Recurrent Miscarriage Support thread 14 - tests, treatment, trying again

[Justonemoretime]

Information, support, hand holding, tea, sympathy and a hell of a lot of combined knowledge - all welcome as we try to make sense of the RMC roller coaster of tests, NHS admin, heart ache and (hopefully) happy endings!
Please start with a recap of your stats :)

To answer some of your questions I was taking aspirin during the successful pregnancy. Maybe that was the missing link this time. I'm interested to see what might have changed in the years since I was last treated, my treatment this time may be different. I pulled out all of my notes from last time and they recommend taking Vit D3 and omega 3 so I've started taking them again. I'm open to taking Agnus castus, I was on a ttc after m/c thread when I m/c'd last and a number of the ladies on it found it very beneficial for regulating their cycles after m/c. Clomid did not suit me at all. Apart from the fact that I was emotionally all over the place, when I had follicle tracking on it they saw a 'classic string of pearls' cyst pattern on my ovaries which suggests PCOS but I never had any other symptoms of PCOS so I suspect that the Clomid had an effect on that.

I don't know if having a tilted uterus had an effect on my miscarriages. They say that it normally corrects itself during pregnancy, right now I don't know if I still have one or not but hope to find out in the coming weeks. I remember research I did at the time seemed to suggest that it might.

It's funny, you guys all seem to speak the same 'language' as me. It's like I've found my spiritual home!

Hi scarlet sorry you find yourself here.
I totally agree about finding people who understand you. This board has been vital in helping me feel back in control. It's not the same talking to people who haven't been through this. When I Start wittering on to other friends about this or that theory or treatment they just look a bit scared!

Hello all. I've read a lot of this thread now - congrats and good luck to those currently pregnant, and I'm so sorry for the many miscarriages and hard times experienced by others.

I have just had 2 mcs close together. One was discovered at a 6 week scan and seemed to have got to 5 weeks. The other was a natural miscarriage in the 6th week but a scan barely showed anything so it was a chemical pregnancy and must have failed very early.

What I'm wondering is, if the pregnancies failed so early, does that mean it was more likely bad luck than an issue with me?

Any advice gratefully received.

monten I'm not sure exactly what other issues Coventry covers, but as baking says, it's an implantation clinic. However many of the patients have suffered RMC. I'm currently pg having been found to have high NK cells there (though still early days). Prof Brosens talks a lot about how the uterine lining prepares and how it needs to be both receptive to a pregnancy but also selective so that 'defective' embryos don't implant. Sorry I can't think of a more clear way of putting it at the moment...

scarlet I have a tilted uterus but have always been told its a normal variation, no issues. I believe in pregnancy it tilts forward after about 12 weeks, but goes back again afterwards. I have a DS, and still have a retroverted uterus.

me2 sorry that you find yourself here, and for your losses. It's really impossible to say without any testing where the issue may lie. Both chromosomal, and other issues can lead to early losses. There are several people on here who have pushed for investigations after 2 mc rather than waiting for a possible 3rd, after which you can be referred to a recurrent miscarriage unit. I'm sure they will have some advice, but I'd say go to your gp and see if they can run some basic tests eg thyroid, clotting, hormonal. Sorry to be brief, must sleep!

Morning all and welcome scarlet, montem and me2.

I am one of the ones currently pregnant after Coventry. They also said my lining was on the thin side when I went but on the other hand I might have hyper fertility as I fell pregnant very easily.

Implantation can mean thing go wrong from the start. Have been to a 7w scan and they measure 5+6 and say come back in a week when in my heart I know it's already going wrong...

Hi me2 and sorry you find yourself here. It's such a horrible limbo at 2 as they normally refuse to do any tests until after 3 (though it's definitely worth asking). I felt like they were just waiting around until i had the third, which was a horrible feeling, but actually it's because you still have such a very good chance of a healthy pregnancy next time with no intervention.
It's hard to say whether it's just 'bad luck', although I personally find it difficult to believe that line, I think it's just a process that they don't understand yet.
As bootles was just saying to monten, brosens and quenby have a theory that some people's uteruses (uteri?!? ) might accept eggs that are unsuitable, such as chromosomally abnormal ones (ones that would normally be considered 'bad luck'). But there are so many other processes it could be as well, hormonal, immunological etc. Best to rule out what you can of the known causes and then think about the lesser understood things.
But saying all that, let's hope you are one of the ones who go on to have a normal pregnancy next time. The ladies on here are great for advice and hand holding, which is a great support.

Hi me2 and sorry for your losses. A second miscarriage is hard to come to terms with, easy enough to accept one dose of 'bad luck' but more difficult a second time. A lot of women who have 2 losses do go on to have a baby without any treatment, but there is the nagging worry that you are actually one of the 2% of couple that will suffer three. I'd agree with the others that it's worth asking if the Gp will run some tests to rule out the simple things like thyroid, diabetes, abnormal clotting. If, God forbid, you did miscarry again, I would really push for genetic testing of products ( which if you tend to miscarry naturally might mean trying to catch them at home) as the NHS seems to go 'bad luck, very bad luck, extremely bad luck, you are hyperfertile' when their tests don't come up with anything, without actually testing if there is a genetic basis for the losses or if there really is a maternal problem, and if you miss that opportunity at the time you are none the wiser.

Hi me2 sorry you've been through this. Two is a hard place to be, and there are a few women here who've had two and trying desperately to get information before TTC again. I understand statistically why the NHS only tests after three, but it feels like more could be done to support us after two.

I'm afraid I don't really buy the bad luck line, but they were still trying to tell me that after four and five MCs, so I'm a bit jaded! It is worth reading back through this thread a bit, as some of our stories might ring true with you.

Remaining hopeful has been very important for us all, and we have all gained strength and understanding from being here.

I am a RMC success story still touches wood as she says it and am currently 28+5 weeks following five MCs, and if I can do it, there is hope!

Thanks everyone. And thanks Baking for pointing me to this thread (from another thread - I was under a different name as for dull reasons I have ended up with 2 accounts depending on my device).

A bit more detail: I have had 2 dcs over the past 3 years so am very lucky. It also makes me think that I should be able to rule a few thiings out, but not sure what.

Reading back through the thread (I have covered a lot of MN and google n the last week), I am wondering about thin lining. I had an erpc after 1st mc and my period after that, which came a little early (28 days rather than 32/33), was lighter than normal, and my mc this week has been no more than a period - no clots (sorry TMI).

I can have tests since by chance I have insurance. Which ones should I ask for? tbh I am v reluctant to do karyotyping but would like to know before we start again if there is some imbalance in me.

tanny congrats on 28 weeks. Must be a huge relief.

I'm rushing out now. Thanks everyone for responding

Not sure if my logic is clear to follow: I mean could the lighter-than-normal period and absence of tissue in mc relate to thin uterus lining or am I just letting my imagination run wild?!
I do temping and have a biphasic chart but my pre-ov temps are higher these days than in 2012. (writing this down does make me think I'm over thinking this)

What I did was book an appointment with a private consultant - look for a gynae one with an interest in miscarriage, and they will organise blood tests and a scan. They would prob include hormone tests (FSH, LH on CD2 and progesterone 7 days post ov) and a scan in your luteal phase which assesses your uterus and ovaries.
Having previous successful pregnancies rules out structural issues with your uterus, but not much else because most other things can develop over time e.g. It's common for thyroid issues to start after having a baby, NK cell issues are 'triggered' by something and then get worse with each subsequent pregnancy.

Hi me2 - it's so easy to overthink things. But it's impossible to know when we're overthinking things and when we just know our bodies well and know something isn't right. I'm afraid I don't have much advice as I'm early in this process too. I have also had two losses, although I know they were both chromosomal. For some reason I got referred to repeat miscarriage clinic after the second so am in the nhs system now.

catlover thanks for sharing that. Do you mind me asking what the hysterocopy is for? I'm so confused after seeing that private consultant. I went to doctor lower as I was worried about light yet painful periods which I thought could be Ashermans. He did a scan and said it all looked fine. But then still 'strongly' recommended a hysterocopy at £5k!! I don't really understand the likelihood of him finding adhesions on a hysterocopy if he couldn't see them on a scan.

tanny I remember you on a thread getting your BFP when I had just had my second MC. So exciting that you are now 28weeks!!

Just been to see my nephews - including one who was born a month before my first would have been. It's tough seeing them getting ready for baby's first Christmas. I know Christmas is tough for a lot of us

I've seen hyperfertility mentioned here a few times and I'm wondering if I could have some more information on it? In the case of my 3 m/c's I fell pregnant first time trying and I'm beginning to wonder if this may apply to me. Many thanks.

Welcome me2. So sorry for your losses. I echo what everyone else says. Whereabouts in the country are you? I saw Mr Rai at St Mary's in London privately. He tested for thyroid, insulin and various clotting disorders and then when I got my nhs referral they also sent me for a saline scan to check the shape of my uterus. I also wanted the hormone tests Baking mentioned but got pregnant the cycle I was due to be tested.

Your hypothesis about thin lining sounds feasible. I wondered the same thing for similar reasons but never had a scan at the right point in my cycle. Coventry would look at this but we have normally gone there if the normal rmc tests have come back clear. If you scroll back through the thread you will see we were discussing this the other day and some people had handy tips re supplements Tec that can help.

How is everyone? I am ok except dh has no appointment yet so feel a bit in limbo. They rang to warn they might breach their two week target which would mean just before or just after Christmas. Might in some ways be better if it's afterwards now as otherwise rather disrupts our plans. He is feeling a lot better so we're both feeling calmer but would be nice for him to get the all clear.

Saw my two friends who have due dates around when my last mc would be due. They are very pregnant now and talking birth plans Tec. Felt surprisingly sad for the loss of that pregnancy even though, as far as I know, this one is going well. 16 week appointment on Wed. Am hoping they'll listen to the heartbeat though know this is against the latest guidelines for cost reasons.

Longestlurkerever, I bought a Doppler for use in my successful pregnancy and I found it brilliant for easing my anxiety. My placenta was to the front which meant it took longer for me to feel movement and when I did it was not as strong as it was like having a pillow between the baby and my stomach. They are not for everyone and some people find that they bring more anxiety but I found it brilliant.

Scarlet, its basically the idea that your uterine lining is out of synch and so your receptivity and selectivity are not balanced as they should be. This means that you accept fertilised eggs which are not top quality and which your body would normally reject without you ever getting a bfp. These inevitably fail within the first couple of weeks either as a chemical or very early mc. I suspect a few of us have been somewhere at the hyperfertile end of the scale. Unexplained infertility is sometimes thought to be at the other end of the scale where receptivity is very low and so is selectivity. I'm sure its more complicated than this, but hopefully this will give you an idea of the theory.

Are there any tests that can be done to detect it do you know justonemoretime? Thanks for your response.

Thanks scarlet. Actually I have one but am not brilliant at using it. It takes a while to find a hb and I am not 100 per cent convinced I am hearing the right thing. It is better than nothing though x

Not specifically, I don't think, but they seem to suggest it based on your pattern of losses. At Coventry they suggest progesterone from day 21-28 to carry on after bfp, and the uterine scratch from the biopsy to improve your lining quality, which they think can correct the imbalance. Lots of ladies here with success from that. I think I was a borderline case as I didn't conceive in the 3 months after the scratch, so was told to only have progesterone from bfp after 3 months of trying with. I'm on it now, though, and the heparin.

Longest, glad your dh is feeling better and hope your appointment comes though at a time that means you can still enjoy Christmas. Quick question, how does not listening to the HB at the 16 WK appointment save money? The cost of the wipe to clean it between patients? Sorry if that's an idiotic question!

What annoys me about the 16 week not listening to HB thing is that you can't feel kicks with any certainty, so why not reassure with a listen? My MW used the Doppler at 16 weeks and about 10 times since! Any time I feel anxious, they invite me in for a listen.

Longest I'd definitely ask to have a listen. With your history I really can't see what possible reason they can give you for not!

Monten, lovely you remember!

Scarlet I've been described as "super-fertile" by my consultant and Prof Brosens. I conceive very easily, as soon as I start TTC, but I understand that whilst receptive, I am not selective, so I miscarry later when my body recognises them as duffers. I actually believe that my thin lining has also caused some of them to fail rather than having five duffers in a row, so I think they're linked. But I'm not medically qualified, just been overthinking for a couple of years.

It's no coincidence that a lot of us are more vintage than the usual reproducing population, so there might be definitely a link between age and this type of MC. Age seems to be the elephant in the room.

I don't know of any tests, as has been said, but my diagnosis is based on my experience. My thin lining was detected through scans whilst pg and a scan mid-cycle.

Hope this is of some use.

The not listening at 16 weeks isn't a cost thing, it's because it's sometimes difficult to fnd a HB at that stage yet policy is not to scan if it's not found, so potentially you really worry someone yet say they can't have a scan and have to wait until 20w thinking something is wrong. IME the MW will offer to listen on that basis, and mine found HB v easily which was reassuring. Ask, they'll probably oblige. Let's face it, if any of us were worried we'd be straight off for a scan whatever it cost.

The 'superfertile' thing annoys me a bit. I don't doubt it is a thing, but it's become another fobbing off mechanism because there isn't a test for it. I was told I was superfertile based on my losses without any of them being tested. Actually since my losses were happening > 8 weeks with HBs that seems unlikely. When the 4th one was normal the local RM lot were I'll let Coventry off the hook because they back it up with an action plan to try and improve things. It's a shame that genetic testing of products is so expensive and that you have to be in the know, and sufficiently together at the time you are actually miscarrying, to get it done. Done much earlier it would blow a lot of the 'bad luck' bollocks out of the water where there really is a problem, and reassure the women who really have had a genetic problem that they will likely be ok next time. I know that can't happen when there are cancer treatments not being funded, but still...

Sorry, that was a shortcut to mean that they decided trying to listen to the heartbeat caused too many unnecessary scans if they couldn't find it but what price reassurance eh? Is AGES between 12 and 20 week scans x

Aha, that makes more sense. I was seriously questioning the value for money of those hygiene wipes to freshen up the doppler...

I'm getting confused: if genetic testing of miscarriage is found to be normal, does that mean there is another problem? Can it just be bad luck, nothing actually wrong?