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Miscarriage/pregnancy loss

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Recurrent Miscarriage Support Thread 30 - Support for Tests, Treatments and Trying Again

765 replies

forestnest · 04/09/2015 12:30

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread: www.mumsnet.com/Talk/miscarriage/2441180-Recurrent-Miscarriage-Support-Thread-29-Support-for-Tests-Treatments-and-Trying-Again

(stats etc to follow)

OP posts:
barkingtreefrog · 30/10/2015 10:39

Hello all, on holiday this week and only just got WiFi today, and very little battery left as a result so must be brief!!!

Great to hear all the good news stories. I was wondering how long I've been on this thread now as I remember all the bfps for the thread babies, and as my last mc was June/July last year I guess it was since then!

flipper Are you NHS or private for the ivf? I only got one round of ivf on the NHS. I had two previous iui rounds, one of which worked (then mc). The first ivf round failed, so we had the nk cells biopsy before having the fet. The results came back 'normal', but having got a copy of all my notes for the private round of ivf we're currently doing, I saw that the levels were 6.2%, which would have been enough for Coventry to give me the protocol, which was annoying. I don't think the fet would have worked anyway, one embryo perished in the defrost and the the other was damaged.
I had loads of immune tests done at the new clinic and they found lots of issues, so I'm on loads more drugs this round. RMC had already diagnosed factor v leiden thrombophilia so I'm on fragmin for that. I'm on progesterone for the nk cells (my blood nk cells were elevated and the killer activity very high as well as the borderline uNK result) and I'm also having intralipid drips.
The tests with the private clinic cost £1500 but without them we wouldn't be on the treatment we're on now, so for us giving it our very last chance, it was worth it.

I've got an interesting situation this afternoon. Heading to the beach on an organised surf trip and not sure what time we'll be back. I've no idea where I'm going to be able to take my injection as we're not in our car and I doubt there will be toilets...

mrsdiddlydoo · 30/10/2015 13:02

pop you just have to do whatever you need to help protect yourself. And hopefully it will get easier once big dates have passed. Pleased scan was good! I'm sure any reassurance from it will be dwindling already. Thinking of you x

bootles · 31/10/2015 08:23

Hello all, been awol for a while agaun, struggling to keep up on here and fb. Coming on here feels like coming back to an old friend though. Lovely to hear of betty's brand new betty! Huge congratulations! And cloud, brummie, jady, flen great to hear you're doing well. flower that first trimester is so gruelling, really hope you get reassurance from another scan soon - it's just cruel to make any of us go too long at that stage without regular scans. barking god that process sounds incredibly waring, I'm glad you have the chocolate brownues to help you through it. Everything everything crossed for you.

Welcome newbies, so sorry to see so many of you here, and sorry for your losses. I hope it's helpful to see the positive stories on here.

Waving to all x

bootles · 31/10/2015 08:24

Sorry to those I have missed! pop keeping everything crossed for you too, and hoping you get the scans to reassure you x

BettyButterchops · 31/10/2015 23:06

Thank you for lovely words barking bootles march bellende flen brummie diddly and bumble They mean everything from the ladies on here. I stayed off hte thread as I went into a sort of denial and detachment thing about the pregnancy - a protective measure I suppose as I couldn't ever assume it would be alright. I'm so pleased to hear of other babies, pregnancies and hand-holding through the shit that life throws at us. This was the only place I could find anyone else that knew how R Misc feels. I'm wishing BFPs, happy scan news and positive pregnancies for everyone. Lots and lots of love and THANK YOU for all the support over the past few years (I lurked for about a year and a half before joining the thread a couple of years ago. The women on here are amazing. And if anyone hears from baking pass on an cuddle for her and Faith xxxxxx

Flen · 02/11/2015 13:33

pop just sending you hugs and strength, those first weeks are total hell and I completely relate to what you said about going for the scans so they can pick up a mc. Just get through it however you can.

barking every time I read a post from you I am bowled over by how amazing and brave and determined you are. So there.

MumTumgot · 02/11/2015 14:46

Hi all ....
Got my bfp on Monday last week cb digi said 1-2 weeks did another this morning still reading the same .... Very anxious as sure it should have gone up ... Made worse by my history ... 4 mc all between 5-11 weeks.... Mostly mmc as baby's heartbeats hadn't even got to starting hence the nervousness with my levels not rising enough to change the cb digi ... Hand holding and support much needed until next Monday when I've been booked in for an early scan ... Also bedn put on aspirin daily and progesterone pessarys by doc today as bloods from last mc showed low progesterone levels .....

BumbleBee0 · 02/11/2015 18:21

Welcome tumgot, I'm so sorry for your losses Flowers
The early days are brutal after rmc and I really feel for you. CB digis are notorious for causing unnecessary worry by not ticking along as expected. Have you used any other tests to compare lines etc? It really is difficult when you just don't know what's going on and you just have to wait. Do you have any symptoms? It's good that you're taking the progesterone this time as hopefully this means if this caused a mc in the past it shouldn't this time. xxx

barkingtreefrog · 03/11/2015 00:48

Hi tumgot, sorry you have reason to be here but fingers crossed this is your time. Cb digis aren't always a reliable indicator of a rise in hcg levels, so try not to read too much into it what a stupid thing to say

So, a little update from me for those not on fb.
My cycle has been cancelled. Was supposed to be my baseline scan today to see if I could start stims but AF never showed. Got a bfp instead. After 4 years of nothing without assistance Shock.
Nurse thinks the suprecur triggered my hormones and the combination of the scratch and the intralipids helped implantation. Not really a natural pg as such, but a hell of a lot easier than what I was about to put myself through again. Still a looong way to go before I can get even a little bit okay about it though. Been here before.
I was hoping to get a bfp on a heavily medicated ivf cycle, but I'm on CD 33 and only today started the prednisalone, fragmin, and progesterone. Booking another intralipids infusion for next week. Had a blood test instead of the scan today and hcg is 92. Means nothing on it's own, hcg was fine last time. Have to wait another week for a second blood test to see what's happening.
So, there you go. Totally numb. And insomnia is my new friend.

Floweroct2 · 03/11/2015 13:22

Oh my god barking that is flipping amazing news! Really, really hoping this is it for you x

Good to see some good news stories from some oldies!

Just an update from me, paid for another scan yesterday and all looks good so far. Measuring 10+6 but I'm only 10+3. So this is the furthest I've ever been so keeping fingers crossed. I've got to start weaning of the drugs now so I'm worried that something will go wrong with that!

MumTumgot · 03/11/2015 17:28

Congrats flower and way to go barking :) tentative congrats all round ...

No I've not tried any other tests I just thought I'd sit here and mental until Monday ... Hubby just seems to have accepted its failing already as it has so many times already ... And I'm inclined to agree had some really draggy feelings today like low period pains as much as i try to tell myself it's stretching and prepping deep down I've been here before ....

Marchgirl · 03/11/2015 19:30

Welcome tumgot, sorry to hear what a rough time you've had, but congratulations on this new pg. Keeping everything crossed for you. Digis are notoriously inaccurate. Hand holding for Monday x

flower, such great news on the scan. So excited for you.

barking, still in shock (probably not as much as you), but really willing this on for you xx

barkingtreefrog · 03/11/2015 20:26

Great news flower!
I'm also holding on until Monday tumgot - that's when they'll measure my hcg levels again.
March total denial here. This feels like it's happening to someone else and I'm a detached spectactor who is just curious as to what the outcome will be. It's really rather strange.

cloudjumper · 03/11/2015 21:08

barking One day at a time, step by step. That's all you can do now (well, apart from the drugs!). But the fact that you got a bfp is certainly a step in the right direction! The next few weeks/months are going to be tough, but you have everything going for you! Crossing everything for you!

Great news about the scan flower!

Snoopysimaginaryfriend · 03/11/2015 21:27

Just de-lurking to say an absolutely massive congratulations to barking! Such amazing news, never lose hope!

bootles · 03/11/2015 22:51

tumgot hello, so sorry for your losses. As the others have said, digitals are not so reliable with the weeks. Hand holding from me, it's horribly hard x

flower that's wonderful! I hope it gets you through, mentally, to the next scan x

barking, like march says, I'm still reeling from your news, and still willing you on with every bone in my body x

snoopy, hi! Hoping you are ok. We are all still here and on fb if you ever feel the need to chat/rant etc x

Minnie74 · 03/11/2015 22:52

Welcome tumgot congrats on your bfp and totally get the worry after rm. Keep taking each day at a time and remember today you are pregnant!

flower great news on your scan. Not long to go till 12 weeks now.

barking still totally over the moon for you. Hoping Monday whizzes round, concentrating on anything else must be impossible!

snoopy good to hear from you. Hope things are moving in the right direction for you.

Found out today that my work friend is having a MC. She's 28 been trying for about 6 months and has pcos so was worried about not getting pg. Really sad for her as that first MC just ruins any pg that comes after. She was fab when I had my last MC too.

Also think I might be back to posting here more as I accidentally posted a rant about my friend and babies to my actual Facebook pg and not the secret group. Cue major panic and long texts of apology (from me and her to be fair!) I just thank god it wasn't my previous post about Dh! Might have been facing a divorce!

barkingtreefrog · 04/11/2015 03:05

Minnie/bootles/snoopy/cloud thanks for all the good wishes. I actually managed to sleep tonight for the first time since getting back on Saturday, then woke up at 2am and haven't managed to drop back off again yet... It's frustrating but almost reassuring, given it started before I got the bfp so can be counted as a symptom rather than put down to stress.

FourForYouGlenCoco · 04/11/2015 08:38

Just catching up here, still lurking around, congratulations tumgot!
Fab news on the scan flower, hope coming off the drugs goes well, I know it's not really any help but everything has gone well until now, the chance of things going wrong are so minimal at this point!
barking also huge congratulations, what a rollercoaster for you!
Am a few days late to announcements so hope things are going well for everyone!

BumbleBee0 · 04/11/2015 09:48

flower wonderful news on your scan. Try not to worry about stopping the drugs, it will be fine. Not long to the 12wk scan now, it's all sounding so positive. Smile

tumgot good luck for your app on Monday, really hoping it's good news.

barking I've been giddy since reading your news!! Did you speak to your GP about getting hcg tested earlier? It's really positive you have all your drugs sorted, they're bound to help. I'm going on hol this afternoon but will be checking Fb and this thread for updates from you. Smile

minnie how sad for your colleague. The thought of knowing what they'll go through and how it will affect them afterwards is very sad. Sad

Oh god yes that would have been bad!! He wouldn't have found the whole situation funny then and thought it 'was just you having a rant', ha ha!!! I bet that would be a type of post to go viral too!! Blush

kanelindsey · 04/11/2015 19:53

Hi ladies i was hoping i might be able to join this thread and get some advice from you all....i have read this thread and the one before but it will take a while before i learn everyones name and circumstances!!

My son was stillborn september last year at 32 weeks (twisted umbilical cord and growth restriction)...since then we have had 6 chemical pregnancies with the lines fading after 3-6 days. My periods have also been extrememly light since our son was born and my lining has been measuring 7mm or less.

I have recently went private to a consultant who specialises in recurrent miscarriage and he suspected i have elevated nk cells however the test has just come back as normal. Am at a loose end. I am already on progesterone, high dose folic acid and baby aspirin but we have still had another 3 chemical pregnancies.

He is going to prescribe clexane to take after ovulation but all my blood tests suggest there is no clotting issue so am really doubting this will work...

Have any of you had recurrent chemicals and found a treatment plan that worked??

Sorry for the rant and gatecrashing the thread i am going to keep reading and get caught up x

barkingtreefrog · 05/11/2015 07:25

Kane I'm so sorry to hear your story Flowers. Was the nk cells test a blood one or a uterine biopsy? They can give different results.
I don't have any advice I'm afraid, just wanted to say welcome to the thread.

kanelindsey · 05/11/2015 07:47

Thanks so much! It was a uterine biopsy.....i go back on tuesday to discuss the results in full detail and get a new plan x

Marchgirl · 05/11/2015 10:54

Welcome kane, but sorry that you find yourself here and sorry to hear of your losses. The late loss of your son must have been particularly painful Flowers
If it was uNK that was tested, then try to get your actual percentage. The boundary for what is classed as high varies between clinics. At the Coventry implantation clinic (where many of us have had success), anything over 5% is high, and treated with steroids. At other clinics, the threshold is higher so if you were in that middle ground it might be worth getting a second opinion. I've had 5mcs, the last two were very early at 4+2 and 4+5. I was diagnosed with high uNK by coventry (7.9%), and I'm now pg, 20+4 having taken steroids, clexane and progesterone, all prescribed by coventry for the first trimester, as well as metfolin (instead of folic acid - self prescribed!).

Coventry use clexane for its cytoprotective effect on the placenta (stops the placental cells dying), rather than its anti clotting qualities, but it's not normally started until a location scan at around 5 to 6 weeks, so whilst some people really feel that's what makes the difference for them, that might be a bit late for you. I have no idea what effect it would have taken earlier, but perhaps worth a try. Make sure you are scanned at the earliest opportunity to ensure the pg is in the right place though, as blood thinners and ectopics are not a good combination.

The other thing I might suggest to get your cycles back on track is acupuncture. As someone with a scientific background, I was a total cynic until I tried it after my third mc, but it really sorted me out. A lot of people have found it helped to get their periods more normal again, as well as for stress / anxiety. I go to a community clinic, where its a short appointment and they treat two people at once (in separate rooms! ), which made it much more affordable (£15 a session). Other people who didn't get on with acupuncture found reflexology was similarly helpful.

Some recent research suggests that aspirin may do more harm than good in the absence of any clotting disorder, but the jury it totally out on that one, and some people here are taking it and others not. Not trying to scare you, as many people have had success on it, but something to do your own research on.
That's probably way overloaded you already, so I'll shut up now, but please feel free to ask any other questions, or if you just need a bit of hand holding for trying again, we are here.

barkingtreefrog · 05/11/2015 14:10

Kane - March has put it far better than me but I was going to ask what your percentage was. I was 'normal' but found out later the figure was 6.2%, which is high enough for Coventry. I also had blood nk cells tested at a different clinic and they came back very high, with high levels of killer activity. One clinic said 'normal' but at two others I qualify for all the treatments.