

Woken to full flow period and testing negative finally. A long wait to see Dr S on Thursday now.
Thinking of you all today xxx

Hello girls.

I've not been very active on here recently.

Just wanted to share my recent news just in case it may help someone.

I'm just about to turn 41, IVF for 3 years, for male factor, my tubes and AMH were fine. We've had 2 OE IVF lost pregnancies, the second at 19 weeks due to fatal fetal abnormality . Since then 2 failed PGS donor embryos since. I'm now down the immune route with confirmed high NKA and cytokines and positive ANA. Normal ERA and ALICE EMMA showed low lactobacilli. Taking hydroxychloroquine now, and seeing if helps the immune picture.

But this week, at my own insistence I arranged a private laparoscopy. Low and behold I have grade 3 endometriosis, thankfully excised. I was so surprised as ive had no symptoms. The surgeon was not. He thinks half of infertility is caused by endometriosis and half of those women have no endometriosis symptoms and therefore are never offered laparoscopy.

In my case this could offer a reason for my very immune sounding recurrent implantation failure in the past 2 years. Endometriosis is now recognised as an inflammatory disease, that affects egg quality, and also implantation. The surgeon also told me that endometriosis is now more underdiagnosed than years ago, as laparoscopy is now longer part of routine infertility work up.

So just a word of caution to you all. If you have good embryos and recurring implantation failure, it may be worth getting a laparoscopy.

Hope you are doing ok.

@stilltrying10000 I am so sorry to hear this news. You have been on a rollercoaster. Try keep yourself mentally ok after these successive losses. But I under stand your panic and need to keep moving. It's 2 years now since I was pregnant when I lost my little baby at 19 weeks.

Keep strong girls.

Oh and thinking of us all today, Mother's Day. A bitter sweet day that can be a painful day for so many people for so many reasons.

@Gardenlady543

Dr gorgy does LIT. He said I could get it for moderately low LAD levels( both were about 50%) and high cytokines and NKa. So a different picture to yours with the HLA mismatch, but no NK activity. It costs about 950 pounds per session I think. In your case it will need to be donor due to complete match? They seem to do donor LIT very routinely. 2 sessions recommended i think about 4 weeks apart.

I am not getting this done yet myself, I've had a second opinion saying this is not needed for my level of LAD ( which are not terrible according to Dr Beers book). I'm going with HCQ, intralipids, steroids and maybe an IVIG.

It is all such a grey area. Which is so difficult.

@Gardenlady543

Sorry I meant HLA *complete match.
Last post, out to enjoy the sun!

For all my lovely friends on this thread xxx

Thanks @Dochas12111 I did wonder if the microbiome issue could be related in some way so its interesting that this person had it too. I hope you're ok.

@StillTrying10000 I'm so sorry to hear this update.

Hi @Littledream oh wow it's a good thing you arranged the laparoscopy, that's really useful information about Dr Gorgy thanks :) do you know how the donor LIT works, do they have samples of donors? Does it cost more? It would be a bit worrying having the blood of strangers injected into me.

Thanks @Janefx40 thinking of you all today.

We really are the immune thread now aren't we!

@Gardenlady543

No bother. The donor was more or less the same price, possibly 50 dearer only. Yes i think they have a pool, and they have to be virally screened regularly etc. But I dont know the detail on it.

Yes we truly are the immune bunch now too

Dr S is on this new podcast which I found fascinating. I thought I knew a lot by now but I still learnt loads more. (It will be released on apple podcast in the coming days if you don't have Spotify, although it's free to listen there if you sign up)
The Fertiltiy Method:
open.spotify.com/episode/7eQPTjV8nd4HnVWSZOPmyC?si=10NaOKarQQumZX34MmMW8A

@Littledream great to hear you might have some answers. Had you had a hysteroscopy before which had missed it?
Are there any treatment you can now try?

@StillTrying10000

Thanks so much for this podcast. Will listen today on my walk!

Re the endometriosis. I've had 2 hysterocopies before, entirely normal. Endometriosis is in the pelvic cavity which is not examined in hysteroscopy. So your hysterocopy can be entirely normal and you can have endometriosis. It also doesn't show on scans except in extreme cases. That is why I think there is such under diagnosis, especially for women with no painful periods, heavy periods, pain during sex type symptoms.

So beware!

No, no specific treatment because I am trying to conceive with a transfer maybe in a fresh months. I might go on the pill for a month or 2 in advance of that to quieten any further activity down. Alternatively you can go on GnRH agonists( put you into menopause) to keep the endo/inflammation quiet. But I dont want that, my moods are hard enough to manage!

I'm hoping and praying the removal of the endo combined with the HCQ and naltrexone will bring down my cytokines. I'll test them again in about 3 weeks( that will be 8 weeks on HCQ).

I hope you are ok after recent events. I feel for you. The dread of the week post transfer for me now is real. Almost I'm avoiding it, yet still wanting it of course.

Keep strong ladies

It sounds like you've got a good plan @Littledream the USA seem to be ahead of the UK with protocols for transfers for those with endometriosis. They do the receptiva test quite often out there which seems to act as a good screening test, I think there is only one place you can get that in the UK.

@StillTrying10000 thanks for the recommendation will have to have a listen, how are you feeling?

I saw the thyroid expert yesterday, he said he would have started me on 50mcg of levothyroxine (that's 3 doctors that have said that now), but the 100mcg I'm on seems to be working well, I had the normal result after a week and it's still stable at 2 weeks, he said some people respond quickly. He wants a repeat at the 4 week mark and has asked me to email him the results so he will advise about adjustment of the medication dose if required. He said if I do get pregnant then to get a tsh as soon as I find out as he's found IVF pregnancies cause the TSH to go very high. I am feeling tired still, I used to sleep for 9-11 hours but now my body only lets me sleep for 8.

How's everyone else doing?

@Gardenlady543 that's good, I hope it stays nice and stable but not good you are still so tired. Do you think it could be something else or your body still just recovering?
@Littledream that's fascinating, I didn't realise the laparoscopy could be the only way to diagnose that. Thanks for sharing. It sounds like a good plan you have in place now.

Hello all. Haven't commented in a while but have been checking in on all of you from time to time. Now the conversation is onto immunes I don't have much to add as never got into all of that but glad to see you are all persevering and continuing to be curious and persistent in your own care, I do think that is crucial.

@Littledream did you have excision surgery for the endo? I had/have endo, had quite extensive excision performed in 2018, they said it was stage 3. One of my ovaries has never functioned properly since that surgery, the one that had a large endometrioma removed from it. However I had successful ivf in 2019, baby born 2020 and then was (eventually) successful again with another round in 2021 and now pg. I had lots of failed transfers but I think likely these were mostly aneuploid and it just took some time to get to the good ones. Anyway just wanted to let you know that success with endo is definitely possible. In balance I'm glad I had the surgery but I don't feel the surgeon counselled me properly about fertility impact of removing the endometrioma from that ovary. Good luck! X

@whatcangowrong

Thanks for much for this insight. I'm heartened by the fact that you had 2 successes post endo resection. I'll try to hold onto some hope but feel battle weary now!

Yes the surgeon said he resected it all, and I should be OK for 1 to 2 years( not long in ivf world).

No my ovaries weren't affected. But tbh we are done with OE at this point. Too many poor embryos from OE. I now think that this may have been endo related.
My dream at this point is just one healthy pregnancy.

I hope your pregancy continues well and thanks for checking in!

So I went for a scan this morning just to see how things are, I'm right at the end of a natural cycle, my lining is just 5.2mm. This is what it was before I started IVF back in September 2020, before I had a thyroid problem. I thought we'd overcome my thin lining issue as I was up to 8.4mm in cycles mid last year. Hypothyroidism causes a thicker lining (uterine hyperplasia) and heavy periods, so it looks as if it was that causing it and now I'm back to a normal thyroid status it's hello thin lining again. I also previously had 1 stable mucosal fibroid well it's now grown into the endometrium and brought a friend with it, so 2 x submucosal fibroids.

My situation just keeps getting shitter and shitter. I have the meeting with the lab doctor today to see what the immune plan will be, but since my plan was unmedicated with immune treatment and I now have a thin lining and fibroids that will effect implantation... who knows :(

Ffs @Gardenlady543 I'm so sorry ❤️ I have multiple fibroids but all intramural and subserosal. I think the submucosal are in the uterus and possibly need treating / removing :(
I hope your meeting goes well. I'm sorry you've had more shit piled on. X

I need to catch up properly, but our ivf consultation was tomorrow bit they've cancelled and need to rearrange.

Hope everyone is OK ❤️❤️

Thankyou @VenusStarr I appreciate the "ffs" it just seems like I'm constantly being confronted with new information. I am hoping that maybe as my lining is so thin they might be mucosal although she said she can see them pushing into my lining. I don't like the idea of the extra time and effort that will need to go into getting them removed.

I'm frustrated and pissed off for you. It's so shit what you've dealt with so far and to keep getting more difficult news and diagnoses is so hard.

Was it your ivf clinic that scanned you? In my initial fertility investigations they did a hysteroscopy to see if they could remove any fibroids but when they got in they only found a polyp, so got rid of that but confirmed everything else was clear. So a hysteroscopy might be an idea as they can treat there and then. The myomectomy surgery is very different and recovery time would be much longer @Gardenlady543

Managed to book our consultation and scheduled our nurse consult as well. Think I've settled down with the side effects of the metformin. Debating adding in the 3rd tablet as I feel OK.

@StillTrying10000 I am so sorry about this cycle ❤️ did you see Dr S today? I hope you're doing as well as you can be.

@Janefx40 @seven201 how are you both getting on?

Really feel like we're all going through it right now 😢

Hi everyone

@Gardenlady543 ugh!!! I can't believe you now have to face this as well. Do you know what you need to do next?

@VenusStarr hope you get the consultation done soon.

I'm ok. Hungover...went out for cocktails with work colleagues. Lovely to do something normal but feeling it now.

We're all in the doldrums a bit at the moment aren't we? Nothing moving forwards much.

Love to everyone xxx

Hi @Gardenlady543

I have a similar issue with the lining. This cycle it was almost 9 before ovulation and a day after dropped at 5.6. Hormone levels were okish, but a bit low. My consultant is sure it has to be an issue with the pituitary gland that is sending mix signals in the body. We have been trying to do a natural FET for the past 5 month and almost every cycle was cancelled. So at this point a medicated cycle is my only option.
I have never had issues with thyroid but I've been doing a lot of reading about pituitary gland and it controls a lot of hormones (thyroid, sexual hormones etc). I saw an endocrinologist a few years ago and she suspected some issues with the gland. I even did an Xray which showed nothing. So the pituitary issues were burried then and there. But now, after all these years I am almost convinced there is something wrong with my brain.
P.S. I have done the immunology testing and they showed nothing wrong. Partner is fine. My hormones are ok, no signs of perimenopause ( I am 39 this month). In spite of everything being ok, i had 2 failed transfers and more than 3 years of TTCing without succes. The only thing that has chanced and I can't pinpoint when exactly is my menstrual flow, but as my consultant says, it's caused by the thin lining.
I do understand you frustration. It seems that every step of the way it's actually taking us farther from fulfilling our dreams.

On a school night! @Janefx40 😜 I had an absolutely horrific hangover after dh's party, was sick the following day (tmi! sorry). Glad you had a nice evening out. I've enjoyed not having to think too much about what I'm eating or drinking. We've got a concert on Saturday so might have a drink or two then that's it, I'll focus on my diet and no more alcohol for hopefully a very long time.

I'm in with the doctor on Monday, will be late for work, but needs must xx