Recurrent Miscarriage Support Thread 18 - tests, treatment, trying again.

[bakingtins]

Buckle up, the threads move like lightening! Tea, sympathy, information, support and combined wisdom to guide you through the maze of testing and treatment for recurrent miscarriage. Newbies always most welcome.

Please start with the traditional recap of your stats.

Thanks bootles - I'm sorry to hear about your loss too, as I am to hear about everybody's on here. Early or late, they were our little ones. And thanks to everyone for the extremely warm welcome on here.

You're right re the NIFTY - it is limited and there's a whole myriad of other things that may have gone wrong. Like you say, I'm hoping the pm/investigations will reveal if there was a different chromosomal problem. I have a real hunch that it was a placenta problem, though, as indicated by the low PAPP-A score at 13 weeks. And then there's the other three early mmc as well...

What I really can't get my head around at the moment is how on earth I managed to have my DS. Was he the exception to the rule and maybe I just can't have children due to an underlying problem or are the miscarriages just really bad luck?

sebs when you're ready, let us all know how you get on today.

pop, there is a theory that some of the autoimmune conditions can be switched on by pregnancy/birth (presumably because it has such a huge effect on your immune system, by suppressing it etc.)
I think this is one of the theories about the high uterine NK cells that Coventry test for, that they can be triggered to increase by pregnancy/birth and this is thought to increase more with each pregnancy.

For me personally, I'm starting to suspect that this is one of my issues (possibly along with the hyperfertility thing). Maybe it's just wishful thinking that they will be able to diagnose something relatively treatable!

Ps. I think the bad luck line is a crock of shit

Thinking of you today Sebs

Barking wooohooooo its great that you can start so soon, thats fabulous!

Marchgirl, I agree with you about the bad luck bit. If it is that then it would take a statistician to work out the odds...

Hope you're ok sebs

Folks, do you think it matters is I go for my day 21 test on day 22? can it make that much difference? Don't want to go down on day 22 to be told it's no use and go home

All the best for you today sebs

popandcry My last mc also was a 2nd trimester loss, found at 17 weeks. We had a great 12-week scan, but like you, really bad blood results for the screening, extremely low Papp-A. I tried to get the Harmony test done twice, but they couldn't isolate enough fetal DNA from my blood. So I finally decided to have amnio, but when I went in to have it, they couldn't find a heartbeat anymore. They found the baby had Edward's Syndrome (trisomy 18). It really destroyed me - I had gotten that far with any of my previous pregnancies (apart from DS, my very first!), and having the good 12-week scan made me feel as if I was out of the danger zone. Only to then be crushed again.
I have only recently been able to start ttc again properly, and I am petrified of the thought of being pg. It is a true 'damned if you do, damned if you don't' situation...

Feeling mega-stressed at the moment. My mum (who lives in Switzerland) had a fall yesterday and broken her ankle. She is alone, and neither of us live close by. She insists that no one needs to come, but has to rely on friends and neighbours to look after her at the moment - she can't do anything. My siblings can't travel to hers for one reason and another at the moment, and DH is away on business this week until Friday - so unless I cart DS off to the ILs or take him with me, I have no way of getting away. Currently looking at local care providers... And flights.
I'm really worried that this is just the start, she is 70 now and although still very capable and able, you can tell that she is starting to struggle with certain things...

Hey sebs - hope you are doing ok - feel a bit worried about you post op, sending you strength across the miles!!!! E x

Feel like the biggest idiot in the world. Just called our employee assistance programme which was recommended to me because I should be able to arrange some free face to face counselling sessions and the woman suggested my needs were too specific ...have I tried my gp. Of course I have but they said I would have to pay which I can't bloomin afford right now. God I just wanted to talk to a human being face to face about how I'm feeling. Wish I hadn't given my name. She made me wait for (what felt like) ages so I told her I felt silly now and I would be hanging up. I realise I'm probably overreacting but it was a tough call to make and she made me feel shit. Rant over. Sorry ladies. I just want my life back. The one full of rainbows and unicorns and happy things.

Just a quickie, MrsD, I understand that, I had a similar issue with our EAP and argued the toss with them. They are becoming more specific about it being work related (which is rubbish - of course it affects your work) so if you feel up to it, I suggest calling back and focusing on the impact it is having on your ability to remain in your job.

me2 day 22 will be fine, it's just got to be post Ov.

mrsd you should absolutely not be left feeling stupid, it sounds like someone that doesn't have the required skills for the job on the end of the phone there, you'd expect more support and empathy if you're calling for support of any kind. I called my gp to ask about counselling and was told I would be fine by the time I had got to the end of the waiting list so there was no point putting me on it... I was lucky after the 2nd mc as the clinic offered counselling (this is available for failed iui/ivf cycles as well as those that initially succeeded but then ended in mc).

Diddly - how frustrating. Was there a counsellor attached to your epu? On my miscarriage leaflet there was a number of a counsellor I could call... wondering if your local services have something similar. Hugs though - those reaching out calls are hard to make.

Thinking of you Sebs. Hope it's all going smoothly.

Cloud - I was lurking on the pregnancy thread when you went through that loss before I joined mn and I can vividly remember feeling so sad for you. I'm so sorry you had to go through that. I'm not surprised the idea of pregnancy is terrifying.

Been reading and thinking about everyone's sad histories. It frustrates me that as a group we're all lumped together when there's actually quite alot of heterogeneity between us. Why isn't research looking at different groups of recurrent miscarriers (age, primary/secondary rm, comorbid infertility, 'patterns' of mc), and trying to ascertain what works for whom instead of lumping us together? It just seems obvious that different factors are likely involved for different people.

On a personal note, I've had five miscarriages and no successful pregnancies at 32 (have I mentioned I'm 32!?). How on earth is that possibly bad luck?! Is anyone any good at stats? I'd really love to know the odds of that happening (though I do have a euro millions ticket for tonight so clearly some part of my brain believes in low odds).

It just feels that biologically that is unlikely to be down to the same factors as someone who has had successful pregnancies before and is in their 40s, though I know that in terms of grief and 'awfulness' there is no difference. I know it's terribly self-indulgent for me to say that, and I hope you'll all forgive me. I know we're all individuals in unique circumstances - I hope that rant makes sense and I haven't offended anyone.

mrsD, my EPU gave me leaflets for their counselling service - specific for mc and fertility issues and I took them up after MC4

also if you are based in London there is www.citypregnancy.org.uk/
which also specialises in counselling for miscarriage , still birth and other issues - and they are free / a charity / work on donations

Hi guys

Taking a lot of comfort from reading this thread. Isn't it a shame we don't all live close by so can have a cup of tea and a bitch about the system? I'm going for the NK killer test thanks for letting me know ladies. Unfortunately been palmed off by Gp who has referred me to general gynaecology and she thinks June is an acceptable wait but is asking to expidite. I can seem to find a recurrent miscarriage specialist for wales in NHS and changing docs and going back tomo to ask for a specific referral. Anyone any ideas pretty please I feel very lost with the nhs route ATM? Thanks x

twilight I totally agree with you. When it comes to research there's absolutely no point in lumping everyone together. For example, if you give everyone aspirin and find that on average there's no effect, how do you know that it's not actually making things worse for 50% of people and better for 50% of people, depending on the underlying cause (and you know full well there are different underlying causes)? And of course if you have baseline high odds of chromosomal abnormalities because of age, then having three in a row is more likely to be bad luck than if you have baseline low odds - and paradoxically therefore someone older with undiagnosed rmc is more likely to succeed at their next attempt without treatment than someone younger with undiagnosed rmc. I felt this keenly (I was 33 when I had my RMC consultation - I am 34 now) when I was told I was most likely in the 3 chromosomal abnormality camp because 50% of undiagnosed rmc is down to this. It's a leap of logic that didn't make sense to me at my age, whereas it might have done if I had been older, and I therefore panicked that there was a cause that I should be trying harder to unearth. I felt much calmer after reading Prof Regan's chapter on hormone defects as these chimed much more with my experience.

On stats - to get to 5 mcs you multiply the statistical chance of something happening by itself 5 times. So if you have a 20% chance of a pregnancy having a chromosomal abnormality then the chance of 5 in a row having them purely down to bad luck is 0.2 x 0.2 x 0.2 x 0.2 x 0.2 = 0.00032 or or 0.032%. Not entirely impossible - but the most likely cause? Really? I am not sure what the baseline chance is at 32 though. This site suggests 30% of eggs have chromosomal abnormalities, but most eggs with chromosomal abnormalities would not implant at all and so not lead to mc.

cloud very sorry to hear about your mum. xx

Sorry, By "this site" I meant this site, selected at random from google, and the 30% figure was at age 32.

www.advancedfertility.com/age-eggs-chromosomes.htm

YEs Mrsdiddly I agree with checking for low-cost counselling schemes - there are always ones about. Where about are you? (although it does sound like there's a strong argument to be made to your EAP for the impact on your work, although I know that making that arguments takes strength...)

Sorry your nhs referral is such a mess little. I think there are several people from Bristol on the board (embarrassingly had to look up where Cardiff was on the map compared to other places! but that seems the closest). Can anyone recommend a hospital near there for rmc referral?

Totally agree about the differing reasons / circumstances leading to mc. I still think even if you have a high incidence of implanting chromosomally abnormal eggs there has to be a mechanism for why that is happening. Just because we don't understand what it is yet doesn't mean it's just bad luck. But it shouldn't be treated the same as someone who is miscarrying chromosomally normal foetuses. Maybe some of the same processes are at play but there are also big differences.

Hope you are doing ok sebsmummy. Sorry I haven't time to name check everyone else, just a quick posting before bedtime routine kicks in. So following the confused call from the receptionist and the GP failing to call me back, I decided to email Mr Watts secretary in a bit of a panic. She spoke with him today and they have basically trusted my instinct that I am likely to be pregnant given how I fall pregnant instantly each time and they got the test results faxed across this morning from my GP and have written up a prescription for me to collect from the secretary at the hospital tomorrow, so fingers crossed this will stop my blood from clotting and mean that I stand a chance at a sticky bean. Mr Watts has cancelled my appointment with him so no chance of bumping into you Brummie :( but as soon as I can confirm a BFP he is arranging an appointment at the EPAU for me, I suppose to make sure everything is in the right place. I have some hope now that this could explain why the miscarriages happened and that this might stop any more being lost, but having lost 3 I now can't bring myself to get excited. From what I have read, this condition not only is the cause of miscarriages but a clot could stop the blood supply to a baby from the placenta and cause premature births and still births. It's going to be a long and fretful journey. I also freaked a bit that it says cancer can be a cause of the anti coagulant tests being positive and am worried I am ill without realising it but Mr Watts has said not to worry and likelihood is I am ok, he wants the test repeating in 12 weeks as he said just because I am positive now doesn't mean I will be positive for life as for some people it is a transient condition and so I might only have it for a few weeks. I have never met him but I am impressed by how he has responded to my plight. I had never even heard of a lupus anti coagulant test before, but it sounds to me like all pregnant women should have it, given that there can be no symptoms but that it can cause recurrent miscarriages and still birth.

mrsdiddly don't let the incompetent woman put you off..I hope you find a counsellor soon.

sebs I hope you are ok

cloud parents can be a worry. I hope it's a bit reassuring that she has friends and neighbours nearby to help.

longest glad you are feeling better this week. How many weeks are you now?

pop I agree with march, its one theory that immune issues are triggered by pregnancy.

march the trouble is it doesn't seem to be entirely treatable - certainly the treatment for high uNK cells didn't work for me last time, but I know it does work for a high percentage of people. At least Coventry are researching immune issues - there is still so much disagreement between consultants as to whether uNK cells are an issue or not. My money is on Coventry though.

twilight and longest I absolutely agree that we are all lumped together but with really different factors going on. Yikes those stats are hard to swallow.

twilight I am 41 with one DS and 5 losses, and I agree that our situations would appear to be different. No offence taken at all, and you're not being self indulgent. However, 2 consultants and one Registrar have told me it's most likely random chromosome issues that have been responsible for all 5, because of my age, which would be a fair theory EXCEPT 2 of mine were chromosomally normal, 1 was T22, and 2 unknown. And yes, it could be that a 'random chromosome' issue was present in all of them, and the ones that came back normal actually had obscure chromosome issues as not every single chromosome number is necessarily looked at. But this is unlikely, as per genetics counsellor. Plus there are plenty of 41 year olds who have healthy babies.

So I don't think it is just old eggs for me, and surely not for you at 32. I know I have high uNK cells, but its still unclear if that is the cause, and treatment didn't work for me. And there are other similarities - we both had losses after 8 weeks, so don't fit into the 6-8 week loss for all of them.

I'm rambling I think, but my point is that I agree, there are all the factors of age, any previous pg success, timing of loss, and so on, yet we are all treated the same.

Aah Loopy glad Mr Watts is helping you. His secretary Monica was so lovely when I spoke to her. Just gutted you didn't have your appt for 2nd March clinic as I so would've swooped in there and snaffled it a week earlier!!

You can just phone the 2 Julie's at EPAU directly and self refer. They told me their phone rings like the bat phone for women wanting scans just because it's self refer. But they told me that they will always scan anyone with a genuine need and never be worried about ringing up.

Fingers crossed though for a BFP! Keep us posted.

Twlight I know exactly how you feel, 3 mc's and no dcs yet. There must be something wrong and not just bad luck

Had a good counselling appt tonight. We talked about my plan (consultant and Coventry, acupuncture, plus lorry load of supplements) and how me and DP are literally throwing everything at it. In fact I didn't cry until the very end.

My plan is a "coping mechanism" I guess. I'm just fearful that ultimately we are dealing with nature and if you throw everything at it, and it fails. Where do you go to from there? But at the moment I can't think like that.

Sebs big hug to you I hope you are doing ok, and everyone else.

Tanny hope you are remaining as calm as you can

Loopy my sister also said about Mr Watts that yes he's older, and he's an old skool type consultant but he treats each woman individually because he has the years of experience behind him. Apparently he doesn't bow down to NHS guidelines. He prescribes the treatment HE thinks will work best for that particular situation. Glad he's worked out well for you.

I am 41... And didn't even start trying till 2010 when I was 36...

I also agree about the ridiculousness of lumping everyone together. One interesting thing about the ivf is that they will be able to look at the embryos as they develop (they're doing the timelapse cameras) and we might get some information about why I can't get pg naturally /why our two 'successes' were lost. If a healthy embryo goes in but it doesn't stick they can assume implantation issues, if I don't get enough eggs it's my ovarian reserve, if the embryos don't get to blastocyst then it could be egg quality etc. Part of me doesn't want to know, I just hope it works and there's never a need to disect it.

Hope you're now hone and comfortable Sebs

Sorry about your mum counting, I get the same with my dad.

Hello all

Haven't RTHT but was in active so clocked it and thought own experiences may help. Now have 3 DCs and no plans for anymore but had c.6-7 early miscarriages between each successful pregnancy.

13 years later - and seemingly wholly unrelated - have been v poorly for long time; shortest version is that my 'get up and go' got up and went!

After best part of 2 weeks in hospital, have been diagnosed with hypoadrenalism (secondary, so not Addisons, the one where your adrenals are WHOLLY fucked) and secondary parathyroidism (arising from my body continuing to try and function when Endocrine system - in joy of retrospect - already screwed.

Was very startled to discover quite how many Doctors asked me if i'd had miscarriages as manifestly the presenting issues now (only got out of hospital last Thurs) had jack all to do with TTC, but transpires all are linked and they have now expalined WHY I had so many miscarriages (I'd just assumed was unlucky but never sought help as WAS lucky enough to have 3 successful pregnancies IYKWIM).

However... IF had known then what know now then i would have got myself to an Endocronologist ASAP or demanded my GP refer me if I hadn' got health cover and refuse to leave until had referral

The things that I now know affected me were: hypoadrenalism (doesn't need to be as Acute as Addisons to impact TTC); parathyroidism (ditto); STUPIDLY low levels of Vit B12 and B6; and literally wholly depleted of Vit D.

No clue if this will help anyone but would rather write than read and run. Huge good luck to all of you