Recurrent Miscarriage Support - tests, treatment, trying again - thread 9

[bakingtins]

Welcome everyone - pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of information, moral support, tea or sympathy. Newbies very welcome.

Can we start the thread with a recap of where we are all up to again, please?

Hi triple I had the standard NHS testing after seeing a private consultant after MC 3 but not 3 in a row (presumably what dr Rai will start with) and it didn't find anything. This is the outcome in 50 % of cases even after 3 consecutive MC. I then had MC4 on their 'can't hurt' treatments and it was tested as genetically normal, which is when I went to see Prof Q. I was diagnosed with High NK cells on her biopsy and am now 28 weeks pregnant. I also post on the "TTC on pred" thread on the conception board where there are lots of people who have see Drs Shehata and Gorgy in London, so it may be worth posting there too if you are considering it. Both sites were a long way for me, Prof Q was a fixed cost (£350) and a single visit and v straightforward treatment, and I found her very down to earth and encouraging. Had she not come up with anything I think we'd have given up at that point. You can see her after one normal period, 7-10 days after you ov. I think either of the london clinics will do many more tests (blood tests not a biopsy, controversial whether they are equally meaningful) and offer more comprehensive but also more expensive and more controversial treatments like IVIG, intralipids, hydroxy.
I agree that if there is any way you can get genetic testing of products I'd do that first, as it makes a big difference whether you've been unlucky enough to have 2 chromosomal losses (in which case there's every chance you'll be fine if you try again) or whether you are losing normal embryos.

Hi triple

I saw Dr Rai at St Mary's after my 3rd and all results came back normal. since then I had a daughter and 2 more miscarriages, so now I will be going to see Professor Q in Coventry. (probably in a couple of months as I only just miscarried and want one more cycle before booking with her.

Someone I know in my birthgroup with my daughter has 2 children now, both under Dr S's treatment.

Personally I like the way Professor Q is only £360 and does the uterine biopsy rather than just blood tests so will go for it.

Also (as i am in North London) i think it will be handier to get to coventry than to Dr S's NHS place in south London...

Hi all

I had 2 MCs in late 2012 and early 2013 at 8+6 and 5+6 weeks. We tries again straight after MC1 but after MC2 decided to have some tests abroad, coming back normal, apart from low Vit D (they would not test tissues on NHS after MC1 or 2).

I've just had positive PG test followed by a negative and my AF was 8 days late but GP would not do HCG blood test to confirm whether i was pregnant or not, so I am not sure if this would register as MC3 or not...

My questions is, what does the NHS test for after MC3, so I know whether I would be eligible for any additional test that I have not had done yet (like genetic), and therefore should I insist they register this as MC3?

Thanks

It was in 2011 but i think my tests involved the clotting issues and also detailed scans. i did the ones at St. Mary's
the only thing they don't test (as far as i am aware) is the NK cells and that is why I am going private.

I would still make a point of getting it registered as it is important to know... My MC2 was a bit strange but my GP counted it and it added up to my count of 3 before tests...

I actually also had a chemical pregnancy before MC4 (official) but my AF was only 5 days late there so I didn't count it...

At my GP they checked:
Oestradiol normal
Progesterone normal
Haemoglobin normal
Liver function - normal
Thyroid function normal

Abroad they tested:
Antiphospholipid antibodies negative
Vit D very low
Peripheral blood normal
Genetic factors 1-4 normal apart from 1

Then when I went to discuss these results with the consultant here, he ordered a few more tests, which ruled out inherited thrombophilia and Anticardiolipin antibodies.

Is there anything else that you know they could be testing?

silverine If you've had a positive test followed by a negative I would insist that it's entered on your medical records - a chemical pregnancy should 'count' towards your miscarriages for the purposes of being referred for testing.
It sounds like you've had most of the standard RMC testing though I would still ask for a referral to have the all the test results reviewed and see if anything has been missed.
I had
Day 2 FSH and LH
Full blood count and basic biochemistry, plus thyroid testing
Raft of blood tests for clotting and APS
Karyotyping for me and DH
Mid cycle scan to check ovaries, uterine lining and for any abnormalities or scarring from prev births or the miscarriages - if you've not had a successful pregnancy you may need further checks of your uterus e.g. a hysterosalpinogram
Antimullerian hormone - not available on NHS, a test for PCOS and ovarian reserve, recommended because I was 38.

The standard tests didn't come up with anything for me, which is the case half the time after 3 miscarriages. I had a 4th miscarriage which was genetically tested as normal and then went private for NK testing.

baking why don't they do the NK test on the NHS - cost? How did that come back for you?

Did you take anything with subsequent attempts? I was told low-dose aspirin will probably not make a difference but safe to take if I wanted to. I was also told abroad I should take progesteron (I don't know why) but here they don't prescribe it as the PROMISE study has not reported... Could it make a difference though and which test would indicate its need?..

Still new and controversial, not included in the NICE guidelines, therefore not funded.

After the standard RMC testing came back normal I was put on progesterone, low dose aspirin and high dose (5mg) folic acid, and had MC4.

NK testing showed my levels were high and I was treated with 20mg prednisolone, clexane (no clotting issues, it's supposed to be protective for the placenta) progesterone and high dose folic acid, and I'm 28 weeks pregnant.
My consultant tells people specifically not to take aspirin unless for a diagnosed clotting issue, it can interfere with implantation. Progesterone seems to be controversial too, Mary Regan thinks low progesterone is a symptom, not a cause, of a failing pregnancy, and that taking additional progesterone just 'props up' the pregnancy temporarily. I haven't come across any downsides to taking progesterone though.
I think the research just isn't there yet for so much of it, different consultants have their own ideas about what works or doesn't and they don't really have the evidence. There are big studies underway on progesterone and on thyroid treatments at the moment, and Prof Q is publishing lots on NK cells, but it's all early days. Maybe in 10 years it will all be mainstream, but I don't have 10 years to wait!

You can ask to have day 21 progesterone tested. It shows whether you ovulated that cycle, a low level might be a justification for supplementing to give a pregnancy chance to implant.
Progesterone supplementation is widely used after IVF and has been shown to improve outcomes in that situation.

Thanks baking and tiny
Where did you do the NK testing, is it expensive?

i know it's in people's nature to do small talk but good God just had a moment at work...

I sent yesterday an email to a client ccing one colleague saying "I have been off sick so will get back to you soon bla bla"

This colleague just asked if I was feeling better, to which I said yes, and he said then "i've also not been feeling very well" and someone else piped up "is there something going round?"

I manage to control myself and just say "no, what I had is definitely not going round" and didn't go into more details...

(considering these two guys one has a 8 month + pregnant wife and the other one is gay, they definitely will not be suffering from recurrent miscarriage...)

Well done Me, I deserve a pat on the back and might treat myself to shite food for lunch...

I haven't done it yet, I am going to Coventry ina couple of months and it costs £360 I think...

www.uhcw.nhs.uk/our-services/a-z-of-services/consultants?cID=341

Thanks tiny, be brave!

Shit Tiny you make me feel like a complete wuss. Work have been so unsupportive that I only managed a day and a half back and then went off sick again. It's been 4 weeks now, and just the thought of going back makes me shake!

you are not a wuss tanny

am i correct in remembering that between my October and March ones you had a 3rd one? so you have had a lot to hit you in the face...

I am lucky in that as my office has hot desking (agile working as they call it) I can choose where to sit, so I go to the more quiet parts of the area allocated to my team... so I do tend to minimise the small talk...

tiny I am awarding you a medal for self control.

silverine I went to Coventry too. It's fine, for anyone considering it, no more uncomfortable/embarrassing than a smear test, sounds a lot worse than it actually is.

tanny sending you a ((HUG)) you have had a shitty time and you need to take care of yourself and recover in your own time.

silver your chemical should count. I hope you can get NHS to record it.

tiny yes it seems prof q protocol is less intensive as she prescribes a very low dose of steroids. Coventry I realise is not too far 50min train ride from Euston. I presume though that Dr S. must have a central London private outfit? Epsom would be very far for me too, even though I am in S. London.

Regarding getting the mc products tested. Unfortunately I have started to bleed (yesterday), so the process is underway. I know some people have caught it at home and taken to the hospital for testing, but I don't think I will be able to spot much.

Given my two very early mc and body's reaction to expelling it itself, does that suggest any cause more likelier than the other ie do clotting disorders or NK cells activity most likely contribute to early mcs? I suppose it may not be so straightforward to answer the question.
baking your story seems to be having a happy ending. I remember you from when I first had my mc in June and you really helped to answer my questions then.

tiny sorry to hear that work has been difficult. I just took one morning off for my scan and probably again tomorrow just to see if mc is complete. I have found it really hard to concentrate and keep thinking about next steps.

tanny I echo that. You have been through a lot. You definitely need the time off to recover both physically and mentally.

Hi all
Baking thanks for the info re the north, will investigate.
Welcome triple.
Still trying to chase up this mythical appointment..
Tanny and tiny thinking of you. I went back to work whilst still bleeding last year and I remember how hard it was x

Hi everyone, hello to all the newbies, sorry you find yourselves here
I only have 1 more test to do then I am free to TTC but I have the fear already all the nhs tests I have had so far have all came back normal but I still dont know if I can bring myself to try again especially now with the added fear of a 2nd MP

Hi purple the fear is awful and get that weird thing of wanting to be pregnant so much but not at the same time as life is simpler without it, sadly. Of course it will be worth it when we all get there (which we will). Isn't the likelihood of you having another MP very low?

Chin up purple you've had a crappy 6 months but the end is in sight. There's no law saying you have to TTC as soon as you get the all clear (or at all) not hit the nail on the head about how it feels to make yourself potentially vulnerable again.
Do you have a treatment plan in place for "next time"?

Just had my 4th MC which got to 6wks and 1 day. All of my miscarriages have ended between 6 and 8 weeks. I am blessed with a DD who is 4 next month. I fell pregnant with DD at 39 and gave birth at 40 and had a great pregnancy. Had tests and all clear so just going to keep trying and keep everything crossed for the next pregnancy. In the last pregnancy I was taking aspirin and deltaparine. We are not giving up yet.
Good luck to everyone else who is also trying and would be interested to hear if any of you are also in your 40's too and TTC.

Hi penguin I'll be 40 later this year. Did your Mc happen before or after your DD? I have been diagnosed with high NK cells which is something that tends to get worse with every subsequent pregnancy. I had my Ds1, a 10 week Mc which I believe triggered my issues, a v dodgy pregnancy with ds2 then 3 Mc at 8-10 weeks before I was diagnosed. It's not checked on NHS tests.
I have become a bit of a one-woman cheerleader for Prof Quenby in Coventry since she diagnosed me and I'm now 29 weeks pregnant. I spent too long listening to remarks about my age and bring told nothing was wrong, I was just unlucky and it would all be fine next time. Bollocks!
If you are interested in finding out more there is a thread about immune issues on the conception board called "TTC or pregnant on pred" that is worth a look.

Penguin I had DS when I was 39, and I'm now 42 and 11 weeks pg after 3 MCs (all around 8 weeks) last year. All the tests came back fine (although I didn't do the NK cells one), and I was told it's just 'one of these things'. No one actually openly ever referred to my age being an issue. I had my AMH checked, which was unsurprisingly quite low, but this just checks your egg reserve and doesn't say anything about their quality. My first pregnancy had no problems at all.
I'm on progesterone, aspirin and heparin, but only the first two have been prescribed because of my mcs, the heparin is due to my history of DVT/PE.
Did your consultant or GP discuss any medications with you? I know some people start taking progesterone in the second half of their cycle, to then carry on in case of a BFP. Have you been checked for blood clotting issues?
Don't give up hope - I know that's easier said than done, and I have often asked myself why am I doing this last year, but it is possible!
Good luck!