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

Thanks that's really helpful, appreciate it. Where can you get menstrual microbiome done did you have to sent it to another country?

Sorry I see it now. Thanks

Hi everyone,

I've been following this thread for a while now as I thought I would be needing to get the ERA test done, and you are all so knowledgeable. However, my Consultant has instead recommended immunes testing and I know that that is a route that some of you have gone done, so I'm hoping you might be able to give me some advice please.

Firstly, I am very sorry for all your losses and struggles. I share in your pain and admire your strength and perseverance.

I have been ttc for 6.5 years and have had various fertility investigations and treatments (including IUI and IVF/ICSI) and 3 miscarriages along the way. The first 2 were due to sperm DNA fragmentation (after previously being diagnosed with "unexplained" infertility) - which was investigated further and treated by the infamous Mr Jonathan Ramsay. I also got a microbiome test through Invivo and a probiotic protocol from Melanie Brown. I think the most recent miscarriage was due to hormonal imbalance after a long protocol IVF cycle on max stimms (I wish in hindsight that I did a freeze-all cycle, but I got poor advice). I am fortunate to now be in a position where I have 3 embryos in storage, ready for a FET. However, my Consultant first wants me to have further miscarriage investigations, including the NK cell assay and TH1/TH2 cytokine profile (I have already had all the NHS/Tommy's tests plus the antiphospholipid syndrome and thrombophilia tests - all fine).

I'm with Care Fertility and they have quoted me £1,374 for the immune testing. My understanding is it is sent to the USA (presumably to the Chicago lab which everyone talks of) and results take 4-6 weeks. However, the ladies on the NK cell thread helpfully pointed me to Dr Shehata's podcast and he is critical of sending samples to the USA because it's crucial that they are analysed fresh within 12 to 16 hours. This makes complete sense, but don't many clinics (including Dr Gorgy) use the Chicago lab rather than the London lab?
(My research is hampered by the fact that some people refer to the immune testing as "Chicago" tests even if the test is done in the UK and not at the Chicago lab).

Also, the Reproductive Immunology Centre in Croydon (who I think are the lab that Dr Shehata / CRP use) appear to do the same profile for just £700 with results in just 48 hours (although I'd need to ascertain if my IVF clinic can interpret the results) - so I don't know why Dr Shehata / CRP would cost more than double this?

Then there's the Warwick clinic/lab who don't believe in peripheral blood NK cell testing, only uterine NK cells which require a biopsy.

I've only just started researching, but it's all so confusing and I'm feeling very lost! Time is of the essence as I'm hurtling towards 40, and finances are limited as we've already spent a fortune / gone into debt. I feel under so much pressure.

I wonder if anyone has any experience of immune testing, clinics/labs, costs, etc, that you could share please? Any advice?

Many many thanks!

Hi @Faithhopelove83 and welcome, my understanding is there is 1 UK lab and it doesn't do all the tests. As far as I'm aware the samples taken at most UK places go to Chicago, I have mine done through TDL I think they do them Monday to Wednesday and go on a flight to Chicago that night. Before that I had my initial tests with Fertilysis that went on a longer journey.

You are already clued up on this, so there's really not much I can add:
I had these blood tests
HLA DQα matching
KIR
Leukocyte Antibody Detection Panel (LAD)
NK cell profile
NK cell cytotoxicity assay
Th1/Th2 cytokine ratio assay
I had NK number biopsies in Coventry and a NK activity biopsy.

This information was then used to make my treatment plan up. I'm under Dr Gorgy, there are a few others here under Dr Shehata.

My update is that Mr Trew got back to me and has been really helpful, he agrees we shouldn't waste a precious high quality embryo and feels we should do a HSG and go from there. So I called to arrange it as it needs to be before CD16 which gives me the option of tomorrow or Thursday and both are fully booked :( so it's likely to be next month. The more I look at it the more I wonder if it was scraped by the catheter so next month may be a good option as it would be gone, but feel I'm under time pressure with the LIT effect.

Thank you very much @Gardenlady543 that's really helpful and I really appreciate you getting back to me so quickly.

This is the podcast I referred to. It's really good, but that's what got me worried about sending the sample to the Chicago lab. I'm awaiting a response from my own IVF clinic on this point, as I was supposed to be getting the test with them tomorrow but then panicked and cancelled pending further research.
open.spotify.com/episode/7eQPTjV8nd4HnVWSZOPmyC?si=VpAF44mbQg2sq4ofYWOnRA

Really feel for you not being able to get your HSG until next month. I hate all the delays and waiting periods, it's so frustrating, everything seems to go at a snail's pace at times despite best endeavours to speed it up. I'd hoped to be able to do a FET in January/February but it looks like it wont be until March now. I'm so desperate to make progress but, like you, I don't want to waste a precious embryo and so feel I'd better get these tests done first.

If it's ok, I'd like to stay on and join you all if that's ok, even though I'm not doing ERA/EMMA/ALICE at the moment. You all seem to be fellow veterans in this hurrendous journey, albeit we're battling different issues. Would be nice to have the company :-)

@Faithhopelove83 sorry you’ve been on this journey for such a long time. I had immunes testing at Care Nottingham. Looking back at my notes from last year, sample collected 3/5, received in lab 5/5, reported 6/5 and report received by me on 18/5 so much quicker than what you were quoted. I doubt the day or two in transit affects integrity of the sample but I’m not an expert on that. I did the testing without any indication except for a biochemical pregnancy of one PGT-a embryo ( previous success with a PGT-a embryo). My consultant didn’t recommend the testing, I elected to do it. He said that the testing would likely result in flagging up some issue/out of range numbers as it does for vast majority of people. Low and behold it reported high TH1:TH2 ratio for me. So I guess what I’m saying is be prepared for the results to indicate the requirement for follow up treatment.
Personally, I’d always enter this type of treatment (if of AMA) using euploid embryos as if you don’t, it’s difficult to know afterwards what the failure was likely caused by (acknowledging that euploids can sadly fail regardless).

@Gardenlady543 i can’t believe the previous consultant flippantly suggested just going ahead with your high quality euploid. I’d be doing what you’re doing and investigating further. Sorry about the delay however. Time is dragging for me with the month’s delay.

@Faithhopelove83 I posted a reply before seeing your last reply! I’ve not listened to that podcast yet.
I should clarify that my immunes bloods were tested in Chicago, as my first post wasn’t clear!

@Faithhopelove83 of course you're welcome to stay :) most of us here are just complicated cases these days, we've been talking for about 2 years now and while it started off discussing the ERA EMMA ALICE, it really is all things complicated now. I personally would do the tests through your clinic, many counties don't have a lab at all and it will be quite fragmented if you went to the Uk Lab for some and another place for the ones they don't do.

Thanks @CailinInUK I feel I'm on a time limit with the LIT effect lasting 4-6 months. It is feeling really unfair. New issues keep coming, nothing is easy :(

@Faithhopelove83 I'm with a care fertility clinic and they were quite dismissive of immune stuff and didn't offer testing at all. In the end I went to CRP clinic and had 3 things flagged up from the blood tests, so now have treatment for those.

@Gardenlady543 I'm glad mr trew got back to you but I'm sorry to hear about the delay. How gutting!

Thank you so much @CailinInUK and @seven201, great to meet some fellow ladies at Care, but how bizarre the different approaches between their clinics! Thank you for the help and advice.

@CailinInUK That's good to know your results didn't take as long as what I've been told. Hopefully mine will be quicker too. Do you mind me asking whether you had treatment for the TH1:TH2 ratio and how you found it? And I take it that no issues were raised with the test reliability despite being analysed 2-3 days later? Dr Shehata is adamant that samples should be rejected after 24 hours. But then so many clinics use the Chicago lab - surely they wouldn't if the samples deteriorated and the results were unreliable. I got so tied in knots and stressed with it all today.

@seven201 I'm sorry for your experience. I hope treatment is going well. Do you recommend CRP?

@Gardenlady543 Thank you 🙂. I think you're probably right that I should just stick with my IVF clinic for the immune testing. I'm just nervous after listening to the podcast and also after previous experience when they were out of their depth with DH sperm DNA fragmentation. Best decision we made was to research and get specialist help with that elsewhere. I do wonder whether we should do the same here. I'll wait and see what that say tomorrow (as they didn't come back to me today) and then we'll make a decision.

It'll take me a while to get up to speed on everyone's situations, but sending you all best wishes meantime xx

@Faithhopelove83 I can’t help with your queries but I hope you get answers and can get these tests under way.

@Gardenlady543 completely agree you cannot just “see how it goes” with a precious euploid embryo. What a ridiculous thing for the consultant to suggest. I’m glad you’re ignoring them. I’m sorry the HSG timing means there’s a months delay, that’s rubbish.

thanks @seven201 I realised I would stress all week, so rang clinic and they have agreed to move my first scan to Friday. I may not be ready and still need rescan but at least I won’t be stressing all weekend. I’ve definitely surged as early as day 9 before so day 8 for first scan seems to make sense.

I’m sorry it’s so tough @VenusStarr I think we can all relate to the grief. People can be so awful sometimes and just not think as well. LOL @Gardenlady543 I think I need to try some of your honesty, sounds cathartic!

Thank you @Enfys23 . I'm glad you were able to get your scan brought forward from CD12 to CD8 (like you, I can ovulate early and would not have been happy with such a late scan) and I hope it goes well on Friday.

I need to read and catch up but just wanted to drop this here since as I just read it. Does anyone else here have a slightly high vaginal ph? Mine seems to be a little higher than 4.5 whatever I do tbh. I was skimming this study which tested various groups of women and found it can vary slightly based on bacteria colonies that different ethnic groups or even individuals have.

I often have irritation which is worse around ovulation and before my period, but it’s not only reserved to those times so I’ve been doing a number of ph tests lately and it almost always is 5-5.5 from what I can tell. I’ve occasionally seen it slightly higher or lower but not often. It just worries me because I’m sure it’s been worse since I’ve been 35 + and I’m trying to reassure myself it doesn’t mean I’m perimenopausal. I have to keep telling myself it’s ok, and my FSH is fine etc.

I need to catch up on the thread. I don't know about anyone else, but since being back at work things are so full on. I mean it's good to be busy but just barely have much time at the moment.

My dh had his urology review for sperm dna fragmentation yesterday. The consultant wasn't too worried, which is good. He's going to do a microbiome test (although I did say that I'd done the endometrio tests so was it necessary and he said he wasn't the best person to ask!) So got that to post back. Dh is also going to book a testosterone blood test. The consultant said if it's low (under 12), he'll prescribe clomid 🧐 which I'm intrigued by. Has anyone heard of that or used it?

Think I'm going to go back on hydroxychloroquine from next month. We're 3 weeks into impryl, I think it may have pushed my ovulation back to cd13/14. Not tracking but you can't ignore some telltale signs. We'll see in a couple of weeks. April is when I think we'll start actively trying again.

@thislittlebird I've never checked my pH levels so I'm not sure what's normal really.
How are you?

@Enfys23 I'm glad you've got an earlier scan. Hope you're OK.

Hi @Faithhopelove83 ove83 Welcome to the thread. I'm sorry for your losses ❤️

I've done the nk cell biopsy with Professor Brosens in Coventry (linked to Warwick uni). This only measure nk cell count and my results were very different. I'm not sure I rate it as a test.

I'm under Dr Shehata now. He looks at peripheral nk cells, my count is normal but my activation in pregnancy is very high (3.05 compare to 0.8 as the cut off). He uses St Helier's lab and has created this activation in pregnancy test.i have had 2 losses under hi treatment plan and we're 2 years into treatment with him and lots of money down (initial tests were about £2.5k). But I'm sticking with him. My protocol includes prednisolone, hydroxychloroquine, gcsf, aspirin, intralipids and cyclogest. If doing ivf I'll also be on fragmin and lubion. We're ttc with superovulation later in the Spring (had an awful year of cancelled ivf cycles).

@Gardenlady543 y543 how's things with you?

Hope you're doing well @Janefx40 xx

Sorry for the crap formatting! Having real issues posting x

@VenusStarr I still haven't read up from here but to quickly answer, yes, I've heard of clomid being used for men often. My dh will be having hormone tests in the next couple of months, hopefully, and I'm wondering if it's an option for us. It increases FSH and LH afaik and thus sperm production, but I think they usually use it to combat low count.

@Faithhopelove83 welcome!

Thank you @VenusStarr that's really helpful. Goodness, that's a lot of meds! I really hope it works for you.

In case it helps, for the sperm DNA fragmentation, my DH used Proxeed Plus then Proxeed Men. This, along with some small lifestyle changes, improved things. We were also able to prove with a 3rd Comet test that the Zymot chip works for his sperm and so we used it along with ICSI.

Re your question about Clomid, this was the first fertility drug I used in an IUI cycle, but it thinned my lining and caused me to develop an ovarian cyst, so the cycle was cancelled and I've never used it again (I got on better with Letrozole, but thereafter moved to stimms). Ive not heard of Clomid being used in men.

All the very best with your superovulation cycle!

Sorry to ask a further question about immune testing (I'm still waiting to hear back from my clinic 🙁) but does anyone know if the Chicago lab test for NK cell activation after putting the blood into a state of pregnancy (i.e. what CRP / Dr Shehata does)? Thanks to everyone for the help/advice so far.

Thank you @thislittlebird 🙂

Re immunes. I enquired about NK and karyotyping today with my clinic (Lister). Looks like it’ll be more than £1k for both which is just not ideal but here we are. I’ll probably just do the immune panel my clinic offers (highlighted), at least I think that’s the appropriate one? I need to do some more research on this before I book it in. Also going to do karyotyping because I think it probably makes sense before we get to any PGT-A stage of future embryos, but my doctor might not agree. And then there’s a few more I’m considering like MTHFR.

@thislittlebird I’ve been wondering the same thing about ph as mine seems on the high side between 4.5 and 5 on the colour chart but swabs have come back with no infection. It majorly stresses me out and a gp told me to stop testing it.
I would like to know if there are variations but can’t find much online x

@Faithhopelove83 to answer your Q, my treatment for the elevated TH1:TH2 was intralipids before transfer, then around three or four sessions four weeks apart after transfer, plus steroids 20mg/day up to around 12/13 weeks pregnant. Intralipids were fine, physically. I had side effects on the steroids such as high appetite, fat face and sleeplessness. Didn’t enjoy that. I sadly had a late miscarriage at 20 weeks, cause not yet known. I’m unsure if I’d opt for the same treatment if I get to another transfer, that’s just me, personally. I had success prior without any immunes stuff so I’m on the fence. Lots of ladies have had success while on immunes.
Nothing was mentioned about the risk of results being affected by the shipping to Chicago, it didn’t even cross my mind tbh. I don’t know if Chicago do ‘in pregnancy state’ tests, that wasn’t mentioned to me.
Good you found Zymot worked, we’re going to use that in stim cycle in March though no diagnosis to do so. We have to use ICSI for PGT-m anyway but I suspect DH might have elevated DNA frag.

@thislittlebird i started testing pH a few times over last couple of months and have slightly elevated too- 5.0, , 5.5. That aligns with my microbiome result being deplete of Lactobacillus. I read pH can naturally vary through cycle, especially during period and ovulation. What pH strips do you use? I’ll dig out mine. The colour differentiation between pH is not great on mine so difficult to assess. I’ve yet to retest as still waiting to treat with antibiotics and waiting on my delivery of Good Clean Love probiotics first.

@VenusStarr ive heard of Clomid for male infertility, as you do when you spend endless hours on Google! Not had reason to use it but it seems fairly standard.

Yeah I get it. Mine is always blue, and that’s 5.0-5.5. I agree that we should probably stop testing it since nothing much seems to make a difference. I don’t have any infections, but it’s hard to keep t ‘what if’. can I ask how old you are? I’m sure this issue has worsened for me since I’ve been about 37. But maybe I just didn’t think about it quite this much before. Yours is pretty normal tbf, I wonder if it’s just your individual colony is a bit different like that article said.

@CailinInUK yeah, I have poor lactobacillus too but I can’t say any of the stuff I’ve used/taken seems to make much difference to the ph. I’ve ordered those after you shared the link the other day, also ordered oral l.crispatus, none of them have arrived or even dispatched yet.