Recurrent Miscarriage Support Thread 29 - Support for Tests, Treatments and Trying Again

[barkingtreefrog]

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread here

Link to the RMC investigations information

Stats update:

allthereis: 29. DC, 4MC
anniehoo: 42. TTC#1 for 2.5yrs, 4MC
barkingtreefrog: 36. TTC#1 since Dec 11, 2MC
bettybutterchops: 40. DS, 3MC, pg
bootles: 41. DS, 1TFMR, 4MC, pg
brummiegirl: 38. TTC#1 since Apr 14, 3MC, pg
bubblybubbles80: 34. TTC#1, 3MC
bumblebee0: 29. DS, 2MC, pg
bunnymad: 40. DD, 2MC
bythesea82: 33. TTC#1 since Dec 12, 3MC, pg
casiopeia: . TTC#1, 3MC
chrystley: 41. DD, 5MC, pg
cloudjumper: 43. DS, 4MC, pg
confu3ed: 39. DS, DD, 5MC, pg
desperatelyhopeful: DS, 10 MC.
emerald72: 43. DS, 3MC
enlightenedbunny: 34. TTC#1 since '10, 1TFMR, 3MC, pg
erica21: 32. DS, 2MC, pg
extrablessings: 33. DS, 6MC
fackinell: 44. TTC#1, 4MC
fififolle: 37. DC, 2MC, pg
flen: 36. TTC#1, 3MC, pg
floweroct: 34. TTC#1 since 11, 3MC
frecklefire: 40. DS, 3MC
genwah85: 29. DS, 3MC, pg
girliesaints: 37. DD, 4MC (1 twins)
girlinoz: 32. TTC#1, 3 MC
Ifinishedthebiscuits: 37. 2DS, 4MC
iloveyoubaby: . DD, 2MC
inamaymaybewrong. 37. DS, 2MC
jady77: 37. TTC#1 since Sep 14, 2MC, pg
kazz2112: 31. TTC#1 since Feb 14, 3MC
lauren83: 31. TTC #1 for 7yrs, 2MC (1 twins)
leah1984: . TTC#1, 2MC
loopyaboutmy2boys: 38. 2DS, 6MC
lovemylittlebear: 29. 1 ectopic, 2MC, pg
marchgirl: 37. DD, 5MC, pg
maverick79: 35. TTC#1, 2MC, pg
me2me2: 2DC, 2MC
mimidoddrioni: 35. TTC#1, 2MC
minnie74: 40. DS, 3MC, pg
monten: 37. TTC#1 since Apr 13, 1TFMR, 1MC
morganlefey: 29. DD, 3MC
mrsb0710: 29. TTC#1, 2MC
mrsconfusion: 36. DD, 3MC, pg
mrsdiddlydoo: 34. DS, 2MC, pg
notspartacus: 39. 2DD, 2 ectopic , 3MC
onedaymaybe1: 32. TTC#1, 3MC
onestep2015: 39. TTC#1 since May 13, 3MC, 1 ectopic /PUL
patienceisvirtuous: 37. TTC#1 since Mar 14, 2MC, pg
peqpit: 33. TTC#1 for 2yrs, 3MC
portmoon: 43. DS, DD, 5MC
sallywade: 36. DS, 1TFMR, 5MC, pg
sashakerr: 37. DS, 3MC
sebsmummy: 40. DS, 3MC, pg
sizethree: 35, TTC#1, 3MC, pg
snoopysimaginaryfriend: 29. TTC#1 since Sep 14, 3MC
spamminit: 25. 2DS, 2MC
strubidooo: 34. TTC#1 since Sep 12, 3MC, 1 ect
sunandrainbow: 38, TTC#1, 4MC, pg
teach3: 27. TTC#1, 3MC
texta: 32. TTC#1, 3MC
thepopandcry: 38, DS, 4MC
thornfield38: 34. TTC#1 for 2 yrs, 2MC, pg
tomcat81: 34. TTC#1 since Oct 14, 2MC
twilightstruggle: TTC#1 since Nov 12, 5MC
wadsy: 36. DS, 1 ectopic , 4 MC, pg

ourdaywillcome
daisybell

Thread babies
bakingtins: 40. 2DS, 4MC. Faith born May 14
tannyloo: 42, 2DS, 5MC. Bertie born Mar 15
tinytear: 41. DD, 5MC. Alice born Mar 15
justonemoretime: 39. 3MC. Scott born May 15
purplefrogshoes: 38. 2MC, 1CMP. John born May 15
longestlurkerever: 34. DD, 3MC. Beth born Jun 15
catlover2014: 35. TTC#1 since 09, 3MC. Louis born Jun 15
boozle80: 34. 3MC. Mhairi born Jun 15
belleende: 40. TTC#1, 2MC, 1 TFMR. Cissy born Jun 15

clairemorgan who's Helen?!

Evening all

I'm madly trying to catch up after being on holiday. Welcome to all the newbies - I am sorry you find yourselves here, but, given our situations, I can assure you it's the best place to be!

Minnie I am so sorry to hear your news. You're in my thoughts and prayers.

Waves to everyone else!

As for me, I have an early scan tomorrow (9 weeks). I'm not feeling remotely optimistic and, on the past three occasions, my gut instinct has been correct - the lights are on but no baby is home. I've never seen a heartbeat... or even an embryo that measured correctly. Oh well. I shall let you know how it goes and - at the very least - this fourth attempt has been a good experiment in 'one last go before we see the recurrent miscarriage specialists'.

Speaking of whom, we have finally been given our appointment at St Mary's (Manchester) Recurrent Miscarriage Clinic at the beginning of October. So, at least when tomorrow goes tits up as expected, I will have something to focus on... and hopefully a useful purpose on this thread in terms of sharing information about treatment.

I am feeling remarkably calm and resigned this evening. I feel I know what's coming. I just have to face up to going in to that darkened room (again), waiting for the awkward silence and serious face of the sonographer (again) and the bad news (again). Sadly, I know that so many of you know exactly how I feel.

Nonetheless, I'm sending my most positive vibes to everyone this evening. I hope that, in amongst the crap of this relentless journey, there is some joy and some colour in your day today. :)

getting confused with fb thread names I think barking x

Hello I'm new to this thread...but not new to recurrent miscarriage. I've read about so many experiences...firstly I'm sorry we're all here, but importantly I hope to share information that helps someone else if I can. It can be a very isolating situation, and after a few years of keeping a lot of it holed up inside, I am getting better at leaning on my friends and family. Essentially though its down to us and our significant others not to be defeated by this.
We have just had confirmation of our 5th loss. Which is still not over as I've opted for waiting to see what happens naturally - I had an EPRC last year and just don't want to do it again.
I had 4 earlier miscarriages - two of which were 'blighted ovums', the other two were too early to know much, but definitely pregnant, and definitely gone soon afterwards.
This one is different. The scan just yesterday showed an embryo measuring 7 weeks and 5 days, no heartbeat, and a large haematoma next to the pregnancy.

While we hold on some hope that we have finally managed to create a living thing - part of us (and I can't bring myself to look again but it was certainly more baby-shaped than I had prepared myself for), the heartbreaking thing is that my body did something to it that stopped it surviving further. Has anyone experienced this?

So pleased the appointment went well barking. Really hope your mil understands the full costs and is still willing to help . Now someone mentioned there was a way to do the chicago tests on the cheap. (ie send away bloods for them yourself) I can't remember who, but maybe if you ask on the fb, or search the last couple of threads for chicago you might find it. It perhaps won't shave much off the cost in the grand scheme of things, but every penny counts right?

I'm really hoping with all my heart that you are mistaken oneday, and that you get a lovely surprise tomorrow. I'll be keeping everything crossed for you. What time is your scan? Glad you also have your rmc appointment, but let's just hope you don't need it xx

If you want to join our secret fb group (started whilst you were away) then pm me your fb name and a description of your pic and i can add you.

Welcome hels, but so sorry that you find yourself here and that you are going through another loss. I've also had 5 mcs at varying stages. Two v early ones between 4 and 5 weeks, two between 8 and 9 (although one of these died shortly after a scan at 7 and the other measured 5 weeks), and one at 12weeks, but measuring 6, so like you, a mixed bag. It's heartbreaking and just so draining to have this happen over and over again .
Have you had the standard rmc testing on the nhs? And have you had any other testing? I know this is probably the last thing you want to think about right now, but if you are able to collect what comes out when the embryo passes then it can be very useful information to have this tested for chromosomal abnormalities. I know this is a horrible thought, so sorry to mention it, but if it helps to fill in the blanks, it might be worth it if you can bear it.

I ended up getting a uterine biopsy at the implantation clinic at Coventry, where they found i have high levels of uterine natural killer uNK cells. This causes an inflammatory response in the uterus which can cause nonviable eggs to implant when they shouldn't and means the placenta sonetimes doesn't form properly and cannot support a healthy pg. There are lots of Coventry pom pom wavers here with positive stories. I am currently 10 weeks pg on their protocol of steroids, heparin and progesterone. It might be something for you to consider when you are beyond the awfulness that you are going through right now. In the meantime, big hugs and i hope you have lots of support irl x

As a newbie I have no idea about etiquette and didn't introduce myself/stats - here they are:

Me and DH -35
TTC since 2012
5 losses -
3 x mcs Sept 2012; Aug 2014; Nov 2014
2 x mmc April 2014; (break from TTC from April to Sept 2014; and Nov 14 to March 2015) Aug 2015

Bloods - no causes found
NKcell biopsy - normal
Last pg with progesterone (cyclogest)
mmc April 2014 - testing on pregnancy tissue but no chromosome abnormalities found
Never been offered karotyping for us both

Welcome hels and so sorry for what you've been through. The women on here are a wealth of both support and knowledge. Have you had any of the NHS testing?

barking really pleased it was useful, a friend of mine had the Chicago tests and I think they were useful. (She also had her cytokines tested which is where the problem lay for her.) But very glad it was positive.

oneday I'm so sorry to hear you are feeling so sad and wishing with all my heart that tomorrow does not bring what you dread. Hugs.

I wrote a new blog yesterday for those interested, it is about being pregnant post rmc in case you want to avoid. thingsaboutmiscarriage.wordpress.com/2015/08/25/things-about-miscarriage-number-34-being-pregnant/

march thank you so much for the response. So sorry to hear your experiences yes we are very similar! Awful but what a relief to meet someone who knows! Got everything crossed for you!!:)
I've added a little more info in a follow-up message. I had nk cell testing earlier this year at Liverpool with Mr Gazvani but I have noticed the number of Coventry supporters!
He advised it was so much in the middle of the normal range he wouldn;t advise further intervention as it risked lowering nk cell activity and too little is as bad as too much.

We've had the standard tests on the NHS as far as we know. I know we had chromosomal testing on the mmc in April last year. There wasn't much tissue and no embryo but they apparently were able to conclude no abnormalities.

I'm doubting my choice already this time I was awake all of last night - the midwives didn't suggest testing but that's perhaps because I'd been very clear I didn't want interventions this time. I don't know if I could face it, I have an appointment to go back in 2 weeks and can go back earlier if I want. I will think about it some more. They think the cause was probably the haematoma overwhelming the pregnancy.
I think OH and I should have been offered karotyping at an earlier point but weren't - I asked my gp about this over a year ago and they were worse than useless!
We're at the end of our tether with the NHS its just really difficult to know what to do now.
The new thing this time is the haematoma - Mr Gazvani suggested clexane injections (blood thinner) to try before I was pg, but I wasn't convinced. I have no blood disorder that I know of from other tests. We had progesterone which was prescribed some time ago so tried that this time. The midwives at my scan seemed to think that progesterone would not be the cause of a bleed, but asprin or another blood thinner may have exacerbated any bleed in the uterus, so I'm at a loss. I absolutely hate to say it but 'bad luck'? Bloody God-awful luck.
I have support luckily - my poor hubby looks exhausted today I'm waiting til he comes in from work to give him a huge hug!
xxx

Flen thank you so much. I follow your blog and it inspired me to do my own last year. It really helps just getting it out onto a screen! Best wishes on your happy news got everything crossed:)

flen what a lovely blog post. It's made me cry.

hels I've heard Mr Gazvani knows his stuff. For what it's worth, Coventry prescribe heparin not just for clotting problems but also because it has what they call a "cytoprotective" effect on the developing blastocyst and placenta. The haemotoma does sound like just terrible, horrible luck. I think they tend not to bring up karyotyping unless there has been evidence of a chromosomal problem - if you've had one tested and it was chromosomally normal, this indicates there are no problems there (at least that's my understanding). I know for me the ERPC was a good option when I had the choice precisely because I wanted the baby tested, not because it would necessarily "diagnose" anything, but so I had all available info. So many hugs to you, it's just absolutely heart-breaking, and I hope you have a lovely big hug with OH when he's back.

I'm on holiday with v little phone signal so catching up in snatches when we get closer to civilisation. That plus mumsnet hacking/login issues feels like enforced detox... . I miss you all! Welcome newbies, you're in the best place for cheer leading and hand holding.

flen that blog post says it exactly. You are a wordsmith. Hugs.

Epic blog post, flen. Says it all. Devastating and heart-warming at the same time. Perfect. Thanks for sharing.

Hello - I've just had tests come back with Dr Shehata showing high levels of NK cells activity and he has put me on his treatment programme of 25mg of prednisolone from ovulation plus other bits.

I'm feeling uncomfortable for a few reasons, firstly at taking the prednisolone from ovulation, secondly at the level of future costs that will be incurred via his programme. We really can't afford to pay out much more after what we already have on the initial tests. Plus there is the travel - he is in London whilst I am based in the Midlands.

So, I'm after alternatives and am wondering if anyone hasn't continued the treatment programme with Shehata but elsewhere?
Can anyone recommend a consultant in the Midlands?

I'm also thinking I might just be better to go to Prof Quenby in Coventry. She is local, it's a one off fee and I'm more comfortable I think with her treatment programme. Does anyone know if she would prescribe her treatment programme on the basis of the results from Dr Shehata?

Argh, it's all so hard. Just a bit of background, I've had 3 miscarriages at around 11 weeks, then my lovely daughter, then another miscarriage this year. I'm obviously blessed to have one and am wondering if I should just count my blessings and give up, it's all so painful and my head is spinning. I've basically been told I don't have much chance of success without treatment, but I can't really afford the treatment.

Any comments/experiences would be greatly appreciated. I've tried to read a lot of the thread but just haven't got the time to go all through so I'm sorry if I'm going over old ground.

Okay, my head is exploding - just spent over an hour reading all the information from the clinic and going round and round in circles.

I asked about immunology etc. We were given lots of information including this paper which is pretty inconclusive but dates from 2008, so not that up to date.

In their own literature they say that up to two-thirds of early pregnancies miscarry (the highest figure I've heard) and chromosomal abnormalities are the major factor, but it mentions the possibility of the women's immune system compromising successful embryo implantation in the case of failed IVF or early miscarriage. The consultant stressed that the research is in the early stages and many possible treatments are not universally accepted.
They suggest that the following couples are at increased risk and should consider immune testing:
a) women over 35 who have had 2 mc or 2 failed IVF cycles
b) women under 35 who have had 3 mc or 3 failed IVF cycles
c) less than 6 eggs from an IVF cycle
d) unexplained infertility of over 3 years
e) previous pregnancies resulting in small babies
f) repeated mc while trying to have a 2nd child.

I can tick both 2 mc and 2 failed cycles in a), and d) as well, so seems like a good idea.

After research so far though, my conclusion is that CARE are expensive! From what I've read (I've now read a lot) the Nottingham clinic are the leaders in the field, and the consultant there worked closely with Chicago, but the consultant we saw works closely with the Nottingham bloke anyway...

However, just referencing our lovely spreadsheet and the info from Dr Shehata (is that Lister?) I can see that some tests are the same but more expensive at CARE.

These are the tests we've been recommended/quoted:

TH1:TH2 ratio abnormalities £590
C4/M2 variant £155
MTHFR £160
PAIP Gene Polymorphism £176
Auto Antibody Profile 1 £108
NK Panel £670

Just these add up to over £2000!!

The TH1:TH2 is apparently £350 at Lister rather than £590 at CARE which is a significant difference! (although I don't know whether you can just rock up for tests without paying for a consultation, and I don't particularly want to travel to London). This is one of the 'Chicago' tests though, so one that you can also get done yourself directly with the hospital cheaper, you just need to fedex your blood across. Haven't found all the details yet, that's a job for tomorrow...

The other level 2 /Chicago test is the NK Panel and I'm really torn on this one and could do with some advice - if my nk cells biopsy came back as 'normal' is there any point doing the nk blood test? I do understand they are different, but is it worth £670 if nothing showed up in the biopsy?

The treatment for the C4/M2 variant seems to be heparin - but I'm going to be on this anyway due to the factor v leiden thrombophilia, so it seems pointless getting tested if I'll be having the treatment either way?

Boo I just lost my post.

In summary...

Happy holidays mrsC

Welcome hels for what it's worth quite a few of us have been on heparin with no clotting disorders care of Coventry.

Blimey barking no wonder you're mind's spinning. So much to think about. I don't see the harm in shopping around for tests. Mr S is based in Surrey. Not sure this is is where the Lister is. I think more ladies get a high result from blood nk testing than uterine.

flen heart your blog. And sea urchin. The post is perfect. At 24 weeks we still daren't believe this is real and still end our sentences with ' if there is a baby. '

Saw a little girl again today who was born at 27 weeks (4 yrs now) and starts school in September. She's perfect. Miracles can happen and clearly do sometimes.

red could you phone or email Coventry and enquire if they would follow your current treatment plan?

Briefly...will catch up properly later..

barking glad your appointment went well - for what it's worth, obviously the ivf side of things is pretty crucial to you so if it helps to get it all down on here, I for one am very happy to read and digest it, rather than you feeling you just have to filter out to the RMC stuff. I am going to google all those tests later, but also reckon if you can shop around why not - if it's possible to do that. Great that the MIL is helping out and that she understands.

flen I stopped the heparin at 12+4 I think, and the progesterone I phased out over a week (meant to do it longer but ran out). It was the pred that most worried me, and phased that out slowly to.

hels and red hello and so sorry for your losses and that you find yourself here. Argh I have run out of time - will respond properly later. Sorry to run.

one day big hugs and hand hold for today, really hoping it's not what you fear x

hels I haven't been there, but it has been recommended to me by someone I trust (I'm not in the Midlands, but I am from there...) www.midlandfertility.com/

Just a really quick one as I am on holiday and technically not supposed to be on here but just wanted to say good luck oneday. I really hope it is good news for you today.

barking crikey no wonder your head is spinning. I'm afraid I am not much use as never had nk testing or anything like that. Did you speak to mil about costs? That's interesting what you discovered about her own battles for DH. Had she never mentioned it before? No wonder she understands.

Welcome newbies. You've found a good place.

Waves to Everyone else - I will be back and posting much more here regularly from next weekend. I haven't decamped to Facebook. Just trying to think of other things while I'm on hols. Still lurking a bit tho .

One question while I'm here - if you have a natural MC, is it possible for that to be CD1 and then to ovulate as normal on CD14? I'm sure I felt ov pains last week on CD14 but don't want to get my hopes up that I am in the 2ww. Every other time I've had surgical management and pretty sure never ovulated in the wtf cycle.

Quick place marking as it dropped off my active lists x

Flen, just read your blog, are stripy pants the new fox socks?

I've been wearing my fox socks and fox pants to every scan

Hi all, it's been ages since I've been on here but I could do with some advice from your collective well of wisdom and knowledge.

I'm being seen at St Marys RMC in Manchester (#One day#, they're are really good there but fingers crossed you won't need to see them). They've prescribed progesterone pessaries which I've been taking since just after OV, AF was due yesterday but hasn't shown up yet and I'm getting BFN on my HPTs. I haven't had any of my usual AF symptoms and I've heard mixed things about whether the pessaries can prevent your period or not. Anyone else used the pessaries and had delayed AF?

Keeping thinking I might just be pregnant but also think it could the pessaries messing my cycle up, argh!