recurrent miscarriers, how many of you have found a cause?

[just1moreplease]

i have noticed quite alot of post lately from women who have miscarried 3 times or more and have been told its just down to bad luck. i find this really suprising.

i have had 4 mc's since sept last yr. i have 2 dc from my 1st marriage and had no problems concieving or carrying them.

i am right at the beginning of the nhs tests, first lot of bloods all appear to be fine. i dont hold out much hope of finding an answer though.

how many of you have been given a reason for your mc and what treatment did you have?

also wondering how many of you gave up on the nhs and went private. what were the different tests you had done that werent offered on the nhs. anyone had nhs tests come back normal but then had differnt results with private testing?

was really hoping to have these tests and to get answers. i would really have a hard time getting the funds together to go private but if there is a big difference then i might not have much choice.

sorry for all the questons and the very long post! any answers gratefully received!

Hiya, sorry for your losses. I have had three early miscarriages and found that the NHS investigations in my area of London to be poor - they lost my test results, didn't read the information I'd provided about my history, wouldn't test for anything hormonal etc etc.

There are some guidelines from the Royal College of Obstetricians and Gynaecologists on recurrent miscarriage tests, which are useful. A lot of hospitals follow this to the letter; others provide additional tests.

Think there is a lot of variation in the NHS by area.

It is worth investigating what tests can be done by reading books (would recommend one by Prof Lesley Regan, which explained a lot of the tests). Then, if you can afford to go private, investigate doctors and their costs and approaches - their secretaries can provide a lot of information.

There are some NHS clinical trials running - information on the Miscarriage Association website.

Some tests - in particular some "Chicago" / "natural killer cells" blood tests - are quite controversial. I didn't go for these after looking into it.

I went private and found the problem (hormonal . ovaries) - it's cost over £1000 but is a small price to pay for getting some proper attention and information. You get a lot more time, with a very senior doctor, without having to wait. Not sure whether the treatment will work or not, but at least am not trying again in the dark.

Best wishes.

Just to add that even if you decide to go private, it's worth getting referred on the NHS too - you can do both in parallel - if you make sure that the NHS write to you with your test results, the private doctor can take them into account, saving you money.

I did this with the "karyotyping" (genetic) blood tests they did for me and my partner, which privately cost £800.

Also, with the NHS, it is worth phoning up the hospital at every stage to try to progress your appointment / get results more quickly. Often, the admin isn't great and you are waiting and waiting for an appointment letter - getting on the phone at every stage and stressing how anxious you are to be seen etc. can help to progress your appointments.

I've had 6 mc's altogether
mc1 dd1 dd2 then mc2 to 6
After dd2 I has retained products that caused an infection of the womb and needed a D & C 3 monthe after she was born.I have had 6 D & C's altogether. After my 2nd consective mc we went private to a gynae for a consult then back to NHS for the tests under the same gynae.
We both had karyotyping genetic blood tests which came back ok. I also had a lap and dye where they checked my overies checked for scaring in the womb but all are normal.
Have tried taking baby asprin with no5 and baby asprin and progesterone pesseries this time but I've just had my 6th 3 weeks ago so still very emotional and raw but will be putting on docs appt to see if they can do anything else.

Watching this with interest. Have just had 3rd m/c last week had d&c and have appt in 6 weeks to see consultant, any recommendations about what questions i should ask please?

Had 8. Had DD, normal pregnancy, got preg within about 3 months of trying, no problems. Started trying again when she was nearly two, had 3 m/c stopped trying and only had basic tests and they didn't find anything.

Started trying again 8 years later - had another 5 m/c's, never any answers and to be honest, didn't seem like a great deal of interest.

Now have DS, 2 and a half. My little miracle. Still have no idea what went wrong all the other times.

Had 4 MMCs, also 3 DSs, currently expecting No4.

Had lots of test on the NHS, I have to say I did not feel ignored or treated inadequately.
Ultimately no reason found though.

thanks for all the replies. i really had no idea recurrent miscarriage was such a common issue before i joined this site. even though my mother suffered at least 13 losses herself.

i have been referred for tests on the nhs and have been waiting since march for my 1st appointment. i have only had the first lot of bloods taken beacuse i had mc'd while being on the waiting list. i am amazed that some people get seen within 6 weeks in other areas. it's really not fair. when i mc'd for the 3rd time i was told that the hospital used to have a recurrent miscarriage clinic but that it had been closed as there were no new patient at the time! surely im not the only person in cardiff to have these problems?

my plan at the moment is to have all the available tests from the nhs, see what happens there then if im not happy will go private.

the consultant in my local spire hospital is supposed to be fab, but fingers crossed we wont need to see him.

my problem at the moment is that the temptation to try again is so over-whelming. im physically over the last mc but i dont think i can handle another loss mentally.

sorry for another loooong post! always have good intentions of keepling it short and sweet, but once i get onto the subject of mc there is no stoppping me!

just1 more please, I am sorry for your losses.
I am watching this thread because I am in a very similar situation to you.
Just for clarification though my appt in six weeks is a follow up from the last d&c I had (last friday) which resulted in complications. It is not at the miscarriage clinic and I do not know when I will be seen, it is questions for that appt I am interested in.
Unfair of me to hijack your post though.
The very best of luck to you.

hairyclaireyfairy you haven't hijacked my thread! i am in the process of writin a list of all the questions i have for my cons appt later this month. if i dont write them down im definately going to forget.

so far on my list is

*clotting issues. since the birth of dd 5 yrs ago i have bruised very very easily. i only have to brush past something to get a nasty black bruise, this has been noticably worse during last 2 pg's. does this have anything to do with it?

*polyps/fibroids. from what i have read theses can develop at any time and a symptom can be very heavy bleeding/painful af. both of which i have.

*family history. maternal grandmother and my mum have recurrent mc. my mum had my brother then 7 mc then me then 7 more. hers all varied from 6wks to 6mnths. mine have been mmc at around 8wks so a bit of a diff there. my mum was treated in st marys but the only thing they ever found wrong with her was pcos. no concrete reason for the mc's

thats about it at the moment. but i do keep my eyes peeled for any stories of recurrent mc just so i can hear what other people have been diagnosed with or been treated with. although after watching two episodes of extreme pregnancy on discovery last week i was quite dishartened to see that both stories featured ended up having babies by doner eggs or surrrogacy.

my worst fear is being told they cant find anything wrong. i dont think i can take being told all of this has been just bad luck

that should read my mum had my bro then 7 mc then me then 6* more

justonemore - even if all your tests draw a blank, it's highly unlikely that four consecutive miscarriages are "just bad luck" - (in statistical terms, the chances of that are less than 1/3000) More likely is that there simply isn't enough medical knowledge in this area...
i'm in exactly the same boat as you. Four miscarriages in the last 18 months. Have one son, who is now two and a bit years old, and arrived with no difficulty. had some basic tests on the NHS and they revealed big fat nothing. they ruled out anticardiolipin (hughes syndrome); thyroid problems and a few other things. we had some karotyping on the NHS. i'm not an expert on what that means but it seemed to suggest there is not a chromasome problem with me and my husband.
The NHS doesn't seem to offer anything more, so we are now going private. We're seeing a specialist this Thursday who will investigation possible immunological problems. Immunology and miscarriage is a controversial area - some of the best known misciarrage specialists in this country (lesley Regan and Raj Rai) are very sceptical. But i think the evidence is very compelling. If you haven't done so already, it's well worth skimming through Alan Beer's book "Is your Body Baby Friendly?" and see if you think it would be worth having these tests.
Like others who have posted here, my worst fear is the tests revealing nothing. i do not know how i could bear to have any more miscarriages, but nor can i bear to give up the chance of having another child....

thanks for reply kissmummy i will def have a look at that book. the thought of gettin pg again is so tempting but terrifying at the same time. af is late this month and while i would be very happy if i was pg i would also be a nervous wreck!

goood luck with your appointment. let us know how it goes.

If the losses are early it might be worth investigating blood clotting syndromes such as antiphospholipid syndrome (not sure of spelling). I lost three at exactly 6 weeks 4 days and tested borderline positive in a blood clotting test. Treatmen is very low dose asprin (I think 75mg daily) during early prgnancy. I had 3 gorgeous babies after I started on the asprin. Please note my info is a few years old so I'm sure more is known about it but it still might be worth investigating. Good luck.

hi curlygirlsmum 3 of my 4 mc have been mmc at 8-9 weeks. the 1st lot of blood test show no clotting problems. i have an appt with my cons 19th of this month to have some more tests. we treied aspirin with the last mc. no luck with that.

it is nice to hear from someone who has been through recurent mc and has had a happy ending.

Thank you for starting this thread.

I am currently experiencing my first missed MC at 10 weeks. Baby stopped grwoing at 5-6 weeks. Also, I experienced the neonatal death of my daughter in April.

In Sept, before I knew I was preg, I went to see my consultant for a chat about what went wrong in the pregnancy. My daughter's grwoth slowed in the last 2 weeks and placental fluid dropped. No reason was found for this and these were not the reasons she died.

He asked me if he could do anything for me and I asked for clotting blood tests as this could explain the placental insufficiency. Anyway, they came back abnormal but he thinks the processing of the tests may have been inaccurate and so had them repeated. Waiting for results. In the meantime, the MC happened. So, clotting could explain my situation.

No, no answers here either.

In fact come to think of it, its not something that i have asked them....why?

I think that basically they will not be able to tell me. How can they?

I have had tests for recurrent miscarriage nothing but a borderline result for clotting and recommended asprin. I took it for the last one and it did nothing, taking it again at the moment but it looks like I am going through my 6th miscarriage.

I had two children, then an early miscarriage, then another child and then 4 (now 5?) more early miscarriages.

Each of my miscarriages have been between 4 and 6 weeks, and all natural miscarriages, therefore it is clear to me logically that it is probrably either an implantation issue with me or due to age. Either way I am not sure there is much I can do about it.

Hi ladies,
after many mc's and a mmc i had all the level one tests (nhs) and all came back ok and was told to keep on trying using apirin but still mc!

I only wished i had gone private from the beginning to a fertilty clinic where they test for indepth immune issues which can cause implantation failure and early mc's. The tests are called the 'chicago tests' (level two).

The clinic i went to is called CARE Nottingham under Dr George Ndukwe, the telephone number is 01158528100. A lovely man who for the first time i actually believe might beable to help me.

My tests came back showing probs with nk cells, high tnf's and a negative LAD. Am soon to start my first immune cycle using the drugs:
steroids, heparin, intralipids, progesterone, aspirin, high dose folic acid, b6, b12.

If this fails i will need to save and try again adding the following drugs:
LIT and Humira.
Another clinic that does this testing and treatment is the ARGC in London and the fertility academy with Dr Gorgy.

For more info take a look on the fertilityfriends web site under the immunology and investigations forum.

Hugs to all of you
XXX.

Hi Sue
Thanks for this post - do you mind me asking how much all your tests as CARE cost?

hi sue,

thanks for posting. do you have any dc? i just wonder with the immune issues, are they something that can develope or would they always be there iyswim.

i seem to remember reading on all old thread where someone said the chicago tests were around £2000. not sure about the meds tho. think they would be extra. not sure if that info is correct, but thats the figure i am aiming to save.

Hi

I just came across this on the Royal College of Obs and Gynae site. It lists the recommended tests for recurent MCs. I found it to be very useful.

www.rcog.org.uk/files/rcog-corp/uploaded-files/GT17RecurrentMiscarriage2003.pdf

thanks. i will have a look at that tomorrow. off out in a min,

got my 1st cons appt next thurs so want to makke sure i know what i need to be asking.

Good luck with your appt - the document will be very useful reading. Make a list of questions. I think the more info you have, the more you can push for tests.

I remember when I found a big lump in my breast. My GP said no point scanning as it was unlikley to be anything because of my age. I asked him if he could guarantee me that and, of course, he said no. Had the scan and he was right but I am glad I pushed him as it put my mind at ease. So, don't be nervous about asking for what you want. Let us know how it goes.

Evening,

the cost for all the 'chicago tests' (known as level two tests) were about £1,300, it was so worth doing these tests as the nhs tests just do not cover them, even Prof Lesley Regan only goes as far as testing for APS/clotting issues etc. and uses steroids/heparin which for some ladies is not enough.

The cost of the other treatments vary:
steroids you can get on nhs from your gp, same for the aspirin, heparin injections, progesterone etc...

The cost of the immune drugs are:
Humira about £750 for two injections
Intralipids £285 per infusion
LIT £1,000

Not all ladies need all these drugs, some just need the intralipids.

Sadly i do not have any dc, after so many mc's and the nhs saying 'keep trying' i just felt i had to look further into this as there has to be a reason. I think immune issues can happen at any time as some woman who already have dc then go on to develop the immune issues.

Hope this helps a little.
sueXXX.

Thank you Sue - very helpful post.

I think considering the NHS wait and linited tests, £1300 is worth it.

I am not a recurrent miscarrier. My daughter passed away shortly after her birth from infection. However, in the last two weeks of gestation, her grwoth slowed and palcental liquid vlume dropped below 5th centile. Unless an infection caused this, I don't think her death was linked to this. However, it occurred to me that maybe the placenta deveoped clots. 11 weeks ago, I became pregnant but am having a missed MC. Fetus stopped developing at 5-6 weeks. Still waiting for natural loss.

I went to see my obs in September and requested clotting blood tests, which he kindly agreed to. They came back abnormal but he wasn't too concerened as he said the patterns of the results suggested innacuracy in the testing. I have had some more tests done but still waiting waiting. So, I think clotting may well have caused this MC. Hubby and I had blood taken for karyotyping. Quite surprised as I thought recurrent MCs are offered these.

I think I may have the private tests done as I can't stomache another loss. I am on a TTC break for 4 months so I can get my health in order.