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Should I get tested for recurrent miscarriage or try again?!

(13 Posts)
teaandchocolate Tue 25-Sep-12 10:24:56

I am driving myself mad with this as I just can't decide whether to try again one more time or pour my energy into getting as many tests done as possible. I think I'm ovulating today (so need to make my mind up!) and previously I've always got pregnant immediately (maybe part of the problem?!) which is why I'm so convinced I can't just see what happens.

My history is: mmc at 12 weeks (8 wk size & saw hb at 7.5 wks), DD (normal pregnancy except for gestational diabetes), mmc at 9.5 weeks (7 wk size, found to have triploidy), natural mc at 7.5 weeks.

I have had karyotyping done (& DH) which was normal as well as thyroid function, full blood count, sugar levels all normal. Have pcos but am ovulating. NHS cons will do 'thrombophilia' tests next month although I don't know how comprehensive these are as am waiting for the paperwork. So I need to decide whether to wait and get the NHS thrombophilia tests and probably pay to go privately and get other tests done for other clotting issues and NK cells (as think might as well if I'm waiting) but I know that the NHS results take at least 6 weeks to come back and might need repeating.

I just can't decide whether to have one last go as feel in a total panic that I'm running out of time - irrational I know as DD is only 2.2 but have become fixated that I need to have a baby next year....however, I am also terrified of another mc and would be so annoyed with myself if I have another one then have to wait ages again for tests. And if theres a problem I guess I'd rather know.

So sorry for long rambling post I just wondered if anyone else had had similar dilemmas and how you decide when to stop TTC and focus on testing instead. I feel this irrational compulsion to TTC when I ovulate and can't make decisions!!!

Irishmammybread Tue 25-Sep-12 12:31:18

Hi, I understand your dilemma!
I have had three MC in a row this yr, one at 10/11 wks in March, tried again after next AF, conceived, MC at 6 weeks, didn't wait to ttc,conceived immediately but MC at 12 weeks at the start of Sept(found out at 10weeks baby had died at 8w6d but waited to miscarry naturally).
Because we have three DC already(aged 19,13 and 8) and because I'm 44 I've been told I wouldn't be referred for any testing on the NHS. My GP spoke to the consultant who said all they would advise would be taking a baby aspirin daily from start of next AF and trying again,though at my age any pregnancy would have a 50% chance of failing anyway.
Our dilemma has been should we try again(DH isn't sure if we should put ourselves through the heartbreak of more losses) and if we were going to should I have any private testing .
Age is definitely against me so that would be a reason for us to ttc sooner rather than later and not wait months for test results.
If you're younger you may want to wait for testing but I know it's so difficult to think about contraception or avoiding dtd if you're ovulating and desperate to be pregnant again. I feel my desire for another baby isn't rational at all, it's more like an intense need.
Good luck with whatever you decide.

teaandchocolate Tue 25-Sep-12 14:16:12

Hi Irishmammybread thank you for your reply! It is like an intense need isn't it! And I know all this stressing is ridiculous as in a few days it will be too late to ttc anyway and if I make it to next month without getting pregnant then I'm definitely going to have some tests.

I'm so sorry for all your losses. It really is the most draining, heartbreaking thing to have go through repeatedly. It sounds like you have also had a year full of pregnancy and mc - mine were in april and then July but I first found out I was pregnant this year on 1 Feb so it just seems like its been going on forever.

I am youngish - nearly 33 - but I originally wanted to have 3 children so feel like I need to get on with it as I was always told that, because of my pcos, I can't leave it too late.

I think the problem is we both need a crystal ball in order to make any sort of decisions! It sounds like you get pregnant really easily too so when, like me, you think 'oh I'll just dtd and see what happens' you always end up pregnant! (and miscarrying....sad )

I took baby aspirin during my last pregnancy (was told to take it from bfp) and plan on taking progesterone if it happens again as I took it with my only successful pregnancy. I wish you lots of luck with whatever you decide, its so hard isn't it!

confuddledDOTcom Tue 25-Sep-12 14:27:30

If you've taken Aspirin and still had a loss you may need Clexane too and you don't really want to be hanging around waiting to find out if you need it when you're pregnant (been there!)

There's a reason they do the tests 6 weeks apart, it's a dynamic test - like the diabetes test - which means the results will vary based on any number of factors. If you can afford to pay for the test then I would go for it, personally I would not want to be waiting until I was pregnant to test. I was pregnant the first time but found out days before my final consultant appointment to find out why I'd lost my daughter, so I was started on Aspirin immediately and then it took 7 weeks for me to find a consultant who would give me Clexane because I disagreed with his decision not to prescribe. I had no idea if I would get it or not and if I would lose a third baby before I did. Fortunately the second opinion the GP sent me to (a mental health obs, btw!!!) decided he wasn't the right person to decide and put me into the right clinic where they agreed with my assessment of the situation (whatever my numbers say, I've lost a healthy baby at 20 weeks so I am "bad" enough to lose a baby therefore I need Clexane).

I have since gone on to have 3 including the one I was carrying, fairly healthy babies, they didn't get away with the effects of the thrombophilia but they were born at a decent enough gestation, and I'm pregnant again.

teaandchocolate Tue 25-Sep-12 14:43:32

Hi confuddled! Congratulations on all your babies and your current pregnancy! Sounds like you went through a lot to get there.

I'm not sure that I explained it very well but I haven't been diagnosed with any clotting disorder, the gynae consultant I saw for my D&C just told me to take 75mg aspirin 'as it can't hurt'. I might have not have any clotting issues (DD was a normal pregnancy with a elcs at 39 wks) but I've not had any tests to find out. You are so right though that all these things are probably better to sort ouf before getting pregnant as once you get a bfp the stakes are so much higher.

I don't suppose you know whether I would have other symptoms if I did have a clotting disorder (including issues with my last pregnancy) or can they be symptomless but still cause mc?

confuddledDOTcom Tue 25-Sep-12 16:00:51

Yeah, I realised that smile I wouldn't want to wait until pregnancy to find out, I'd rather have the answer early and go into it with full awareness of what the situation was.

Sometimes there are other symptoms, I think I've had them my whole life we just didn't pay attention to them, but sometimes pregnancy can make them worse and you don't really display symptoms until then.

teaandchocolate Tue 25-Sep-12 20:36:36

I know that you're right. My rational head says to wait, get tests and even if nothing is found at least it might give me more confidence that I'm just unlucky. But I also keep thinking that next time I might just get lucky!!! Thanks for your input though.

confuddledDOTcom Tue 25-Sep-12 23:36:44

I know what you mean! We had planned on stopping at 2 (when he ever bothered to get around to the snip...) and part of me wanted another baby because I could put everything right, I knew though if I didn't that I risked doing it again and again trying to get it all right. Actually I got the VBAC and things turned out pretty OK anyway third time.

You just don't need the questions. If you are a thrombophiliac then as you've had previous issues you really would need to be on Clex and that's something to know early so you can call pre-pregnancy or whoever as soon as you know and say "I'm pregnant can you get me a prescription of needles?" rather than having to be going from one clinic to the next waiting to see what they're going to do.

CaptainHoratioWragge Thu 27-Sep-12 15:45:20

Hi everyone,

My history is a 20 week loss in January, a 7 week loss in May and an 11 week loss 2 weeks ago so I know how really unremittingly awful this is.....

If I was you, I would wait to TTC and PUSH LIKE MAD for a clotting test as soon as possible. If you have the money go to st marys or st thomas RMC in london as a private patient.

As Confuddled rightly says, if you have got a clotting issue, you will need clexane as well as aspirin. Like her i've been in the position of trying to get a clexane prescription out of a consultant urgently when in early pregnancy, and its tough going.

I eventually got in to see one at 8+2 during my last PG and she immediatley prescribed and i started on it that day. A later scan showed the baby had died 3-5 days before this, while i was phoning around trying to get the stuff.

Although there is no way to 'rush' through the clotting diagnosis because you HAVE to test positively on two different occasions AT LEAST 8 weeks apart in order to be officially diagnosed, in my experience once i'd got the first positive test they sent my gp a letter saying whilst they were waiting for the second test window, the gp should prescribe me clexane anyway if i got pregnant beforehand as a safety measure, so the first test should get it for you if you need it.

The reason i'd be keen to test is because of the dates of your MC's, particularly the first one. Lesley Regan (head of st mary's rmc) says in her book that she thinks the whole three trimester thing is medically outdated- the idea that if you lose before 13 weeks it is a 'normal' miscarriage is wrong because in her experience, the actual cut off for a 'normal' miscarriage is prior to the heartbeat being seen on a scan.

She says that most MC of a chromosomal variety occur before 7 weeks, and if the baby has been observed as having a hearbeat at this stage, it is likely that an external factor has acted upon the baby to end the preganancy, like clotting or infection, and so a loss after this should be considered highly significant.

She says medically there is a HUGE difference between a pregnancy that starts MC at seven weeks (that might have only actually developed to 4/5 weeks) and a pregnancy that has developed to the seven week stage. So your first PG would fall into that- second one sounds like it might have been a 'normal' (sorry i hate the way they use that word for this' chromosomal MC, and the third one depends on when it developed to, iyswim. The first one would definitely raise red flags.

Also, I know exactly what you mean about running out of time. I'm 38, have no living dc's....its all i think about.

Confuddled your story gave me some much needed hope today. Trying to psyche myself up to TTC again for the fourth time, hoping it will be different with early clexane. Thank you.

CaptainHoratioWragge Thu 27-Sep-12 15:48:06

Oh, also meant to say other symptoms of clotting disorder depends on which clotting disorder it is.
The most common in Antiphospholipid syndrome (also called hughes syndrome) their website is here if you want to read more info about it.

lotsofcheese Thu 27-Sep-12 18:08:16

I would personally wait for the tests, too. You have been through a lot already & are still young - holding off for a month or two isn't a lot in the overall scheme of things.

I had a thrombophilia screen on the NHS - my consultant agreed to my request, despite not having had a m/c at that point (I did have DS at 29 weeks due to severe PE though)

The first set of bloods were only just positive & the second negative - it's thought there was an issue with the 1st sample perhaps not being in the labs quick enough(10 mins or less is the timescale)

If you do have Hughes Syndrome, you have virtually no chance to carrying a baby to term, so it's worth testing for - mostly to exclude it as a factor (in my case)

teaandchocolate Thu 27-Sep-12 19:02:56

Hi everyone! Thank you SO much for your posts it's really means alot to me that you've taken the time to consider my situation.

I've taken your advice & we didn't try this month. I actually feel relieved as it puts off having to get pregnant for a while which, to be honest, I'm dreading. So I guess from a psychological point of view it's probably better to wait.

Captain I'm so so sorry for what you've been through. It's horrific & I really hope you get your take home baby soon. I also read that part of prof regans book & it struck a chord as I know how rare it is to have a 'normal' mc after a hb. I almost think that the 2nd mc testing positive for triploidy was a red herring and I can't be so unlucky to have had 3 mc all with chromosomal problems.

Lotsofcheese that's interesting about Hughes syndrome as maybe I don't have that as had no probs with dd and she wasn't early. The only thing I did different with her pregnancy was take progesterone pessaries until 12 weeks.

It helps hearing from others who've been through it & who believe me when I say that I think somethings wrong as everyone in rl, including dh to an extent, thinks its bad luck or 'natures way' & if I just keep trying it'll happen. I'm just terrified about what else could happen and that I might have an even later loss.

At least if I have tests I will know I've done all I can, even if they all come back negative. I got the thrombophilia forms through today. How long after the mc do I need to wait? Consultant said 3 months but I also heard 6 wks or 2 cycles? Think I'll also go to a clinic in sheffield for more private tests (as I'm in Yorkshire) as Prof Li does all clotting issues as well as nk cells otherwise will go to st Mary's I guess.

I hope we all get good news soon. I'm fed up of being so obsessed & the stress is really getting to me. Feel like I'm just not a happy person anymore!!

confuddledDOTcom Thu 27-Sep-12 19:12:21

If you can get to St Thomas', Prof Hughes (guess who wink) works there and from everything I've heard about him he is ACE! He believes (as I do too, so was chuffed to hear him say it) that all women should be tested in pregnancy and as a follow up to miscarriage if it's before the test. He doesn't agree with this 3 losses thing. He will accept referrals from around the country so ask your GP to send you to him. If you're in the Midlands Prof Caroline Gordon at the QE is fantastic and done a lot of studies into it. I don't know about elsewhere but obviously Prof Hughes is the best and I know that Prof Gordon has done a lot of work in the area.

The frustrating thing with the blood tests is that it doesn't mean much. Put it this way, if you tested someone's blood sugar twice would it tell you they were positive or negative? Some days the worst diabetic can have it under control without needing to do anything extra and even a mild diabetic can have a bad day. The clotting tests tell you what it looks like at the moment and that can be affected by all sorts of things (certain foods, time of the month, time of day, current health, stress levels...) so you really need to see a rhuematologist or immunologist who can look into your history too.

Hughes can be a nasty illness and it's congenital so it's worth knowing for your life after babies and also for your family.

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