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Miscarriage/pregnancy loss

Recurrent miscarriage refferal North West

7 replies

HopefullyOnedayzz · 18/04/2015 21:55

Hi I am currently going through my 3rd mc and the Epu have discussed with me going to see my dr to get a refferal to the recurrent mc clinic, I have tried to read up on what happens and what the testing involves but I can only see info people who have been to clinics in London. I live in Manchester and would love to hear from anybody around the North West that is going through this? What are the waiting times for the refferal? What tests are done? Do they test for NKcells or is this only done private? Any info would be fab thank you xx

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MimiDoddrioni · 18/04/2015 23:28

Hi Hopefully,

So sorry you've found yourself hereFlowersFlowersFlowers.

I'm in the north west too and have been to the RMC at St Marys Hospital, Manchester, and the care is excellent. They don't do the uNK test I think only Coventry does that but my consultant, Dr Moyhidden, works with Prof Quernby at Coventry and can help advise you if it would be good for you.

I'm not sure about the waiting time for referrals because I went a bit of an odd route. I'm not based in Manchester and ended up going to St Mary's because I was trying to get on the Response trial, I wasn't suitable, but got the full battery of tests done anyway. I've had blood tests done for thyroid function, thrombosis, lupus, cardiolipin, vitamin D, and coeliac disease. I was told the results would take 12 wks for all the tests but the earliest follow up appointment they had was 18 weeks later, which is a bit annoying but I'm just glad I don't need to schlep all the way to London for equally good care.

Perhaps give St Mary's a call to see if you can self refer. Give me a shout if you have anymore questions or my post doesn't make sense, I've tapped this out on my mobile in a bit of a hurry.

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bakingtins · 19/04/2015 08:29

Hi hopeful I'm very sorry for your losses.
If you are currently miscarrying it is very useful to get genetic testing on the products (sorry) if you have an ERPC or can collect them at home. The standard RMC testing is mostly blood tests, usually taken about 6 weeks post MC when your hormones have settled. You probably also need a scan, and possibly further imaging (hysteroscopy etc) particularly if you haven't had a previous successful pregnancy.
NK testing is only done privately, luckily you must be fairly close to Coventry implantation clinic if you want this done. I would suggest that you do it in tandem with NHS tests, which give an answer about 50% of the time. You need to be at least 2 cycles postMC and not pregnant. It can seem difficult to take a break from TTC when all you want is a baby, but most of us who have taken an enforced break have found it beneficial physically and emotionally.

You are very welcome to join the long running and chatty RMC thread if you would like company. I would never have got through my losses without those wonderful women.

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HopefullyOnedayzz · 19/04/2015 09:54

Hi baking and mimi thank you so much for the reply, It has really given me a lot to think about
mimi I didn't know they tested for coeliac disease as lately i think I may have it from the signs and symptoms so I'm glad they test just to put my mind at rest. Do they do any chromosome tests on both partners? Because my OH has had a mc with a previous relationship and he's started to think he has chromosome issues. At times like this it makes you question everything that's happened in life Confused
baking I think this mc might be a blighted ovum, can they test an empty sac? I have to go back in two weeks for a follow up scan to see if there is any development but I know it's the end as this happened with my 2nd mc, I know it's just protocol to rescan as iv been bleeding a lot too Sad
Also baking have you had the NKcells test? What was the cost of you don't mind me asking?
The forums on here have gotten me through a lot lately I find more comfort in talking to people on here than I do my friends or family Smile

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bakingtins · 19/04/2015 13:26

They could test a sac as it will still have the embryo's DNA, but might be a practical issue of size and getting enough material to test. Still worth asking for this though.
We had karyotyping done as part of NHS investigations in 2013, but more recently I know of lots of couples who have been told it's not necessary. It's not common for a parent to be passing on a faulty gene, most chromosomal abnormalities arise spontaneously in the sperm or egg, or as the embryo grows in the early stages.
The uNK testing at Coventry costs £360, which covers a consultation with either Prof Siobhan Quenby or Prof Jan Brosens and a uterine biopsy which is tested for decidualisation ( how it prepares the lining for pregnancy) and uNK cells. They phone about a month later with results and a plan. The majority of patients do not have high NK cells and go on their implantation protocol of progesterone/heparin, with which many of the RMC thread couples have had success, if NK levels are raised you get steroids in addition. I had the meds prescribed by my GP and had my early antenatal care, additional scans etc through my local RMC clinic. Even if they find nothing on the NHS tests they will usually offer additional support in a future pregnancy, which in itself has been shown to improve outcomes.
I had NK cells of 16% (normal

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MimiDoddrioni · 19/04/2015 14:22

Hopefully, I think having chromosome tests could be the next step but I wasn't very good at taking everything in during my appointment. From what I've read I agree with BakingTins that most chromosome problems are unfortunate one offs that happen when the sperm and the egg meet, rather than any problem with the parents.

Dr Moyhidden told me about an implantation clinic at St Mary's that I think follows the Coventry protocol that BakingTins mentioned. They also do extra care in early pregnancy (scans and check ups at 6, 8 and 10 wks) which has been evidenced to improve the outcome of future pregnancies for women with a history of MC. I'll be making the hour long train journey back to Manc fornightly just for the placebo effect of extra care once I get my BFP if it means my next bean is likely to stick. Heck, I'd take up Janism, only walk facing the west and get my name changed by deed poll to *Phatswhalla Dustbinhead Tuesday" if I thought it meant I'd get a live and wriggly little baby at the end of it Smile.

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bakingtins · 19/04/2015 19:34

Grin good luck phatswalla

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HopefullyOnedayzz · 19/04/2015 21:59

Yeah i second that thought mimi there's not much I wouldn't do to have a baby in my arms soon Grin.
It is a lot to take in but I want to be mentally prepared for everything and make sure I have all my questions ready as I like to know the in and outs of everything hence the amount of questions I'm asking you both lol!
baking that's fantasic that you have had a successful pregnancy it gives hope to people like me that r starting out on this roller coaster of a journey. The information you have given me is fab and left me with or to think about and Google. I think I'm going to have the nhs tests but save up in the mean time for NKcells just in case, I'm only obsessing over these as a lady I work with regrets never being tested for them and it's too late now Sad.
I'm kinda looking forward to getting referred now in a strange way, hopefully I will get some answers because it seems to have been a long process xx

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