To PGS test or not?: Immune issues... - Fertility Network UK

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To PGS test or not?

letro112 profile image
13 Replies

Immune issues attacking pregnancies so have decided to go the surrogacy route. Just wondering what people's thoughts are on pgs testing? I am not really keen on the idea however my husband would like to do it. My opinion is that embyros can be damaged during the process plus alot can be deemed mosaic or abnormal and therefore not transferred and in many cases these have resulted in healthy babies. Any thoughts?

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letro112 profile image
letro112
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13 Replies
Cinderella5 profile image
Cinderella5

I think there are a few things to consider here...have you and/or your husband been karyotyped for genetic issues and not sure on your age. I do however feel the same as you. I think there have been more studies in the US that have shown not all embryos have to be perfect to have a baby but genetic issues are obviously different. I think you just need to weigh up your options. Some say if you have lots of embryos then it saves the heartache of putting back embryos that potentially wouldnt make it but if you only have a few then to put them back and see what happens. Personally we didnt test for the same reasons as you!xx

letro112 profile image
letro112 in reply to Cinderella5

So hubby and me have been karyotyped and we are both normal no issues. I'm 36 and hubby 38 .. trying for years so I def don't think egg quality could have been my issue at 32 . My cytokins and natural killer cells are extremely high with the result my own clinic won't even consider transferring my last 2 embyros. So given there insistence on the issue we decided to try the surrogacy route and pgs is really bringing up more questions. I personally feel I will be lucky to get 2 to 4 embyros from this round so would rather transfer 2 at a time and take our chances

Riyam1 profile image
Riyam1

I think there’s few clinics in London who deal with the immune, one particular I know is called ARGC , they will test your immune ratios and give you an immune suppressant drips it depends, the levels of your blood test , I know quite few friends who had that and was successful. Check it .

letro112 profile image
letro112 in reply to Riyam1

Thanks Riyam1 I have been dealing with ARGC and some clinics at home too. Unfortunately all the meds I have done to date has not helped my immunes -humira, plaquenil, intralipids, steroids and medicinal mushrooms and low dose naltrexone. I have IVIG lined up but both the London clinic and my Irish clinic feel I will need alot of IVIG and potentially until 20 weeks. So with the cost of the ivig and the cost of testing the immunes it will potentially work out just as expensive as surrogacy and with potentially less chance for success.

We have had so many losses and trying so long now that we feel our only option is to go this route while in the meantime I continue to work on my immunes. I still have 2 frozen blasts at home so have the option of transferring these if I ever get my immunes within any sort of normal range.

pink_lemon profile image
pink_lemon

You are relatively young, so egg quality should still be good and most eggs ok. I did pgs, in fact only did ivf because we wanted to pgs test. The reason being is we had two miscarriages, which took a year of our time altogether between being pregnant, having missed miscarriage, then the actual miscarriage and then waiting for months for my body to rest, so I can start again. Not getting any younger there! I know the second loss was due to genetic fault and the first one most likely too. I did quite a bit of reading before taking that path and learned that while most abnormal embryos won’t implant, some will. They will most likely end in early miscarriage, but that is not fun for the woman that is pregnant with that embryo. Most mosaic embryos correct themselves, so had I got a mosaic result, would happily transfer too. Pgs normal embryos have 50% chance of live birth - probaly more for younger age group. Heaps compared to non-tested transfers. Where I am, it is much cheaper to do a pgs test than a FET, so we would potentially be throwing money out on transferring non-tested embryos, when a tested one gives us much better chance of success. I did not come across significant risks of the test, but sure there is some. Hope this helps. The decision of course comes down to your individual circumstances. For is it just did not make sense not to test.

letro112 profile image
letro112 in reply to pink_lemon

Thanks so much for your response.. this is what I hoping that some of my embyros maybe good. Either which way the costs aren't our main driver . But I would be worried about my clinic not being willing to transfer mosaics as I have read these can often times result in healthy pregnancies.

It seems like all my losses seem to be attributed to my immunes as when I have been pregnant my immune response and cytokins go sky high and effectively attack the pregnancies. With my pregnancies it seems they start off as pregnancy if unknown locations and then doctors think there ectopic (have had surgery to rule thus out) but it seems that the baby gets attacked and the cells are left causing the hcg to increase and show in the uterus.

SCHNOW profile image
SCHNOW

I just want to add high NK cells can be treated and you still can carry your own baby. Especially you are still young and you might not need surrogacy. However, if you go for the treatment of NK then it is better to transfer the PGS tested embryos because NK treatments need to take quite a lot of medications and you would prefer the embryo you are trying to keep stick into your uterus is a genetic normal embryo. I started ivf from 34 and had 4 pregnancy losses, only had been found out have high NK last year. After the treatment and transfer of PGS tested embryo, I am 19 weeks pregnant now (38 yrs old) and be discharged from immunology clinic at 16 weeks. Once pass 16 weeks, your NK won’t attack your baby any more. Hope these information is helpful to you. I was seeing a very good immunology specialist in London. If you need his name, I can private message you.

letro112 profile image
letro112 in reply to SCHNOW

Hi Schnow .. would def be interested in getting your doctors name. Congratulations on your pregnancy. As discussed above I have tried alot of different medications and steroids and every concoction.

I have yet to try the ivig but have been told I will need the strongest steroids and lots of IVIG. I have since gotten the full immune panel done again with fertylisis to see if maybe LIT will help also. But I find it all so challenging especially with covid and the inability to get vaccinated so this is another reason why we are considering this surrogacy path also. Also the cost of some of the London immune clinics ends up being so expensive that with the surrogacy path you know effectively what it is going to cost. I feel like I could spend all our savings and still be none further on in a year's time. And thus scares me too that we would effectively have no money left to try any other options

Hanj10 profile image
Hanj10

I chose to do PGS testing after 5 miscarriages (2 of which were blighted ovums) and for me it was about reducing the risks of another miscarriage. Of the 9 embryos we had tested, 5 came back normal and the other 4 were either chromosome deletions or additions. My first FET failed to implant but we then did immune testing which came back high so I did intralipids and steroids for 2nd FET which worked and I'm now 33 weeks. I was at a clinic in Nottingham.

letro112 profile image
letro112 in reply to Hanj10

Hi Hanj10 .. sorry to hear of your losses. I would be delighted to get 9 embryos , however our numbers tend to be alot less. The most we might expect is 4 .. so we would be thinking its probably easier to transfer 2 at a time and hope for the best that a normal might be in there somewhere. Delighted to hear that the steroids and intralipids got you pregnant .. very best of luck

Our consultant said unless you have a large number of embryos it’s probably not worth it - the risk of damage is fairly high and like you commented there are some embryos that may come back as abnormal but could have produced a successful pregnancy

With four precious embryos I would definitely be just cracking on with transfer personally. Good luck xx

Ranchu90 profile image
Ranchu90

Your question is definitely a very complicated one with no straightforward answer. Considering that you will go on surrogacy route I would definitely go for PGS testing, it will save your money and time. Whatever happens you will know that the embryo transferred is the right one otherwise more questions will arise. Even if you will end up having 1-2 normal embryos that is completely fine (if your surrogate is under 35 the chances are very high 70% with PGS), what will you do in case you will have 3-4 normal, will you transfer them all to your surogate or purely discard them?! I had 4 IVF cycles in total, first 3 produced only 1 embryo and I was 27-28 years old with no fertility issues. We decided to go for one more round with PGS testing despite knowing that we only had 1 embryo each cycle and we hit the jackpot. We had 4 embryos, 3 normal and 1 abnormal. We wanted to have PGS testing done after 3 chemical pregnancies. Now we are pregnant with twins 😍.

Just out of curiosity did you try to transfer 2 embryos at a time so your body could attack only one and the other to survive?

I wish you good luck whatever your decide, there are no right or wrong decisions in this journey 🤞😂

letro112 profile image
letro112 in reply to Ranchu90

Hi yes I have done multiple double transfers hoping this would be the case, but neither were able to survive.

I still have 2 frosties in Ireland so have the potential to do another transfer.. but st the moment I need to get my cytokins under 50% at least. On previous transfers I had my cytokins at 38% but thus was also too high.

Yes my case is def not straight forward by any means. But I honestly feel that from mall my natural pregnancies and the transfers every single embryo couldn't have been abnormal.

If we are lucky to get 4 blasts we would like to transfer 2 . If this resulted in a twin pregnancy happy days . If not we would at least have another 2 embryos to give ourselves the hope that we might have our 2 children we long for. If twins did occur , then in a few years time i would look to transfer anything remaining to myself in the hope my body might accept something

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