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IVF with PGD following recurrent miscarriage

69 replies

Pinkandwhite · 31/01/2017 19:20

Does anyone have experience or success with doing IVF and PGD (embryo screening) after recurrent miscarriages? I am currently going through my fourth miscarriage and I have been advised to look at this. If anyone has had any experience with this or has a viewpoint then I would be really interested in hearing about it. Thanks

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bananafish81 · 08/02/2017 08:17

PS pink

DHEA is only for women with low ovarian reserve and low androgens. If you don't have DOR (diminished ovarian reserve) it could raise your testosterone to levels that are detrimental, and do more harm than good. Unless you have low AMH / high FSH or are in your 40s, then I wouldn't take it

Inositol is for women with too high levels of testosterone - ie women with PCOS

So the 2 are for different ends of the spectrum - I wouldn't take them together. Inositol won't do any harm, but the DHEA isn't advisable unless you're likely to benefit xx


bananafish81 · 08/02/2017 08:20

PS here are the basic RM tests that it's worth having if you haven't already
Thyroid function ( TSH, FT3, FT4)

thrombophilia screen – anticardiolipin antibodies (IgG and IgM), antithrombin 111, factor V Leiden, factor II prothrombin gene, PAIP polymorphism, activated protein C resistance, Protein C/Protein S, lupus anticoagulant, MTHFR

autoimmune antibodies ( inc. anti-nuclear antibodies, thyroid peroxidase and anti-mitochondrial antibodies)


Pinkandwhite · 08/02/2017 15:04

You are amazing banana - in terms of your knowledge, your willingness to share what you know and your strength in terms of going through all you have gone through. I am so sorry you have both nursed your dying mother and endured so many cycles of IVF. It's bloody unfair. I am really, really sorry you have had to go through all of this physically, emotionally and financially.

I didn't know that about DHEA and myo-insotol. It was my doctor who advised DHEA but I haven't even had my AMH or FSH tested yet. I actually changed doctors because I didn't feel as if she knew what she was talking about.

I can't believe there are still so many tests I haven't had and my DH hasn't had. It's ridiculous really. I don't know where my blood test went to but my guess is that it didn't go to the right place. Ugh. I think I basically need to start all over again with the testing.

I am really, really grateful to you for sharing all of this information. I think you're right. I need to explore all of the RM stuff before rushing to IVF. I just want a solution NOW but unfortunately that isn't the way this works. I keep on thinking that I should be giving birth around now to the baby I lost back in June.

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Pinkandwhite · 08/02/2017 18:03

I came across these two links about male fertility which are quite interesting:

I like the second link because there's a happy ending at the end of the thread!

My husband still hasn't had any testing apart from the karyotyping. I'm going back to my doctor on Friday so will ask about the sperm fragmentation test then.

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bananafish81 · 09/02/2017 08:18

Could also consider the sperm aneuploidy test


Pinkandwhite · 09/02/2017 19:50

Thanks for that banana. The reason I wonder about DH's sperm is because he has an autoimmune disorder. We are both wondering whether that is having some kind of affect. It all feels like clutching at straws though. We want answers when, in fact, we may not be able to find any. He hasn't had his sperm analysed at all yet so we need to get that done ASAP.

I had a reply from one IVF doctor today who questioned whether my miscarriages could be due to me being unable to carry boys. This is what he wrote:

'- You have experienced four miscarriages apart from the successful pregnancy. I am inclined to think these pregnancies may have been with a male baby. There are many examples of women being able to deliver healthy girls yet have miscarriages when they are pregnant with boys. This is the case when there is an X-linked disorder. The female children receive two sets of X, one from the mother and one from the father, therefore, if there is a mutation on one of the genes, then the other chromosome can take over. However, male children receive one copy of X only and when there is a defect on the X chromosome, then the child will carry a disease. Depending on the condition, some pregnancies are miscarriages and some children are born with genetic defects.

  • Without knowing the specific mutation on the X chromosome, it would be almost impossible to screen all 800 genes on the X chromosome. However, we can screen all the chromosome for aneuploidies and mosaicism and we can also use this technology to select healthy female embryos, who would be unaffected by an X-linked condition. If you are aware of a specific mutation running in your family, then it will make sense to screen the embryos for this specific gene.'

I always thought this was old wives tale. What do you think?

Interestingly my maternal grandmother had multiple miscarriages. My mum isn't sure how many but says she thinks it could have been as many as 10. She only managed to carry one baby to term - my mum.

My mum herself, had two healthy pregnancies in her twenties followed by several miscarriages in her thirties.

Again, clutching at straws in thinking about these things I think.

How are you feeling about everything? I get the impression you are coping well? I have found the past couple of days pretty hard. I have been very tearful.
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bananafish81 · 17/02/2017 07:35

Hi ladies

Sorry for not replying, been lying low while waiting for feedback from the cancer clinic about my investigations following a dodgy smear.

The latest research from the Coventry clinic shows more about hyper fertility in women with RM, and why women do often eventually get there with persistence - because they hit a month where their uNK cells are low

Well worth an appt to see the Profs, I'd say


bananafish81 · 17/02/2017 07:36

The male embryos thing sounds like absolute bollocks to me BTW. I'd ask to see evidence because what he's suggesting sounds like total horseshit.....


bananafish81 · 17/02/2017 07:39

In answer to your question I'm just plodding on. I'm devastated that we may never have a child and never become part of the parents club. I'm absolutely terrified of the next cycle succeeding - and then miscarrying again. Just to get pregnant is such an ordeal - I've been doing 5 months of injections and scans and painful biopsies just to get to a point where we can try another embryo transfer

I'm hoping the cancer clinic will sign me off as having had a wonky result and just a horrible 2 months of hell, now my repeat smear has come back normal.

This month we're doing a mock FET cycle, a dummy run for the real thing, to see how my lining responds (and so we can do the ERA test). If they goes well then we'll potentially FET next month

Shitting it


Pinkandwhite · 18/02/2017 18:05

Hi bananafish, I am so sorry you are dealing with all of that. It does sound like hell. I'm sure you've already looked into this but are you ruling out surrogacy?

I'm not surprised you're shitting it. I would be too. I'm so glad your smear test has come back normal now. How long have you been going through all of this in total now?

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Pinkandwhite · 18/02/2017 18:06

That's a really interesting article. If that's the case, then surely taking a steroid after ovulation would be the answer? Assuming there are no other issues.

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Pinkandwhite · 18/02/2017 18:07

I'm thinking the same about the male embryo thing. At the most basic level, it's extremely unlikely that 4 out of my 5 pregnancies would have been male embryos. Those odds would be unlikely.

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Pinkandwhite · 18/02/2017 18:10

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bananafish81 · 18/02/2017 18:47

Yes surrogacy is the next step for us

However at £100,000 - 150,000 for gestational surrogacy in the US it's not exactly a small undertaking 😓

Surrogacy law in the UK offers no protection to either surrogates or intended parents - surrogacy arrangements are legally unenforceable. Commercial surrogacy is illegal so it's altruistic surrogacy for expenses (around £15,000) only. The UK agencies are closed to new intended parents, most UK surros prefer to go indy (independent) via secret FB groups. Which again has no legal protection.

Unless you have a friend or family member to surro for you, UK surrogacy is incredibly challenging. And the alternative in the US is cripplingly expensive.

But if I can't successfully sustain a pregnancy then we won't really have any choice if we ever want to have a baby


bananafish81 · 18/02/2017 18:54

I've been doing fertility treatment since Sept 15

Since then I've done 4 rounds of IVF with egg collection, 1 cancelled IVF cycle, 2 cancelled frozen cycles, 2 embryo transfers, 2 pregnancies, 2 miscarriages, 1 ERPC, 2 hysteroscopies, then since my last hysto I've done 2 HRT cycles and 3 ovulation induction cycles with injectables while I've had a copper IUD.

Had my IUD out on Weds and am doing another ovulation induction cycle with injectables as a mock FET cycle with endometrial biopsies.

In theory could be doing the real thing next month, but that depends on a lot of things. I have to do an ovulation induction FET as I don't respond to HRT so can't do a normal medicated FET (and I don't have natural cycles due to PCOS so the only way to get my lining to grow is through ovarian stimulation)

I know you think IVF would be a quick fix but it really, really isn't. It's the most emotionally harrowing experience of my life.


bananafish81 · 18/02/2017 18:56

The Coventry clinic are now moving away from steroids after ovulation even in women with high uNK cells, because if the levels cycle from high to low, then taking pred in a low month can do more harm than good. You need a certain level of inflammation to support implantation, so taking pred if it's not needed can over suppress you and prevent implantation from taking place

So hence why they recommend repeat biopsies and trying to identify the pattern of uNK


bananafish81 · 18/02/2017 19:06

Also worth noting what Prof Brosens says in the New scientist article about women with RM in his research often being hyper fertile and falling pregnant very easily.


MewlingQuim · 18/02/2017 19:09

Sorry to hear what you have been throughFlowers

Have you been tested for autoimmune disease as a cause of your miscarriages? I had several rounds of IVF which resulted in miscarriage, some around 5 weeks and one at 12 weeks. The clinic didn't really count the 5 week ones as pregnancy as it was before the scan, so it delayed investigation. It was only after I lost a couple of naturally conceived pregnancies as well that I was referred to the recurrent miscarriage centre, and was diagnosed with Antiphospholipid Syndrome. The fertility clinic missed it completely Sad


bananafish81 · 18/02/2017 19:25

Sorry for your losses Mewling

Yes I had all the thrombophilia tests before we did my first embryo transfer, to rule out any clotting disorders like APS up front.

I'm negative for all thrombophilia (anticardiolipin antibodies (IgG and IgM), antithrombin 111, factor V Leiden, factor II prothrombin gene, PAIP polymorphism, activated protein C resistance, Protein C/Protein S, lupus anticoagulant, MTHFR, autoimmune antibodies ( inc. anti-nuclear antibodies, thyroid peroxidase and anti-mitochondrial antibodies) - however my first miscarriage was such sudden foetal demise that we can't rule out compromised placenta blood flow (although doppler always showed great uterine artery blood flow on ultrasound)

So we're treating with clexane and aspirin post ET.

I'm sorry you had to go through so much to get your APS diagnosed


Pinkandwhite · 18/02/2017 20:25

Surrogacy in Europe is cheaper isn't it? I don't know what the legalities in different countries are though. My sister has offered to be a surrogate for me if it came to it but I think I would still end up paying her the 10-15k you would pay to anyone in the UK because it's such a big ask and it would set her career back.

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Pinkandwhite · 18/02/2017 20:26

Have you seen this RM group on Facebook?

People there seem very supportive and pretty well informed.

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Pinkandwhite · 18/02/2017 20:27

What a bloody awful journey you've been on banana. I'm so sorry. xx

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bananafish81 · 19/02/2017 00:23

Surrogacy in Georgia and Ukraine is cheaper at around £30-40,000, but is pretty shady - you aren't allowed to even meet the surrogate until after 12 weeks, and it's basically rife for exploitation of desperate women. You also have to move out there while you wait for the baby to get a British passport - accounts from posters on FF show being out in Georgia or Ukraine for 3 months is quite normal.

My cousin offered but unfortunately she has a complicated obstetric history, and another pregnancy could be very dangerous for both her and a baby, so that's not a viable option

We have 5 potential people on ice, so once the next cycle fails / I miscarry again, we will have 4 PGS tested embryos. Obvs we wouldn't be greedy enough to think we could ever be lucky enough to have more than one child, so the question becomes how many embryos we burn through in my body before we try and turn one into a person in someone else's body.


bananafish81 · 19/02/2017 00:50

I haven't seen that group, thanks for the tip. I'm member of some other FB groups for women with quite complicated reproductive issues, which are very helpful as the women are so knowledgeable. For example, I want to speak to my consultant about trying Neupogen injections this time, and the advice from women on the various reproductive immunology related and PGS groups has been invaluable.

It's helpful to be amongst other women who have issues getting as well as staying pregnant, because most RM stuff is for women who are TTC naturally (and many already have 1 or more children) - which is really depressing as it makes me feel even more barren!!


Pinkandwhite · 19/02/2017 03:10

Europe is still ridiculously expensive then. It's absurd that the necessary laws aren't in place in the UK. I joined a couple of the surrogacy Facebook groups when I realised I was having miscarriage number 4 and felt utterly hopeless about ever making another pregnancy work myself. There are lots of women on there who have been surrogates several times before and are older so have finished their own families. If my sister hadn't come forward to say she would do it then rightly or wrongly I would definitely have tried to find someone that way regardless of the legal issues.

Your next cycle may be successful. I know it's easy for me to write that here and hard to believe. I'm really sorry I am one of those who has somehow managed to have one child. I can only attempt to understand how you feel. I have my dark times even with one child. I wish I could do something to help you. It's totally random but I could put you in touch with my sister if I end up not needing to use her as a surrogate. She definitely, absolutely and completely does not want more children and I think she would help someone who isn't me.

That's really interesting about Neupogen injections. I don't know anything about that but I will look into it.

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