Recurrent Miscarriage Support Thread 16 - tests, treatment and trying again

[Justonemoretime]

Information, support, hand holding, tea, sympathy and a hell of a lot of combined knowledge - all welcome as we try to make sense of the RMC roller coaster of tests, NHS admin, heart ache and (hopefully) happy endings!
Please start with a recap of your stats :)

Hi Jady welcome and so sorry you find yourself here.

This thread is amazing though and lots of support and knowledge .

We defo have a few south wear people on here I'm sure of it so they'll be able to help you.

I'm Worcestershire based myself. Will be keen to find out how your appointment goes - mine is 23rd Feb at Worcester hospital and I am still waiting for a negative test after my ERPC on 3rd Jan so I can get my bloods done.

I confess I'm still off work but this is my 3rd mc and work is a haven of pregnant ladies and I just can't face it at moment. Good luck tomorrow!!

South Wear???? South West clearly!

Hello Jady. I am sorry for your losses. Well done on getting a referral. It sounds like ruh might have been a good choice in not having to wait too long for your appointment to come through at least which is no trivial thing. If your nhs tests come back clear then many on this thread, including tanny, have pursued coventry implantation clinic as their next step. It's self funded nhs and costs 360 pounds for their test and consultation. But you also need all the investigations the nhs will do to rule out clotting disorders or thyroid problems etc. I assume you don't have any info about the embryo? The good news is your chances of a healthy pregnancy next time remain very good. There are plenty of happy stories here among the heartache.

Soneone asked about my job. Sorry on phone and hard to scroll back. It's not that exciting, I think I have mentioned it before. I am a lawyer for the government which involves going to parliament to make new laws etc. I like it as it can be exciting (not yesterday!!!) but is more family friendly and civilised than my private sector lawyer job (worse paid but I don't starve) x

Hello my stalker! Jady welcome to the thread. I hope we can be of help on this horrible road.

I saw, and still see, David Walker at RUH, who is their RMC consultant.

He does pretty standard stuff, but was very supportive of my going to Coventry after mc5. He is not closed and egotistical like some, has had reasonably adult conversations with me, and has taken a personal interest in my case. Overall pretty good.

I've also heard that he prowls mn looking for reviews of himself!

Baking has seen a good consultant at Southmead, but as you know, she is very busy at the moment.

Personally, I'd keep your RUH appt, but maybe check that it is with Mr Walker.

Please feel free to ask anything more specific. I would say that after two MCs, unless something turns up in standard blood tests, they will probably say that it is "bad luck" and to get back onto the TTC bus when you're ready. A lot of the time they're right, but it is nerve wracking to do.

Must post my stats...

Baking's consultant had a cool name. Dr Valentine somebody.

Ah it was me Lurker I do remember now that you are a lawyer but didn't realise it was for Government. Rather more interesting than my account manager role...

Sorry jady. Just realised you have had some blood tests already. Try and get hold of your results to take along. That should speed things up a bit. I was tested for insulin, various clotting things and thyroid, as well as a scan to look at uterus shape etc. Was about to have hormone tests when I got my bfp. That was via my gp so maybe that's what yours ordered?

Just posted these on the old thread, like a total twonk!

Finally, getting round to posting my stats.

Me:42, DH:44

DS1 born in Nov 1999 Uncomplicated pregnancy, previous relationship
DS2 born in Feb 2012 Uncomplicated pregnancy, with DH
MC 1 Dec 2012 - 6 weeks, natural MC
MMC 2 Apr 2013 -11 weeks but measured 6, natural but horrific haemorrhage
MC 3 Oct 2013 - 6 weeks, natural MC, but not much bleeding. Referred for RMC testing but in the meantime got pregnant again.
MC 4 Dec 2013 - 6 weeeks, natural MC but was suspected ectopic. Empty sac finally appeared just before MC started. Thin endometrium seen on scan.
Blood tests and scan all came back normal (lining still on thin side) and healthy. Diagnosed as "super fertile" ( no shit!) and told to keep on trying, as one might stick.
MC 5 Feb 2014 - 6 weeks, natural MC, low bleeding. Was prescribed progesterone and clexane from 5 weeks, but sac was already empty and irregular shape.

After all that, I had a proper melt down and spent days in bed watching reruns of Star Trek. I was signed off long term sick, had fortnightly acupuncture and a massive list of quack medicines to help my lining develop. Went to Coventry in May, following genetic tests, and was pregnant before my NK cell results were back. Was treated with progesterone, clexane and prednisolone as a precaution. Tests came back normal, but I continued on all meds until I was roughly 12 weeks.

I am a complete Coventry protocol convert and wish their research was being followed by other RMC units and clinics as it really feels like there was more than good luck this time round.

Am currently 34 weeks with DC3. Very happy, can almost believe its happening, and only a week and a half until I start maternity leave...

baking my DD suffered a left sided celebral haemorrhage in the womb, this was only discovered at 36 hours old when she started having seizures, after MRI it was discovered that bleed had affected a 1/4 of her brain. I know it's a completely different thing that your little one may have but my dd was discharged on medication and we were told we just had to wait and see. My DH found this very difficult, it was a completely hellish time. I like you was the one to hold things together. Hoping for the most positive outcome for your little one

Hope everyone is doing ok

Waving hi to jady, so sorry for your losses. It's great that you're being sent to RMC - often they won't look at mc sufferers until after #3, which I think is lousy of the nhs.

I would agree with longest about keeping copies of results and suggest you start your own file with notes from appointments, consultant details and test results to take to every appointment with you. Always take a list of questions with you too and tick them off so you know they've been answered.

Hope your return to work isn't too difficult tomorrow, first day is bound to be hard but work can sometimes be a welcome distraction too. We're all here anytime you need to rant! XxX

Sorry for your losses jady. Am waiting for my RMC results and am London based so not much useful knowledge to impart from me I'm afraid.

catlover and longest's advice about keeping notes and writing down questions is very good. I never ever remember to ask everything I want to.

Thinking of you baking. I'm new here and don't know you as well as the other ladies but from what little I know you seem the most incredibly strong, kind and wise person. The waiting must be absolute hell. I hope you get the appointments you need and they provide the answers you need. Thinking of you.

march I've never used those OPKs so not sure but I know the hazards of having pots of wee lying around. Because I'm so half asleep when I wake up, I tend to wee in a jar and then have a shower and then take it into the bedroom and do it there while I'm getting dressed. Once I forgot to flush it away and left it on the chest of drawers when I went to work. My cleaner came that day . Mortified. She just left it. God knows what she thought it was. Oh who am I kidding, she knew it was wee.

Sorry about your cat brummie. Life just seems to take the piss sometimes. What you said about being able to post about your cat on Facebook but not about your miscarriages was so true. It's bonkers.

After positive start, AF petered out to nothing after first day. So one day of spotting, one day of full flow, one day of light flow, stop. Worried again. Raspberry leaf tea is ordered. Acupuncture is happening.

Has anyone had any luck convincing the NHS to do a scan to check lining quality?

Monten, I got a scan done a couple of times to look at lining, at uclh as part of checking my recovery after a fairly nasty erpc, once at st Marys as part of my RMC investigations and once in Coventry as part of getting the biopsy. You need to find someone who takes you seriously, easier said than done, I know.
I once left a pot of yellow liquid sun tan cream on the side in a hotel bathroom (dh and I were sharing a bottle and he'd gone off for the day), and I'd done a hpt which was in the bin. The sun tan lotion looked quite a lot like wee (of a seriously dehydrated person). It was disposed of by the chambermaid. I was quite embarrassed about that
Welcome Jady, sorry you find yourself here. I recommend keeping your own file, too. DIY joined up care.
Baking, thinking of you, hope tests give you cause to feel reassured soon.

Welcome jady but sorry you find yourself here but it sounds like you're getting tests done quickly which is good.

I have my first mc appt tomorrow it's private as my nhs one is still a few weeks away and just want to get things moving! Not sure what to expect really, my insurance covers five tests and appt with consultant so guess ill find out tomorrow how helpful he is!

I've had a scan on the NHS as part of my RMC investigations, where they checked my lining, it's possible!

Well, I see all your left pots of wee in bathrooms and bedrooms, and I raise you a screwcap container (the ones you get from the GP for wee samples), forgotten at the bottom of my handbag. For weeks.
Thankfully, the lid was on really tight.

Haha monten and just with the wee stories. I haven't mentioned to dh that I'm using opks because I don't want him to think I'm nuts (is that really bad?) So leaving it to cool is not going to be easy.

I once had a flatmate who used our shared measuring jug from the kitchen to pee into. I knew because i went searching for the missing jug and found it in a plastic bag with a used hpt. Wanted to see what she'd do so I didn't say anything but she put it back! Needless to say i never used it again and she didn't last much longer after that

Evening gang!

Baking sorry to hear your news. Lots of love and warmth my dear. Xx

Thanks, longest OK, no twins for you.

twilight and bootles sorry to hear work is interfering with the real stuff. I'm in the same boat as I'm still signed off with 'anxiety post miscarriage' added to the 8 weeks I had off with #4 last year I am burning though my sick pay.

Welcome, jady, sorry for your losses.

Bootles-I'm afraid my optimism is at a v low ebb today so instead I'll give you my pirate joke which served me well at the weekend.

What is a pirate's favourite vegetable?
ARRGHtichoke

My breaking news: last week I went to the TABLET trial at Bristol and had my blood taken to test for thyroid antibodies. The lovely nurse called today and it turns out I have zillions of the beasties. All zooming around. And women with thyroid antibodies have double the chance of a miscarriage it seems. I signed my informed consent form and am now in possesion of a bottle of mystery capsules either thyroid hormone or a placebo.

Was feeling positive and pleased with my mystery capsules but DH and I have had terrible communication problems this evening. He's exhausted and I'm fragile. Recipe for upset.

Xx to you all

welcome jady my consultant at Southmead was Dr Valentine Akande. I'd had some private tests after mc3 so after mc4 they couldn't do a great deal for me - tested the embryo as normal, reviewed all my normal tests, threw up their hands... But they did look after me very well in my next pregnancy on the Coventry protocol. I doubt there is much to choose between them, there's a pretty standard set of NHS tests.

floweroct good luck tomorrow.

Thank you so much for all your messages of support. If nothing else going through horrible times makes you appreciate your friends and family, both here and IRL. I don't want to derail the thread with my worries so I will have a think about setting up a thread somewhere which you can follow if you wish. I did post in SN here and only got one (lovely) poster responding, but I have found a FB support site for the condition which is a bit more active.

baking stay with us for mutual support. You brought lots of us in from the cold. A specialist group like the one on FB sounds like it does have something to offer you information and similar experiences. Helpful for you, I hope. X

Thanks all for the warm welcome.

I asked GP to refer me after reading that some have been referred after 2 MC's due to age, figured me & DH fit into that category. GP was lovely and arranged blood tests the following day for what she called giving me a MOT to check for anything obvious. Think she wanted those done before she referred me. Didn't have to get negative test first though, so maybe different bloods Brummie, not sure. Was assuming they'll pass info over to the hospital. Will give you full update after first appointment.
Chose RUH over Southmead for that very reason Longest, but pleasantly surprised at just how quick.
I'll see about getting blood results from GP to take with me to appointment.

No info about embryo, I did ask doctor when MC confirmed if they could test it, but she said she'd asked in the past and it had been refused. Possibly could have asked again at ERPC, but was too nervous about GA to think sensibly.

Just going to take tomorrow as it comes, if it gets too much I'll have to leave again I think. I'm anticipating spending the day catching up with new boss and emails which hopefully won't be too taxing.

Thanks for tips Tanny, I was reading a thread back from August (I think) from my mobile earlier when you had a scare of having another MC with symptoms disappearing. That was when I realised there were A LOT of these threads and had to get my laptop out so I could skip ahead a few months and check you were still pregnant. So pleased that you are!! Pretty sure appointment doesn't give a name, but going to log in and check now.

Thanks for other tips all, will def start making own notes etc.

I don't know you Baking, but feel like I do a bit having spent quite a number of hours reading all the good advice you have given people over the months. Thinking of you in this difficult time

Baking please stop by whenever you want a hand to hold. We will understand if you don't feel able to offer your own advice atm. Glad you have found a Facebook group. I hope you get some more posters on your thread too. Purple I am sorry you have been through a similarly scary time. I hope your dd is doing well.

and counting that's a great positive step. I really hope your capsules do the trick! Thanks for the pirate giggles too.

Hi Jady you are fortunate to be referred after only 2. I was under Birmingham Women's Hospital for number 2 and begged for help as I'm 38 (was 37 then) and got told to jog on until I'd had 3 and they wouldn't budge.

I've now moved house and come under Worcestershire and have been told because of my age Worcester would've helped after 2

But is what it is and sure enough number 3 came along (sticks up 2 fingers to BWH)

I had a load of bloods of taken before my ERPC but was specifically told I couldn't have the testing bloods taken whilst still pregnant. I have paperwork all ready.

Just taken test. Still fucking positive. 17 days after ERPC and it's still positive. It's faint but it's a definite clear line. I just want it to be negative now so I can get my bloods done. Why is it still positive??!!!

Sorry for f'ing and blinding. Just so frustrated and it's ongoing. I'm ringing docs tomorrow to get an extension to my sick note as there is no way I can cope being at work on my due date so close to losing a baby. I guess I should mention I'm still positive 17 days later.

FFS

brummie sorry it's dragging on. If it was me I'd be asking how long they expect it to take to get a negative and wanting at least a hcg test so you can see how quickly the levels are decreasing.

Sorry not to have posted for a while - I am away with work at the moment . Hope to catch up properly this evening but just to say brummie - sorry it is taking so long. Each time it has taken around three weeks before I got a negative hpt. But as barking says if you are worried then you could ask them to monitor your levels to see if they are falling properly.

Hugs all. x

Brummie, maybe they'll scan you just to check every thing had gone. I had 'retained products' after two of my erpcs and if its just a little bit it should sort itself out. Its soul destroying, though. when you just want to move on. l must say, not sure why they can't do at least some blood tests? I got an arm full done the day after my erpc when test was still full on positive. I suppose it depends on what the test is and what they've done before, if any? Mind you, the GP ordered them for me. not RMC clinic so maybe she didn't realise you need to wait. Good luck today anyway. x

Counting - that sounds like exciting news. Fx whatever they've given you helps (I'm a psychologist so a big believer in the power of placebo too).

Brummie - sorry it's all taking so long and being frustrating. I can't even remember how long it took to get a bfn after mine but I remember the irritation of it reducing me to tears on more than one occasion.

Baking - glad you've got more support on the fb group. I wish you'd got more out of your thread. You're often in my thoughts and wishing you love and strength.

I'm on my way to St Mary's at the mo for scan at 9ish. Don't know what to say about it... You all know.