How I can help my sister who is experiencing v low PGS normal rates?

[Redsequin]

Hi all,

My sister has had a horrendous year going through IVF treatments. She is 40 and her partner is 42.

At first, it looked like they couldn't make embryos at all (they had fresh 2 rounds that ended with 0 embryos), but in her 3rd round, after ensuring her partner took sperm improvement supplements (against the advice of her consultant who has always blamed her eggs and seemed reluctant to even test her partner's sperm), they got 4 embryos (all BB grades) out of 4 fertilized eggs. They added these to 2 other frozen embryos they had already (made from her partner's sperm and a batch of eggs she froze when she was 35) and had all 6 sent off for PGS testing.

Unfortunately today she phoned me in tears as only 1 embryo has come back as normal. The others are not even mosaics but are apparently showing multiple markers of problems (so I think more than one trisomy).

Has anyone been in a similar situation where they are not getting many PGS normal embryos? Is there anything she could do going forward? I have suggested she get his sperm karyotyped to see if that is the problem, and that maybe they change consultants, but otherwise don't know what to suggest.

Unfortunately, her partner is also very against using donor eggs or sperm. She is also scared to go ahead and transfer her 1 normal embryo without a backup in case she has implantation problems.

Sorry for the long post! I'm just desperate to help my sister if I can.

xxx

[Koala365]

I am sorry to hear about your sister's situation. I would suggest that she asks for all the tests for implantation issues before she has thus one embryo transferred. I didn't have those tests until I had had 6 embryos transferred and none had implanted and only after that did I find out about my MTFHR gene mutation (from thrombotic risk profile test) and high levels of Natural Killer Cells. I am now really wishing we had known to ask for these previously. Unfortunately clinics don't seem to suggest them until they can see that you have had several embryos transferred and they haven't implanted so it is a Catch 22. I personally believe they should be given to everyone in advance as they could save a lot of heartache for some people!

[Skittles11 in reply to Koala365]

I think Koala's idea is a good one. She may feel more confident transferring the normal if she has ruled out the implantation issues first

[Redsequin in reply to Koala365]

Thanks so much Koala for taking the time to reply. My sister and I did chat briefly about ERA testing but she says her consultant is adamant it’s pointless. I did let her know that so many ladies on this forum have done ERA and other testing and it’s been what’s finally changed their outcomes. I’m hoping she will get a second opinion from a less old school consultant before making any decisions! Xxx

[Koala365 in reply to Redsequin]

Yes, I didn't do the ERA testing myself predominantly because I wasn't having an FET but I did do other testing to check whether there was anything preventing an embryo implanting for me. As you suggest, even if ERA turns out not to be worthwhile it may be worth doing some of the other tests now rather than getting further down the line, when she knows more about the whole thing, and wishing she had done various tests just to exclude various possibilities. All the best to her whatever she decides xx

[Redsequin in reply to Koala365]

Thank you! I will pass your thoughts on. I agree implantation testing can’t hurt particularly as at the moment they will only get one shot.

[Ivfgotadream]

I didn’t get any normals aged 36. To be honest the science isn’t 100% accurate. I’d be inclined not to test again if I was her x

[Redsequin in reply to Ivfgotadream]

Hmm yes, it’s a very divisive subject from what I’ve read! Actually though her clinic won’t transfer the embryos of anyone over 39 unless they are tested first so I think they really pushed it on her. She’s also very worried about miscarriage if the embryos weren’t viable, which is understandable.

[Skittles11]

Hey lovely. I think its really sweet you want to be there to support your sister.

I haven't been in this exact position, I think you know but may not recall I had two embryos sent for testing, one was normal and one was complex abnormal.

My husband and I had previously both had karyotype tests done too.

I can relate to the fear of transferring the normal embryo, I have a similar situation on my hands. As you know I've been trying to bank all year and have faced many obstacles.

She could try and bank more and test again or even not test which would give her more embryos to try I guess. She could try a different protocol to see if this yields more eggs and therefore embryos.

I'm afraid with PGT-A testing there is nothing to be done to improve the outcomes as such. I was told karyotype was not worth doing of PGT-A testing because the embryo being tested would yield the info anyway. Nonetheless we did karyotype ourselves for more thorough information.

Sorry I don't think this is much help xx

[Redsequin in reply to Skittles11]

Hi lovely Skittles! Yes, I remember your situation well and the difficulty you’ve had in knowing how many more fresh rounds to try. I think my sister would have given up on fresh rounds, but since she suddenly got 4 embryos after having had none twice, now she is conflicted. We did have a chat about how she might weigh up the cost to her mental health/finances vs the chance of getting another one or two viable embryos. It’s so hard, as of course IVF working is what she wants more than anything.

Unfortunately, I think it unlikely that a new protocol would give her more embryos. Her and I respond exactly the same to stims (I.e hardly at all) and even when she did egg collection at 35 she only got a handful of eggs each time, even with trying different drugs/amounts.

Interesting that you were told karyotyping was pointless if also testing embryos. I guess that does make sense, although like you say, it never hurts to have more info.

Anyway thanks so much. I will keep chatting with her and hope it becomes clear to her what her preference is for where to go next! Xxx

[Skittles11 in reply to Redsequin]

And I guess that's the awful battle we face of whether to try again and hope we can improve the result or whether to say right that's enough now. It's a painful and difficult decision, there's no two ways about that.

Yeah I was told there was no point in karyotyping if we were testing the embryos. I decided not to listen - I knew I wanted the info about our karyotyping because of the TFMR loss we had due to chromosomal problems and it was really important to me to rule the issue out especially if ever trying naturally.

In my opinion your sister could maybe do with a consultation with another specialist perhaps from a different clinic to see their view on testing, karyotype, implantation and PGT-A.

[Redsequin in reply to Skittles11]

Yes, that's it in a nutshell. It's so hard to know whether to press on or not: the stakes either way seem so high. I do agree that she could do with a second opinion. Her clinic has made a few key mistakes so far and she also says it feels like her consultant doesn't really have time for them, which strikes me as not very good since they're meant to be one of the leading clinics in London!

Wishing you so much luck with your cycle 🤞

xxx

[Mudra85]

Hi Redsequin, I'm sorry for your sister's bad news. I'm also doing PGT and know how much it sucks getting the results, especially when they're not good results. I know it won't feel this way, but getting 1 normal out of 6 is actually very good at 40 years old. I had my first PGT IVF cycle aged 35 and got 1 normal and 1 mosaic out of a total of 5 embryos. At 35, I could expect around 50% of my embryos from that cycle to be normal, At 40, that percentage is more like 20-30% will be normal. Some cycles you do better than average and others you do worse. It is certainly still possible to get normal embryos at 40, but it is likely to be harder and to take more IVF cycles to get a couple of them, sometimes even just one. I had to really adjust my expectations of the number of normal embryos we could get after our first cycle.

The majority of the time whether an embryo has the right number of chromosomes is due to the egg and not the sperm. It is sadly something that gets worse as we age and there's unfortunately nothing we can do to reverse it, although we can certainly do things to try and boost the egg quality we currently have such as eating well, taking supplements etc.

With that said, I think it is still important to check her partner's sperm. That shouldn't be ignored just because of your sister's age. It's a big decision, but your sister may also wish to do another IVF cycle to try and bank more normal embryos. If she were to do another cycle, she could consider using Human Growth Hormone as part of the cycle, which may boost the number of embryos she's able to get meaning more chances of finding at least one more normal. Before transferring any normals, she should consider having a full assessment of her uterus, either with a saline sonogram or hysteroscopy and other testing (EndomeTRIO, immune/blood clotting testing etc) to ensure she's ruled out anything that may cause a transfer to fail.

There probably isn't too much you can do to make your sister feel any better, as this is a very all-consuming process and the trauma of it sadly can't be taken away - I wish it could be. Just listenining to her and understanding her pain and frustrations going through this will be helping.

I wish your sister all the best whatever she decides to do and I hope she's able to find a way forward quickly.

[Redsequin in reply to Mudra85]

Thanks so much for your very thoughtful reply and all the great advice—I will pass it on to my sister.

I spoke to her again yesterday and she seems to be feeling slightly more positive: grateful to at least have one embryo and hopeful that there's no reason that one couldn't turn into her baby.

I think something she's still struggling with/ weighing up is that she always wanted more than one child and now that's looking like it might not happen. Even if she goes through a few more rounds of embryo banking, it's looking like she may not end up with many more embryos. What's extra tough for her is that she did freeze eggs at age 35 but her clinic messed up by not getting proper sperm testing on her partner before they fertilised them and, as it turns out, his fragmentation levels are borderline and although they all fertilised, only 2 out of 17 made it past day 3.

xxx

[Mudra85 in reply to Redsequin]

I'm glad your sister is feeling a bit better about things today, but I completely understand her concern about having just one normal embryo. It's very scary not having a back up should the first not work, although I really hope it does if and when she decides to transfer it.

It must also be really hard thinking she might not end up having another child as hoped for.

Banking is not the best option for everyone, as speaking from personal experience it's very physically, emotionally and financially grueling and you have no idea if you'll be able to get what you need to hopefully have a baby at the end.

It must be really frustrating for her that the clinic didn't thoroughly investigate her partner's sperm in the first place!

[Redsequin in reply to Mudra85]

Thank you! Yes, she’s not really in an ideal situation and I’m just keeping my fingers crossed she finds a way through. My IVF journey was relatively straightforward and even that was completely overwhelming. So many different tests and add ons available and no one seems to agree what actually works.

Was so sorry to see you got a BFN this time round. Hope you are feeling supported by your medical team and loved ones at this time. It’s all just so bl@*dy hard.

Hugs xxx

[Purpledoggy]

Had your sister’s partner had a DNA fragmentation test? If not it’s definitely worth pursuing as some things causing excessive fragmentation like varicocoele can be fixed xx

[Redsequin in reply to Purpledoggy]

Hi Purpledoggy. Yes, he has had a fragmentation test. Unfortunately, the clinic didn't perform this until after fertilising her frozen eggs from when she was 35 and noting his sperm looked "misshapen", so the info came a bit late. He is now on various supplements that seem to have really improved their blastocyst rate as evidenced by their latest round, which produced 4 embryos. xxx

[Purpledoggy in reply to Redsequin]

Here's hoping things continue to improve! xx

[Redsequin in reply to Purpledoggy]

Thanks lovely.

[Marisa32]

Having one viable embryo left after testing in your 40's is pretty normal.

[Redsequin in reply to Marisa32]

Hi Marisa, 2 of the 6 embryos were from her mid 30s, so I think she was hopeful for a slightly better outcome. She has also struggled with rounds where she has gotten no embryos, so I think maybe it’s hard for her to know whether to keep on trying to embryo bank in search of those few normal embryos.

[Marisa32 in reply to Redsequin]

Yeah, it's not easy. At 35, the egg quality starts dropping pretty fast. Plus, it seems that in her case, the sperm wasn't the greatest, which most definitely affected the outcome. I would investigate the sperm issues further before doing another round. Karotype on the partner plus DNA fragmentation test.