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

[Marchgirl]

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

Hope it helps a bit Annie got everything crossed you have a plan in place soon.

Brummie my sickness came and went so much that I convinced myself several times it was over. I agree with Spartacus that the boobs are a good symptom to have so take heart in that.

Spartacus I agree adoption isn't an easy option but it's an amazing thing to do. Hopefully you won't need to take that path but might be worth taking your DH to a local open evening to find out more about it so his eyes are opened.

I agree Spartacus adoption is an incredible thing. Lots of Local authorities do open evenings

I'm on 400mg twice daily and been ok. Only had 1 day where I had a bad tummy but certainly not felt depressed

Thanks @ThePopandCry for pointing me in the right direction to this latest thread, posted the following on an old thread!

Hi Ladies

Thought I'd introduce myself, after a couple of years of non Netmums membership and darting in and out of googling here over he last couple of years, thought I'd join up!

My husband and I married in May 2013, we started trying right away and it took us until the Dec 2013 to fall pregnant.

I've had 3 early miscarriages.
MC1 – at 6.5 weeks directly after an early transvaginal scan at EPU. I'd had 2 previous early scan to make sure that a small amount of ovary pain I'd experienced wasn't an ectopic. The 3rd scan at EPU took well over 10 mins, a trainee and a fully qualified sonographer scanned me. The trainee didn't hurt me at all, but when the fully qualified sonographer took over she was digging around and caused me a lot of pain. They eventually found an empty yolk sac at the top of my uterus. I literally got off the scanning bed and walked out the door of the unit and it started. Then it started proper Xmas Day 2013, had a minor car crash on the way to the local hospital and miscarried proper there.

MC2 - Missed miscarriage at 12 week scan, Oct 13th 2014, (13 NOT my lucky number either!!) although I had suffered spotting from 7 weeks and asked the doctors and A&E for reassurance as I just knew something was not right and had persistent left shoulder blade pain, I was told to hang on for 12 week scan and was told there that it hadn't progressed beyond 7 weeks.

MC3 - Mid Feb 2015 at 4 weeks and 3 days. All of the miscarriages managed naturally, although no.2 resulted in contractions and awful bleeding on a car journey home and managed at a wonderful local urgent care centre. Went in to a bit of shock in the early hours later at home and was looked after and monitored by wonderful ambulance crew at home.

I've had the full gamut of blood tests twice as the first ones were lost. All are normal.

I decided after MC3 to go for the uNK cells test at Professor Quenby's clinic in Coventry.

I've just had my results from Professor Quenby and I have 7.4% uterine Natural Killer Cells. 5% is what they would call the upper limit of normal.

I started on the Progesterone on CD21 came off CD28, started spotting on day 31, period started proper on day 33. I am normally as regular as clockwork 28 day cycle most of my life. My period this month is very blood red and very heavy this month, not like normal at all with a bit of abdominal and under rib pain.

Can I ask has anyone else suffered this after taking Progesterone (cyclogest)?
Also if you've been diagnosed with high uNK cells at Professor Quenby's clinic what was your percentage count?

Thanks in advance.

Can I check what dosage of heparin is standard on the Coventry protocol please?

Welcome to the feed onestep I'm very sorry to hear of your losses and your difficult journey so far. We are a friendly and knowledgable group and I think you have certainly found the right place to be.

As someone who's had lots of progesterone treatment, I can assure you that the longer cycle you've experienced is very normal. Progesterone will extended your luteal phase and I believe this can also cause heavier bleeding as the lining has more time to build. I've never noticed the heavier bleed myself as I always have very heavy periods anyway but certainly the lengthening of cycle I have had.

I don't know much about NK cells as doesn't apply to me but I'm sure someone on here will know. Hope between us we can help you through. There are ladies on here who have suffered many mcs and have gone on to have a healthy baby so my main message is to keep fighting and never give up hope.

cat - yay! Great news on scan.

brummie - my symptoms are coming and going too. Yesterday I felt absolutely fine, didn't feel pg in the slightest - not knackered, no queasiness, boobs not as sore, so by last night had convinced myself it was all over. But today, absolutely exhausted, queasy etc. So don't panic yet lovely and see what tomorrow brings you.

I also have scan on Friday - should be 9+5, so hand holding with you brummie for Friday being a good scan day.

onestep - welcome and so sorry for what you have been through. Progesterone definitely delayed the bleeding in my last mc (only started a few days after stopping it, despite cb digi (am scared of mentioning those after that feb thread!) not having moved least 1-2 for a couple of weeks), so imagine it can also delay period slightly too.

X

Welcome Onestep I'm so sorry for your losses. This thread is amazing

Sun we can do Friday!!!!!! Come on scans!!!!

Hi onestep I had a baby successfully on the Coventry protocol with uNK cells of 16.33% after 4MC

Good luck for Friday Sun. We are all here for hand holding xxx

Thanks for scan wishes. Am more anxious about this one than previous ones for some reason. Can't come soon enough! Good luck to Brummie and Sun too. So hope it's good news for all if us. Sun I'm 9+5 tomorrow so we're really close. What's your EDD?

Cat yay for your growth scan.

Barking I didn't see related posts, but believe someone had suggested people mark their posts if it was mc related so people could choose not to read them as some women are getting scared and anxious having their eyes opened Admin stamped out any more such talk of hushing women in their greatest time of need.

Onestep welcome. Mine is similar to yours, 7.6 I think.

Think I missed a page, must read back properly. Waves all.

hello onestep. So sorry you find yourself here but if you have to be in this situation you couldn't ask for a more supportive group than these lot to talk. I haven't been to coventry so I will defer to someone more knowledgable.

That's excellent news cat, so happy for you. And don't worry if your kitten is on the small side. I wa only six days early and I was a whopping five pounds thirteen ounces so they're already flying past me

Sebs I'm on 40mg Clexane, although prescription and letter said 20mg both the pharmacist and later when I need repeat prescription, the consultant, both thought it must be a typo and gave me 40mg.

Great scan news cat so near to little kitten time!

jady good luck tomorrow. And sun and brummie good luck for Friday. Hand holding as always.

onestep welcome and sorry you've had such a rough journey. This thread is a godsend of lovely people with a wealth of knowledge and stories of hope. Pull up a chair!

Thanks for the support ladies. Means a lot.

cat great news! Sounds like a good weight to me and you're not full term yet. Hope you are reassured.

jady hand holding for tomorrow

Clexane - I am on 20mg from Coventry.

Welcome 'onestep', sorry you find yourself here. My uNK levels were 6.1%.

I was on 20mg fragmin daily from Coventry.

Thanks as always for your messages, you're a lovely bunch and this is the only thread for me - can't face those birth club arseholes

Good luck for you're scan today Jady. We'll be in there with you every step.

My DH goes in for his little operation today so fingers crossed he'll be home and recovering very soon. He's being a bit of a big girl's blouse atm hehe

*your not you're

Welcome one step, hope we can be some support.

Good luck Jady x

Confused as ever now...

I'm intrigued about these unk cell tests you all talk about? How / where can you get tested? Should it be done whilst pregnant / not pregnant? I'm Manchester based but would travel if necessary.

I got AF Monday so waiting to start the next round of ttc in a week or so. Just want yo know I'm doing everything possible to keep the pregnancy when I finally get success. What is the purpose of the progesterone? Is it prescribed or something people are trying under their own steam?

I'm signed up to do the response research trial bit I'm so confused with all the different possible things I could do!

HELP!

welcome onestep

sebs im on 40 mg

for those who have ditched the meds now please can i have some advice. from 12 weeks was told to spend a week fading out progesterone. on 400 mg once per day. it was probably spose to be 200 twice but no one told me to cut them in half. Anyway in three days time i get to fade them out. gynae just said take one every other day for a week. is that what everyone else did.
she said srop clexane at 14 weeks no need to fade out. again did everyone else just stop?

keen to get this right and fingers crossed keep this little one going.

had a scan yesterday and still there...couldnt believe it xxx

Kazz, the uNK biopsy is done at Coventry at profs Quenby and Brosens implantation clinic. You can Google it for details. It's NHS self funded so costs £360. You attend the clinic 7-10 days post ov, and you mustn't TTC that cycle. If you have high uNK cells, you are prescribed steroids, heparin and progesterone. If normal, just heparin and progesterone. Good luck.

Littlebear, congratulations on getting this far. I decreased progesterone between weeks 13-15 weeks (cut them in half, go to every other day... I don't think how you do it matters), and stopped the injections the day after my 12 week scan. Didn't wean off those. Hope this helps. xx

Littlebear congrats on your scan, so pleased for you

I've spent all night dreaming about the conversation I need to have this morn with the consultant. I'm having to take DS with me in the pushchair so I'm praying my phone will distract him long enough to allow is to talk, or else maybe he'll melt her heart slightly and she'll just write me the prescription lol.

I'll update once I know anything, thanks for the dosage info xx

Great news Littlebear With my progesterone I cut down to one 400mg a day for a week, then took one every other day for a week then had half every other day for a week before stopping completely. I'm sure my technique was overboard but it worked haha. I didn't have clexane so can't advice on that.

Hope today goes well Sebs. Good luck! XxX

Great news on the scan little!

Good luck for today jady, and also for your dh cat

Welcome onestep, sorry you find yourself here but i hope we can be of some help. I also had high uNK results from Coventry. My level was 7.9.
We actually also have a remarkably similar timing on our mc. My first happened at the start of jan 14 but i knew about it mid dec so Christmas '13 was spent waiting for it. After another in July i then had a third on 13th Oct 14 (same date as you) and my fourth was an early one (4+5) on 13th feb this year (13th also seems to be particularly unlucky for me!), so we're spookily similar date wise.
I'm now in 2nd cycle post Coventry and can say that it's normal for progesterone to delay your af. It is the natural drop in prog that triggers your af i think, so if it's falsely kept high them it makes sense that it will take a few days for prog levels to drop enough for af to arrive. I find af comes between 2 and 5 days after stopping prog, with a few days of spotting before. You may also feel extremely low when you come off it. Not everyone has found this but I felt just dreadful. So utterly defeated and desolate. I hope you don't get this side effect! Stick around with us Coventry pom pom wavers and we can see each other through.

Meant to say good luck sebs too!