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Recurrent mc - how to get referral to st.mary's?

(17 Posts)
Lucinda15 Thu 31-Mar-16 07:42:57

I've just had my 3rd consecutive miscarriage. I have been referred to my local recurrent miscarriage clinic but I've had mixed reviews.

The recurrent mc clinic at st.mary's in London has been very highly recommended however, and I'm interested in trying to get referred there. But I have a few questions I thought mumsnetters might be able to help with before I start doing the rounds making enquiries on the phone!

Can my GP refer me if I live out of the area (I live in Essex)? And can I get treatment there on the NHS? If I choose to go private how much would it likely cost?

Any other recommendations or experiences there or elsewhere would be useful to know. Thanks x

Snoopysimaginaryfriend Thu 31-Mar-16 16:29:40

Hi lucinda, I'm so sorry for your losses.

I too had three recurrent miscarriages and asked to be referred to a miscarriage clinic. The wait was more than six months and DH and I decided to go private. I'm glad we did because by the time my appointment came around I was already pregnant and it turned out I had actually been referred to an IVF clinic, still remember the secretary saying to us 'if you can get pregnant why were you referred here?' hmm

We went with dr Shehata. I'm now nearly 34 weeks and I think it's cost us about £4000 in total. We had all scans/ treatment with him privately, although you can also be referred on the NHS, because we had no support from an NHS epu and didn't actually see an NHS midwife till I was 17 weeks.

There are cheaper options available depending on where you are and how happy you are to travel (Prof quenby at Coventry gets very good results) and you only pay £300 for the initial biopsy and if you would like to try st Mary's then I believe your GP can refer you, I've heard raj rai is very good there, but enquire about how long you will have to wait.

The ladies on the recurrent miscarriage thread have compiled a list of the different treatments and consultants on offer, both private and NHS, and they're very supportive, I probably wouldn't be here without them.

Good luck on your journey and I hope your next pregnancy is the one.

Lucinda15 Thu 31-Mar-16 17:37:31

Thanks for the advice snoopy can I ask where dr shehata is? I have managed today to get some details from st.mary's - they confirmed They accept out of area referrals from GP's for treatment under NHS as long as I fulfil the criteria (which i do). my GP has redirected my referral there. Waiting times 7-8 weeks at the moment once they receive referral which is good news. I will check out the recurrent miscarriage thread.

Congrats on your pregnancy, I hope you have a smooth and happy 3rd trimester.

flowers

Snoopysimaginaryfriend Thu 31-Mar-16 19:06:33

Thanks lucinda, it's still very scary even now but I know I'm lucky to be here.

I think dr s can be seen on the NHS at Epsom hospital, but you will probably see one of his team rather than him. I believe the treatment plan is nearly the same but you won't be offered intralipids like his private patients.

That's a short waiting time. Fingers crossed for you smile

bananafish81 Wed 06-Apr-16 12:38:18

I’m so sorry for your losses

It’s definitely worth seeing Prof Regan / Mr Rai @ St Mary’s RMC, but if they tell you it was just bad luck, and there’s nothing wrong with you, don’t get fobbed off

Unfortunately the NHS doesn’t have much to offer unless you have a clotting disorder or thyroid - they don’t ‘believe’ in immunological causes of miscarriage. Two friends both had 3 miscarriages in the space of a year. Both went to the RMC at St Marys and were told the mc were just bad luck because all their thrombophilia tests were normal

They miscarried again. It wasn’t just bad luck.

Both went private, got tested for NK cells, got treated with steroids, intralipids, and blood thinners and both are now 11 and 12 weeks pregnant respectively. One went to Dr Gorgy, one went to Mr Shehata privately.

It’s worth getting all the thrombophilia tests done as it may be that a 15p baby aspirin will prevent a future miscarriage, if you’re found to have antiphospholipid syndrome (sticky blood). But if not, I would strongly recommend going to investigate immunes. Mr Shehata can’t treat with intralipids etc on NHS but does privately. Dr Gorgy is excellent. Dr Ndukwe at Zita West also. And CARE in Manchester and Nottingham I believe will treat RPL with immunes even if you’re TTC naturally and not having fertility treatment

I had a MMC 3 weeks ago and am getting all the immunes tests done, it’s only my first, but I don’t want to wait for 3 to find out I might not have miscarried if I’d had some steroids and Clexane.

FYI The Chicago tests that Dr Gorgy / Mr Shehata will run will cost in excess of £1500

I am getting them done for £300 with a lab in Athens called Locus Medicus. Dr Gorgy apparently accepts these tests, so they’re valid.

The immunes faq on Fertility Friends has pretty comprehensive information about NK cells testing and other tests for recurrent miscarriage

www.fertilityfriends.co.uk/forum/index.php?topic=242395.0

Good luck 

bananafish81 Wed 06-Apr-16 12:47:55

I should say that all 3 friends who have RPL all conceive very easily, all are experiencing secondary infertility, all have little boys who they carried to term - a first pregnancy (especially if it's a boy - there's a lot of research been done into why it's much more common if you carried a male baby) triggers an immune reaction which can mean the body rejects healthy embryos in a subsequent pregnancy

Which if diagnosed and treated, can mean you will have a healthy pregnancy

If any of this sounds familiar, I would urge you to seek private treatment, as the NHS will say there is no proof of immunological causes of RPL

When thousands of women who've managed to stay pregnant after successive miscarriages would beg to differ!

I think I remember you from the PCOS thread, thinking of you xx

Lucinda15 Wed 06-Apr-16 17:03:32

Thanks bananafish - it's given me a lot to think about. is there any way I can have these tests at St Mary's if I pay for them? Or do they not do them at all? Just not sure I want to go through tests etc and potentially miscarry again or have to wait for another referral to the other clinics/consultants u mention.

bananafish81 Wed 06-Apr-16 17:18:18

St Mary's will do the tests listed in the immunes faq as the 'Level 1 immunes'

They are clotting disorders and the like

Prof Regan and Mr Rai at St Mary's are very very scathing about NK cells - Prof Regan wrote all the guidance for the Royal college of Gynaecologists saying there's no evidence that these issues exist and treatment is a waste of time and not proven

Be prepared that they will tell you this if you ask them

You absolutely cannot get them at St Mary's, only a few specialists will do immunes treatment, unfortunately

it might well be that St Mary's find a clotting disorder, or karotyping shows a genetic cause, and you don't need to get more tests done because you've identified the issue

But just to say if they don't find anything and tell you it was just bad luck and keep trying, that it isn't necessarily the end of the road, and there IS more that can be done

They will tell you that someone of the immunes treatment is dangerous. There are some drugs that are very controversial that Dr Gorgy and Mr Shehata will use, called Humira and IVIG, BUT there are alternatives and you are not obliged to take them. The other immunes drugs they use are very safe, and many fertility clinics prescribe them empirically during IVF

I would recommend the book 'Is your body baby ready?' by Dr Alan Beer, who was the father of reproductive immunology, and this book is a mine of info about immunological causes of recurrent miscarriage

xxx

bananafish81 Wed 06-Apr-16 17:20:51

Sorry, the important bit was missing: you absolutely cannot get the tests called the "level 2 immunes' (see the link I sent you, they're known as the Chicago tests) at St Mary's, they will tell you THESE tests are controversial and there's no evidence for them

Spottyladybird Wed 06-Apr-16 17:26:27

A friend of mine was referred to St Mary's from Suffolk so I think it should be possible from Essex.
Sending you Un MN hugs.

Lucinda15 Wed 06-Apr-16 17:34:31

Thanks again bananafish - loads of good info there will do some reading! I'm really hoping that it dsnt come to it and they can identify a reason and offer me treatment at st.marys. but at least I know where I can go if I reach a dead end flowers

Thanks spotty I have managed to get a referral to st Mary's - they advised they take GP referrals from out of area and I fulfil criteria. just waiting for my appointment, all being well smile keeping everything crossed that they can help.

squizita Mon 18-Apr-16 15:59:17

Lucinda I live in area and really recommend St Marys (though the waiting rooms when pregnant are smelly sweatboxes! Boak. You'll notice the 'when pregnant' ...in my case their treatment was exactly what worked after a very traumatic 2 years).

Hope you fit the criteria.
If you don't, when I was applying I checked the private pricings and they came in at under £1000. However, hopefully you fit their criteria.

squizita Mon 18-Apr-16 16:03:33

...If you want to pursue the NK testing route, Prof Quenby is the safest route.

Sorry, but Dr Beer was struck off as his methods were tested and found to cause even more losses in some cases in the USA. A very passionate man but controversial (read "coming to term" by Jon Cohen as a great summary of recent theories).

Shehata is also controversial - some of the steroid treatments have big risks.

NK cells as they are studied now - by Quenby and Shehata - are a completely different kettle of fish to Beer's stuff in the past.

squizita Mon 18-Apr-16 16:19:19

Banana APS doesn't mean you just need baby aspirin. Sorry, it doesn't. It's actually a lifelong condition which requires monitoring and usually requires clexane to be injected weeks 3/4-32, regular growth checks and other tests. There is still a high risk of extreme prematurity, low birth weight, stillbirth, maternal thrombosis or birth complications.
Although they are called level 1 they are not 'milder' or simpler or easier to diagnose than other causes and they're not an 'easy fix' with aspirin: without aspirin, there's only a 10% chance of carrying to term, with aspirin you have a 30% chance of carrying to term, with heparin/aspirin and constant monitoring, you have a 60-75% chance of carrying to term.
They are level 1 because they are the most common cause - 1/3rd of the unlucky 1% (only 1% of women miscarry 3 times or more) have them. St Marys tests for lupus and non-lupus related clotting issues and has very sensitive screenings, they also test for clotting issues which only arise during pregnancy.
*Pr Quemby DOES work with/for the NHS. The NHS do not write off all NK cell issues at all - they are still running trials - trials which will eventually result in safe, reliable treatment - understandably they simply cannot do that without belt and braces trials.
Dr Shehata is private and quite contraversial, but has some good results. I found his clinic slightly evasive as I was going to look at NK after my losses if nothing was found via the NHS - had that been the case and I'm not alone here I would have paid/travelled to Birmingham for Quenby.

There are quite a few clinics who are absolutely shameful charletans out there - chucking around progesterone, steroids and woo. You have to be very savvy, they pray on desperation.

I know after a first loss you read up on the causes like a sponge, I've been there. But there are some serious gaps in the stuff you are giving advice on here. APS is a serious condition, as are thyroid issues and other causes. www.hughes-syndrome.org/ www.miscarriageassociation.org.uk/ are good sources of reliable information.

Sorry if this sounds harsh. But for a recurrent miscarrier who went through painful treatment after her 3 losses + a partial molar, having thyroid and APS misrepresented is concerning.

bananafish81 Mon 18-Apr-16 17:18:39

Absolutely - I have no experience of APS and wouldn't claim to have any knowledge of the condition.

And agree entirely about the methods like Humira and IVIG which Shehata and Gorgy use which are cytotoxic

The work Prof Quenby and Brosens are doing is brilliant and the Tommys research centre is a massive leap forward

I hope that more funding in this area esp into their breakthrough work on stem cells will lead to more treatment for RPL and the heartbreak women like you have had to endure. I am so very very sorry for your losses and as trite as the term 'rainbow baby' is, I hope you will have yours soon xx

bananafish81 Mon 18-Apr-16 17:28:35

Mr Shehata also thankfully helped two dear friends who both suffered the agony of three miscarriages in the space of a year each - and both are now successfully in the second trimester. They both conceive easily but couldn't stay pregnant. Thankfully with Mr Shehata's treatment they are both now in the second trimester - the treatment they have got has been superb and as you say, his results are very very impressive

Xx

Bluebell1403 Sat 07-May-16 12:37:33

Lucinda, sorry to butt in but do you mind me asking how you got in touch with St Mary's to ask about waiting times and referrals? I can't find any contact info apart from a phone number that isn't answered!

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