Hi everywhere. We are now making plans for what to do next after having to end our pregnancy due to medical reasons. We are worried about a similar situation if our embryos are not tested before transfer.
I am just wondering if anyone knows why some clinics do PGS testing as standard whereas some (like ours) do not. We have asked why they didn’t test last time and the dr said if they did test and the embryo was fine but didn’t survive the testing then it would have been such a shame.
I am just wondering if it is better to go to a clinic (potentially abroad) where they do test then.
Any thoughts would be so helpful. X
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Gempuddleduck
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PGS is a tricky one as they can come back abnormal when they are in fact fine ie the few cells tested are not representative, and HFEA require anything testing abnormal to go in the bin. I completely understand your concern given your recent heartbreak, I guess it depends on how many embryos you have ie if you have lots you can afford to unnecessarily lose normal ones, versus if you only have a few you may have them all come back abnormal and lose the lot. It would be worth discussing with your clinic the chance of having another similar problem as your recent one, as they may say it is rare and unlikely to happen again. Xx
Also clinics in the UK really shouldn’t be doing PGS as standard given HFEA’s stance and ethical questionability when not done on a case by case basis. It is more likely so they can inflate their success rate rather than being of benefit to the patient, and that doesn’t sit right at all xx
Hi Gempuddleduck, really sorry to hear of your recent loss. We had been ready for PGT testing and on day 6 (today) we were told the 2 embryos remaining are 3CC and due to that grade, a biopsy could cause damage. By the sounds of it, they weigh up benefit and risk depending on grade and maybe how many you have. We have been to clinics who have recommended it and one Dr who is an expert in PGT, but dead against it unless it’s for avoiding genetic conditions.
I think you may find some polarised opinions. I’m also following the post to decide what to plan for next time xx Good luck x
Hi lovely, sorry to read about your pregnancy ending. I can’t imagine how hard that was for you.We recently tested 8 embryos with PGS in the UK (london). The reason we decided to test is because we have no issue creating embryos, we just can’t get them to stick. So as Purpledoggy says, if you get plenty you can potentially afford to lose a few, but if you only get 1 or 2 then perhaps a bit less of an easy decision.Actually they don’t automatically bin “abnormal” embryos. If they are between 20-40% abnormal cells then they are labelled “low level mosaic” and they can still transfer those, based on the idea that they can self correct… if they are 40-60% abnormal they are “high level mosaic” and they likely wouldn’t self correct enough. Anything over that is abnormal.
We were lucky enough to get 6 normal out of the 8, but this throws up all sorts of questions as to why our transfers aren’t working, and we’re pinning it on immune issues! So much to think about xx
Hi , I’ve just miscarried a normal , tested embryo! Gutted is an understatement! I’m about to have tests too. I don’t think it’s 100% , even if they are tested, however. Good luck with your journey. It’s so very hard but you’re not alone xxx
We actually did bank embryos from 2 cycles for this, which wasn’t our original plan but the way it worked out. Might be something to consider. So we’ve done 4 egg collections and just going in to our 6th transfer…. We’ve gone about it in a very roundabout way which is a bit frustrating but mainly due to covid… xxx
Our second cycle we decided to PGT test, as our first round we had a BFP which ended in MC before 7 weeks the second embryo failed.
In our second round we had 3 embryos make it day 5. We had one put back and the other two tested, we did this because of our first round failures and also I was 40 yrs of age.
Needless to say the one put back failed before OTD and the other two were severely chromosomally abnormal
So the 3rd and final round we did a known donor egg round, my 30 yr old sister donated. We ended up with 3, 5 day blasts. The first transfer we are 19 weeks so for us the PGT testing made our minds up about round 3
It’s one of those things you just know is the right path, especially if you have exhausted all avenues with your own eggs.
I equated donating no different to having a blood transfusion or organ transplant, all the other person is doing is donating a ball of cells that’s it - it’s you who creates the child
I PGS tested age 36 after lots of miscarriages abs didn’t get any normals. Whilst it’s true you can transfer low level mosaics it depends on the chromosome that’s affected and not all clinics will agree to do it. I was allowed to transfer a mosaic but it was a BFN.I decided not to test again and had twins on my next transfer so I’m very sceptical of it all
Hi there, I have also been in your shoes and so perhaps this will help. I got pregnant on my 3rd IVF round, aged 41. All went well until we tested for foetal abnormality and the super bad news came. We lost our baby at 17 weeks. I had not gone down the PGS testing route as I did a a thorough reading of why HFEA has had to not endorse the method and it is true 1) the diagnosis can give a bad reading on a good embryo, 2) embryos can correct themselves, and 3) if there is something wrong it is most likely going to lead to a miscarriage. Given the PGS costs so much money, the results after so many years still don’t prove it effective, and given the IVF packages that are now available through Access Fertility etc are more cost effective, we opted to save our money from PGS testing and use it to be able to do more rounds (and such increase our odds). Having lost the baby at 17 weeks, I still place my faith in “stats” and “science”. We were told that in our case the occurrence of foetal abnormality was bad luck, and that we should simply just try again. If you have issues with the implantation aspect, get your doctors to do everything on that front 1) aqua scan before a new cycle 2) monitoring of your progesterone levels, 3) proper support with Lubion and pessaries etc. This group has many people who has had the same issue so the group can also help you in creating a checklist of what to explore in your treatment plan. 🤗
I would agree with all the replies. I also feel very unsure of PGS. I have read some good things and some bad. We have not really had enough embryos to consider it, but have had 3 transfers fail now (with good graded embryos). So it is hard to know what to do next.
Just really wanted to say I am so sorry for your loss. Look after yourself and I am sending you lots of hugs. Whenever you are ready I am sure you will come up with a plan for your next steps, never lose hope xx
Carelia your post is so helpful 🙂 I had a tfmr 3 weeks ago, also at 17 weeks. So bloody heartbreaking- it was trisomy 13. I’m 41 - it was after a FET from an ivf round at 35. I’ve been wondering about PGS but it’s so expensive. I think I might also give it a miss. I’m just so scared of another chromosome issue :/
Thanks Sunset212. It was awful, but it’s a little easier now. Tfmr - termination for medical reasons. Bubs has trisomy 13, would most likely have miscarried or lost him at birth or soon after, or he would have been quite severely disabled and not lived long. We chose induction over a surgical termination, I gave birth essentially. He was tiny. All our scans were clear but an amniocentesis confirmed the condition. It was helpful to see he had an extra finger on each hand and low set ears and a funny little nose. Helped to have confirmation. I miss him though every day. I can’t believe it happened x
Hi TeddyBear5,Given it was the trisomy 13 it is very likely that you simply had bad luck, just as we did. I am just going through my next IVF round and if I was as lucky as to get pregnant, I will do a "Harmony" test at 10 weeks. It is very accurate (95%+) and can be done good 2 weeks before the usual NHS test at 12 weeks. It does not help in that the first 10 weeks are a "waiting period" but knowing that the test is available privately - and not terribly expensive - gives me comfort to go for it again. I hope it gives you that comfort too.
I’m sorry for your loss lovely. I had an NIPT test - not harmony but percept - had it at 10+3 and found out at 11 weeks I was high risk for trisomy 13. Had to wait to 16 weeks for the Amnio. I was 17+3 when we terminated the pregnancy. I would do the NIPT again too - it was an awful wait though, not something I’d like to go through again. Horrific 🙂
I did PGS because I had 5 1st trimester miscarriages and just didn’t want to put myself through another so thought it could reduce our odds of loss! We tested 9 embryos and 5 were normal. The 4 abnormal were all additional or deleted chromosomes. My first FET failed to implant but after further testing I was put on immune protocol and am now 18 weeks with FET 2!
For me there was great comfort in knowing I had a chromosomally normal embryo which reduced the miscarriage risk 😊
Hello @Hanj10, super happy, and encouraged, to hear about your pregnancy, thank you for sharing! 🤗. If you can, please could you tell us what the "immune protocol" consisted, and what did the doctors say as to how it helps? What type of drugs did it involve, and from which time onwards to which time completion? This may help people with similar situation in discussion with clinics/ consultants 💫
I had blood tests to check for mutation in PAI1 clotting gene which I did have and is treated with Inhixa blood thinning injections daily starting from transfer. I also had blood test for TH1:TH2 ratio and mine was very TH1 high which means my immune system was overreacting. This was treated with iv intralipids before and after transfer as well as prednisolone steroids started at bfp (would have started earlier but steroids were banned at that point in covid!).
Thank you Hanj10. Didn’t realise this was an immune protocol- silly me.. I am on the same. Tomorrow is my test day from a fresh cycle. It was the only embryo from the batch that wasn’t good enough to test so rather than freeze we opted to just transfer. I am not feeling hopeful but just wanted to ensure I could do everything before I started on my next transfers.. thank you for responding and congrats again!
Hi i am so sorry for your recent loss! Its the worst feeling and having been through one can relate. I had 8 blastocysts result from my only round of IVF. As i was 35 at the time i was tempted to pay for testing given I was 35, as its an additional cost at my clinic up north and having a fair few embryos i didn't want to go through potential miscarriages after experiencing an early one on my IUI cycle the year before. However my clinic use timelapse surveillance as standard in all cycles which i was very fortunate with and so they did correctly identify for both my pregnancies ( i have an almost 2 year old and i am 21 weeks with my second FET transfer) Does your clinic offer timelapse surveillance of their growth in the lab? - its an extra useful layer on top of using the grading as a guide as it helps identify the embryo with the healthiest cell division. That's what they told me at the lab anyway. If you have more than 3 embryos could be worth it if you are closer to 40, if just a couple i don't believe it is. There is some evidence that PGS is subjective in as much only cells from the placenta are actually tested and some drs feel that as that doesn't represent the actual embryo , how much effect does it have on its development. It could also have mosaic ( mixed normal and abnormal cells) and therefore if the balance is in favour for the embryo to be mostly normal then i've read it can sometimes override and push out the abnormal and continue a path of normal embryo development. Some clinics use a a percentage as a guide so e.g mine says 40 per cent or less abnormal cells and the embryo is PGS normal, more than 40% of cells abnormal would be classed as PGS abnormal. Mosaic represent about 15% of all embryos so roughly just over 1 in 10. Also age is a big factor my clinic say about 60% of embryos are normal if a woman is in her early 30's. I imagine around age 35 that lowers to about 50% are normal and approaching 40 that drops to about 20% are normal so 1 in 5 embryos. Hopefully this helps you make a decision. I think the main basis should be on the protocol of your cycle though, i.e any hormone supplements required, getting your lining in the best condition it can be as well as your health and body, light exercise, vitamins etc. Also fish oil is very good and water for blood flow! As you can have the best embryo to replace but if all the other factors are below par, it will greatly affect getting a positive test. Wishing you lots of luck xx
I agree with Carelia - I did some research and I think it's a massive expense when actually they are only testing the outer cells and so the embryo itself may be fine, plus the cells can correct themselves. You may rule out embryos that could actually have been viable, given the chance.
Not using PGS tested embryos added so much wasted time and heartache to my journey. I would never allow a friend or family member to go through IVF w/o PGS. In the US, the best clinics won’t even do IVF fir you without using PGS tested embryos.
Hi, I am so sorry to hear you had to end your pregnancy. It must have been horrific. When it comes to PGS testing, I second what Purpledoggy has already said: according to HEFA regulations the embryos that result abnormal during PGS testing cannot be used for any embryo transfer; PGS is also an expensive and risky process, as it can result in losing the embryo tested, so a lot of clinics do not offer it automatically to all patients, but on a case by case basis - for example, our clinic didn't; however, when we asked about it, they did present it to us as an option.
We decided to 'collect' seven embryos during several rounds of IVF and then we PGSed them all. Only one turned out to be viable for a transfer. The analysis of the embryo was done by an American company called Cooper Genomics, which is a world leader in this field (n.b. there aren't many companies doing this around the world) and is used by most clinics in the UK- their labs are based in Nottingham and they also offer a genetic consultation service to discuss the results of your embryos analysis. I found the genetic consultation very useful. Their results are 97% 'guaranteed'- as far as I know not many things in medicine have this kind of guarantee level... However, during the testing, they can only take out a small sample of cells that would form the 'placenta to be' layer of the embryo and not actual cells of the core of the embryo. So there is always a margin of error that needs to be considered...
We implanted our little PGSed 'viable' embryo in November and now I am nearly 35 weeks pregnant - I am 45 years old and prior to this we had two natural pregnancies which had resulted in missed miscarriages and five failed embryo transfers. I cannot quite believe it yet, and I probably won't until I hold the baby in my arms. I hope this has helped you and that in a few months' time you will be able to tell a similar story. I wish you all the luck in the world with your journey xxxx
My doctor strongly suggested PGS testing to me as I'm 42 years old. I only had two eggs made it to testing. They were graded 5BB and 5BC. Through PGS testing we found that the 5BB was complex abnormal and the 5BC was a low level Trisomy X - 5BC is now 26 week in my belly and doing very well - she's fixed herself and doesn't have the extra Xs. I think if they hadn't PGS tested, they would have put the 5BB in my first and would have discounted 5BC until 5BB didn't work. So I think it's important...for some people. Good luck!
Sorry this is happening. We had 4 fresh ICSI cycles with lots of similarities and the only thing that changed/worked was changing to different donor sperm.We now have a one month old healthy baby boy.
Good luck. Xx
I had 6 embryos and did PGS on them. Came out 5 was abnormal and 1 normal. I transferred already and currently 8 weeks and 2 days pregnant. Just had an ultrasound and baby is perfect. Hoping for the best because I do not have leftovers. To tell you the true I am very happy, because I had 4 consecutive miscarriages before 8 weeks. So am very pleased and hopeful. In order to do PGS you just have to know the risks of losing embryos. My doctor did not recommend, but I did what I want for myself. I did not want to get pregnant 6 times waiting for the best embryo. I tried everything before. They always told me embryos looks perfect and beautiful and I ended up with a miscarriage frustration. So I am just telling my story and I think you should learn about the process and take your decision.
I often don’t post here just one other conversation on same topic. 43 and (sometimes scared to say as anything can happen ) 17.5 weeks. I highly recommend the PGT testing .. started ivf at 41 did 10 egg retrieval’s over two years with only break almost being 3 months shut down for COVID here in NY. I never got navy eggs but most embryos did make it to day 5 “looking fine”. We tested every one and other than a mosaic with one small chromosome problem (which yes might self correct bit more likely than not won’t which we froze), all other embryos were not good after being tested even if looked good say 5, until the last round. One good embryo, tested. This is the only one ever did a transfer with after a round of uterine biopsy to pin point perfect day for me (as we only had one good one), and so far 17.5 weeks it worked fingers crossed and praying .. highly recommend testing .. although expensive worth it.
Thank you so so much to everyone who has replied. Your answers have all been super helpful and although it makes me so sad that we are/have been through such difficult times, it gives me such comfort to know your support is there.
Unfortunately, my husband and I have only ever got a maximum of 3 embryos to day 5 with nothing left to freeze either. We have done 5 fresh ivf cycles which led to only 3 transfers. The TFMR was absolutely devastating. Our embryos are just not strong enough and that is even with donor sperm hence us now going down the donor egg route too.
We are nearly at the top of our Uk waiting list for donor eggs and after all your fab advice I think we will decide when we know how many good embryos we have. If it doesn’t work we will go abroad and use donor embryos.
Such a tough journey but I feel stronger knowing I can come here for your help and support. Thank you xx
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