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Miscarriage/pregnancy loss

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Recurrent Miscarriage Support Thread 25 - tests, treatment and trying again

999 replies

Marchgirl · 07/06/2015 19:08

Tea, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so hold on to your hats!
Previous thread here

OP posts:
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Marchgirl · 11/06/2015 08:00

kazz, the Coventry protocol would preclude you from doing response trial due to the meds you would need to be on. I went to Coventry with the plan that if it showed high nk I would leave response and follow Coventry, but if nk was normal I would stick with response trial. My high result is why I'm a bit of a fraud on the response trial thread add I'm no longer a candidate! But i was in two minds about giving response a shot first anyway, as you only get one go and prof brosens spoke highly of the response trial. In the end I decided the risk of being on the placebo was too great given I had a treatable diagnosis.

OP posts:
bootles · 11/06/2015 08:10

jady I'm still hand holding for today...

cat hope all goes well with dh

sebs good luck with appointment

littlebear you kept that scan quiet! That's great, how many weeks are you now?

kazz uNK means Uterine Natural Killer cells. They are a normal type of white blood cell that we all have both in our blood and uterus. For many years it has been a bone of controversy as to whether they are a cause for RMC or not. St.Mary's in London now say it isn't, but places like the implantation clinic in Coventry are doing ongoing research and believe that there is a link. They are still gathering data though.

Despite the name, these NK cells do not attack the foetus as such. Rather, high levels of them indicates that the womb lining is having an inflammatory response, and it is this inflammatory response which prevents the lining from functioning properly, cells age too fast, and essentially the embryo is unable to survive. Myself, baking and others have had MC's where the embryo is slow to develop, behind for dates, and then the HB gradually, over several scans, slows and stops. If found to be chromosomally normal, this is the sort of thing that is thought to be related to high NK cells. As are other patterns of loss. Its never straightforward, and I hope I have explained it correctly.

It's certainly not a simp!e 'fix it' to have high uNK cells and be started on prednisolone (to reduce the inflammatory response), progesterone (to drive the lining, and make it as effective as it can be) and heparin (for it's protective effect on developing placental cells) - for some this works, for some it doesn't, but we have lots of success stories on this thread following the protocol.

bootles · 11/06/2015 08:18

I don't mean to cast doubt on the Coventry protocol, I am on it myself, and I think its something like 60/40 in favour of success on the protocol, and as I say there is a lot of success here. I just think it's important to note it's not guaranteed successful treatment. Nothing is. Hopefully pushes the odds in a better direction though. Also Coventry are the people I trust most, much more than my RMC clinic, who I no longer see. But that may be just me.

Jady77 · 11/06/2015 08:18

Great news Littlebear

Cat I hope DH's op goes well today and good luck with consultant today Sebs

Thanks for handholds, it's not until 4pm so going to be a long day!

Thats sounds like a great explanation Bootles, I wonder if there are other links too. E.g. I suffer with plantar fasciitis to the point of barely being able to walk in the mornings. Since taking the pred the pain has vanished so presumably it's reduced inflammation in my heels too.

Sunandrainbow · 11/06/2015 08:20

jady - hand holding for today hun. We are very close in dates then! To be honest I've kind of been blocking it out whenever EDD was mentioned as couldn't deal with thinking that far ahead. I think they may have said around 9th / 10th jan. What did they say to you??

sebs - good luck with the consultant this am! Stand firm!!

x

CheesyMash · 11/06/2015 08:45

Good luck with your scan today Jady, thinking of you and hand holding,

And good luck for your appointment sebs, good to hear they have been quite proactive and I hope this means they'll be open to giving you all the drugs you require Wink

Excellent news on scans bootles, bear and cat! GrinGrinGrin Makes my day when I read of another positive scan.

Warm welcome onestep. So sorry for your losses and that you have to be here. I'm sure you'll find lots of support here though, these ladies are quite amazing.

barking How is your dad?

I also have high uNK cells at 9% (after biopsy at coventry) so will be on prednisolone next time. Currently 4dpo and have sore boobs (which I've not had for months) but Google says it's due to natural rises in progesterone after ovulation so too early to be a pg symptom but at least it might mean my natural progesterone levels are higher which is good.
Interesting reading about a consultant not prescribing 400mg progesterone due to anxiety/depression, I had 2x400mg last mth and it felt very dark coming off it for a couple of days so this time I'm going to cut them up and do 2x200mg a day.

cloudjumper · 11/06/2015 09:17

Good luck to everyone having scans and appointments today!

Great news about your scan, littlebear

Welcome onestep

I'm counting the days to my holiday - 2 more days of work to get through, but they are going to be tough. Better get my head down!

SashaKerr · 11/06/2015 09:46

This reply has been deleted

Message withdrawn at poster's request.

Kazz2112 · 11/06/2015 10:08

Cool. Definitely something ill look into. Maybe ficus in getting pregnant fir the trial and if that doesn't work look into unk cell testing. Wonder if there's anywhere more local?

Justonemoretime · 11/06/2015 10:17

Kazz, Coventry is pretty much the only place (maybe one other place? Certainly not routine on the NHS as still in research). Some places might test your blood (private, £££), but the biopsy is pretty much Coventry only. You only attend once, and the rest is over email/phone.

Justonemoretime · 11/06/2015 10:19

Also, you need to be 2 months post mc to go to Coventry, so if you mc again in the meantime, there will be an enforced wait to ttc if you do decide to go.

OneStep2015 · 11/06/2015 10:34

Thanks very much for your warm welcome and advice ladies – has definitely helped pick up my mood this morning!

@Matchgirl – That is crazily spooky with our dates! I'm so sorry you have been suffering too.

At the time of going through the first miscarriage you feel like you are the only woman in the world going through it, but as time goes on and the more you speak about it to other people and investigate and find out a little more information bit by bit (mostly through googling your little fingers off in the early hours of night unable to sleep!!!) you realise so many are going through exactly the same.

I've met two other ladies recently, also suffering 3 miscarriages, after speaking with them I walked away feeling more sorry for them than myself. One lady I happened to meet through another friend at a birthday afternoon tea, listened to me as i talked about my miscarriages, answering another lady who asked if I had any kids. She suddenly blurted out that she also had 3 miscarriages, I could tell should looked very up tight, closed and very shook. We spoke for a while, I felt I needed to talk with her and try and help her. I don't hold back anymore, with talking about miscarriage, I've chosen to talk for my therapy and it really does help. Sometime afterwards, through emailing each other a couple of times, she said she hadn't spoken to anyone except her close family about mc and now she was beginning to talk and was beginning to feel a bit better about them.
Miscarriage is such an exhausting and an extraordinary experience.

I have called the Miscarriage Association a couple of times to speak to a counsellor in shear desperation, but honestly after I've finished the call I've found myself even more frustrated and even angry, at the so little advice given to me. However I do realise they are just someone at the end of the telephone with a similar experience to myself just giving their time to listen, but I feel so strongly that we ladies desperately need better support and campaigning to highlight miscarriages and the struggle for better management and treatment.

I too came away from Coventry feeling at last, that the team there are completely on our side and will do their upmost to help you through. At last somebody was listening to my husband and I. I have been prescribed steroids to take from bfp, but I suffer with nosebleeds so have decided not to use heparin. My doctor is unable to prescribe heparin in my local authority as the healthcare trust has blocked it due to a patient death, it must be administered in a hospital environment and monitored there.

I haven't read all the posts on this thread, so apologies to you all if I'm repeating what has already been said. I will take the time later to read through everyones posts.

Thank so much for the support, its sad we are all suffering, but such a great thing that we can share and talk on here and best of good luck to you all.

OneStep2015 · 11/06/2015 10:44

Also just for the stats!… I'm 39yrs (40 this Sept) my husband was 39yrs this May.
I was previously in a relationship for 8 yrs (married for 4 of those years), had a lucky escape, and was lucky to find my wonderful husband on Match.com, we married in May 2013, feeling so so lucky to have him in my life.

Frecklefire · 11/06/2015 11:29

Welcome onestep, so sorry to read of your difficult journey so far. Hope you will find this thread supportiveSmile

So, don't know if its psycosymatic afyer what pop's** consultant told her about the 400mg giving anxiety and depression but i'm in a bitchvof a mood today. I really unnecessarily snapped at my dad this morningSad (mainly because i am jel that he and my mum are getting to be with ds on this beautiful day and i'm working!) Am wondering if it's pmt and maybe a bfn this month again (not testing until the weekend as only on day 4 of prog, so shouldn't really test for another 3 days, and have no symptoms what so ever...Sad

Frecklefire · 11/06/2015 11:36

Sorry for the self-centred post, I thinking of you ladies waiting for scans!

Marchgirl · 11/06/2015 11:48

Hand holding freckle. Bfn for me this morning and zero symptoms for me either Sad, so i know how you feel. I know it's early but I don't think it's happening again this month. Think I might just go to prog from bfp next month (not that I think that's the cause of not catching!)

OP posts:
OneStep2015 · 11/06/2015 11:58

Thanks Frecklefire. Feeling for you.

I had a massive downer after stopping the Progesterone this month (first time taking it). Sat in the living room the night before my af arrived proper and just balled my eyes out, telling my husband I absolutely hated myself. My eyes were so swollen from crying the next morning I could barely see properly for a few hours! It also made me really sleepy during the week taking it.

i normally get one grouchy snappy mood day a couple of days before af, but that's it.

Been a difficult month, my younger sister has 2 year old twins and has just had another baby girl. Spent a couple of hours with them all yesterday afternoon… its hard.

Lauren83 · 11/06/2015 12:02

Just a quickie from me... I received a letter from Care my ivf clinic that they sent my Gynae at St Mary's manchester requesting a hysteroscopy and recurrent MC tests, my GP requested them too but St Mary's said they are still considering it, just got to wait and stalk the postman now I guess. Would of been 12 weeks today, damn signing up to email alerts I got one at 4am reminding me (not that I'm not counting every day myself) it's nearly 4 weeks since my ERPC so hopefully get a bleed soon. Hope everyone's ok

sebsmummy1 · 11/06/2015 12:03

Oh March I'm so sorry you think it's BFN this month Sad. You've been so amazingly supportive to us all and I want us all to get our sticky BFPs.

I'm at the hospital waiting to check HCG levels. My consultant was actually so amazing I feel really awful suggesting she was unhelpful ( I think her secretary's total lack of interest made me feel she was less than interested too).

She has given me a prescription for progesterone. 2x 200mg daily but I think I'll top that up with the progesterone Tanny kindly gave me (arrived today, THANK YOU!). I have to give blood again on Monday and they will check they have risen as expected. Then they will book a scan and once they know the pregnancy is in the right place they will start me on Fragmin.

So I am calm again and wanted to thank everyone let me freak out all over this thread for the last few days xxxx

Frecklefire · 11/06/2015 12:09

Did you test already march**? You must be on day four of progesterone too, 10 days post ov? I'm thinking the same about next month, and i usually fall so easy - maybe this is a good thing? No duff egg??!! But it is hard to swallow too. I need to shut my face, keep trying to loose weight because any time from now til xmas for bfp wpuld be perfect. Must be patient...ho hum...

Brummiegirl15 · 11/06/2015 12:24

Hello OneStep

I'm so sorry to hear your sad story, hopefully we can help you through this.

Sebs am so pleased you had a good appointment and you are well on your way.

I am absolutely cacking it about the scan tomorrow - so frightened. Me and the scan room do not have a good history.

I've emailed Mr Watts about aspirin and he's said not to take it. But I'm seeing him on Monday anyway

Just noticed another one of my colleagues is pregnant - although she sits a few desks back from me. I still feel very uncomfortable seeing pregnant women, which considering I am now pregnant, is a bit weird

But I am terrified about tomorrow Sad

Brummiegirl15 · 11/06/2015 12:25

Sorry that's a very me post. March I'm sorry about your BFN Sad Freckle big hugs

OneStep2015 · 11/06/2015 12:34

Thanks Brummiegirl15, thinking of you too.

I won't go to Stoke Mandeville EPU anymore fills me with utter dread, I'm now under the John Radcliffe RMC. xx

Justonemoretime · 11/06/2015 12:46

Hello, One step? Thought I recognised your name from my blog. So glad you've found this thread, the ladies here are brilliant for support and knowledge! Smile

Justonemoretime · 11/06/2015 12:47

not sure why ? - fat fingers here!Blush