Talk

Advanced search

IVF with PGD following recurrent miscarriage

(58 Posts)
Pinkandwhite Tue 31-Jan-17 19:20:36

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

Blondeshavemorefun Wed 01-Feb-17 09:44:55

@bananafish81 is the guru in these boards (imo)

ESP about pgd and many other matters

bananafish81 Wed 01-Feb-17 09:51:27

Yup I've done PGS (not PGD - the former looks at the number of chromosomes to see if the embryo is chromosomally normal and has the potential to become a person - PGD tests for very specific inherited genetic diseases)

I've miscarried two chromosomally normal embryos but it's been as much of a diagnostic exercise as anything. We know that the problem is the soil and not the seed. If we can crack the uterine environment then we're only transferring normal embryos that have the potential to go the distance

We had our frozen embryos genetically tested and it turned out all 4 were abnormal and could never have succeeded

I don't know if we will get there, but I know we have the embryos bit of the equation sorted. If your problem is chromosomal abnormalities then it can help

For recurrent miscarriage it's unlikely that they would all necessarily be chromosomally abnormal, unless you're in your 40s. I'd recommend recurrent miscarriage investigations before having PGS in the first instance. As a genetically normal embryo won't become a baby unless the uterine environment is receptive and can sustain a pregnancy

Have you had the RM tests? Karotyping? The uNK endometrial biopsy at the Coventry clinic? These would all be worth looking into if you haven't already. Good luck.

Pinkandwhite Wed 01-Feb-17 15:10:15

Thank you so much for replying and I am really, really sorry you are going through a similar thing.

I am 34 now. I have had the karyotyping done and a few other tests. I'm not familiar with the RM tests or uNK at the Coventry Clinic so I will look at those now.

I have managed to have one successful pregnancy. I had one miscarriage, successful pregnancy, three consecutive miscarriages. That makes this very confusing for me.

I've been doing some more research and it seems that next generation sequencing is that most advanced version of PGS. Is that right? Thanks again.

bananafish81 Wed 01-Feb-17 17:48:00

Definitely worth getting the full battery of recurrent miscarriage tests done - sadly the more miscarriages you have the less likely the issue is chromosomal, and the more likely there is an underlying issue (ie it's not 'just bad luck' with a dodgy embryo)

PGS only solves the embryo element - but without addressing any underlying issues that are causing losses of chromosomally normal embryos , PGS won't make any difference 

The Coventry clinic is well worth investigating, seeing Prof Quenby or Brosens for an endometrial biopsy to look at uterine NK cells - you can self refer, it's about £500 or thereabouts I think 

NHS RM tests will mostly look for clotting disorders (eg anti phospholipid antibodies, anti thyroid antibodies, factor V leiden, MTHFR) , thyroid function, uterine anomalies.  They won't look at NK cells - the Coventry biopsy is self funded, but supports their research programme, so it's not private medicine. 

Do you have trouble conceiving or is your issue staying pregnant OP? Because if you don't need fertility treatment to get pregnant, then arguably IVF with PGS isn't needed, what's needed is a proper treatment programme for RM. PGS is just a selection tool to choose a chromosomally normal embryo - it doesn't improve embryo quality. And crucially if you have an underlying issue which is behind repeat losses, PGS isn't just not needed, but won't address the problem 

NGS (next generation sequencing) is exactly the most modern and accurate form of PGS - it's what I had. Happy to share any insight about the PGS process, and what you should be looking for in a clinic's genetics programme. But I'd say more important to understand the problem and whether IVF is in fact the right solution. Xx

Pinkandwhite Thu 02-Feb-17 14:17:35

I am REALLY grateful for all of this information bananafish.

No, I have absolutely no problem getting pregnant. It has happened the first or second month of trying in all five of my pregnancies. My issue is staying pregnant. Well not even staying pregnant - my body won't even let go of the pregnancies, I always need to have a d&c or take the tablets to ultimate end my unviable pregnancies. My issue is the way the embryo develops. This latest time, I went for a scan and they couldn't see anything apart from a thick endometrium lining. The embryo itself was no-where to be seen.

I'm actually living overseas at the moment which doesn't help. I think I need to fly to the UK and just get all of the tests done/re-done just to make sure nothing has been missed.

I've started reading about NGS but I can't find many clinics that do it. One in Colorado, one in Poland and another in Oxford. Would you mind telling me which clinic you used?

Thank you so much again. xx

bananafish81 Thu 02-Feb-17 17:39:07

OP then doing IVF would be absolute madness - it'd be a very  expensive way to end up in the same place. Recurrent miscarriage is unlikely to be all down to chromosomal abnormalities, so with RM there's usually some kind of underlying issue. Your issue clearly isn't getting pregnant, and if the losses are unlikely to be all 'just bad luck' then PGS isn't necessarily going to get you any further. 

My body also won't let go of pregnancies - it took two operations (an ERPC and a hysteroscopy) to un-pregnant me the first time, and a hysteroscopy the second. 

If you get pregnant so easily it could potentially be an immunes issue that means you may be what's called hyper fertile, or an unfussy uterus - ie your endometrium isnt sufficiently discriminating, it lets dodgy embryos implant that it 'should' reject. A friend of mine always got pregnant on the first or second month but kept losing them. NHS told her it was just bad luck as her RM tests were normal - she miscarried again (third in 11 months). She got immunes investigations and got treated with steroids and intralipids, and now has a baby girl. 

Obvs this may have absolutely no relevance to your situation - but until you're investigated then no way to know. It does seem crazy to be even considering PGS however! CARE clinics have a terrific genetics programme - my embryos are at CARE London, who do NGS with Genesis Genetics. Other London clinics do array CGH which is older and less accurate. However I would strongly recommend against PGS in your case, as it'd be a very expensive and invasive way to end up in potentially the same situation as you're in now 

Have you had a hysteroscopy to check out the uterine environment? X

bananafish81 Thu 02-Feb-17 17:51:30

BTW here's a better explanation of the unfussy uterus theory for women with RM who are hyper fertile (conceive within 2 cycles repeatedly, then repeatedly lose pregnancies)

http://www3.imperial.ac.uk/portal/page/portallive/D26089ADAE597110E040C69B473976A2

The research is from prof Brosens and Quenby at the Coventry clinic BTW

bananafish81 Thu 02-Feb-17 17:54:39

Another article

http://mylifeafterloss.blogspot.co.uk/2010/07/miscarriage-blamed-on-non-fussy-uterus.html?m=1

Pinkandwhite Fri 03-Feb-17 02:23:49

Again bananafish, thank you SO much. I wish I could tell you how much I appreciate your replies. You seem more knowledgable than all five of the ob/gyns I've spoken to here!

Those articles are fascinating and make a great deal of sense. I'm going to re-read them when I'm not as tired (it's the evening here now)

No, I haven't had a hysteroscopy done. I've made an appointment with Raj Rai for later this month so will ask him about all of this. Do you think seeing him is a good place to start or is there anyone else you think I should go to instead/ as well? Perhaps I should also make an appointment with CARE...

Thanks again.

bananafish81 Fri 03-Feb-17 08:03:30

Raj Rai is great and will do a terrific job on a hysteroscopy - but he will tell you it's just bad luck and to keep trying. He will tell you that there's no evidence for uterine NK cells or immunes issues, and that most women with RM are successful with persistence

My friend with RM who was told she was fine and it was just bad luck? Was told that by Raj Rai. Went back to him after another miscarriage and told the same. Couldn't keep losing babies so went down the immunes route. Next pregnancy was successful

The plural of anecdotes isn't data and you should deffo see Rai and he will do a terrific job on a hysto. He's a brilliant clinician. But his view on the causes of RM is quite rigid and unless you have a clotting disorder or thyroid issue, the St Marys clinic will say you're fine and it's just bad luck. Which may or may not be true

I'd say def to see Rai but also to see the Coventry clinic. I honestly wouldn't see an IVF clinic at this stage. There's nothing to say IVF would be of any benefit at all

Sorry to be blunt, but have you had the products of conception (horrible phrase) tested after any of your D&Cs?

bananafish81 Fri 03-Feb-17 08:18:23

Out of interest was your successful pregnancy a boy?

My friend had the same pattern as you BTW. One miscarriage, then successful pregnancy. Then 3 successive miscarriages. And now post treatment, another successful pregnancy smile

Pinkandwhite Fri 03-Feb-17 18:59:57

Thanks again bananafish. Ugh, I'm not sure I want to see Raj Rai if he is just going to tell me it's bad luck. One or two miscarriages are bad luck but 4 - surely not.

I have contacted Coventry to ask for an appointment there.

I don't believe anything has been tested after the D&Cs.

No, I have a girl...

Thanks!

Pinkandwhite Fri 03-Feb-17 19:49:23

Sorry, one more question, do you think it might be better to see Dr Shehata rather than Raj Rai?

I'm not sure how well I would cope with paying 200 pounds to be told 4 miscarriages are just bad luck!

bananafish81 Fri 03-Feb-17 20:49:15

My friend with the multiple miscarriages who saw Raj Rai had her baby girl after seeing Mr Shehata smile

He will want to run lots of very expensive blood tests but he is the expert in miscarriage and certainly my friend would advocate for the treatment she received

Basically St Marys believe in thrombophilia and thyroid and uterine anomalies as causes of RM - they don't place any credence in immunes theories

The Alan Beer book 'is your body baby ready?' is a useful guide to the kind of tests and treatment Shehata will do

Good luck xx

Pinkandwhite Sat 04-Feb-17 02:14:00

Thanks bananafish xx

fbradf01 Sat 04-Feb-17 15:30:15

Hi pinkandwhite and bananafish. I'm in a similar boat to you pinkandwhite and also under Raj rai.
I just had mc number 4, first 2 mmc at 8-9 weeks, then saw Raj for the first time and was diagnosed with ashermans and he did my Hysteroscopy for this, great job, no complaints!

Since then had 2 cps (both at 6 weeks). I saw him this week and asked him about NK cells and as bananafish says he passionately doesn't believe in it! Still I've made an appt at Coventry to see Quenby.
But he agrees we can't just keep trying, so had amh tested, hubby having a defragmentation test? And then karyotyping and then his suggestion was ivf with pgd. Not sure how I feel about it, it wasn't what I expected him to suggest.

Because of the ashermans I think it's something to do with my lining so having that checked again as well. Bananafish, you mention this too? Anything you would recommend to help?
Happy to answer any questions if I can x

Pinkandwhite Sun 05-Feb-17 02:00:51

Hi fbrad, I am REALLY sorry to hear you are in the same boat. It's so, so hard.

I spoke to my OB/GYN here this morning (I'm overseas) and he told me that several of his patients in similar situations - multiple miscarriages - have had success with IVF and PGS. Specifically with the Next Generation Sequencing that banana mentions above. I'm pretty certain I'm going to do it. It's got to be worth a go. I've found two clinics in Cyprus that have the technology, one in Spain and one in Poland.

How long did it take to get an appointment at Coventry?

Along with the IVF and PGS, I'm going to make sure my husband and I have had every possible test done to check there is nothing else going on. I've had quite a few of the tests done already and they haven't revealed anything in my case. We had the karyotyping test, blood clotting test, NKcells blood test but not uterine etc.

So you like Raj Rai I guess? Did you also consider seeing Dr Shehata? xx

bananafish81 Mon 06-Feb-17 00:43:15

Fbrad - I'm so sorry for your losses too. And to get ashermans is another kick in the teeth. Have you had a saline ultrasound since the hysteroscopy to see how your lining is looking? That will give them a better look at the endometrium than a standard pelvic ultrasound. (Have you been having pelvic ultrasounds to check your lining mid cycle?) 

Have you ever had karotyping of the products of conception with any of your miscarriages?

As you know, the likelihood of chromosomal issues declines the more losses you have, and the more likely it is that there's another issue at play 

I would massively recommend the Coventry clinic, as they are leading edge researchers in this field, and simple additions of steroids and progesterone help many women to stay pregnant. Mr Shehata prescribes more aggressive treatment. However he will support you throughout your TTC journey - he does super ovulation programmes to try and accelerate the TTC journey for women who can get but not stay pregnant 

I am a massive advocate for PGS, for me as much as a diagnostic exercise as anything. But I was doing IVF already. To try and get me pregnant is thousands of pounds in the first place. The benefit of PGS is that in theory it does maximise the chances because you only transfer a chromosomally normal embryo. In practice if you have RM issues, unless you're having treatment to address those, it won't necessarily increase your chances of a live birth on its own, unless your losses are due to repeat chromosomal abnormalities (eg due to a parental translocation). If however you ARE having treatment to address the underlying issue, then its incredibly useful as a diagnostic exercise as much as anything

After my first loss of a chromosomally normal embryo, we did PGS. I didn't want to risk transferring an untested embryo whilst we were doing all this treatment to work on the uterine environment - then if the cycle failed or i miscarried, we wouldn't know if that was because we'd cracked the uterine environment but the embryo was a dud, or if the embryo was perfect but the uterine environment was still the problem 

We know that the latter is the case, because I transferred a PGS normal and I still had a CP. So we know that next time what changes to my protocol we will make - and that if I still miscarry another normal, despite all the work we'll have been doing on the uterine environment, that it's increasingly unlikely I'll be able to sustain a pregnancy  

I have had persistent lining issues - I only had minor filmy adhesions removed during my last hysteroscopy, no formal ashermans, but I've basically been treated as an AS patient because we've needed to get me menstruating. My issue has been thin lining in my treatment cycles - I've had several FET cycles cancelled due to non responsive lining (I don't have natural cycles due to PCOS). I had a copper IUD inserted in my hysto to help my lining regenerate - unfortunately the normal treatment of HRT (oestrogen pills / patches) didn't work for me as my lining is fussy and doesn't respond to artificial oestrogen. So we've had to stimulate my ovaries with hormone injections to grow lots of eggs, in order to grow my lining, to try and get me menstruating. Have been doing this since October and finally getting the coil out in a couple of weeks

I've also been on a protocol for thin lining that has been used in AS patients, of pentoxifylline and high dose vitamin E 

I would get the saline scan, and / or an HSG, would get your uterine artery blood flow checked when you have a pelvic ultrasound, and if you're still having issues with your lining then maybe see an AS specialist like Mr Lower? 

Pink - with the nk cells blood test, the simple test that most labs can do which checks the concentration of nk cells in your blood isn't really that useful - it's the killing power of the cells that's important. If you have the blood tests (that Shehata does - Coventry will say peripheral blood tests are meaningless and it's the uterine NK cells that count) they need to be the cytotoxicity assay tests that go to the US, as only a few labs do the test 

Worth also getting your DH to take the sperm aneuploidy test as well as the DNA fragmentation test 

So sorry you're both having to go through this 

fbradf01 Mon 06-Feb-17 23:39:23

Wow bananafish you really have been through the mill, all fingers and toes crossed for you when the coils come out in a few weeks. What's your plan then?

I had a pelvic ultrasound post the hysteroscopy and showed I had ovulated and lining was 10mm this was in April and day 21 ish of my cycle. Then had further one in august on day 28 ish just as clinic std and lining was 5mm but they didn't seem concerned and says lining thins towards end of non trying cycle?
I also got amh results today which Raj described as good, amh of 17.2 and fsh of 7 (I'm 36) so this would mean ivf with pgd is an option. We haven't had any karyotyping done on us or any products of conception (urgh sounds so awful) though. We left last consultation with list of options that I'm mulling over the order in which to do them. I'm still convinced of lining issues as since my ashermans op had 2cps? So Im thinking of taking up the offer of lining monitoring during my cycle and repeat hysteroscopy to check for repeat scarring? and doing this first and then can have it on nhs. (Last hysto cost me 3500!) hubby is doing sperm test, bout time he joined in the testing fun!!
Then next the karyotyping, But not sure here if they don't find anything then still do pgd?
Also you mention the cost of your ivf, is there any chance of getting a funded cycle through the NHS? We could just about afford a cycle if we raided our savings though but would be good to know now so I can curb my shopping habits 😀.

Because of my recent cp Coventry have says I have to wait two full cycles so guess this then comes then.

Would love your advice and to hear how you're getting on please!

Honestly keeping sane in my late night mind wanderings x

Pinkandwhite Tue 07-Feb-17 19:46:15

I'm feeling really down about all of this today. I was managing to stay quite positive but I'm really not managing it today. The more I look into what might have caused my miscarriages, the more confused I feel.

Thanks for that information on the killer cells banana. I've found several articles on the internet that say the same thing; the blood test is a bit useless really.

I'm going to go to Coventry for the test in March. I can't go this month because I'm miscarrying now and need one normal cycle first. How did you both find the Coventry procedure?

fbradf01 Tue 07-Feb-17 20:27:28

Hi pinkandwhite, sorry you're feeling down today, sending hugs!

Whenever I get down I try and focus on the thing I'm going to do next to get me closer to my goal. Well that and wine 🍷
I found out about Coventry from forums like this if I'm honest. I spoke to them yesterday and as I had a cp this cycle they said I had to wait 2 cycles so booked for April.
Realised I didn't answer you're last question, I do like Raj and taking him up on all options he offered, but ultimately I want to investigate the NK cells but just through speaking people felt that Coventry was better. Just personal choice.
I have spent my day at work today sitting in meetings whilst googling ivf funding for recurrent miscarriage, starting to think I shouldn't have booked that 'we need to cheer ourselves up' holiday for April 😀

Have you decided on your next move?
X

Pinkandwhite Wed 08-Feb-17 00:17:54

Hi brad, thanks for replying. I really think miscarriage 4 is hitting me today. I've been being quite pragmatic about it up until now thinking 'well it's ok because IVF with NGS is probably the answer' but the more I read, the more I realise that really isn't a certainty. It's a silly thing to wish, but I wish that my problem was an inability to get pregnant. At least that way I would know it could probably be solved with IVF. Multiple miscarriages are so much more complex.

I have been in touch with Coventry and they told me that I just need to have 1 normal cycle after this miscarriage so it's interesting that they have told you 2... I wonder which is the right answer!

I'm not even sure if this latest loss would be classed as a miscarriage or a chemical pregnancy because I only got to 5.5 weeks and they couldn't even see a sac on the scan. I doubt it would even have gone that far if I hadn't been given progesterone suppositories as soon as I realised I was pregnant (about 5 days before my period was due).

That's something I'm finding confusing, why am I having such early losses I wonder? None of my last 3 pregnancies have even made it to 6 weeks...

I think my next move is just to make sure my husband and I have had every single RM test there is. At this stage, there are so many tests we haven't had. We haven't been tested for STIs, he hasn't had his sperm analysed etc etc.

If you go for IVF, will you do it abroad do you think? I was looking at costs and actually, I think doing it in Oxford is about the same price as going to Europe because their prices include medications unlike the European clinics which don't include that in their prices. Do you think that will be your next move? xx

fbradf01 Wed 08-Feb-17 00:39:00

Hey, glad to see I'm not the only one midnight musing as I call it!
Think we're on the same path of getting every test done we haven't had yet then deciding on what to do next. Got an appt with the rmc at st Mary's on 21st march to get the ball rolling on lining checks, hysteroscopy and karyotyping through the NHS. Hubby has a date with a sample pot next week too 😂.
Trying to focus on this first (despite continually reading ivf threads on here!) and then make informed decision I hope.
I honestly don't know how I feel about the ivf, my gut says it's not a chromosomal problem and so I want to exhaust other avenues first. It's also super expensive, and whilst I'll happily spend all I have I also want to feel I have the best possible shot when I get there. Think I would do it in the uk I'm in London so lots of options close by.
Strangely mc number 4 has me a bit numb, maybe it hasn't hit me yet but has really affected my hubby. We chatted at the weekend about other options such as adoption which we've never done before and I worry our desire to keep trying might have different timescales.

No idea on Coventry btw but as said the lady on the phone was a big vague!

Are you going to see anyone else as well? Can't remember if you said you were already under an rmc?

Pinkandwhite Wed 08-Feb-17 01:32:32

I live abroad (America) so I'm actually 5 hours behind you at the moment. Sorry you're musing at midnight. I've done that plenty of times too.

I felt really numb at first too. When did you find out you were having mc 4? I found out last Tuesday and this is the first day I've really felt down about it all - a week later. I've eaten almost a whole bar of green & blacks today.

This is all really affecting my hubby too. It's so hard for them because as little as people understand how we women might feel after a mc, I think people think about the guys even less. There is also less support for them, there's no chatting on forums like this for example.

I can't decide if I think it's a chromosomal problem for me or not at the moment. I know a handful of people in real life who have had this issue and of them, 2 discovered it was an issue with the quality of their eggs (they were both late 30s though) and had IVF with egg donors - they each have one child now, 1 never discovered the reason and has had 2 children with IVF & NGS anyway and 2 discovered they had high NK cells - one of these ladies is now pregnant with baby 2 after using prednisone for both pregnancies, the other still doesn't have a baby and I don't know why not but I think she was reluctant to take prednisone.

I'm now trying to decide between seeing Raj Rai and Dr Shehata or wondering if I should just see both of them. I find it odd that there is such controversy over NK cells. I've already had the blood test done which came back as normal but it wasn't even done on a particular day of my cycle so I think it was pretty useless.

Have you read the book 'It starts with the egg'? I have it and have been taking DHEA and co-enzyme q10 for a while. I've just started myo-insotol too. I figure I should try everything at the moment.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now