ERA EMMA ALICE testing thread #6

[Gardenlady543]

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22 @2021ivfagain @OrangeBengal @Enfys23 @Loz2467 @DEIVF @Hopeful199 @ER12 @greendress789 @Douchas12111 @Lori2022 @AdviceForJane @Anonbaby @Molls87 @ChickenT2b @GoldenElephant @IVF22 @StillTrying10000 @warrior101 @whatcangowrong @Yaynayokay

Oh yes it really has happened we are onto thread #6.

All are welcome to join us, we started out as people interested in ERA EMMA ALICE but we seem to have had every test available between us.

So if you want to know about the microbiome, reproductive immunology or you just feel your case is complicated and what like minded people to talk to about it you've come to the right place

This is really helpful, thank you!

Hi all,

Sorry to those who’ve had a rough time lately. Christmas and New Year were tough here too, thinking I should be six months pregnant instead of my late loss in Nov.

@Gardenlady543 Really sorry your precious embryo didn’t stick, you gave it your all. How many embryos have you got left? Sounds like you’ve covered a lot of ground in prep already.

@2021ivfagain lots going on for you at the moment, big hugs, give yourself some time to decide what to do.

@StillTrying10000 huge congrats on your baby girl, esp after so many losses. I hope she makes a full recovery very soon.

I had my follow-up with Juno Bio just before Christmas. As expected they recommended antibiotics (for the vaginal Strep B and prevotella) and then vaginal probiotics immediately after. They recommended Lacto crispatus in particular, which was what I was going for anyway, after research, and gave three suggestions: Physioflor, Vagibiom or Good Clean Love. I struggled to get the first two in UK in stock so ordered the third even though it’s not 100% crispatus. It’s from Spectrum Supplements in UK, for info. My GP prescribed me antibiotics. Yet to start them.

My period finally started on NYE, eight weeks after my loss. Thankfully it seems a normal period, I was paranoid I’d get Asherman’s Syndrome after the surgical management. I can now plan my next stim cycle, which will be Feb as I’m on long protocol. I’ve just turned 44 so odds of a euploid are slim, which is scary. Hopefully I can manage one over a few cycles seeing as I got one age 43. Feeing the pressure. I’m going to test my AMH next week via Medichecks.

Wishing everyone the best for 2023 and hope this year gives us a break.

Congratulations @StillTrying10000 I'm sorry to hear the little has been unwell, I hope she's doing well now and that you're all home?

@grcrobbo list of vaginal probiotics attached. I used to take a lot of probiotics and had the worst microbiome imaginable twice. Without antibiotics clearing it I wasn't going to get an improvement. There is a menstrual fluid microbiome test that costs less than EMMA ALICE and some people do a vaginal swab which gives some indication for if you might need antibiotics and would be even cheaper.

Oh @2021ivfagain I'm sorry that's a lot to be happening all at the same time, I think it will be fine to take noresthisterone for a bit longer to delay things, so hopefully you can have the home situation more stable. Sounds very stressful.

@ChickenT2b I haven't heard of clinics that are good with endometriosis, I feel like a lot of clinics send people off elsewhere for management and maybe all they do is lupron in a transfer cycle. I hope there is a specialized clinic that can help though.

@CailinInUK I've not heard of good clean love I'll have to look that one up. I like vagibiom as it has the acid and prebiotic built in, but the only way to get it is to order from eBay and it comes from USA. Physioflor is good but seems to have a stock issue, hope it's not been discontinued as it's a good one.

I had planned to do 3 euploid transfers in me with everything optimised after my surgery and this was the first one that's ended in a chemical, I have one very good euploid left and one not so good euploid and then I can bank again but would consider a sperm donor because of the hla match or would bank with my husband and perhaps not transfer more in me. As by then if it hasn't worked it would have been 4 years of ttc, 2 untested and 5 euploids and so far I have only had a chemical once and with trying naturally and all the transfers before this I have never implanted at all.

I am having a nightmare with my thyroid, my result came back on New Year's Day that my thyroxine level is even higher and I've been getting pretty bad symptoms (palpitations, fast heart rate, tremor, blurred vision, dizzy). I had thought it was the Progesteone during the cycle or the steroids, but Progesteone is now gone and steroids I've weaned down to 10mg. Interesting my thyroid autoantibodies are now normal, so I think the immune stuff has helped the thyroid. I spoke to 2 GPs today and we have decided to reduce my levothyroxine from 100mcg to 75mcg, since I was diagnosed in March last year the one thing I was happy about was having such stable results with my dosage, but even if it returns to the good baseline again off the steroids, I will be back on them again next month. I just hope things get stable so I can do the FET in February as planned. I have the scan this week and speaking to a doctor about my iron levels tomorrow. I also arranged to discuss my hormone levels with a endocrinologist but that's late next week. Been another busy and stressful day.

@CailinInUK sorry you’ve had a tough time, it really has been a bad Christmas. Thanks for the info on probiotics. I’ve also ordered some of that third one. I ordered some oral ones today, including a crispatus one but last time I ordered it it never arrived so time will tell if it gets here.

@StillTrying10000 congratulations and best wishes to you all.

Tacrolimus is used in eczema cream, I have a similar one that uses Pimecrolimus. I strongly suspect my immune system is playing a part in our failure.

@ChickenT2b can I ask who your diagnostic is with? I’ve read about a guy I’m interested in seeing and wondering if it’s him

@2021ivfagain that’s a lot going on, feeling lost makes complete sense. Maybe take extra time if you need it.

Usually I think that hopefully this year will be successful and all I can think of this year is there’s not even any hope for us, at best we can hope for a 2024 success but it feels less and less likely as time passes. I wanted to get a dog for ages and spent a long time thinking about it and viewed a poodle pup yesterday but I ended up having an allergic reaction. I’m going to visit again just in case it was other dogs present but I feel so sad that my body can’t do what other people’s do or behave normally. I feel like it’s sentencing me to a life of regret and sadness.

I’m trying to decide what tests to do now we’re in January. Definitely going to do karyotyping and NK cells. Doctor sent me info about ERA but I don’t really understand the benefit of it since my aim is to continue with natural modified transfers if I can. I had a chemical so implantation has happened one time, is there any reason not to continue with natural modified? I am really opposed to taking estrogen with my medical history but the doctors are a bit dismissive of this, I’ve found. Is there any point doing the EMMA/ALICE if I’ve already done the fertilysis tests and know I need anti and probiotics?

The only other thing I can think of is seeing the endometriosis doctor who does the scanning. I don’t want to have a procedure if the scan option is a reliable test.

@Gardenlady543 thanks I wondered if anyone on here with endo was having a good fertility clinic experience. I just really want a clinic that understands and considers any extra complications etc.

@thislittlebird I have booked a scan with Mr Jurkovic in London. From my research he seems the most highly recommended. For surgery I have read a lot of good things about Peter Barton-Smith however my insurance sadly doesn’t cover him.
What’s your endo/fertility situation? I’ve been trying for 10 months post mc now and NHS US showed two endometriomas on one ovary. So thinking either surgery or IVF or both will be the next stop.

@ChickenT2b Thank you, I hadn’t heard of him. Peter Barton Smith was who I’d heard of. I have no history of endo, i’m just not sure if it’s something I should be ticking off from a list. We’ve had five ivf transfer failures including one chemical, but two of the embryos were bad quality (most likely from my husband’s bad sperm that cycle). I can’t decide whether I should look into it and rule it in or out.

@Gardenlady543 do you have an RE in mind? I would like to see one at some stage

@ChickenT2b it might be worth chatting to the lister. I’m with them, they have a number of specialists in various areas. They may well have an endo expert.

@thislittlebird I feel like this too, to hold a baby by Xmas we basically have 2-3 months to get pregnant and considering it's been so long for me and I've got nowhere it's hard to go into a year after a childless Xmas knowing the next one is also likely to be the same :( I got excited there at the thought of you getting a dog, how rubbish that you had a reaction, but a good idea to go again, it is best to know early as you don't want to get a dog and bond and have to give it up. I really hope it was something else causing the reaction and you can get the dog, as dogs are just the best! I'm not a fan of the ERA, my ERA in a medicated cycle said I'm pre receptive and I need 156 hours of progesterone, I did modified natural at 126 hours and I implanted probably on 3dp5dt however that's 8dpo which is when most people implant anyway, so I can't see how moving the transfer time would have affected success. I think chemicals are more likely if the embryo implants when the endometrium is post receptive, but surely if I had moved the transfer 1.5 days later then it would have been much more likely to be post receptive vs the timing I did, so who knows. If you are happy with the treatment you've had after the fertilysis tests then there is no need to do EMMA ALICE. You can order a receptiva kit from the company that does it and have your specialist take a biopsy for it but really the gold standard is a lap if you think you might have endo, this is why I had the surgeon look for endo when I had fibroid surgery.

Oh I didn't update everyone that I got CD1 on Saturday, still bleeding at the moment which is a long time for me, maybe the chemical that did it, hopefully it's finished by Friday as I have the saline scan booked in then.

@thislittlebird by RE do you mean reproductive endocrinologist, I think this is more of a USA thing, although think I saw there was an expert in London when I looked a while back, I'm under Gorgy so think he covers a lot of it, but I need someone specifically in endocrine just on the thyroid side of things.

@Gardenlady543 yeah I get it. This has been the hardest year by far for me. The hardest Christmas too. I'm normally a big kid, I like decorating the house and I like taking the opportunity to ice skate because I love ice skating (I missed my calling). This year I feel kind of dead inside tbh, not myself at all. I'm still crying a lot, it's been going on since November. I'm tempted to ask my doctor for antidepressants but last time I asked they wouldn't let me because we were TTC. But it's been years now and we still aren't further along and I'm fairly sure I'm depressed. And I know that we definitely will not be pregnant by April. My husband's sperm don't fucking swim, it's just not even likely. So we will spend months working on that, meanwhile I'm just ageing and ageing and getting sadder. I'm tempted to book a holiday for next Christmas, just to get myself out of this situation a year from now.

I had a panic attack about the dog, I think. I was just excited and the terrified it would mess up the ivf if my immune system was going crazy, or I'd have to give him up if I couldn't get the allergies to calm down. But the lady was really nice, she lived on a farm in Essex and we visited the dogs there but there's other dogs and other animals around, so she said she'll wash him and his mum before I come again. I haven't heard from her today though, I should probably get in touch. I love dogs, I'm so upset that my allergies kicked off, it seemed fine when I was with the various generations of poodles and then went nuts on the drive home. I have a cute photo of the little pup, we did agree to take him thinking I was ok and then I was not :/

The thing with endo is, should I even consider that it's something rule out? I have zero period pain, migraines are my only pms symptoms most months. I know there's such a thing as silent endo but we can't afford a private lap and I can't see my GP referring me for one.

I had a longer bleed last month after my failed cycle, still waiting for this cycle to start, not sure when because of the messed up last month. We want to book a spa day as a christmas present to ourselves but can't until I know what's up with my cycle.

@Gardenlady543 yeah sorry I typed RE because I'm so used to seeing it, I saw there's one at imperial. Have you identified one yet? I would sort of like someone to look at both mine and my husband's hormone levels really.

@thislittlebird
So Peter Barton Smith is the surgeon. He would send you to Mr Jurkovic for a diagnostic scan anyway so you’d be better off going straight to Jurkovic. I think a scan with him is about £220. I believe he has special interest in fertility also so may be worth a look.
Assume you don’t have any cysts? Imagine they’d have picked them up on scans already.
The final thing to tick off my list at this stage is the immune testing with fertilisis. Endometriosis can impact immune cells so I read which doesn’t make for a great environment.

What does your clinic make of the 5 failed transfers? Do they make any suggestions for further testing etc? Or once on the IVF journey are you pretty much still on your own trying to figure things out? Just trying to manage my expectations!

Thanks for the recommendation, I hadn’t heard of them so will take a look.

@thislittlebird apologies - I just read your later message around your husbands sperm.

@thislittlebird I think the one at imperial was the one I found when I saw an endocrinologist when I was diagnosed with hypothyroidism last year, I decided in the end to go with a thyroid expert but he's not
practicing now which is so annoying as he was great, so I've just booked in with a generic endocrinologist. When I was having a lot of mental health symptoms I thought about starting on sertraline as I think this is generally considered safe, in retrospect it wasn't actually a mental health issue, I was in a medicated FET and my estradiol went to over 8000 and I was having uncontrollable anxiety, I am pretty sure it was the start of my thyroid issue. That's amazing that you can ice skate, I used to roller skate and my husband bought me some for Xmas but I haven't been able to use them because of my surgery and now it's winter.

I ruled out endo because I had literally looked into everything else and was having surgery anyway.

@ChickenT2b ah, makes sense, that's good to know! I'm paying out of pocket so any savings are useful. When do you plan to see him? I'd be interested in what he says. I have one small fibroid that not in the way or anything, so various people have mentioned it but said it's a non-issue.

Has anyone here already done the fetilysis immune testing? I kind of know whatever immune things I have will be raised so I'm always wondering if there's any point. I'm tempted to book an appointment with my clinic's immune specialist to chat through with him my concerns about some of the treatments. I'm also tempted to ask if I can be put on a lower than standard dose of pred at the next transfer because I gain face fat very quickly on high doses. The only time I implanted was when I was self-medicating with pred.

So the clinic have suggested NK cell testing for me, further tests for DH, we need to start all over again with him and get a DNA frag test done. Can't do more ivf until he gets the all clear to do icsi again. They suggested an ERA but like @Gardenlady543 lady was saying, I'm struggling to see the need because I'm still pushing for natural modified at this stage. I can't see a reason to move to medicated yet.

@Gardenlady543 So it's your thyroid one that's no longer practising?

I think I'll discuss Setraline with a GP, maybe a different one than before in case they're less opposed to it. I just don't feel like I'm coping very well right now.

Well, not sure anyone with skills would say I can ice skate lmao. But I'm brave enough to whizz round without giving a fuck if I fall over! I like roller skating too, but haven't done that in a decade or more. I'm definitely better at stopping on ice than on 4 wheels!

@thislittlebird yes I did the fetilysis immune tests and then took the results to Gorgy to discuss, it was the cheapest way to get the blood tests but a bit of a faff as you need to find somewhere to get your bloods taken and people here will remember I couldn't find a place to centrifuge the 2 vials that needed it for a reasonable price so I bought my own centrifuge!!

@Gardenlady543 what a faff! What did Gorgy say, just yes you need immune treatment of some kind?

@thislittlebird I've been on escitalopram for years and just recently had to increase- low doses and a stable person's with lower stress levels is far better for conception and beyond. My clinic is happy with this. As for endo, I have it on left ovary found during lap where they layered it but we still gets eggs from it, however we went to ivf sooner than some as I also have pcos and hubby has low volume and count. If tubes are patent and evidence of ovulation etc endo may not interfere- it can grow anywhere, cause adhesions but sometimes it can be seen by a very skilled radiologist and deffo on mri.

Unrelated question- at moment won't nhs who dont look into immune issues but consultant is giving me steroids from egg collection- could this be enough to reduce inflammation processes long enough to implant? If this doesn't work going to private for immune testing, the whole works I think. 3 years in and aince sartig ivf 1 year ago like someone said in earlier post just haven't felt trult happy and it's just so shitty

@thislittlebird my immune tests showed a complete HLA DQA1 match, slightly raised blood Nk Cells and low LADS (but LADS are only high after a full term pregnancy). He also wanted to do a Nk activity biopsy which was normal. He put me on hydroxychloroquine 200mg twice a day and I had LIT, as I have the full match I needed donor pooled but my husband had to be one of the donors in one of the two treatments in each course, I ended up needing two courses all together. Then in my FET cycle I was put on prednisolone, clexane and intralipids.

@kerrym87 some people do ok with just steroids, in USA they do a kitchen sink approach where they put people on clexane and steroids etc without testing but most people say it's better to do the testing and see an RI for a tailored plan, of course that ends up being very expensive.

I don't have any expertise to add to the recent chat on here but I wanted to send my love to everyone. Well done for getting through Christmas and new year. Not an easy time!

Second this! Sending lots of supportive vibes to everyone.

My update for the day is that the clinic have responded saying yes to modified natural (yay) and have my gonasi prescription for trigger ready to go once I ring with day 1 which is predicted today. Say they’ll do first scan on day 10 (hoping that it’s too late). I work in patient facing role in NHS and things are absolutely crazy busy right now. So will definitely be asking my GP for some time off once I’m properly into the cycle/for 2WW. I feel guilty given how much the NHS is struggling this winter but I know I can’t be second guessing if things would have been different if I’d let myself step away from work and I worry about picking up COVID/flu/any of the other bugs that are constantly in my face right now. It’s such high intensity job too and no real breaks possible. Yesterday I didn’t eat or go for a wee for hours which really struck home I couldn’t do this during the cycle or I’d massively be kicking myself for ruining things.

@Enfys23 I'm nhs too, sister on neonatal unit so can be incredibly stressful . I worked as far as I could into first ivf cycle then was off until just after negative test, tried working reduced hours in a different ward but got covid despite wearing masks and it torched my eggs. This cycle i have decided it bit worth stress affecting my body with 12 hr shifts sometimes without a break and it's in their and my interests if I am successful then I won't have anymore time off for repeated cycles. It's taken me a year to not feel guilty about it 🙄

@Enfys23 that's great you have the plan in place! Yes definitely aim to take some time out, it's so difficult to manage appointments, medications and the cycle stress, worry about the infection risk and do a role around the public that's also demanding. You come first in this situation.

And good for you as well @kerrym87 that's an extremely intense job and it's so important to make the right decision to ensure your treatment comes first.

I have been feeling really unwell, I'm still getting the hyperthyroid symptoms, today was my first day in a lower dose and I'm also adjusting to the low dose naltrexone. I have ordered a cheap fitness watch which hopefully can keep an eye on my pulse rate as it keeps going through the roof and I am better off lying down when this happens.

I had the iron appointment today which went well, they don't feel I need an iron transfusion, so that's one less thing to worry about.

I have my fertility specialist booked in to discuss the next cycle and have the saline scan, both on Friday, so that's the next hurdle.

Thanks @kerrym87 @Gardenlady543 it’s really helpful to hear this from others so I make myself believe it!! And that is so true @kerrym87 definitely will help me to see it that way.

I am sorry to hear you’re feeling poorly @Gardenlady543 I hope the adjustment to the new dose doesn’t take too long. That’s good you have both on Friday and can then have a plan and clearer idea of the next step after that. Let us know how the appointments go.

@Gardenlady543 during tapering off steroids I had a very high resting heart rate, up to 120bpm when my normal is 55bpm. Not sure if related but I did wonder. I went to the GP who just did an ECG, which was normal. I detected the high heart rate with a fitness watch.

I had an impromptu scan with consultant today as he wanted to check my uterus, ovaries and AFC following the miscarriage and before next stim cycle. My AFC was very low, which he put down to ovaries recovering after miscarriage. He recommended I wait one more cycle before stims. Gutted about the wait.