If to do clotting/autoimmune tests after 3 failed implantations

[Purple276]

Hi all,

So third fresh round also gave us just one embryo to transfer and sadly was a BFN. We have one frosty from round 2 and now in the difficult what to do next stage.

We said would only do 3 rounds but my OH is not ready to quit and think we'll do another fresh - expecting 1 5day blast to transfer and then do the final round using our frosty then if no success I'm done. If we plan on 2 more transfers is it worth doing implantation tests?

Our clinic calls them level 1 - clotting and autoimmune antibodies. Also the option for ERA and EMMA and ALICE. Plus NK cells but I'm not convinced by the money vs evidence and likelihood to make a difference. But surely I want to eliminate all risk to be successful?

We are not doing PGTA due to only likely to get 1 embryo but know it might just be they have all been abnormal and implantation is not an issue.

Anyone been / in a similar place and what helped you decide and did it work?!

Going round in circles so any help is appreciated xx

[Belangalo]

Hi Purple, as for the ERA my FS doesn't believe in them at all. He's been very matter of fact about a lot of tests costing money and having very limited evidence of actually making a difference based on the numbers of people in the studies and the controls etc. However, I did request and pay for a HEAP of testing. He didn't feel it was necessary - and given that all my test results so far have come back as text book normal - he looks to have been right.

However, hubby and I are more of the opinion that the testing was done for our peace of mind. We'll know that we tried everything and spared no expense. Hubby thinks its much better for us to KNOW that nothing is wrong and that we are doing everything in our power - particularly if it turns out that nothing ends up working for us.

I think it is a personal decision if you want to get tested before another round. I wanted to know if there was a problem and then it could be fixed. Hubby approached it differently because he genuinely didn't think that they would find a problem. Partly because of what our FS said but also because that has been his gut feeling too. So our lack of success with IVF has been put down to bad luck and to keep trying because it is a numbers game.

I say get the testing done if you think it will help you to feel more confident going into the next round. I feel more confused that there is nothing wrong but apparently IVF isn't working for us. But I suspect I just really want that healthy perfect baby in my arms and no test results will make me feel better until that happens! LOL

[Purple276 in reply to Belangalo]

Hi BelangaloThank you so much for your reply that's really helpful.

My OH said in 10 years time how would we reply to nephews asking why we didnt have children and didn't want to say 'well we didn't want to spend the money on finding out why it wasn't working' so totally agree it's partly about being able to do anything we can.

Think we all feel it would be worth it to get a baby in our arms and so sorry that the tests didn't really give you any answers. What is your next step? I'm so over the fresh round rollercoaster but if it's what we've got to do then it's what we do! Xx

[Krystal_43]

I’m in the same boat. 3 failed fresh cycles (1 blast per round) and unsure whether to get more tests before the next cycle, as I’d like to be able to rule things out (will I always be thinking what if?) but the costs are crazy & my Doctor just thinks we are playing a numbers game 🤷‍♀️

[Purple276 in reply to Krystal_43]

It's ridiculous isn't it trying to work out the best thing to do. I like using evidence to make decisions but think this one just has to be what your gut says and how much more you can handle. And thinking how in the future can we get closure on the decisions we make if it doesn't work so we have no regrets. I think we might go ahead with a couple of the tests I feel could show something up but ignore the others.

So sorry you also only get one blast per round. Really hope it's just the numbers and the next one is exactly what you've been waiting for xx

[HemBella]

Ive never had a positive pregnancy test ever and after my last failed round with a PGS tested perfect hatching blastocyst I've decided to do Level 1 and Level 2 implantation tests. They are a lot of money but I have 2 PGS tested frosties left and I'd rather invest the money in testing before transferring again. I'm still waiting on the results but I just wanted to know that I am doing everything I can. I think if I didn't do the tests I would always wonder

[Krystal_43 in reply to HemBella]

Have you seen this study that just came out? Basically the authors say that 95% of women achieve pregnancy after transfer of 3 PGT embryos: sciencedirect.com/science/a...

[HemBella in reply to Krystal_43]

thats a really reassuring report, thank you for sharing

[Purple276 in reply to HemBella]

Oh lovely so sorry the last PGS didnt implant and think that's a sensible decision to get the tests. When you know the embryos are good that takes away that uncertainty and with 2 others in freezer you stand a good chance. Hope the results come back quickly- how long did they say it would take? Xx

[HemBella in reply to Purple276]

Thank you hun. I get the results 27th April. I'm also doing ERA/EMMA/ALICE tests so currently doing a FER which is so difficult taking all the drugs you would for a normal FET but with no plans to transfer an embryo at the end. Still hopefully it will all be worth it. I'm convinced there's fine tuning that needs to be done somewhere along the line x

[HemBella in reply to HemBella]

So 4 weeks for the test results - except the ERA/ALICE/EMMA which you need to go through a FER cycle for

[Purple276 in reply to HemBella]

Everything crossed for the results. I read that about the ERA and Emma/Alice. Hope will help tell you when your optimum time to implant that next and hopefully last frozen embryo is xx

[PaulaDag in reply to HemBella]

Hi, what is Level 1 and Level 2 implantation tests? I've never heard of this before in the UK. Similar situation with 3 failed transfers after 2 ICSI cycles and wondering what to test but clinic just says likely age related egg quality (i'm now 42) so running out of time. I never did PGS so now regretting that as I'd know if its egg issue rather than the pain of not knowing if its something else, NK cells, ERA. Its driving me nuts and my clinic just say shall i set up another cycle 🙁

x

[Annjali in reply to PaulaDag]

I would take the time to look at the tests and and all options rather than straight onto another cycle, which I amSure you are doing. All the best

[Purple276 in reply to PaulaDag]

My clinic calls them that but essentially Level 1 are about clotting and immune and level 2 are the NK cells. I'm 39 so feel the same about time and really thought by 3 rounds it would have worked. How many embryos do you have left in the freezer? You could defrost and pgs test and I think if we had 3/4 then we might be tempted but its all such a risk.

The replies to this forum have been really helpful so hope give you some guidance on next steps too xx

[Annjali in reply to Purple276]

I am 39 also. I don’t have any embies stored. It’s a long and hard journey.So trying to plan well for my next cycle. All the best xx

[PaulaDag in reply to Purple276]

Hi, thanks. I assume I would have had the clotting tests done at the nhs recurrent miscarriage clinic back in 2019 but unsure. I'll check. If I have is there any value in having them rechecked? They definitely didn't do NK cells.

We don't have any frosties left now, used the last one in January, it was the only frozen one as we did one fresh from first cycle and a double fresh on the second cycle. I never got one positive whereas naturally 4 but they all miscarried. So whatever we do its a new egg collection. We are debating about donor. I am also thinking of trying DHEA to improve egg quality, if the consultant is correct thats its egg quality.

I think for me not PGS testing has left me in limbo wondering if it is my eggs, and wanting to go for all these other tests to discount it being my egg or otherwise. Its torture isn't it. xx

[Zebedee1971 in reply to PaulaDag]

I think you're right not to pgs test with such small numbers (I only ever got 2 embryos each round, at 38 years old), mainly because if you get an abnormal result it can really play havoc with your mental health. One or two embryos that pgs test as abnormal doesn't mean that the next 1 or 2 will be abnormal too. Same if you get a normal embryo. Every cycle is different, every embryo different. In July, I had 2 pgs abnormal embryos, it convinced me all my eggs were duds. It's not a nice feeling at all. I was close to giving up, and am so glad I didn't .

Consultants are correct when they say its a numbers game... So the better option is to have some other tests done to see if there is anything affecting the implantation failure of the good embryos (because there will be some). Its not easy (or cheap) so I wish you luck with making a decision on your next steps x

[PaulaDag in reply to Zebedee1971]

Low numbers is exactly why I said no to PGS after much procrastination. In total we only had 4 embryos across both cycles! I guess its onto testing other things then. There is only NK cells and ERA/Alice/Emma tests left really. Are there any others I should consider checking aside from NK cells and ERA? All other blood tests and NHS recurrent miscarriage tests came back ok aside from sometimes elevated TSH and prolactin but I keep getting normal range results in between the elevated results. I am on Bromocriptine and Levothyroxine for these just to rule them out being an issue whilst trying to conceive.

xx

[Arthurbel]

Hi,I totally understand why you may feel cautious about additional testing, however I feel that some clinics steer you away because they lack the understanding of the treatments and immunology.

Of course, I’m only speaking from personal experience but I have implantation issues, I’ve just had some additional testing done and i only wish I had done it sooner. My NK cells are working overtime. 0.8 activity is considered normal, 1.8 is very high and my result was 2.47 which correlates with my lack of implantation (I’ve transferred 12 blastocysts in total, had one baby and 1 miscarriage) My body is rejecting my embryos.

Testing is not for everyone but I knew something wasn’t right and I was right to trust my gut instinct. Personally, I’ve never fancied trying the PGA testing. I read a brilliant, insightful book by Dr Beer ‘is your body baby friendly’ and I feel it has changed my whole perspective.

Good luck in whatever you decide xx

[Purple276 in reply to Arthurbel]

Thanks for the advice and agree the consultant might not be the expert on the tests. Plus mine is careful not to push us into a direction to spend lots more money as she understands how vulnerable we might be to suggestions. Very considerate of her but no help when we genuinely don't know what to do!Thanks for the book advise too and will look into that.

Good luck with your next round now you have more information. Really hope this is the one you've been waiting for xx

[Annjali]

Hi I had 3 failed and 1 abandoned cycles. Before I start my next cycle have had NK tests and the other test you mention- I would recommend as my result have shown I do have blood clot issues. It is expensive but I think it’s worth it as it’s another avenue to look at.

I am also being advised to try short protocol this time.

I hope this information helps you.

[Purple276 in reply to Annjali]

Thank you Annjali, that's helpful. I'm nervous about trying a different protocol in case we don't get any eggs which is a real possibility with my follicle count but will definitely consider it.Sending you all the best and positivity for your nect round. Take care xx

[PaulaDag in reply to Annjali]

Can I ask where you went for the NK cells test? Thanks xx

[Annjali]

Hi of course.

I am with Care Tamworth (Formerly IVI), they do the NK bloods and the recurring miscarriage blood tests / implantation. One of the tests are sent off to America.

I am glad I did the tests, wish I had done them sooner.

[Purple276 in reply to Annjali]

Ah, Chicago I think was mentioned by my clinic for the level 2 tests but didn't realise they actually get sent there! I'm with Care too but in Northampton 🙂

[HemBella in reply to Annjali]

I'm the same clinic too! My acupuncturist was the first person who mentioned the Chicago test, but yes they literally get sent there for analysis, which is why they are expensive. But its still cheaper than a whole new round

[Purple276 in reply to HemBella]

Ah, well hi clinic buddy!

[Annjali]

That’s great atleast you know Care do the test you just have to ask for them they don’t tend to recommend these tests as much I think

[Zebedee1971]

I got tested for nk cells under the care of doctor hassan shehata in epsom. I am now 26 weeks pregnant. My issue was always failed implantation/ miscarriages under 7 weeks. I'm so glad I didn't just keep plodding along the ivf path, it would have just ended in more disappointments. I do get a little frustrated when people say they don't believe in nk cell treatment... People who haven't had the treatment and aren't pregnant. I have had it, and it does work, my baby is proof. It's not cheap but it was worth every penny for us xx

[Purple276 in reply to Zebedee1971]

Thanks for your reply and congratulations. Super happy for you xx