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 :)

Can I ask how you manage to get pred into your protocols? Mine still won’t give it me even though she said have the level 1 blood tests and she would give me a thinner and a steroid as a precaution. Well I paid £400 for those Monday. Phone call Tuesday saying all okay so she is sticking to the same basically protocol that hasn’t worked twice! I’ve pushed back and I’ve also got a dr called Dimitri who works at Armetis fertility to send some research over regarding taking the letrozole to reduce estrogen further and taking it up to day 10 of the FET with the estrogen. I’m worried I’m gonna rub people up the wrong way because she isn’t very understanding but I’m fed up now and I’m not going through 2 more months of down Reg hell and not changing anything. I’m also dreading being in down Reg in the holiday heat and the mood swings :( one of those holidays booked where “oo I might be pregnant by the time we go” if the last transfers worked :( but no I’m gonna be feeling horrendous On a down Reg.

I’ve just ordered serrapephase from Switzerland. Has anyone heard of that? It’s meant to reduce inflammation.

I just feel like I’ve wasted time with my lap and could have done another FET with my active down Reg.

good morning ladies,

I’m just after some insight really:
so our 2nd FET failed last cycle. The 9 embryos were tested and 4 of them came back normal. So we have two left- I think the grading is 4cb and 4bc
we’ve just had our follow up consultation with Dr Abramov at Evewell. And they have suggested another egg collection.
im 33 and healthy- except andenomysis, MTHR mutations and found low lactobacillus (though I’m hoping the probiotics has fixed that). We did the ERA EMMA AND ALICE and nothing came back to worry about except the low Lact.

i guess I’m keen to follow the drs suggestions but I’m also wondering are they just trying to get more money out of us?
I’m having a break for a couple of cycles and hoping to get a HYcosy and a more thorough pelvic scan because I get a funny pain around the anus when I’m ovulating.

Has anyone been in a similar situation? Did it work out best doing another EC? Or should we be using the last two beforehand?

appreciate your suggestions and knowledge xx

@Loz2467 my clinic were willing to adjust their protocol to what Dr Gorgy wanted but I think only because I was such a complex patient and nothing they had done had worked. Dr Gorgy will prescribe add ons for clinics that won't do it, my friend had this. I also know of someone that got a prescription from nova fertility, they paid for a consult for £150 and their doctor to prescribed it.

@Sar1010 so the first question is how many children do you want? if you're set on one child then there isn't any point in banking, as the embryos you have may work and if not you wouldn't be significantly older at your next collection. I ideally would like more than one child, so when I got down to 3 embryos left I banked, this actually involves doing 3 x back to back collections. I started IVF when I was 34 so not far off your age, it's taken 9 embryos (2 untested and 7 euploid) for me to have a pregnancy and to date I have no live children, but hopefully I will soon!) I'm currently close to 38, my clinic told me they won't do any IVF on me until at least a year post birth and until I've stopped breast feeding. So this will delay me until I'm over 40 and that's if everything goes well. There is no way that I'll make embryos anywhere near as well as I did at 34 so for me banking was a good idea.

Hope you’re all doing ok. I’m going for my first scan after having two baseline scans! This time I’ve been having lots of symptoms from meriofert. I’m now on 300iu every other day and feel bloated, more tired at times, have had headaches and been waking up sweating. Don’t usually sweat unless near period as oestrogen priming keeps things controlled so thinking the meriofert fsh injections are affecting me.

@CailinInUK How’s it going?

@ChickenT2b Hope things are improving.

@Gardenlady543 How is your thyroid medication going? I have been worried that I have had the remains of my bv infection. I’m on two vaginal probiotics a day with canesbalance once a day or a vagibiom. This is helping. In fact, vagibiom works well. Do you think it would be ok to use canesflor and Flora femme (eg one in morning and one in evening) as I get closer to transfer? I wish I could use two vaginal probiotics after transfer.

@2021ivfagain that's good about the symptoms, is your scan today? Good luck :) yes I think it's fine I use flora femme alongside an acid product.

I sent off bloods again this week, which was only after 3 doses of the reduced dose
TSH is still <0.005
T4 has gone 31.1 --> 26.3 (12-22)
T3 has gone 6.83 --> 6.1 (3.1-6.8)
So things are at least going in the right direction and I'll repeat again on Monday after I would have had 10 doses. I don't have the thyroglobulin autoantibodies or peroxidase autoantibodies, this is a good thing as I think this rules out autoimmune thyroiditis (I had positive thyroglobulin autoantibodies when this happened in the past). I am still waiting on the result of the TSH stimulating antibodies, this is a test for Graves' disease (autoimmune overactive thyroid). I then decided to take my blood today for the hcg, as hcg can be very high in gestational transient thyrotoxicosis, so I just want to know what it is although I'm worried the lab will just say over a certain amount which would be unhelpful. I'm now counting down the days of IM PIO, 6 more doses to go! I'll also start weaning off steroids on Wednesday.

@Gardenlady543 Yes. My scan is today. Worried that I won’t have many follicles at all now I’m 42. When did you start using Flora femme with the acid product? I’m scared to stop my probiotics for even a day but I feel if I use two a day up until day before transfer I should be helping things. Did the medical article you saw say the participants in the study took a vaginal probiotic daily including transfer day?

I am pleased the thyroid levels are going in the right direction for you. It’s good you know what your results mean as well.

@Enfys23 How are you getting on? The norethesterone always made me feel tired but when I took dhea and hrt in luteal phase I had more energy. I was lucky that norethisterone did not affect mood. In fact provera had a massive impact and will never take that again. Hope you’re doing ok.

@Gardenlady543 Had my scan and was really worried. The stenographer first said lining was 9mm then said 7.1mm. I have 9 follicles in total: 4 on right and 5 on left so I’m happy with that at my age. The stenographer was quite rude as I find scans difficult anyway and she said: “Can I just get on?” I’m on cd9 today but didn’t start injections until cd5 and only having them every other day.

I have deliberately stopped vitamin e as wanted lining to be thin enough. I might start vitamin e again. Do you know why vitamin e is recommended for transfers?

@Enfys23 hehe, yes I am, at least when I have things on my mind for sure. Thanks for talking me through your Pred protocol, I guess form what you and @Gardenlady543 have said it's pretty standard to start with 25mg at ovulation. I should have specified, when I say I'm worried it may mess up my usually very regular cycle and I read of people for who it did exactly that, I meant future cycles, especially if this one fails and I have to repeat this over and over again for a few months. If I get pregnant this first time and don't lose it of course I'd be nothing but delighted from having taken it. Surely all that cortisol cannot be good for egg quality or fertility in general to be honest.
I'm feeling deceivingly hopeful and optimistic as I always do at the start of a new cycle as I always did ever since trying to conceive the first time, but deep down I know that even if I do get pregnant, I'm pretty much guaranteed to miscarry again.
Where are you at now with your egg collection?

@Gardenlady543 , thank you for you advice, pleased to hear your thyroid issue seems to be improving and may be less of a concern than initially feared.

@Loz2467 I'm sorry to hear your consultants are not helpful as you need them to be and causing you stress. Did you have your NKC tested or you feel steroids would be a good thing to try given they seem to help some other people?
I was first told by the NHS recurrent miscarriage consultant I saw after 4 losses, that his recommended treatment plan for me was 150mg Aspirin, 5000iu Enoxaparin, Cyclogest and 25mg Prednisone daily from a positive pregnancy test. Although he couldn't offer NKC test on the NHS or even an NHS prescription for the Pred as its not recognized as an official medication for pregnancy, he told me he'd write me a private prescription for it on a just in case basis. I never went back to him as we went straight to IVF with PGTA instead. Since that failed from a Euploid embryo and I cannot afford more egg collections and PGTA, I decided to see a reproductive immunologist, DR Shehata at CRP clinic in Epsom. They ran a bunch of blood tests, including re-doing the NKC bloods and that found elevated NKC volume and elevated toxicity so his action plan is Intralipids and 25mg Pred aswell as Cyclogest. CRGH also prescribed intralipids, but I still had a chemical from that FET so I am highly skeptical, but I'm giving it a go alongside a natural cycle with superovulation, because I have little other choice.
Sorry, I am not familiar with Serrapephase.

@2021ivfagain sorry your sonographer at CRGH was rude, I had a couple of them, being very short and dismissive and not willing to engage with my questions, not really what you need. I hope at the next scan you get someone nicer and your lining measurement is clearer, good news on the follicular count

@2021ivfagain hi, lovely of you to enquire. I’m doing ok thanks. I’m so glad to hear your cycle is progressing but sorry about the sonographer being unsympathetic and your other worries with family. One step at a time. Did the sonographer tell you the size of your follies? Nine is a great number. Will you transfer several / all that go to blast?

I had my cycle review a couple of weeks ago and we made plans for a stim cycle in July.
We also discussed doing a modified natural cycle for any possible future FET. It’s not something the clinic normally does but will accommodate.
I got my PGT-M / PGT-A results a few days later and unfortunately all three blasts were aneuploid. It’s the expected result at my age. But I had hopes I could make another euploid as I made one two months prior (unfortunately this one was PGT-M high risk). Now obviously concerned that I won’t make any more in the next three cycles and it just brings the devastation of my late loss to focus, how close I was to being a mum again yet now so far away, if ever. Anyway, I‘m in the middle of down reg now with Day 1 expected around Tues. Glad to be starting stims again soon.

@Enfys23 are you stimming soon too? Sorry your AMH result wasn’t improved with the DHEA. This is not uncommon. Hopefully the quality will have improved.

@Gardenlady543 good thyroid hormones in right direction and hope it’s not worrying you too much now. Great milestone ahead with finishing those injections and the steroids!

@clhiu all the best with your cycle. There are lots of stories of natural success after IVF but totally appreciate your worry of miscarriages. You are brave and strong. Forget about the advice given about running! Ridiculous if you ask me. W

@Sar1010 for what it’s worth I wish I did more stim cycles before my successful frozen transfer. I had had enough after 8 cycles (understandably) but in hindsight I wish I did more when younger when the going was good and I was making euploids regularly.

@Loz2467 dont worry about rubbing people
up the wrong way. This is too important to have regrets. Not heard of that drug from Switzerland.

Hope everyone else is doing ok.

@2021ivfagain @clhiu my sonographer is the opposite. We have general impromptu conversations after she sticks the dildo in and before she starts scanning! We’ve known each other for a long time!

@Gardenlady543 thank you for the reassurance.. I think we will go ahead with another EC. And hopefully we get a better batch (fingers and toes and legs and arms crossed)

So I guess it’s time to start getting our bodies ready for another egg collection in September. Any hot tips? Any little hidden secrets to nice plump healthy eggs?
were both taking folate 1000, Vit d and impryl
also very minimal alcohol just at special occasions, try and eat lots of veg, and having fertility massages (acupuncture isn’t quite right for me)

sending love to you all, keep the faith xx

@CailinInUK yeah I think I’m just going to bite the £ bullet and go ahead. Hopefully get some better ones this time… thanks
it sounds really really difficult for you at the minute- my heart just breaks for us all but especially at times like this… yeah I know there’s not much to say but I’m here for you xxx

@CailinInUK Sorry to hear about your results. You do have more cycle to go and your reserve is better than mine now.

I’m not doing an egg collection. I have 7 day 3 embryos frozen from November 2021 when I was 40 and egg quality was better. My consultant refused to let me do a fresh transfer then even though there was a break for Christmas. I would have had a better chance than now as egg reserve is bad due to fsh being high and lack of oestrogen causing bv infections. I can’t make more embryos but will be freezing 7 day 3 embryos and growing to blastocyst. They were frozen at day 3 as I it was set up for the batching which was the worst thing I did. I believe in my case the constant egg collections and antibiotics messed up my microbiome which was really good before all this. This is why it’s more difficult for me as these are
it for me. They will be untested and it is predicted I will get 2 or 3 blastocysts. I am only allowed to transfer 2.

I’m doing a natural modified frozen transfer with stims like @Gardenlady543 did. They measure the follicles to see which is the lead and also the lining. When one is 18mm and higher, they organise the trigger. I’m not stimming every day, but every other day as it’s milder. My lining at present is 7.1mm and largest follicle is 11.

The stenographers are different every time; there are lots that are nice, but one or two are not. I suppose she was a lot younger than me and might not have experienced what I have. I was so worried that I had no follicles due to having such high fsh.

I know how you feel about wanting another child. I have my son from IVF due to male factor infertility. Now I only have one good cycle to rely on but also I worry so much about bv recurring.

Good luck with your stimming for next egg collection.

@Loz2467 My friend took Serrapephase. She took it to get rid of internal scarring she had from miscarriages. It is an anti-inflammatory enzyme which breaks down fibrin. It can get rid of swelling caused by pain and arthritis as well. I don’t think it’s something you should be on for too long. I was on digestive enzymes to help break down bv biofilm faster.

@2021ivfagain thank you. Yes still got three more cycles so a chance, but real possibility/probability we’ll end up with nothing :(
And reading the stories here about failed PGT-A cycles is scary and upsetting. I had one live birth, one biochemical and one late loss with my euploids so expecting implantation if we get that far but could easily not. I have four or five euploids in the freezer that are sadly at risk of the genetic disease we’re trying to avoid.

Yes, I was conscious you were doing a natural modified FET and thawing frozen Day 3’s. Your nine follicles gives good indication of oestrogen levels and lining potential, that was my link :)
when’s your next scan? I’d be pushing for all blasts to be transferred, perhaps up to three, but realise how strict they can be.
Like you, I reckon my low lactobacillus may have been caused by the numerous stim treatment cycles and procedures. I wanted to do Emma/Alice before last transfer but consultant dissuaded me. I don’t have the energy to be angry about it but I am.

@CailinInUK thank you so much for your kind words, we're very much in the same boat although a different approach, all we can do is to keep going. Before each attempt I told myself this would be the last, 'if this doesn't work that's it', but the reality is that I cannot. I'm under no illusion that I can actually make a normal embryo one one hand, but completely disillusioned with PGTA, since the last failure and the amount of money we piled into being able to transfer just a since euploid so here I am now, turning by body into a Russian Roulette once again.
I'm really sorry to hear about your latest PGTA results and how it's causing your hopes to dwindle. 3 more EC rounds sounds like good odds and if you have the means to keep going, then keep going I'd say. If I may, I'm growing increasingly skeptical about the EMMA and micro-biome piece, I'm sure it's important to have good levels, but it seems every single person I heard from who had that test done has come up with lactobacillus way way below the optimal level to the point I'm wondering if anyone out there really has one >90%. I guess a lot of people who come to do this test have been through IVF or other issues and procedures to the area which would have implied taking anti-biotics, which in turn might have caused those issues, but feels a lot like a vicious cycle.
I know, I guarantee it won't be me, but I hear all the time about people going through failed IVF just to have children later naturally, including two 48 years old my friend knows well!

@Sar1010 have you tried long down regulation with any of your transfers? I did a 2 month one but my FET still failed. This was pretty basic 2 months of prostap and then estrogen and then cyclogest and lubion. They started my estrogen 2 weeks after my last prostap so I guess you could call it a 6 week down reg. many Drs will also give letrozole with the estrogen and it’s mean to lower the flare up and inflammation but mine won’t do it but she’s finally agreed to Inhixia and pred. Unsure if it will make a different for me but I’m down regulating again July and August so it will be September by the time I’m transferring. Feels so long away and these transfers are taking ages because of the down reg.

Ive been on a course for 2 days but going to read the thread when I’m home. @Gardenlady543 glad you’ve got your thyroid under control.

Hi @Gardenlady543

Hope all is well with you!

I had my follow up today with the consultant and she advised i do thrombophilia blood test, NK cells blood test, autoimmune blood tests

And then they send me costing for :

• hemoglobin electropheresis
• profile 9 CF immune tests

Do you know what those include? as i couldnt find it anywhere

Considering of doing it with the clinic just for ease of processing and quickly done, although i think they are overpriced compare to other clinics..

That's good news @2021ivfagain so are you having your day 3 embryos thawed and then grown to day 5 for a transfer this cycle then? As far as I'm aware vitamin E helps with thin lining. I didn't take it this time, I have taken it before though.

@CailinInUK I'm so sorry, I was really hoping for a good outcome from your testing :(

@Sar1010 I increase up coenzyme a, I take the active form I think I take 200mg three times a day for as long as possible for a collection, they say it's good to make changes 3 months in advance. During stims I make smoothies with spirulina, wheatgrass, flaxseed, acai powder and super berries.

@Mybabydream I dont know about hemoglobin electropheresis or profile 9 CF immune tests, I haven't had them. You will only save a small amount by shopping around so if it's easier to do it with your clinic then that sounds like a good option.

@Mybabydream do you know why they want you to have the haemoglobin electrophoresis? Do you or your partner have changes on your full blood count or family history of a haemoglobinopathy like sickle cell or thalassaemia? My DH and I were able to get this done easily with GP before we started to TTC. If there’s good grounds to do it no reason your GP wouldn’t be able to do this one.

Glad things progressing @2021ivfagain sorry about the sonographer, that’s not helpful.

@CailinInUK you’re such a tough cookie. Good luck with the next egg collections. I really hope one finally tests ok.

@clhiu much to my surprise I had >90% lactobacilli and so a normal EMMA and ALICE. Might have been wrong though, I had terribly thin lining in my biopsy cycle too and I’m really prone to thrush, so who knows if was accurate!

@Gardenlady543 that’s good things heading in right direction.

Thanks for checking in ladies - It’s my last day of norethisterone today, then just waiting for day 1 and baseline scan. If all well start stims on Thursday.

@Gardenlady543 @enfys it seems haemoglobin electrophoresis was mistakely quoted
in the end this is what is requested:

-NK Cells Follow up Assay and TH1 and TH” Cytokine Ratio

Lupus Anticoagulant
Anti-Cardiolipin antibodies
Anti-Beta 2 GP-1 Antibodies
Anti-Phosphatidylserine Abs (PHTS)
Coagulation Profile
Antithrombin 111
Activate Protein C Resistance
Protein C
Protein S
Factor II prothrombin
MTHTR
PAI-1 Mutation
ANA
Thyroid anti-bodies, TPO, Thyroid Receptor Ab and Thyroid globulin ab

only blood tests , no NK biopsies not sure why..

@Mybabydream if you’re not in a mad rush for them then might be worth showing list to GP to see what they’d agree to. Mine did the basic autoimmune, thyroid and clotting stuff for me. Certain tests they couldn’t request as a GP in my locality but it definitely helps reduce the cost burden. I got my thyroid antibodies via medichecks as it worked out cheaper than the clinic. But sometimes ease and less stress beats trying to save some pounds here and there.

@CailinInUK sorry to hear about your latest embryo testing results. I’m hopeful your next round will bring you one. I can empathise with the late loss. My neighbour had her baby girl a week before my due date and it’s a constant reminder of where we would / should have been. :( she would have been 2 in July. It seems so unfair!

@Enfys23 a girl on the care fertility page had DHEA and although she only got the same amount of blasts as her first round she got a better quality and the first one of these stuck. I think she’s maybe over 7 weeks now.

@2021ivfagain is this your first time trying the natural modified FET? I’m keen to try it if my next FET doesn’t work because not taking the estrogen and flaring the adenomyosis I’ve heard helps.

I kinda wish I’d not done my lap now because I’m going to have to wait until sept now for a transfer because I need a 2 month down Reg again. It’s shown my adeno is more severe than we thought but the clinic try and say my brown spotting is low prog so it’s hormonal. Which it is but it’s due to the adeno. Not thyroid etc.

Can anyone help so if I’m starting another prostap 7th July I’ve ordered oral probiotics. Shall I order the canesflor too? Is there anything else I can be doing in the meantime to prep?

@Gardenlady543 Have had more symptoms today for BV. Think that the 7 day course was not strong enough. My consultant said I can take metronidazole or clindamycin but only for 5 days so starting tomorrow. He’s leaving it up to me to decide. Issue is metronidazole does not work for me anymore unless I take it longer. Clindamycin did work but was not getting the right amount each time from the tube! I have a 5 day course of metronidazole or a 5 day course of clindamycin. My gynaecologist, who’s not IVF trained, said he suspects I’m immune to metronidazole now. I’m getting abnormal discharge and worried metronidazole will not get rid of bv. Problem is I wouldn’t be taking probiotics for 10 days; there would be one day when I stop. However, I’d be taking 2 a day up until transfer without canesbalance.

My consultant was really helpful with probiotics. Wish I’d had all this advice months ago! I can even use Vagibiom after transfer but have to stop all vaginal probiotics on transfer day. I’m not allowed to use canesbalance close to transfer or afterwards but allowed vagibiom in spite of lactic acid as canesbalance has a lot more ingredients.

@Mybabydream the thrombophilia and autoantibody screen looks similar to mine. I had more immune bloods: KIT, LAD, not sure if they are just doing NK cells or seeing what happens when they add intralipids to them, also I had HLA DQA1.

@Loz2467 it's always good to have vaginal probiotics around I'll use them a couple of times a week.

@2021ivfagain can you take both metronidazole and clindamycin? And then follow up with daily vaginal probiotics?