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!

Hi j1mp and sh77,

I see Dr George Ndukwe at CARE Nottingam, the best thing to do is call the clinic on
01158528100 and ask for the immune tests information pack, this has all the info you need about the tests they do for recurrent mc's and the treatments/drugs they use. Am looking at my pack now and we paid £1,181 for the 'chicago tests' (level two's) which covers nk assay, th1:th2 alpha, MTHFR, LAD. This fee included the review consultation aswell. You normally would have had the level ones tests on the nhs where they test for karyotyping, aps/clotting etc....

All i know is that Nottingham is up North, my geography is not good either lol!!! Type in the post code to do a route guide to see how far it is from where you live,
Address: John Webster House, 6 Lawrence Drive, Nottingham Business Park, Nottingham, NG8 6PZ.

I have not seen the consultant in London who also does the 'chicago tests' but he is very popular on the fertility friends web site and many of the ladies use him. He is called Dr Gorgy and his clinics address is Fertility and Gynaecology Academy, 57a Wimpole St, London, tel 02072241913.

Dr Paul Armstrong is used only if you require a treatment called LIT so you wont really need to see him (imo)unless your test results show you need the treatment. But just for future reference his phone number is 02073908156.

Hope this helps.

I will be thinking of you on Wednesday morning sh77, i really feel for you my lovely.

hugs
sueXXX.

just1more - it says business gold level 2 on my card. It didn't cover the treatment - just the tests. Though they may cover some treatments (worth her checking).

SH77 - will be thinking of you on weds. Be kind to yourself. It won't go wrong but that doesn't mean you don't need to have good rest and time to grieve.

thanks hells i will pass that on

sue just recieved my info pack from care. its quite daunting! so many tests to have done.

1st cons appt in the morning. not holding out much hope for any answers tho! x

all the best for tomorow J1MP - let us know how it goes.

thanks sh im sat here trying to write down everything i want to ask.

poor cons is going to be stuck with me for hours!

sh how did the erpc go? sorry forgot to ask earlier. hope you are being looked after well.

xx

Hi

I had 3 miscarriages and they can't find any reason for it. I have to have hormone treatment if i get pregnant again as soon as I as I find out, then low dose aspirin once they establish a heartbeat.

Hi ladies,

hope your alright sh77, have been thinking about you.

how did the appointment go j1mp? Glad you got the info pack, even after months of having it im still constantly going over it again and again, it takes a while for it all to sink in but very interesting.

hi kazzac, for some ladies the aspirin does the trick for them, fingers crossed for you. Sorry for your losses.

sueXXX.

Hi Sue and just1more

Thanks for thinking of me. Had erpc this morning and it went well. All the staff were absolutely wonderful and so sensitive. I have no pain and only minimal bleeding. Just very glad it is over. Consultant took my blood to test for antiphospholipid disorder and protein c. He is sending sac tissue off for testing also. He said not to go down the route of seeing a miscarriage specialist just yet as I will just stress myself out instead of moving on from what has happened. Also, he said there was no link between my baby dying in April and the MC. He didn't (thankfully) use 'bad luck' as the reason but said that 25% of 1st tri pregs end in MC. He has a point I suppose. I will see what my results show and will decide.

just1more - how was your appointment and what sort of questions did you ask him (and did he answer them well?)
xxxx

hi sue tha pack is v. interesting. alot to take in though! i have also requested some info from dr gorgy in london, trying to leave it until new year to make a decision.

kazzac sorry for your losses. have you had any tests done? i tried the aspirin and it didnt work for me, although it does for alot of women. good luck.

sh i asked him EVERYTHING i could think of, made a long list and ticked them off as i went. but for me the main issues i wanted to clear up where,

1- my mum suffered rec mc (13 in all) she also had 2 succesful pg's any possible link

2-clotting issues,i was sure i would tests pos for hughes or something similar. other health issues pointed to this

3-immune probs

4-possible future treatments

there were lots of other things i asked. mostly he was very good, but i get the impression he isnt the most sympythetic dr ever. he is quite matter of fact. im most disappointed that i dont have a plan in place for future pg's, he will do that at next appoint

Morning,

hi j1mp, glad you went for the appointment and managed to ask all your questions. Good idea to get all info from both clinics so you can make the right decision for you, goodluck. Dr Beers book will take a while to get ya head round aswell but again very interesting and uplifting too, gives hope and answers.

sh77, am so pleased the staff at hospital were kind to you, it makes all the difference when they are sensitive to what's going on. Be gentle on yourself and takecare and give yourself time to grieve.

sueXXX.

sue i have ordered a few different books. nice light bedtime reading

am looking into getting on the trial for nk cells at lwh. its a blind trial so you dont know if you get the steroids or the placebo, but i would probably be willing to try anything. the way i see is it, i will more than likely keep trying regardless. i took part in a trial during labour with dd and was given the option of finding out after if i had the real thing or not. hopefully would be the same with this trial.

wouldn't be happy about a regular trip from cardiff to liverpool. but worth a shot i think.

xx

Hi ladies - I just had to contribute to your thread just1more because I have also had 4 mc's (no children) and I've seen 3 different reproductive endocrinologists . I'm here in the U.S. by the way. I've had every single test done that there is to do and nothing abnormal was found.

The last mc I had, I got a d&c and they found that it had trisomy, which means it had an extra set of chromosomes. My dh and I have had chromosome testing and we're both normal but for some reason, it looks as if the egg and sperm are just not coming together correctly, or the cells are not dividing or doing what they are supposed to do... - at least, this is what the last doc told me. He also said it could be a bad egg or a bad sperm every time, and that we could just keep "rolling the dice" or try PGD IVF, which costs 20,000 dollars and the success rate is no higher than just trying on our own...

SO, ANYWHO - that's my story and I'm in the same frustrating boat. We are going to keep rolling the dice, and if this happens a few more times, then we will raise the money for the PGD IVF.

Good luck to you. This just stinks !

Sorry - correction - My fetus had triploidy, not trisomy. Either 2 sperm fertilize 1 egg or the egg has 2 sets of chromosomes...

J1MP and Daynee - wish you all the best. 'Rolling the dice' is a good analogy.

hi daynee im very suprised that they have not found any reasons atall for your losses.

and at $20000 for the treatment, how can they charge that when they aren't even giving you any better odds. makes me mad that we have to go through all of this.

do you mind me asking if you plan to try the treatment or are you going to try again without?

all the best with whatever you choose.

xx

Some of the immunological testing is controversial, as are the use of some of the strong drugs. The book mentioned is persuasive and seems intuitively to make sense, but a lot of researchers/specialists in this area do not agree (or offer the "level 2" tests) and the treatments have not been proven by clinical trials. Some of the treatments are experimental (not to mention expensive).

Just because one doctor or group of doctors doesn't offer the tests, doesn't mean that they are wrong or that you "need" additional tests and treatments - it's unproven stuff, and each of us will take different decisions about whether to go down that road.

There is an NHS trial in Liverpool at the moment where you don't have to pay, and you can be referred wherever you live - information on the Miscarriage Association website.

in my case cause is balanced chromo translocation. I've had 4 mc and have 2 dc - 1 dc has unbalanced chromo translocation and has multiple disabilities. My mother has the same - she had 2 dc (no disabilities), 1 sb and 1 mc

mean mother has the same balanced translocation as me - not the unbalanced one my dc has

dozer i agree with you re the immune testing. although i know alot of the tests and treatment are, as yet, unproven clinically, i am at the point where i would be willing to try almost anything. i personally am not willing to accept that i can carry to babies to term then a few years later lose 4 pregnancies. 3 of which at the exact same stage. all with no explantion.

i am also looking into getting on to the trial at lwh. my mum suffered herself with rmc and alot of the tests wew have as standard today where no offered to her. she herself had to take part in trials.

herjazz so far all the chromosome tests have showed as normal, but there is one more that we are waiting for dp to have done.

I had DS with no problems followed by 4 m/c, then DD, then a m/c and am now 21 weeks with #3.

Nobody here has mentioned low progesterone issues. My tests all came back clear but progesterone results were borderline, never reaching 30 and resulting in thin endometrial lining which doesn't allow an embryo to implant and leads to early miscarriage.

If you have multiple early m/c please talk seriously to your doctors about whether this is a possibility. It's not something which is particularly well recognised within the NHS but St Mary's have finally started a trial looking at whether it has a place in unexplained multiple miscarriage.

I was eventually treated by Yehudi Gordon at Viveka and had a totally straightforward pregnancy. My 5th m/c was a suprise pregnancy which was not treated and when I became pregnant this time I started treatment again and the pregnancy has again been straightforward.

I was given 400mg cyclogest 2x per day for the first 12 weeks of pregnancy. I had all my investigations privately, initial ones were paid for by BUPA but it has a limit and we topped it up ourselves.

hi yay i'm interested in your story. can i ask exactly what stage your miscarriages were at, and if they were "missed miscarriages" or natural? ( i am interested to get an idea of when the embryos died, if you don't mind me asking...) I have had four miscarriages, following a trouble free pregnancy which resulted in my DS who is now nearly 2.5 yrs old. In all four cases my embryos have died around the six or seven week mark. for my last pregnancy i was given 400mg progesterone daily by my GP just in case it made any difference, and we saw a heartbeat at 7 weeks. the baby died at 8 weeks. I have very light periods and have often mentioned the possibility of thin lining to various specialists we have seen; none of them have seemed very interested. I wonder whether doubling the progesterone dose would have made any difference, though in my case it does seem like the embryos successfully implanted, and failed later...
we had some NHS tests which came back clear, and i'm now waiting for my periods to return following my fourth MC before we have further tests privately.

As someone who’s been going through similar issues and heartache...I know it’s a long shot but did anyone go on to have healthy babies or gain more insight into testing at all?

I would also be interested to hear how you all got on? I am going through a very tough time with recurrent miscarriage at the moment...

Sorry you are both going through this. Recurrent miscarriage is horrible.

I guess the potential cause for my MCs was found relatively early on. When I first went to EPU they found I had what looked like a bicornuate uterus. After MC number 2 it was looked into in more detail with a 3D ultrasound which showed it looked like a septate uterus. After MC number 4 my consultant agreed to remove it. I had that done at the beginning of October and got pregnant the first month we started trying again. It had always taken months before. I am hopefully now 9ish weeks and never made it past just over 7 before. Have my second scan on Tuesday to see how things are going.

I also had all the other usual tests done which were fine. Sadly I think most ladies don't find a cause but I hope you manage to get some answers.