ERA EMMA ALICE testing thread 8

[Gardenlady543]

@2021ivfagain @kerrym87 @Janefx40 @seven201 @thislittlebird @Spin101 @Enfys23
@CailinInUK @BewilderedBee @Loz2467 @Lori2022 @VenusStarr @clhiu @Faithhopelove83 @APSR @ChickenT2b @Mina209 @IVF22 @Lizzybeth1988 @AM08 @Fluffykins33 @Sar1010

Continued in from thread 7 :)

@ChickenT2b I didn't start looking into immunology until after 4 transfers, my treatment has basically been a transfer followed by 6 months of tests and procedures, then another transfer and repeat! I'm the book is your body baby friendly the person that wrote it said a lot of patients have success in 3 months of trying on a protocol so it's definitely something to consider. For PAIP this looks at thromboses genes I think and if you can have clexane added in then there doesn't seem much point in testing if you want to save money. Dr Gorgy is pretty good at letting people pick what tests they do and putting a plan in place on the test results he has. Thyroid tests are always worth doing, is it cheaper here: www.medichecks.com/products/thyroid-function-antibodies-blood-test it often goes on sale I think especially on thyroid Thursdays. I think most RI like to do the nk biopsy. Good idea with the hysteroscopy.

My results were
Full hla dqa1 match
Normal nk biopsies
Peripheral nk cells 15%

So in USA where LIT is banned they use IvIg as my understanding is that it's giving antibodies and LIT is creating them. Intralipids are 1/10 of the cost and some people feel they are pretty good, I think they are just a bag of fat. When I spoke to Dr Gorgy he said that IvIg would give me the best shot and since it's been 4 years with only a chemical to show for it I could try them. I can't afford them regularly though. The plan will be for him to decide if intalipids will be ok instead moving forward at regular intervals based on my blood test results.

@ChickenT2b That’s ok. I can send you the link for the garlic tablets if you like. Design for Health are the brand name. I take two a day. You can’t take these when stimming or in blood thinners.

@Gardenlady543 Thanks. I’m really finding things difficult. I asked my gynaecologist if I could take vaginal oestrogen in addition to oral hrt. He said yes but need permission from IVF clinic. It’s so frustrating. I’m not doing well again just because the vaginal probiotics are not dissolving as well. April I took vaginal dhea for several weeks without consultant’s permission and ended up doing better with probiotics. They did however affect ph, but I don’t know what to do. I’m waiting on vagibiom. I’m really worried about after transfer. I can take yes vm but it contains sodium chloride so worries it will affect vaginal probiotics. I did use yes vaginal moisturiser with vaginal probiotics and they did not dissolve at all. I’ve begged my consultant for a prescription for vaginal oestrogen and he just said to increase my oral hrt in oestrogen priming phase which I’m already doing! It’s like I’m one step ahead of him. Vagifem is my best bet. How much would I need to take a week? If I took vaginal estriol instead would it lessen the effect of oral hrt? Sorry for the questions. My consultant is not listening to me. I’m going to have to beg for additional estradiol support (oral) for transfer.

@2021ivfagain I had to take vaginal estradiol in a medicated FET, I was told to put the normal tablets in vaginally, brand is elleste solo. The only thing is vaginal estradiol seems to raise blood estradiol by a lot. This was a cycle where I was initially on 2mg x3 orally and when my lining wasn't responding they told me to take another 3 on top vaginally and I ended up with an estradiol level of 8000. Is there an Ivf clinic that would be more willing to work with you? It seems like your current clinic don't really take your concerns on board.

@Gardenlady543 Thanks. I like the monitoring of CRGH and embryology team are excellent. It’s my consultant who’s been awkward. I have thought about changing my consultant but don’t think I’m allowed.

I can get a low dose of vagifem which is just enough to sort out vaginal dryness. Apparently, the low dosage of 10mcg is safest option. Were you taking it every day? I thought about a few times a week. Would it cancel out my oral hrt? I’m taking 2mg x3 times a day. It works for every symptom but vaginal dryness. Apparently, that’s common.

I’d like to be able to either take vagibiom after transfer sometimes or canesbalance and probiotics, but I’m worried it won’t be safe. I tried the Yes vaginal moisturiser which helps a bit but it stops working after a day and I need to use canesbalance again as probiotics don’t dissolve without canesbalance. What would you do after transfer if you were me? I’m going to use the probiotics the same as you (stop day before and day of transfer), but what should I do if they don’t dissolve?

@Gardenlady543 that is such wonderful news. I can only imagine how you’re feeling and bet you just want to sleep and wake up when you know it’s all worked out. Crossing everything for you both. Do you have any more plans for scans?

@2021ivfagain low dose Vagifem shouldn’t have any significant systemic absorption so I think you’ll be fine with that and hopefully it if helps locally will help the dissolving of the vaginal probiotics issue for you. I’m glad the care issue is getting some sort of resolution for now.

@ChickenT2b wow that’s a lot of info to take on board for you. We did karyotyping recently as felt it would be gutting to have more failed transfers and only then discover an issue. I hope you can pick what is relevant and affordable for you and to then get a plan together.

@CailinInUK thank you 🙏🏼 I don’t think my clinic are overly bothered about monitoring it but I’ve managed to ask my GP to check my testosterone and free androgen index just to save a bit of money vs medichecks. I’m hoping if they are ok then not too problematic that I’ve not checked DHEA-S. It’ll be 8 weeks on it this week. My results had come up from low to mid normal range at 4 weeks on 75mg. Thankfully after ringing with my day 1 yesterday, and getting a much prompter plan and response this time, I know I will be on it roughly 13 weeks in total (as consultant wanted me to take it until trigger day) so at least not massively over 12 weeks.
Good luck with starting the next downreg and your review ❤️

@2021ivfagain I think in a transfer cycle it's best to just stick to probiotics. But then I don't have estradiol issues so you'd probably need to ask your specialist about that. You don't want to mess around adding hormones in when it needs to be tightly controlled.

Thanks @Enfys23 I've booked a scan for Sunday which seems very close to this scan but I basically need one but following Sunday and don't want to wait that long inbetween. Plus at ultrasound direct I get the high quality images and video sent to me.

Morning all, me again.

Trying to get to a rough plan of action.

Does everyone think this would be a good plan:

1. sort out my microbiome with antibiotics/anti fungal/probiotics
2. surgery to remove severe endometriosis, endometriomas and hydrosalpinx
3. try naturally for 3 months (maybe with immune meds?)
4. move to ICSI adding in LIT & neupogen
5. if first transfer unsuccessful or any further m/c then do more testing (NK biopsy, karyotyping, sperm dna fragmentation)

I think my main question now is do we try first without the immune meds or is that silly considering we have paid for tests which warrant both neupogen and LIT? Like is it an absolute need to have this treatment given we are a full dqa match, have low LAD and missing two KIR receptors. Would we be throwing money or embryos away by not taking the meds.
I have asked Dr Gorgy for a treatment plan based on trying naturally and ICSI as it may be that post surgery conception is easier.

@Gardenlady543 Just had a call from my GP today. I did a vaginal swab last week. Unfortunately, they picked up BV. I knew I had it due to the symptoms. So I have to take vaginal clindamycin but worried about interaction with zumenon and norethisterone. I’ve been taking 2 canesbalance a day to relieve my elevated ph. In fact, I have to take canesbalance during my period else I get burning.

I don’t know what to do. I have to do my transfer next week. I want to do the best for my embryos that I have left but I don’t feel that is possible with very little oestrogen. Oestrogen is needed to make probiotics work as you know.

I have vaginal clindamycin for 7 days. Is there anything I should do after I stop taking it? I use canesbalance gel. Should I be using pessaries instead? Do you think I could take vagibiom after transfer, not immediately but staggered? My vaginal ph is so high naturally. It’s canesbalance which brings it down but when I use vagibiom on its own it does not alter ph as much. Did you say you know someone who used vagibiom after transfer and up until scan?

I’m sorry for all the questions but I’m in shock. I suppose it’s good it’s been picked up now. The problem is I have had absolutely zero cervical mucus this month. I had some last month and that is how I was able to fight it.

@Gardenlady543 Sorry transfer early July.

@ChickenT2b can you afford the LIT, if you can I would get on with it and see if it helps. I wouldn't delay doing it if it might help. As for the other immune meds it's up to you, the surgery may help you conceive, so I guess you could try for a few months and if that doesn't help add in the immune meds try for a bit longer and then if that doesn't work go for IVF. I was very keen to get onto IVF as it has the best chance of working, so I would probably avoid the trying naturally and just get on with IVF if it were me but I can see the reasoning for the approach you're thinking of taking.

@2021ivfagain so are you going to take the clindamycin, I think all you can do is use probiotics while on it and after. Yes I know someone that took vagibiom all the way up to the first scan and everything is going fine with her.

@Gardenlady543 Did you say I can still take canesbalance and vaginal probiotics with vaginal clindamycin? I was going to take vaginal clindamycin at night and vaginal probiotics with canesbalance in the morning? Would that be ok? The issue is my vaginal ph gets ridiculously high without canesbalance as I’m on norethisterone and I have low oestrogen.

@2021ivfagain I don't know if there is much benefit maintaining the ph while on the antibiotics but it is useful when recolonizing. Anything you do add in, do at a different time, eg clindamycin at night, probiotic in the morning. I don't know about reactivity between acid product and the antibiotic. Probiotic will be fine.

so I tested and it’s a BFN. Now I’m 8dpt5dt. I kinda knew I was out from day 5… I wonder what that’s about (intuition or perhaps a chemical reaction, I felt a total difference over night). I’ve got another test for tomorrow morn and if it’s negative I’ll stop the meds.

after ERA, Emma and Alice results and everything coming back normal except very low Lactobacillus, then doing the probiotics I was so sure that we’d get lucky this time. But obviously not meant to be. I’ve tested without husband bcos I just need to get it out of the way now I’m wondering how to tell him.

any advice on next steps… is it just a numbers game now and we just keep going? We have two more euploid Frosties and 2 inconclusive. We can afford another round of EC but is it really going to work on 2nd one when this one isn’t looking too promising.

there’s certainly an implantation struggle with having 2 previous CP over the last 3 years.

looking for some enthusiasm and some positive stories…

I'm sorry @Sar1010 have you had imaging like a hsg, saline scan or hysteroscopy? Have you looked for silent endo? Have you had any other tests that point to any issue? I remember for my 3rd transfer having had a hsg, recurrent implantation failure blood tests for a thrombophilia screen and autoimmune screen and the era Emma Alice and I put so much pressure on myself especially because the era test had some statistic saying for those with a displaced window with implantation failure the next transfer had a 70% chance of working or something and I was using a confirmed euploid rather than untested, I felt like it must be a sure thing. Of course it didn't work and it was such a horrible come down. I think the things that ended up helping me was doing a modified natural FET which helped with my lining, having my fibroids removed and doing the immune protocol.

Hi @Gardenlady543
I actually asked for HSG right at the beginning of my ivf journey. And they said it doesn’t look like it’s necessary, however they did spot Andenomyosis in one of my scans leading up to this transfer so perhaps I can push for this now. I think I’m just going to get everything I haven’t tested tested now.
I had quite severe eczema / atopic dermatitis growing up and although it’s managed now with cream I do wonder if an autoimmune issue is at play. I thought the era Ema and Alice looked at immune system though? Maybe I misunderstood.
When I first came to the clinic they did blood tests and found that I have a protein that makes my blood a little thicker and is likely to clot. So for both FET I was out on Clexane the day of and also Aspirin.

maybe I should retest my Lactobacillus to see if the 10 consecutive days of canesflor built it up to 90%. It was at 6%
do you know any could home tests or should I do that through the clinic- can I just use swab and I won’t need to go through the whole protocol again of the biopsy?

weirdly accepting this fail a little easier than the first..

s x

@Sar1010 I think it's crazy that Ivf clinics don't do a hsg or saline scan before ivf, ultrasound can miss structural abnormalities. Adenomyosis probably won't be picked up on it, it's looking at the patency on the tubes and for filling errors in the uterus. If you might have adenomyosis then I think people would go on suppression like with endo before a FET. You could try and find what they tested for on the thrombophilia screen, but it's only really clexane they use to treat those issues and you're already on that. An autoimmune screen is a good idea, mine tested for:
• Thyroid peroxidase
• ANA
• Mitochondrial antibodies
• Smooth muscle antibodies
• Gastric parietal
• LKM
• Anticardiolipin IgG and IgM
• Beta 2 glycoprof igG and IgM
I'm annoyed that they didn't also test for thyroglobulin autoantibodies as I had them and that led to me developing an underactive thyroid in the middle of IVF.

Test options for the microbiome are:
• A vaginal swab, a few people here have done that.
• fertilysis menstrual fluid test
• Emma Alice
I don't know if I'd bother though if you didn't have lactobacillus with no dysbiotic bacteria, I would just take more vaginal probiotics and do them daily in a FET.

ERA EMMA ALICE doesn't look at the immune system at all EMMA ALICE looks for bacteria and ERA looks at the genes to say if they are turned on or off and then based on the profile tells people if they are receptive or not, but it's a controversial test that a lot of people don't believe in.

The immune system issues you'd need to see a reproductive immunologist for this, I'm under Dr Gorgy. I had these tests:

Endometrial biopsies

• NK number
• NK activity

Reproductive immunology bloods

• NK cell profile
• NK cytotoxic assay
• Th1/Th2 assay
• Leukocyte antibody detection
• HLA DQA1 typing
• KIR

Thanks for this, I’ve read Gorgy name a few times in this thread, so will look into that.
I believe the we tested for NK cells whilst doing the biopsy for EEA and came back normal.
But I’ll look into doing reproductive immunological blood test !

I think going forward I’m going to ask for
HSG
prostap for andenomyosis (suppression meds)
and a long protocol

and I’ll double check what bloods and tests have already been done (I’ve lost count and actually would like all the results in a file together to keep track of them)

Im trying to stay positive and productive this time- last time I got so down I had to cancel everything for a few weeks.

s x

@Sar1010 sometimes even with everything right it doesn't work. I did everything I did in this protocol in December and had a chemical. I was told, not every euploid embryo is meant to be a child.

Hi @Gardenlady543

would appreciate your advice on days post fet
Is bed rest recommeded or is it ok to Go out for walk the 2 n day? Thanks

@Mybabydream I don't think there is any evidence on rest or activity post transfer, but this time I had the week off work and laid on my sofa the whole week watching tv and doing Lego. I think if you're going to try and stay rested while implantation is happening then you're looking at around 4 days. I still did normal things like making myself meals and looking after my pets. I didn't do any lifting though.

Thanks @Gardenlady543
just had my fet and when u think stress is over.. i had a call to say my embryo thaw went well but then 10mins before the procedure the embryologist come in to say that embryo was developing at 55% which is the threshold for transfer.. anyone had that before?
i was told though that since its euploid it should be fine, however chances of attaching might be lower but existing
desperately looking to hear if anyone had that and resulted in succesful pregnamcies?

@Mybabydream my embryologist has never said anything about percentages they have just said embryos have thawed fine, the only time they said anything different is when a hatching embryo hasn't restarted hatching again after a thaw but then they followed it up with, but it will. What do you think they mean by developing at 55%? It's good if they specifically said it's reassuring that it's euploid.

I have heard of people having a embryo that doesn't thaw well and so another is thawed and they are both transferred. I assume if you have more than one embryo and they decided not to do that, then they must think this one has a chance. It must have been really stressful, but there is absolutely nothing you can do now. I was sure that my lining didn't look good on transfer day this time compared to my last transfer, I was sure there wasn't enough and I kept asking are you sure it's ok to the doctor and I have done better this time than I have ever done before.

Thanks @Gardenlady543 for the uplift, ur amazing!
i think its about how is hatching and developing post thaw . It seems they dont usually have to mention a percentage when its above 55% , nut because its the threshold they had to tell
have one embryo left and i asked them if we should consider thawing it instead but the dr came back and insisted we continue with this one ! Fingers crossed , did not meed more stress :(

@Mybabydream well if they don't have to mention it if it's 56% then I can't see the relevance of mentioning it when it's 55%. It sounds like the embryologist and doctor felt the embryo has a chance and it was not appropriate to discard and thaw another, so I think you have to be reassured by that.

@Gardenlady543 I was told today that I can have oral estradiol in the luteal phase for my transfer. I’m so pleased but it’s taken a lot to persuade my consultant to do this. I also had my results through and tsh seems a bit low. TSH is 0.81. Never been this low before. I’m not on thyroid medication but I take a lot of probiotics, hrt, dhea and vitamin D. Did you have to get your free t3 and t4 done? My clinic want tsh, free t3 and t4. I had to go back to get my blood tested again as it is been difficult getting free t3 done.

@Mybabydream Good luck. If the doctor insisted that embryo is transferred, you have a chance. That is a good sign. I know IVF is so difficult.

I received a lot of probiotics today and had to pay taxes on them for the first time ever! I’ve got Good Clean Love which has a good range of lactobacillus strains including crispatus. @Gardenlady543 I’m sure that Flora femme balances out ph. Did you take Flora Femme every day after transfer? I’m wondering what is best to do. I’ve got Flora femme, vagibiom and Good Clean Love.

I also got vagifem on prescription today due to vaginal dryness. I wonder if I can take it during stimming if it’s a very low dose? Obviously, not after transfer. I wish I could be like I used to be. I’m starting vaginal clindamycin on Sunday, but using vaginal probiotics with canesbalance twice a day at present and probiotics are not fully dissolving. I’m 42 tomorrow and wish I could be 40 again when my hormones were much better.

@CailinInUK How are you getting on?