PGS results are not reliable, word of caution (own experience+literature) — The Bump
Infertility

PGS results are not reliable, word of caution (own experience+literature)

liljoy-2liljoy-2
250 Love Its 100 Comments First Anniversary Name Dropper
member
edited April 2017 in Infertility
Hi ladies,
I feel compelled to share my experience with you because I think it has so many ethical and emotional implications. Of course, it is ONLY my experience and it may not extrapolate, but I still think it is very relevant. I had a bunch of blastocysts and did PGS because I wanted to avoid m/c or Down's (over 35). Only a couple returned normal, but the results had a few things that puzzled me, and since the alternative was to discard the embryos, I decided to retest instead, with a different lab (after also reading articles about abnormal embryos being implanted in Europe and developing normally or retested with different results). Guess what?? More returned normal, PLUS the rest of abnormal ones had totally different abnormality profiles.

So I'm sitting here thinking, how many normal embryos are killed each day after PGS results? How many women who can only produce one embryo that turns out abnormal end up unsuccessful just because of throwing away the embryo? This technology is only experimental, the labs either make awful mistakes OR the embryos are mosaic and good cells may exist that can then lead to self-correction in the embryos. Playing God is awful and heartbreaking. I still don't know what to do with my "abnormal" embryos in this case because I definitely don't trust the results anymore..
Hopeful_momtinjp78

Re: PGS results are not reliable, word of caution (own experience+literature)

  • Which labs did you use? What results were bad that turned good? 
    artemis618AlohaKumuBusinessWifetinjp78
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  • QsMaddQsMadd
    100 Love Its 100 Comments First Anniversary Name Dropper
    member
    edited April 2017
    This is very interesting to me. Now that we have had one round of IVF and it was somewhat of a success (**TW no heartbeat has been detected and I'm 8.5 weeks tomorrow, d&c scheduled for friday**end TW), my doctor has been heavily suggesting pgs testing for our next cycle. I'm only 33 and my AMH is normal, so my husband and I have been trying to decide if we really need it. We will be doing chromosomes *TW on the d&c **end TW, so I guess that will also play a factor in our decision.

    But this is something I will definitely look into more. It makes me wonder how precise these tests are....especially for how expensive they are. Thank you for sharing this.
    Me: 34

    TTC: 40 months
    Me: endometrial polyps and most recently diagnosed with polypoid endometrium. Mild endometriosis. AMH 4.5. FSH 9.2. TSH 8.5 (recently started synthroid) Everything else normal.
    DH: now an exDH. lol. JUST MEEEEE!
    IVF #1: ER 3/11/17 (5 fertilized) ET 3/16/17 BFP (B#1-113, B#2-534, B#3-3190) MC @ 8 weeks
    TTC with just donor soon!
    BusinessWifetinjp78
  • @Ash_SE The bad results that turned good were trisomies (with 96% certitude). Other differences were monosomies instead of trisomies, etc. Very different. Both labs are top notch and in-network with insurance, one on West Coast and one on the East Coast..
    BusinessWifetinjp78
  • @liljoy I asked my RE about this as we had two cycles of ivf with my own eggs and had no normal embryos with PGS. The mosaics and self correction are from embryos tested in day 3 when there are very few cells...in theory (per my RE) once you get to a 5 day blastocyst (when our embryos were tested) the cells are what they are and there won't be any autocorrection. That being said, most tests are not 100% accurate so there is definitely a chance that sampling could produce false positive or false negative results with PGS at 5 days too

    What did your RE say about the discrepancy between the two labs? 
    ******TW*****
    Me 39 DH44
    Married 8/2/14
    TTC 9/14
    Dx: PCOS, blocked L fallopian tube, suspect poor egg quality
    MFI (low #, poor morphology)
    IVF #1 9/15 Failed
    IVF #2 12/15 Failed
    1st DE FET  5/16-BFN :(
    2nd DE FET 7/18-BFP :)
    8/17 Baby HR 140/min EDD 4/6/17
    BusinessWifetinjp78
  • liljoy-2liljoy-2
    250 Love Its 100 Comments First Anniversary Name Dropper
    member
    edited April 2017
    @2legbaby My RE is puzzled and said they were either mosaic or the lab methods differed.

    Some REs still believe day 5 can be mosaic (interesting to also read his replies in the comments):
    http://drgeoffreysherivf.com/pgs-in-ivf-are-some-chromosomally-abnormal-embryos-capable-of-resulting-in-normal-babies-and-being-wrongly-discarded/  

    This paper also insists day 5 biopsies are not relevant because cells are from what will develop into the placenta (thus the exterior), and abnormal cells at the exterior don't count: https://www.centerforhumanreprod.com/fertility/possibility-selectively-transferring-embryos-preimplantation-genetic-diagnosis-pgdpgs-determined-chromosomally-abnormal/ 

    This also supports the same argument ("Dr. Vidali (and his wife), personally, experienced an IVF cycle in which all embryos were declared aneuploid, only to learn upon repeat analysis that 40% were found to be chromosomally normal (euploid)." http://www.24-7pressrelease.com/press-release/transferring-allegedly-chromosomally-abnormal-embryos-comments-on-todays-article-in-the-new-york-times-by-kira-peikoff-422079.php 

    Here are cases about successful abnormal embryos (more cases are from Europe and Israel in the above link) : https://www.preventmiscarriage.com/documents/Live-births-of-3-normal-neonates.pdf

    Either way, it is clear mine were either mosaic or the labs made mistakes. 
    BusinessWifetinjp78
  • I think it is good to factor this in before deciding whether to do PGS for others doing ivf  , but sorry that you now have to deal with the confusing results @liljoy ... nothing can just be straight forward in this process! 
    ******TW*****
    Me 39 DH44
    Married 8/2/14
    TTC 9/14
    Dx: PCOS, blocked L fallopian tube, suspect poor egg quality
    MFI (low #, poor morphology)
    IVF #1 9/15 Failed
    IVF #2 12/15 Failed
    1st DE FET  5/16-BFN :(
    2nd DE FET 7/18-BFP :)
    8/17 Baby HR 140/min EDD 4/6/17
    BusinessWifetinjp78
  • This is very interesting. Thank you
    Siggy Warning--------


    CP #1- due April 2017 lost 5.5 weeks
    cp #2- due May 2017 lost at 4.5 weeks
    iUI #1- BFN
    IUI #2-BFN
    IVF#1- transfer 2- BFP! Due October 2017 c/p#3 lost at 3.5 weeks
    BusinessWifetinjp78
  • I was wondering about the same thing. Very interesting to hear about your differing results, and fx for better things to come!  It also may empower me to do that too (i.e. retesting with a different lab), depending on our hypothetical results. :)  so thank you!
    Me: 35 | DH: 42 ~ TTC May 2015 thru Dec 2017
    5/16 - Began Creighton Method CM Tracking / Napro Fertility Medicine | Progesterone + various abx cycles - all BFNs
    8/16 - SHG: ute good, at least one tube open | 10/16 - MFI Azoo dx confirmed. No known genetic cause. Vas deferens absent.
    3/17 - DH started Clomid to prepare for MESA/TESE | 4/17 - Initial RE Consult for me. | 7/17 - Successful retrieval for DH!
    9/17 - Two BTB IVFs  | 10/17 - Polypectomy  |  11/17 - 1st FET ended in CP | 12/17 - 2nd FET ... BFP!!! <3 EDD: 09/09/18

    Our little miracle is finally here!


    tinjp78
  • liljoy this has got me thinking alot thanks for sharing!!!  I actually called my DR to make sure they didn't discard my abnormal embryos just yet.  I'm not saying they were all wrong but apart of me still thinks one was normal.  I've always been torn on PGS and this makes it more so.  I wonder about the blasts that make it to blast but not the stage that it can be frozen.  Since I'm doing the testing am I losing normal embabies.

    I'm wondering if part of the problem is that my embryos do better in the womb then outside.  For example, if I wanted to do a transfer with an embryo that couldn't make it to the necessary stage needed to be frozen, could that embryo make for a viable pregnancy.  Some things I've read say that the blastocyst has to get to a later stage to be frozen because an early stage blastocyst won't freeze.  Am I losing normal embryos that might be able to thrive if placed in my uterus and just aren't strong enough to freeze.  I had a normal embryo before so its frustrating to think I cant get one again!

    QsMadd so very sorry to hear of your loss!!  Hoping you can get some answers.  Wishing your heart, body and soul heal quickly.  
    History of TTC in spoiler box
    TTC since 2014
    Unexplained Infertility - but I am 40...Low AMH .30
    7 - IUI (50mg-150mg Clomid) Feb - August 2016 all BFN 
    IVF#1 August 2016 (Antagonist protocol 4/5 eggs) Cancelled cycle :( RE thought I would get at least 10.
    IVF#2 Sept 2016 (microdose luporn pro - disappearing follies, ONLY ONE, convert to IUI) BFN
    IVF#3 November 2016 (4 ER, 3 F,  3DT)-BFP  with TWINS // MC both at almost 10wks  :'( 
    IVF#4 March 2017 //EPP  (10 ER (1 wonky so 9 ER) 7F, 3B (5AB, (2)5BB) PGS tested- ALL abnormal  :'( 
    IVF#5 April 2017 // EPP (7 ER, 7F yes! 6B) 2/5 day 4/6 day - 2 PGS normal! yes!! :)
    IVF#6 May 2017 // Antagonist didn't have time for Estrogen Priming...(4 ER, 3 F, 3B) (5AB, (2) 5BB) 2 PGS normal, yes!! :)
    IVF#7 June 2017 // EPP praying this is it and then on to an FET!

    BusinessWifetinjp78
  • liljoy-2liljoy-2
    250 Love Its 100 Comments First Anniversary Name Dropper
    member
    edited April 2017
    @Hopeful_mom The day 2/3 vs day 5 is another separate question, and I also know from experience RE's opinions differ on this too....So, it's still up in the air and probably impossible to get a definitive answer. Unlike the PGS testing, which in time I'm sure will perfect. But now, it seems to be too experimental to fully trust it. I think the reasonable compromise, at least in some cases, is to still PGS test and then decide what to do. This way, you can avoid clearly risky embryos such as Down's and Edwards'. 
    It also depends on the reason one opts for PGS. Is it to try to rule out m/c (in which case avoiding anything abnormal makes sense)? Is it to rule out Down's? Is it because one has too many embryos and wants to decide on the best? Etc.
  • I am considering retesting and was wondering if you could share specifically which test(s) you used and if the re-testing was using the same test only different equipment? We used NGS through reprogenetics and I'm just trying to discern what would be a good second choice.  Thank you for sharing your experience, is is very helpful. 
  • @tahini Hi, yes, both were NGS PGS tests on 5-day blasts. The retest was with Igenomix. 
  • Thank you, that's very helpful! 
  • Thanks for posting this. My doctor has been pushing for PGS as well and I wouldn't have even thought to question the results

    tinjp78
  • liljoy-2 said:
    Hi ladies,
    I feel compelled to share my experience with you because I think it has so many ethical and emotional implications. Of course, it is ONLY my experience and it may not extrapolate, but I still think it is very relevant. I had a bunch of blastocysts and did PGS because I wanted to avoid m/c or Down's (over 35). Only a couple returned normal, but the results had a few things that puzzled me, and since the alternative was to discard the embryos, I decided to retest instead, with a different lab (after also reading articles about abnormal embryos being implanted in Europe and developing normally or retested with different results). Guess what?? More returned normal, PLUS the rest of abnormal ones had totally different abnormality profiles.

    So I'm sitting here thinking, how many normal embryos are killed each day after PGS results? How many women who can only produce one embryo that turns out abnormal end up unsuccessful just because of throwing away the embryo? This technology is only experimental, the labs either make awful mistakes OR the embryos are mosaic and good cells may exist that can then lead to self-correction in the embryos. Playing God is awful and heartbreaking. I still don't know what to do with my "abnormal" embryos in this case because I definitely don't trust the results anymore..

    This sort of thing is one of the reasons Ive decided to take my chances... I posted these articles on my infertility insta because I feel like its important for people to know who is the appropriate group for testing: IE If you have a TON of embies, you are better off testing...even if you get some false negatives, you will likely have sufficient positives. But with women with fewer embies, we could be chucking out our only chances for a baby with your own eggs...I know it may still not work for me, but I'm giving my eggs a chance
    https://www.thecut.com/2017/09/ivf-abnormal-embryos-new-last-chance.html
    https://www.centerforhumanreprod.com/fertility/transferring-supposedly-chromosomally-abnormal-embryos-ivf-cycle/


    radmom27tinjp78ruby696
  • @dragonette505 Yep, that's very wise and important. See, we are our own advocates and sometimes it pays off. My RE said she "learnt something new" with my experience. I'll give all my 3 "normal" embryos a chance one way or the other, but won't want to discard the "abnormal" ones either. I think I might want to keep them just in case in the future the science will clarify their status. I'd rather donate them than throw them away.
    dragonette505funkykeyradmom27tinjp78
  • All of this is why I declined PGS testing. With my DOR we were not expecting many eggs already and I couldn’t bear the idea of throwing any away if the science behind it is questionable. My RE pushed for it initially then when I told him my concerns he agreed with me that we did not need to do it. This is one of the articles I saved on it. 
    https://ovarianresearch.biomedcentral.com/articles/10.1186/s13048-017-0318-3

    Me 34, DH 38, TTC # 1 since Jan '16
    March '17 - low AMH, severe MFI
    August '17 - IVF - 5 embies frozen on day 1 due to hurricane Irma
    Nov ’17 - FET and 2 blasts refrozen - BFP! - Beta #1 251, Beta #2 1575, Beta #3 6820
    Baby boy O born in July ‘18!
    dragonette505funkykeyradmom27tinjp78
  • @liljoy-2 @safire3 it amazes me how much scientific legwork we have to do for ourselves!

    safire3radmom27tinjp78
  • Would you mind sharing who the other lab was.  We had our testing through cooper genomics.  Only one "normal" embryo which turned into a blighted ovum pregnancy (genetic abnormality).  So I am now really questioning the results.  I am waiting to hear if my other embryos have been discarded.  The more I'm reading the more I am thinking this is all psuedoscience.  If they haven't been discarded, I'm not sure if I should retest or just see if we can give them a try.
  • I'm bringing this thread back to life because of what I am going through right now. I think it is important for women who are being told to do this test should be informed. I am NOT saying that my results are wrong, as at my age, likely most if not all my eggs aren't great....but I truly thought I would have at least 1 good one. I am hoping my indeterminate one is, but I am just not willing to risk it by retesting (thaw, rebiopsy, refreeze, thaw, fet). 

    I will take my chances this time around. If I do another IVF, I will do PGS again just because of my age, but I won't be as one-sided in the results.
    Me: 43yo, DH: 46yo
    3 Daughters (singleton @27yo, ID Twins @34yo)
    Protein S Deficiency (Blood Clotting Disorder) - reason for 2 of my M/C's
    4 MC's:  Blighted Ovum-D&C @ 9wks;  Natural MC @ 7wks; Blighted Ovum-D&C @ 9wks; MC genetically normal boy-D&C @ 9wks
    Tubes were tied after my Twins. Remarried and want to give my DH a baby!
    IVF#1 June 2019 - ER 6/15/19, 24R, 21M, 20F, 7 6DBlasts Frozen for PGS Testing,
    RESULTS of PGS 4 abnormal girls,  2 abnormal boys, 1 indeterminate girl
    FET#1 August 23, 2019 (transferring 1 indeterminate girl & 1 abnormal boy)
    31magnolia
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