Embryo batching with PGS testing

[2021ivfagain]

Hello. I thought I’d start a new thread. It seems like the old one has been closed.

It’s been really good to share advice and experiences when going through the ups and downs of embryo batching.

Hi all, can I please join thread? I would appreciate any advice or hear about your experience.

i am in a bit of a limbo, had a few miscarriages from previous cycles, and luckily in January I did Afresh cycle got 5 blast and our embroy stuck and split into twins unfortunately we lost both twins at 26 weeks due to an accident of cord entanglement. It was soo traumatic to go through a painful journey of ivf and for to be taken away from you when you are so close.

Fortunately I have about 8 blast frozen only 3 out of 8 are of good quality, currently 41 years old. I have been advised to do pgT testing of all the frozen embryo's to reduce risk of miscarriage I am just traumatised I feel like I couldn’t survive another loss mentally and physically :-(
Has anyone thawed, biopsied and refreeze their embroys and then transferred back with positive outcome? Basically I am just worried we are doing more damage to the embroys really unsure what to do. Please share your experience age and outcome. Thank you so much for reading x

Hi @Lil21 I’m so sorry to hear what you’ve been through. I recently had surgery at 9 weeks to treat a mmc where the baby only grew to 6 weeks. This was an untested ivf fresh cycle. I had a similarly early miscarriage last year with a natural conception. But to lose them both at 26 weeks the way you did is heartbreaking. I hope you had support during this tough time.
I’m in a similar situation to you ivf wise, in that I have 2 frozen embryos from my cycle. I’m planning to Pgt-a test both. One is ok quality, one is not great. I’ve prepared myself for the event that they’re both abnormal. I am also getting my miscarriage tissue tested. I only produced 3 blasts.
Am also 41. 42 in November. It sounds like you produced a good number of blasts so if it went drastically wrong you could do another cycle (which is also my plan). I’m also planning to do immune testing, but I don’t think that would necessarily apply to you.
Wish you the best. xx

@Lil21 am so very sorry to hear about your traumatic experience. I hope you are able to heal from it. I haven’t thawed and tested day 5 blastocysts but CRGH did freeze day 3s and then grew them all in a batch to day 5 and PGTa tested them. They seem to do this routinely so it must be safe to. Wish you the best of luck with the next stage of your journey.

@Lil21 am so very sorry to hear about your traumatic experience. I hope you are able to heal from it. I haven’t thawed and tested day 5 blastocysts but CRGH did freeze day 3s and then grew them all in a batch to day 5 and PGTa tested them. They seem to do this routinely so it must be safe to. Wish you the best of luck with the next stage of your journey.

@birdbybird good luck with your PGTa testing. I hope they are both euploids.

For my part, I have raised cytokines. I was expecting this as had the same in CRGH but it’s higher than it was. The clinic were quite insistent that they prefer Humira as their choice of immune medicine first then possible IVIG etc. I spoke to one of the ARGC doctors today and decided I would proceed with DuoStim at the end of this month or early next month instead and freeze all and PGTA any blastocysts we get. I would then start the Humira after that and bring my cytokine levels down before any transfer - she said this could taken 2/3 months. This all feels more prolonged than I had hoped but I was worried that if I wait for my levels to reduce before I proceed with an egg collection and fresh transfer cycle I may lose a lot of time and with turning 42 in a month - time wasn’t fully on my side. I also felt if we didn’t get any PGT normals then it ends the story quicker and we can switch to donor eggs. If you know anyone who has experience of DuoStims please do share the experience. I am waiting for ovulation to go in for some final bloods so I can end this monitoring cycle. ARGC seem very on it with checking stuff etc. and I feel very assured by them. But i am worried about what it will do to the final cost though. With my husband not fully onboard and just constantly putting me down, I am worried about how long this goes on for and the mounting cost and whether the environment at home and my overall resilience can survive.

@Sarahk20000 Do you have any reason to believe the raised cytokines are relevant to your fertility? I ask this question because ARGC, in my experience, have no idea how to interpret those tests or deal with real immunological infertility.

If you don’t have any symptoms of undiagnosed autoimmune disease, e.g. unexplained rashes, fatigue, dry eyes, joint pain, muscle pain, fever then I would completely ignore the immune testing TBH.

Humira is a serious immunosuppressant that could be dangerous to take if you don’t have something genuinely wrong with your immune system. I have a real rare disease (currently undiagnosable), which we are sure is the entire cause of my infertility and I am no longer at ARGC because they told me Humira didn’t work despite the fact that it resolved my unexplained recurrent fevers and that I conceived my older son naturally while taking it.

There is a genuine category group of fertility patients with undiagnosed autoimmune disease who benefit from immune treatment. If you’re not one of those patients, I would ignore the tests as TNFa can be raised for any number of reasons.

@Sarahk20000 I should add that, if you have a genuine disease, intrallipids are basically useless and you may as well take a large sugar pill. You could also take 3g of EPA/DHA daily from Holland & Barrett as that will do a similar job and is cheaper (I speak from experience here).

If you genuinely think you have implantation failure due to immunes (and you did miscarry an euploid embryo), I’d go to Dr Gorgy on the side. ARGC do immunes because they throw every drug at the problem, but they don’t actually understand immune problems. My first (natural) pregnancy with pregnancy monitoring from ARGC was extremely emotionally traumatic for that reason.

Also, as you are having implantation issues, I’d make sure you’ve looked into any other niggling or hidden health problems you may have, such as thyroid, before going ahead with a transfer. Again, Dr Gorgy can do a full work-up and you can go to your GP.

@Sarahk20000 and @Londonwriter there is no doubt that ARGC throw the kitchen sink at everyone - personally I like that but I get why it's not ideal too. However for balance I am currently with Dr Shehata at CRP who is a respected reproductive immunologist and listed in Dr Beer's book. He used Humira and intralipids if they are found to be effective during testing. Actually my protocol with Mr S is the same as what was offered by ARGC although they tend to use IVIG by default. Mr S has stopped using IVIG just because it is so expensive but it is effective. Dr Gorgy also used Humira to lower cytokines.

Are you on the UK Reproductive Immunology Support FB group? There are lots of women on there, mostly with Gorgy, who can answer queries xxx

@Janefx40 Sorry, I probably should have explained better.

I have injected Humira about ten times, plus countless IVIGs and have been on Intralipids continuously for six months. My single natural conception in nine years was following a round of Humira.

I’ve also worked for a fertility charity that supports evidence-based medicine and, as such, am sceptical about the widespread use of reproductive immunology treatments. This is because, although there is evidence that patients with raised TNFa/blood NK cells have poorer IVF outcomes, there is no clear evidence that taking Humira, IVIG or Intralipids improves the chances of having a baby. There is also limited evidence that Prednisolone can help with recurrent miscarriage.

Speaking from experience as someone with a real symptomatic condition that improves when treated with Humira and IVIG, it’s obvious that the cytokine tests are a very generalised, blunt and imprecise measure of the patient potentially having an immune-related health issue. Having spoken to Dr Beaman, who devised the cytokine/NK tests in the Chicago lab, on the telephone, anything that causes systemic immune upregulation can cause raised TNFa/IL-10 and blood NK cells. It is my understanding that severe burns or inflammation around a large-scale injury could cause similar cytokine results.

Therefore, I strongly recommend that anyone with raised cytokines asks the question “Is there any evidence that I have an overactive immune system or an immune-associated disease (e.g. endo potentially has an immune connection), such that I would benefit from immune suppression?” I have seen several ladies on the FertilityFriends forums who developed fungal infections or other serious complications from taking immune treatments when they did not, in fact, have an overactive immune system. You cannot tell if you have immune problems from those tests and neither can your clinic (ARGC misinterpreted multiple times my actual health based on the cytokine tests).

Sorry for the rant…

@Londonwriter I've dropped you a PM - I hope that's ok.

Hi @Londonwriter Im also going to see Dr Shehata in September, do you have any opinion on his treatment?
when you say endo, do you mean endometriosis or endometrisis? I have had the former. I also get psoriasis like growth on my fingers (I got this with my latest mc….can’t remember if I got it with the others).

I decided to go with Dr S, as heard in a podcast that it’s best not to send the bloods to Chicago for tests as it’s far away and makes the result inaccurate and Dr S tests in a local lab…. Does Dr Gorgy send bloods to Chicago or test locally?
Im potentially going to be spending thousands on tests and treatment with dr S so feedback would be appreciated.

@Londonwriter I am trying to find out if I have autoimmune problems on the basis of my medical history & some results that came up during fertility treatment. I agree I am skeptical how effective these treatments are for people without immune issues and whether they could even be counter productive for some. It’s just difficult to make such treatment decisions when it feels like there is so much unknown about this area particularly if you are given no answers for infertility and/or losses.

Can I ask if there was a particular test you had that suggested an underlying autoimmune condition? I have had an ANA result that may be indicative of a problem but I’m not sure if for some people such a result is considered normal. I am trying to arrange to see a private immunologist at the moment but any advice on tests or what I should be looking for would be appreciated.

@Rosemarypots That’s fine :)

@birdbybird I don’t really have an opinion on Dr Shehata as my understanding is he normally deals with recurrent miscarriage. I’ve only been pregnant twice in nine years and both times had a live birth. Does Dr Shehata do the uterine NK tests?

I mean endometriosis. I spent some time chatting to a lady on Fertility Friends who had conceived twice taking Humira. She had endometriosis and had read that some people thought it had an autoimmune component. If I remember correctly, she also had Hashimoto’s and autoimmune diagnoses normally ‘travel in packs’.

Dr Gorgy sends the results to Chicago. I’ve never heard it makes the tests inaccurate and my test results do broadly track the amplitude/frequency of my symptoms but, as you can tell, I’m somewhat sceptical about the value of the ‘Chicago’ tests for fertility. They are real, clinically valid tests, but - in the same way as getting a +ve ANA or CRP can’t diagnose an autoimmune disease - getting raised cytokines doesn’t tell you the cause.

@InvisibleDreamer It’s hard for me to comment because I don’t have an autoimmune disease. I officially have an ‘immune dysregulation disorder’ (a disease so rare it’s currently undiagnosable that falls under the broad umbrella of autoinflammatory diseases).

Any private rheumatologist will be happy to talk through your full symptom history and run a full set of tests to rule out/diagnose common autoimmune diseases, such as RA, Scleroderma, etc. I’ve seen a private rheumatologist twice now and had those tests done. They also refer on patients to other specialists at NHS hospitals, if necessary, for further investigation. For example, I was referred to the Royal Free Hospital from the first private rheumatologist I saw to have a nailfold capillaroscopy. You don’t normally pay to see the additional specialists, in my experience - I’ve had an entire genetic test panel run on the NHS.

@Londonwriter @Janefx40 thanks for sharing your experience. I am very clueless about immunes and fertility. I don’t think I have any underlying conditions. Have been checked a lot for things over last few years. I am slightly sceptical looking at the sheer numbers in ARGC who seem to have to raised cytokines on whether every single one of them need Humira etc. from my own point of view I just don’t want to take any chance as we are onto a last chance of having a child at 42 (me) and 52 (my husband) years old. I do think there must be some merit in the approaches as the clinics with best success results seem to offer immune suppressants etc. but yes I can see why your concerns and reflections could be very valid @Londonwriter.

btw @Janefx40 in your time in ARGC do you remember their view on doing egg collections after catching covid. I had covid on 1 July for a week and am just wondering if 1 September would be too early to start my freezing duo stim cycle. I am worried though that if I don’t my husband could catch it still and I could be reinfected over next month or so and then have to wait again. Grateful for your views and anyone else who had this experience.

Aww I am also so sorry for your lose.. I also went through a similar miscarriage last year and it was also so painful emotionally and physically.
I did a couple of rounds to bank embryos hence the number otherwise I also don’t produce that much as well. I am still not sure what to do the research seems to be 50/50, I spoke to a different consultant who advices its best to do a fresh cycle and have those tested, he seems to think it’s not worth the risk of paying a couple of grands, but then it’s just so costly. I pray you get positive news, this journey is just so painful and extremely unfair. I wish you the very best x

Hi Sarah,
thank you for your message.
That’e really interesting. So you had initially day 3 embryos that were frozen and then defrosted to be grown to day 5 and tested? were they frozen again after PGt testing them? Have you had them thawed again? What was the outcome? Can I also ask how old are you if don’t mind me asking. So sorry for all the questions, I am just so worried I could lose them all or also so scared to go through another lose, my embryos are with CRGH.

@Sarahk20000

I did a cycle after getting covid and I’m so pleased I did not delay. It was a good cycle. I would definitely avoid delaying as fertility after 40 can change so much.

Now with my current egg collection planned even though I lowered fsh to 2, my consultant is not very hopeful. He said I have a lot of hurdles. I might not even get to egg retrieval, I might ovulate early or my cycle could be cancelled.

If I could have done my retrievals last year, I would have been in a much better position. I wish I had just booked with a different consultant who was not so busy. Please don’t delay. For me, I am full of regret but your levels now are similar to mine last year. You still have hope.

@Lil21 I was 40/41. Yes they froze day 3s, grew them to day 5s (took a few cells from placenta not the cells that form the baby) and froze the day 5s. For the frozen embryo transfers they thawed them and all three of the PGTA tested normal blastocysts thawed ok. They didn’t succeed in live births but I doubt that’s due to the frozen nature of it as frozen transfer success rates are very high in both the UK and USA.

@Lil21 i would go with CRGH advice, they are very good with their thawing rates and freezing techniques.

@2021ivfagain thanks for the advice, yes I am minded to proceed immediately as time isn’t on my side. I am sorry you are running into problems. Hopefully it will be alright in the next cycle. Fingers crossed. You have good numbers of day 3s already, just hope for the best and try and stay as positive as you can. No point in regrets, we do what we think is best at a given time. It’s all just a roll of the dice..

@Sarahk20000

Thanks for your message. The issue is last year I would’ve only needed two cycles. My egg quality was really good. I’m mad at CRGH and how I’ve been treated by them.

When my last cycle was cancelled, they were unaware and kept my money but did not tell me this until yesterday. They admitted they should have refunded it but didn’t realise this. They kept hold of it to pay for my next treatment. I only found out when I contacted them.

I’ve spent so much money but last year wouldn’t had to. I think my chances are very slim with only 9 day 3 embryos so far.

Hi. I have my first scan and blood test tomorrow after the baseline scan. Has anyone had their IVF cycle cancelled after first scan? I’m worried that they might decide to cancel. I wish I could’ve had the flare this time.

Sorry for the moan. This is my last cycle. I’m not allowed to do anymore so hopefully I have a few eggs if I get to retrieval stage.

Those of you asking about thawing & refreezing of embryos I would agree with what has been said by others - if the embryos don’t survive the process perhaps they have some kind of weakness? I don’t know if there is any science to back this theory up though. It’s a tricky decision.

@Sarahk20000 Sounds like you have a really good plan in place. Our cycle two months after I had covid was our best one! Personally I wouldn’t delay.

Is your OH just on a bit of a downer about the IVF or has it spread to other things? My OH really doesn’t cope well with stress now due to both our IVF journey & a really horrible couple of years in his job. He won’t see a counsellor or anything unfortunately. I think the whole attitude that they have to be the strong ones can be really unhelpful.

@2021ivfagain I hope you can do your round this time. Will you be allowed to try again if it’s another cancellation or will you grow your day 3s to day 5? What was your previous drop off between day 3 and 5? Ours was very similar every round (except for one round where we only had two fertilised embryos and somehow still managed to get one to day 6 🤷‍♀️).

@Londonwriter Thanks. I have managed to find a gynae near me that can also do immune testing so I am going to book an appointment with them. If they are no good then I will try a rheumatologist.