Recurrent Miscarriage Support Thread 26 - tests, treatment and trying again

[bythesea82]

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

Just received a bill from our clinic for £275 to allow storage of our remaining 2 frozen embryos for another year. We already paid that and more to transfer and store the initial 3 last year. Feel sad, odd and a bit jealous of all the lucky people who conceive for free! Yes, it's not the £30k posted just upthread but we've spent in the thousands already so far.

Hi. The lovely Bakingtins and Sasha advised me on my thread and encouraged me to come join this one so here I am

I had my 3rd erpc yesterday.

-DD was conceived in the first month, carried and born without problems in 2011.
-1st mmc in Jan 2014 discovered at 14wks after some only-just-there
spotting. Estimated 8-9 wks. Erpc.
-2nd mmc Sept 2014, normal (private) scan at 8+5. Miniscule
amount of bleeding the day before my 12wk scan, where mmc was discovered-no growth since the 8+5 scan. Erpc.
-3rd mmc this week. In and out of epu having scans/blood tests for the last three weeks from 6wks ish because of one episode of bleeding. Finally a conclusive scan on thurs, they couldnt exactly date it but no more than 6wks. I started bleeding again from thurs but had the erpc so they could 'test products'.

I would like to ask, when I go to the gp next week to ask for a referral for further testing, is there anything specific I should be asking for or about? Sorry, I'm sure it's a well asked question, I've read some but not all of the thread.

Spending the day lounging and tea drinking. I feel more wiped out this time, probably not helped by the fact I wasn't taken down until nearly 4 after sitting there all day nil by mouth since the previous evening. Anyway, just glad it's over.

I'm sorry for everyone else going through various shit times . Going back now to read the rest of the thread xx

Welcome fixer, and sorry for your losses. Hope you will find some support here.

baking, my acupuncture lady went to a lecture about medicinal mushrooms, mainly to do with uses in cancer treatment, but the presenter mentioned some research done by trevor wing where it was used for people with infertility/mc due to immune uses/high nk and cytokines. The study showed good success rates for bringing nk down. It has a modulating effect, so increases nk for cancer patients who have impaired immune and decreases for people on the opposite end of the scale. Also helps with allergies (which i could really do with at the moment! ), so must decrease immune response for that. I was sceptical at first but emailed the presenter from the lecture and he sounds very genuine. He's written a book. Medicinal mushrooms: the essential guide by Martin Powell.
I just feel like i need to do something to help earlier than bfp if my losses are all going to be so early now. I feel like it's too late by then

Sorry fixer, my last post came across a bit dismissive. The gp will probably mostly leave it to the rmc to arrange tests, but some gps will do some testing for you. I persuaded mine to do a full blood count, thyroid function, blood sugar, coeliac and hormones (though i think that was just to make me feel better as she didn't do it at the right time of my cycle). These are tests that my rmc didn't do. Your rmc will do all the clotting ones, a scan of your uterus for abnormalities and they might do karyotyping on you and your partner, although i gather this isn't standard nhs protocol now unless the testing of the embryo shows something obvious.

The testing comes back normal in about 50% of people which a lot of us have found very frustrating. Many of us have gone to the implantation clinic in Coventry to have our uterine natural killer (uNK) cells measured (mine came back raised so i have treatment for next time).

Thanks for the good wishes everyone, it really is much appreciated. Having a lazy afternoon in the garden with a good book to try and keep my mind occupied.

Sorry for your losses fixer, hope you are looking after yourself at the moment. You are definitely in the right place here for advice and support.

Yay Thorne exiting!!!! Fingers crossed x

Hi Fixer and welcome this is a great thread

Hi fixer welcome to the feed. So sorry to hear what you've been through and for your losses. Hope your getting support at home etc. As a general guide I would suggest you start by asking GP for a recurrent mc clinic appointment. They will probably do a blood tests for lupus, thrombophillia, thyroid, diabetes, celiac and hormone balance. You might also want to ask for a scan of your ovaries and womb to check there aren't any cysts or polyps there. As it was your third mc you could have had the embryo looked at but if you've already had the operation that's probably not possible.

Tanny how are you doing? Hope you're ok, have been thinking of you.

Hello Fixer glad you have going this thread, I hope you find some useful info and amazing support here just like I recently have. I've just gone through 4mc, a weird one of a PUL pregnancy in unknown location and a week of bleeding which I thought was my period. Only just beginning to feel like myself. Xx

Thorn - well done! Good going lady!

Fixer - reading your story sounds like reading my own - rmc is so exhausting. Why did life choose this for us? Welcome xxx

Sasha, sorry about the nursery mess, childcare is a nightmare enough without rmc creating more chaos. X

Congrats thorn

Welcome fixer rmc is the crappest of the crap but the ladies on this thread are great. Glad you found your way here.

sasha glad the prog didn't disrupt your cycle too much. Sorry about the childcare. MC the gift that keeps on giving!

So, i've chucked the agnus castus ladies. My periods are fine where they are, i havn't got 3-6 months to play around with. I thought it might improve my progesterone naturally, but i'd really rather the bum bullets than this!

Linky to research, march please?

Glad you joined us, fixer and hope you find it helpful being here.

sasha that's really pants. Adding insult to injury.

I actually haven't got the original paper baking but I've copied the chapter on it from his book into a doc (formatting is a bit messed up). Link is here. It's talking about infertility due to raised nk/cytokine, but i took that to refer also to rmc. Hope that link works.
Am i being crazy?

Sasha I can relate to the nursery hassles. DS is due to start school nursery in January - these are the 'free' hours for 3 and 4 yr olds where we live. It's a hassle and expensive finding wraparound childcare to make them work unless you're a SAHM or have relatives nearby but the due date for my most recent miscarriage was mid-Jan so I thought we'd just use the ' free ' hours as I'd be on mat leave then.... Best laid plans and all that! Also I had ruled out doing something 'active' that I really wanted to do as initially thought I'd be doing a frozen FET cycle at that time, then got pregnant naturally totally unexpectedly but still wouldn't have been able to do it as pregnant (but didn't mind, obviously!), then miscarried and now though I can technically do it, I have no inclination and also haven't trained so am not fit enough. It sucks!

Not crazy at all, lovely. I'm just very aware that because we are basically desperate for answers and solutions we are a bit vulnerable to the snake oil salesman. The paper cited isn't available on the Internet when I searched for it, not even an abstract. Was it published in a peer reviewed journal?
Sorry I have lost track of what other treatment if any you are being offered. Is taking other treatments earlier in the cycle an option? For example I know the London NK doctors use Pred from ovulation, not BFP. It'd be interesting to hear what they think about the mushrooms. I'm not dismissing it, lots of medicines originate from plants, but at the same time natural doesn't mean safe. Taking any drugs in pregnancy is not great but at least pred, heparin et al have been used in thousands of women and they have a pretty good idea what the risks are.

You're absolutely right of course baking. I think the study was presented at a conference in Germany but couldn't find the paper it was based on. My acu lady said it was originally published in German. Admittedly it sounds like a very small study and i have no idea of the parameters.

My plan was to take it until bfp then switch to the pred (I'm 7.9% nk) as the pred would do the same job of suppressing the excessive immune response and i didn't really want to take both in case the mushrooms then modulated it up in response to the pred suppression.

I had previously asked prof b about taking pred earlier than bfp and i will ask him again at a consult i have booked next thurs. I think he will say no again because of the effect of coming on and off it (and because I think he'll say it's normal to have these early mcs for someone with hyperfertility treated with prog). It just feels like i should be able to save some of these early ones and i want to do all I can

Anyone heard from sebs? Was she having a scan in Friday?
Hope all is ok...

freckle I was told agnus castus was a strong drug that didn't suit everyone and it could potentially have unwanted side effects in some people. This is why I was advised to try vit b6 and vit c alongside the wheat free diet first, and only try the agnus castus if that didn't work.

thorn congratulations

fixer sorry you have reason to be here but it's a good place to be if you do.

may you've just reminded me we haven't signed and returned the forms about embryo storage....

fixer welcome, so sorry to read your story but glad you've found us.

thorn whispered congratulations!

sasha so sorry to hear of childcare and money stresses. mC really does hit every possible corner of your life.

You ladies are fantastic, sharing knowledge and research and medical theories - what a huge well of learning to call on! I must admit a slight giggle when I misread in haste yesterday and thought you were discussing magic mushrooms...!

I'm surviving hen do, no drinking and relatively early night. Got to leave early to get home for more bloods at hospital later today. Friday's levels were hcg at nearly 4000 and progesterone at nearly 80, so they've booked a scan for Tuesday to check location as I'm still in intermittent pain (no more bleeding yet though). Constant terror at every slight dampness

I'm worried about sebs, sending hugs wherever you are

brummie hope these hours and days are passing for you. Step by step through the danger zone. Youre in my thoughts a lot, as U.S. bootle* and everyone

Waves to everyone else, hope you have nice Sundays planned.

I felt quite sick on the agnus castus. made me think I might be pregnant. but then I used to get that towards the end of my natural cycle too - I think maybe it's how I react to increased progesterone.

also thinking of sebs and hope she is ok

Hope you're ok sebs xx

Yep, also worried about Sebs. Hope you're ok chick. Really hope you're just keeping your head down for now x

Thanks Cat, I'm having a shitty time at the moment. HV did a test thingy for PND and it showed that I am having signs of it, and I was underplaying how things are for her questions, so know that things aren't right. I have resigned myself to the idea that I'll go back on antidepressants just to get a leg up out of this. DH has responded positively and has now gone from angry neglected mode to caring husband mode. Thank fuck.

I'm glad your dh has changed his attitude. Men are bloody useless sometimes at reading signs unless it's spelt it to them. I think some antidepressants sound like a sensible choice in the short term tanny. It won't be for ever, just to get you over the hump. Things will get easier. I promise. Just keep holding on x