Anyone had private treatment for recurrent miscarriage? Please help!

(31 Posts)
Dropdeadfred Fri 24-Oct-08 12:20:19

Hi

I am at present going through a slow miscarriage at 6 weeks pg...it will be my 7th mc and my 8th lost pgy (i had an ectopic in may which resulted in emergency surgery and loss of tube).

I had two children easily in my early twenties with my ex...ten years later i tried to get pg with my dh. After 3 mcs we got lucky and had our lovely dd - she is now 3. Since her birth we have failed to go past 6/7 weeks pg again. four more mcs and an ectopic have follwed...
We did have blood tests taken after three mcs but they all came back clear - the NHS consultant said that there was no explanation and it was up to me if i wanted to keep 'putting myself through this'...

I am desperate now - we are willing to go private if there are other tests/procedures out there available....PLEASE GIVE ME SOME ADVICE!!!

Dropdeadfred Fri 24-Oct-08 14:06:35

.

slightlycrumpled Fri 24-Oct-08 14:58:22

So sorry for you DDF.

Although I have had just two miscarriages it is heartbreaking.

I have no answers to your questions so just giving it a gentle bump.

Take care and be very, very nice to yourself.

Dropdeadfred Fri 24-Oct-08 19:34:34

Thank you SC...I'm so sorry that you have been through this pain too sad

neolara Fri 24-Oct-08 19:42:22

God, I'm so sorry. How completely heartbreaking for you.

I have a feeling that there is a trial going on somewhere (Liverpool?) looking at natural killer cells and their effect on miscarriage. Some MNers have signed up for that and may know more about it. I think the jury is out as to whether NK cells are relevant or not, but it might be worth finding out more.

If you are anywhere near London, have you considered asking for a referral to Lesley Reagan's clinic at St Mary's. They seems to be the gold standard for investigating and treating couples with recurrent miscarriage.

Good luck with finding out more.

nowwearefour Fri 24-Oct-08 19:45:03

have you asked them to look at your progestorone levels? a friend of mine was on supplements for a lot of her pregnancy after many miscarriages. did the trick for her. you have a recommendation in neolara's thread sseems worth a try? thoughts with you

Dropdeadfred Fri 24-Oct-08 19:52:47

thank you both....I was referred to a consultant after 3 mcs but they soon dropped me when test results showed normal and i then had dd3 so they assumed that was it - problem sorted.
IF ONLY...

my consultant said they would not give me progesterone supplements as no proof they would work sad

I am so sorry you are going through this heartbreak Dropdeadfred.

I had IVF. After 1 miscarriage and one death in utero at around 8 weeks the doctor sent a cell from each of the embryos to the University of Chicago for a FISH test prior to implantation. It showed that nearly all had a defect that would have resulted in miscarriage, the organs would have grown outside the body. It was not detectable without the test.

It meant our IVF specialist knew which embryos had the best chance of success. He was shocked at the level of chromosone abnormalities that showed up. I worked in the chemical industry for 13 years. I wonder sometimes if I was exposed to something I shouldn't have been.

We had success with the IVF after the FISH test. That was 6 years ago. I am sure it is more run of the mill than it was back then.

neolara Fri 24-Oct-08 20:02:26

I would go back to the hospital or your GP and ask for a follow up or referal to somewhere else. I was seen by my local hospital after 2 mcs because I also have a diagnosis of PCOS. I had tests and all was clear. However, I have just had another mc and have automatically been offered another appointment with the consultant and they are doing tests on the foetus.

Have you read Lesley Regan's book, "Miscarriage - What every woman should know"? She talks a lot about the importance of TLC in the first few weeks of pregancy and how that can dramatically affect the miscarriage rate. I think after all you losses it is reasonable to have more support. At St Mary's, for example, they scan you every week for the first trimester. Has your hospital also done a pelvic scan? Soemtimes this can indicate a problem. Incidentally, LR also says there is no evidence that progesterone supplements work.

When my foetus died in utero, I think the progesterone I was taking to maintain the pregnancy just stopped the miscarriage, the progesterone couldn't help the foetus survive.

SnoopDog Fri 24-Oct-08 20:07:41

agree with the nk cells.

you can pay to have a screening at LWH (about £500)

SnoopDog Fri 24-Oct-08 20:12:12

what about translocations,

have you and dh been blood tested for translocations?

it would mean like someone else said that the majority, apart from a miricle one or two (your dd maybe) would be chromosomally abnornal and not go on to grow into healthy embryos,

this can be gotten around by selection i believe,

i think my limited understanding is correct?

if someone is an expert then they may come on and say i am wrong blush

SnoopDog Fri 24-Oct-08 20:13:40
Dropdeadfred Fri 24-Oct-08 20:48:53

thaks snoopdog...my DH and I were tested for chromosomal problems and were told the tests were clear...would this be the test you referred to?

FattipuffsandThinnifers Fri 24-Oct-08 21:04:35

Hi, I'm so sorry for all you have been through. I've had 3 mcs so understand a tiny bit how you are feeling. In some ways it's harder when tests come back 'clear' as you still don't get any answers.

I'd second what others have said about St Mary's (Lesley Reagen), they are a specialist recurrent miscarriage clininc. You could also contact the London Clinic (Harley Street) who have a good reputation.

Would it be worth having an examination of your uterus/tubes? Eg an HSG?

I think the chromosonal tests refer to tests of the actual embryos - but this of course means these have to be somehow 'kept' (sorry to have to put it like that) to enable testing. The chromosone testing you mention may be the testing of the parents, a standard part of the recurrent mc tests, but that is not a test of the embryos - it would show if there is some (eg) incompatibility with you and your partner, but not with the embryos you have lost.

I am so sorry - but hope you will go on to have good news in the future.

cuttingmeownthroatdibblaaaargh Fri 24-Oct-08 21:13:47

DDF - I'd def go for St Marys (although I understand that one of the other consultants, not LR is the one to go for) or Liverpool.

LR does advocate fetal karotyping - you have to have an ERPC and they have to put the foetus in saline (not formalin as they usually do). You would have to argue about this at most places - in my third miscarriage the hospital I was at would do it (after I asked about it), but the hospital I had to have the ERPC at wouldn't (they agreed, but then messed it up anyway).

It could be that NK cells are an issue for you - that can be controlled with steroids.

Hope that you get some better help than you are now

The FISH chromozone test is on the actual embyros, which we could do because we had IVF. The cell sample was taken a few days after fertilization. I don't know if IVF is an option you would/could consider?

FISH stands for fluorescent in-situ hybidization.

shazzaren Sat 25-Oct-08 08:37:32

Hi dropdeadfred
You should not have been dropped by your consultant following those tests. I had a similar consultant who wasnt prepared to test or treat certain things that many other consultants think are a factor in multiple miscarriage (I have had 3mmc and have a 4 year old son). He wouldnt treat me with progesterone, didnt think my PCOS was issue, wouldnt test me for NKC (natural killer cells) as didnt think there was anything in this either. He was a private consultant. A friend of mine suffered 7 mc with him before he told her she would never carry a baby. She moved to st marys and carried her next pregnancy to term and has a lovely baby girl. I have moved to Mr Shehata who has tested me for EVERYTHING, I have tested positive for NKC which he says can sometimes be triggered by a successful pregnancy. He is treating me with metformin for PCOS and has given me progesterone to start taking as soon as I get pregnant so we pretty much have all our bases covered.
If I were you I would change consultant - if you can get to London or Epsom area I would highly recommend Mr Shehata. I feel really positive now that I am getting some treatment. Good luck. x

SnoopDog Sat 25-Oct-08 22:38:46

nice to hear a happy ending shaz,

good luck smile

dannyb Tue 28-Oct-08 21:53:11

I had 4 m/c and had all my investigations privately. One consultant told me that there couldn't be anything the matter as I had had a baby 2 years earlier. He did no tests and said that he just knew. I m/c for the 3rd time 3 days later. I then went to see another private consultant who was a lot better. He got to the bottom of the problem and agreed that I had low progesterone however, he wanted to treat me with clomid rather than progesterone as like your doctor he said that there was no proof progesterone worked and I m/c for the 4th time.He asked me if I wanted to be referred to lesley reagan but she also dismisses progesterone treatment and so I said no. In the meantime someone told me that Yehudi Gordon used progesterone and I put myself on his waiting list for new patients which was 3 months long, all private. I found out I was pg for the 5th time and called my consultant. He was on holiday so in panic I rang Yehudi Gordons secretary to see if she could suggest something as I was seeing him 10 days later. He was in her office, had me scanned that afternoon at 3+5 weeks pregnant, I had dangerously low levels of progesterone and an extremely thin lining. He got me on progesterone supplements within 3 hours of my talking to him on the phone, scanned me weekly and my precious miracle DD is now 2.5 years old. Yehudi Gordon was my miracle worker and I would recommend him wholeheartedly. He does no NHS work and can try lots of things that other doctors won't do and it's proof that progesterone can work.

wu75 Sat 01-Nov-08 19:37:44

Hello everyone,

I've posted this on another thread, so sorry for the repeat, but I feel it is very relevant here too and really hope it may help.

i'm 32 and tried for my first baby in june this year and fell pregnant straight away, i was estatic. then i started to bleed and realised it was all over. i was completely devastated. my doctor said don't worry, it happens a lot, no need to wait, try on next cycle and most importnant, relax. i felt so much better, so we tried again in july. same thing happened again, only i got slightly further along. the second time, although extrememly cautious, i never really thought it would happen twice. it was such a blow and i completely hit rock bottom, i didn't know what to do with myself.
i knew something was wrong and decided there was no way i had the emotional strengh to try for a third time. purley by chance i stumbled upon a charity called 'foresight pre conception' on the web. they specialise in helping people like us. these people are amazing. i read their site from top to bottom and decided me and my partner should take their hair analysis test which is an excellent way to see if there is anything going on in our bodies which could adversly affect pregnancy. hair analysis is particulary good because it gives such a detailed picture of what is going on over a period of months rather than just right now. we sent off our hair samples and got the results a couple of weeks later. to our astonishment we both had really high levels of lead in us.(lead is seriously bad for a foetus and known to cause mc). i was slightly better than my partner who had extremely high amounts. we were once again devastated and I couldn't stop crying every day for weeks, but at least we had some conclusive reasoning to our nightmare. we chose to embark on their 3 month program to naturally flush the lead out of us and boost all other vitamins and minerals essential to a healthy preganancy. we are currently half way through the program.
it was entirely our choice to do all of this but what i really wanted to say is that we had no idea this was going on in our bodies. we live really healthily, but there was a source of lead which we had not realised we were ingesting or was harmful. the hair test can also identify loads of other heavy metals and toxins in everyday life that can have a devastating effect on your pregnancy, that you may have no idea your bodies are absorbing. the track record and success for the foresight programme is amazing. i really hope we are a part of that success.
obviously i don't know yet, but it has given us such hope and the whole process is completely natural. i never wanted to force my body into pregnancy, if it couldn't do it on its own. they stand by this too.
anyway, we are hoping to start re trying in the new year, if our second hair tests are good. I will keep everyone posted!!
check out their site and see what you think. there is a huge amount of practical info on how to increase your chances of being really healthy before and while pregnant. i cannot speak highly enough of the support and understanding that they have given to us and would not hesitate to recommend these lovely people to anyone who wants to give themselves the best possible chance of a healthy pregnancy, even if nothing is wrong. sorry this post is so long! lots of luck and love to all of us. xxxx
www.foresight-preconception.org.uk

Poshma Sun 18-Oct-09 20:36:19

Hello,
I am new to this site and i was wondering if anyone can give me some advice. I am nearly seven weeks pregnant and 4 days ago i started bleeding, it's not so heavy and i am not having any cramps or pain. I had a scan two days a go which showed my sac was still in tact, but a previous internal examination showed some bloof clot. I have been told to go back for a another in 10 days time to see what is happening? I feel confused, because i don't know if i am having a miscarriage or not? has anyone gone through this before? Although i have had a misscarriage last year so i guess the chnaces of another happening is greater. Please give me soem advice?

kissmummy Sun 18-Oct-09 21:13:40

hi there, poshma it's impossible to know on the basis of the details you've given but i have to say based on my own experience (four miscarriages now) it doesn't sound good sad At seven weeks it can be too early to see a heartbeat (though it can be seen around this stage in some people) so what they are probably waiting to do is see if there is any heartbeat in 10 days time. i have been in your exact position - an inconclusive scan and told to wait a week for another scan, and i found the experience horrendous. In fact in my case the sonographer simply wasn't expert enough - she gave me entirely false hope by suggesting the baby could be okay, whereas when a gynaecologist looked at the initial scan report he could tell straight away there was no hope sad and said there was no point in waiting any longer and having a second scan.
If i were you i would not wait ten days - i think you would get a definite answer from another scan in a weeks time. three days less waiting is worth it.

kissmummy Sun 18-Oct-09 21:18:30

madamedeathstare can i ask where you had your IVF with the FISH testing - was it in London or overseas?

Simy3010 Tue 26-Jan-10 22:36:33

Hi

I just wanted to say I had three miscarriages in one year at 5 weeks, 12 weeks and 6 weeks. I was referred to St Marys recurrent miscarriage clinic in London, although it took some time for my appointment to come through,when it did they were fantastic. They tested mine and my partners blood and they checked out my uteus and tubes. The results came back inconclusive ie there was nothing wrong and they advised we try again. We did and got pregnant for the 4th time the following month, by which time St Marys kept a close eye on us and scanned us every week. These are called reassurance scans and it is belived they simply reassure the mum that everything is fine and this enables her hormones to continue with the pregnancy. After 12 weeks of weekly scans they referred me back to our local hospital. I now have a beautiful little girl who is nearly one, so I just wanted to reassure those ladies that have been through several miscarriage not to give up hope, you still may have a good chance and St Marys is brilliant. Good luck.

CleoGrace Mon 01-Feb-10 21:01:41

I've just had mmc number 3 at 7 weeks. The viability scan showed only a sac and I am taking the drug to induce a natural miscarriage. Mmc 1 and 2 were at 11 and 10 weeks, and I had a D&C for each. The results of the tissue tests showed chromosomal abnormalities. Additionally, my husband and I had blood tests to show no genetic issues and my test for thrombophilia was fine. We have a 2 year old son.

With this pregnancy, I was advised by my doctor to take aspirin (75 mg) and progesterone, just to cover all the bases. With the last two pregnancies, we got pregnant in the third cycle after the mmc.

Any insight out there? What type of treatment or further testing would make sense? I would like to explore pre-genetic screening (with IVF) and also testing for "killer cells".

I have been referred to the McNair Clinic at London Bridge but would also like to work with a fertility consultant specialising in recurrent miscarriages. Any recommendations in London?

Looking forward to hearing back from everyone..

sue10 Tue 02-Feb-10 15:19:19

Hi cleo,
sorry for your losses, hugs to you.
i would recommend Mr Gorgy in London in Wimpole Street (the fertility and gynacology academy). He does full immune testing such as nk cells, th1 and th2, lad, dq alpha etc...
Tele: 02072241913

Another consultant leading in this field is Mr George Ndukwe at CARE Nottingahm which again does in depth immune testing.
Tele: 01158528100

Takecare.
sueXXX.

tide75 Tue 04-Dec-12 05:52:04

Madamdeathstare how do I contact you?

tide75 Tue 04-Dec-12 05:59:24

Can I contact you re fish test? Urgent Tide.x

Justonemoretime Tue 25-Jun-13 17:41:23

Hi, Does anyone know how far in advance of ttc again they need to do the tests for NK cells? Has anyone had this test done? What does it involve? Thanks in advance, Ladies. xx

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