Recurrent Miscarriage Support Thread 23 - tests, treatment, trying again.

[bythesea82]

Buckle up, the threads move like lightening! Tea, sympathy, information, support and combined wisdom to guide you through the maze of testing and treatment for recurrent miscarriage. Newbies always most welcome.

Please start with the traditional recap of your stats.

pop, so sorry to hear you didn't get any answers. Really hope you get something from Coventry. Such a hard decision on whether to try again. Maybe you need a bit more time to decide. You've been through such a lot. So fecking angry about that doctor saying that to you. How can they not realise how inappropriate it is to say something like that?

barking, really glad you have saved some knitting for your baby too. X

Pop sorry you didn't get a reason. Can see what the doctor means re it being good there is no major reason, in that it's not something that will necessarily carry a risk of happening again, but surely it's not that hard for doctors to understand that when going through a mc, the one consolation that people want is to be given a reason why it happened, so that it's something we can then frantically search on Google/consult experts to find a way to combat that reason so it doesn't happen again. And to suggest you have a complete family is crass and insensitive, who the hell is she to decide what is the right family for anyone else. Every child/baby/embryo is as important, no child is just a cherry on the top with a take it or leave it attitude. Would anyone go through all this crap if it was so meh as to whether we had another baby or not.

Minnie, the one thing I can be sure of is that whatever I am feeling, it won't be AF yet. My cycles since Ds1 were circa 35 days long, since ds2 they have been anything from 39 through to 54 days long, think averaging around 40-44 but my monitoring of length has been now and then, and given that I had an AF in Nov, then due to BFP/mc followed immediately by BFP/another MC followed by hysteroscopy, my next AF after that one in Nov was my one in April, so who knows what length this months cycle will be...my head tells me I should have ovulated between Friday and today so the pains I have felt should be ovulation. But I'm usually awash with cm when I ovulate. And fertility friend thinks I ovulated on cd21, and my temperature on Sunday was slightly higher than Saturday and my temperature today had risen a little bit more than yesterday. And I am fairly certain that it's only progesterone that makes your temperature rise, and doesn't progesterone only get produced after ovulation? If only they sold machines you could use at home to see what's going on inside us!

On the way to Coventry! Bit nervous about the scratch thing. Forgot my ibuprofen so hope the gas and air is good!

sasha sorry you're feeling down about that post MC af. I'm sure we all had the same sorts of feelings. I found going back to work wasn't as bad as I thought- hope you do too xx

flen opking is so crap. Hoping you get that dark line today. Sounds like you've got it covered though. I can't face that pressured dtd again when we're back on it next month.

Good luck minnie sure you'll be fine. Hope you find it helpful.

loopy totally agree on the machine. Would save a lot of hassle. Without opk I don't think I'd have a clue. Since ds I get no signals at all except a teeny change in cm. So different to before so now I just work on when I used to ov and hope the opk picks something up! Fertility is such a bloody minefield!

Good luck Minnie. I'm not sure the ibuprofen would have helped anyway. It doesn't feel like that kind of pain. It's not too bad at all though.

loopy, yes, temp rise is driven by progesterone. Did it rise and stay risen last week, or just go up and then back down? And how much was the rise? If it's not stayed up i would say you didn't ov then. I find ff very temp driven. But you only need 3 high temps after the low ones for it to say you ov. If you had a virus or anything you might find you had a higher temp for a few days and ff would count it as ov, but it would go back down. I read up about ewcm after ov at the weekend (as i was confused about having this last week ), and it said this is not common but not uncommon (!!!), as it's driven by oestrogen, which can rise after ov to thicken the lining. Not that that helps clear it up for you as I've just explained a possible reason for both situations!

I'm new to the thread and MN but have been lurking for a little bit, and decided to come out....so, hello! It's nice to have some positive stories and thread babies to help keep the motivation up...and nice in a similiar position for advice/venting...

DH & I are 32. We've had:
MC1: MMC at 12w, 9w6d gest
MC2: MMC at 12w, 6w gest
MC3: MMC at 9w2d, 9w1d gest

Waited 13 weeks for St Mary's apt (local RMC was even longer), 10 weeks for period to return, 11 weeks for the POC karotying, so nothing is happening quickly. Am lucky enough to have a v busy but supportive GP who has done all level1 tests in advance of RMC apt, all normal. Testing of MC3 also normal, which debunked my theory of bad eggs (AMH is v low at 4.0 pm/l -- 7 - 48 is average for my age).

So, next steps are:

• awaiting results of life code and hidden c tests
• uNK cells test at Coventry
• hysterscopy next month
• maybe Chicago tests (if uNK comes up with anything)

...then hopefully start TTC again in July/August

Hello texta, and sorry you find yourself here. But the ladies here are very supportive and knowledgeable. I haven't heard of Chicago tests - what are they?

Symptom spotting like mad here. Agree Loopy about the machine... I Googled whether to stop Progesterone because had more light brown discharge today, and found out that implantation bleeding is usually earlier than a period. I'm CD24 and AF due on day 27... but I've never had an implantation bleed before so the pessimist in me is saying its not only AF but also the start of the menopause... Must pull myself together and dig out that ten year plan...

Welcome texta and sorry you find yourself here . Sounds like you are already very well informed and I'd say from your pattern that Coventry is definitely a good idea for you, because you have had losses around the time the placenta takes over and you had a foetus with normal chromosomes. Probably best to do this just before you're ready to ttc again, as the scratch benefits your endometrium for about 3 months.
Hope we can provide some support, advice and hope as you continue along your journey (although actually sounds like you might be advising us!)

Just catching up as been away with some lovely friends for a long weekend.

pop - so sorry you didn't get any answers. Can only imagine how distressing that must be. And re stupid comments from your doctor.

minnie - hope coventry has gone well and it the start of a turning point in the journey.

texta - sorry you find yourself here but welcome. Soundsnlike you have a supportive gp which is great. What are life code, hidden c and chicago tests?

Hugs to everyone I have missed. x

Welcome to the feed texta, so sorry for your losses. It sounds like you've been on a hard journey and I'm glad you have found us. Between us we are a pretty knowledgable bunch!

You and DH being relatively young means you have time to explore lots of options so that's great. I haven't heard of some of the tests that you're having so do please let us know what they entail and how you get on with them. We're always looking for answers to our losses and knowledge is power for all of us.

My understanding is that different testing methods for AMH can give different results and normally in the UK we get different readings to America, which tend to be higher. My AMH was 5.2 if I remember correctly and I was told that was 'normal' for my age (34) at the clinic I went to so I think no need to panic there.

As you rightly say there are lots of positive stories on this feed so please keep faith and hope, your day will come. We're here for handholding every step.

x

Had a little smile to myself when I read you kept some knitting Barking, good for you.

Minnie looking forward to hearing about your visit today. I hope it's gone well.

Biscuits have you managed to sort anything with regard to getting more progesterone? I'm sure some said they had some leftover if really stuck.

Hi Texta, sorry you find yourself here, but welcome.

Pop so sorry you didn't get any answers, that's hard to swallow. I struggle that I'll never know the gender with my early losses so can't imagine how hard that is to hear. Glad your consultant is going to support Coventry though, even if she does need to work on her bedside manners.

Not much going on here. GP surgery still trying to get referral through to gynae (fax constantly engaged, secretary part time) but have both emailed it to the secretary and sent in internatal post. More follow up calls tomorrow.

Internatal? Internal even.

Jady, GP eventually called back and said they'd lost my letter and Coventry letter, so I've resent and fingers crossed it'll get sorted. But thank you. X

texta hi and sorry you find yourself here. Lovely ladies with lots of knowledge and a few laughs along the way too.

Well Coventry all done and I left with a bag of progesterone and a 'get going as soon as you can!' We saw Prof Quenby, who was lovely (though spoke at the speed of light and was more than a bit hyper!) She clearly knows and loves her job.

She said that yes it could very well be my age as the last loss was an abnormality but as the other two were very similar and earlier it was worth testing. She also said that I have a 50/50 chance of being successful, that lots of eggs would be dodgy but I'd still have a fair few good ones left too. More positive than my local RMC.

She explained about how the prog works and agreed with my local doc who was concerned that it lets abnormal eggs keep growing but she said this is only if it's taken from 6 weeks. She said taking it from day 20 makes the lining work better and be more selective. She also said it doesn't work for everyone and if I'm not pg in three months to stop using it.

She didn't really mention heparin other than to say she'd leave that to my local doc to test for the clotting problems. And that she'd discuss a treatment plan after the nk results. I wish I'd asked more about this now because I thought the hep was standard.

She said not to take the aspirin prescribed by my local RMC as its been proved to cause more problems so I'm glad I haven't been taking that.

The scratch wasn't too bad- sucked so hard on the gas and air I couldn't hear the doctor counting down bit of cramping and bleeding since but all fine. She did say my lining looked lovely and was 10mm which she seemed happy with.

Everyone was very lovely but I did feel a bit rushed- it was very busy though! I do feel more positive about it all than after my local RMC appointment though. I just hope it works in the next 3 months (although Dh is on a residential for 3 nights over ov in June flaming typically!) and I end up one of their 60% success stories like lots of you lovely ladies on here!

Sorry for the super long post. Just wanted to get it down in case I forget. Waves to everyone xx

Hi all. Texta welcome and so sorry you find yourself here. The ladies are on here are amazing and very knowledgable.

Well the zebras are getting louder. My boobs are killing me!!!!! Also am sat at Birmingham Airport waiting for flight with colleague and had a glass of wine. New Zealand Sauv Blanc - a Marlborough no less. Which I drink like water normally

Yuck I could barely finish it and had to force it down.

Still didn't buy a test from Boots though!!

Thank you IFinishedTheBiscuits, Marchgirl, Sunandrainbow, Catlover2014 and Jady77 for the warm welcome. It's kinda a bit step for me to go from lurker to poster, so appreciate it a whole bunch.

ifinishedthebiscuits matchgirl the hidden c test is a Greek test for hidden chlamydia(!). It uses a sample of menses blood to test for chlamydia that might be hiding higher up in the uterus. Traditional tests don't pick it up and the fancy IVF clinics here offer it to their patients, but it originated in this IVF clinic in Athens called Serum. You send them a sample through the post (I just used Royal Mail tracked) in one of those wee pots from the GP and they test it, and prescribe antibiotics for you and DH via email if needed. Untreated chlamydia can cause miscarriage and infertility and also create scarring on the uterus. (I'm not sure about policies on posting links here but if you google serum and tests you'll find the instructions). not sure if it's relevant ifinishedthebiscuits but they suggested in my telephone consult that brown spotting can be a symptom of an untreated infection...

The life code test is another Greek tests offered on the same sample but done at a lab called LifeCode. It's a 7 in 1 molecular biology test for mycoplasma hominis, mycoplasma genitalium, ureaplasmas, gardnerella vaginalis and atopobium vaginae, chlamydia (regular non-hidden) and lactobacillae population. It costs a bit more than the hidden c test but it was weird enough to collect the sample so I thought i'd do both at once. I've read a bit about unreaplasma and it seems pretty common, and doesn't seem to badly affect everyone. But not everyone seems to have miscarriages. And cause I get thrush a couple of times a year, so it might be the cause of this. Or maybe not. Both tests take about a week for results apparently.

I think Chicago tests is an internet forum name for the immune test panel that Dr Beer wrote about in his book "Is your body fertility friendly" (but don't quote me!). They're pretty expensive to do but I found instructions on another forum that explain how you can do them yourself at blood clinic and courier them to chicago, which cuts the price by 75%. They do some of them at serum as well for much cheaper than the well-known UK clinics, but there's the added cost of going to Athens. There's an Immune FAQ on the FF forum that's worth googling.

Sometimes i feel like i'm taking it a bit too far, but every miscarriage adds another six - eight months onto my life and i want to try my best shot of getting this one right.

Catlover2014 good to hear your AMH is normal! i think there's two scales or numbers you get given...on the other scale i got 0.53 but was expecting a low AMH as my mother and aunt had premature menopause. I'm trying not to take it too seriously and instead take a gazillion supplements to try to get my eggs back on track.

has anyone else read the 'it starts with the egg' book? if you're not ttc-ing for a couple of months and like the science/research stuff, i recommend it...

ok ending essay now...

sorry for the epic post. minnie74 hello and thank you for the recap. glad your apt went well, sound so positive! just wondering, how long did it take? did she expect your DH to come? did she ask you questions to get your history? they haven't sent me a form...

hello to brummiegirl15 too - you're a strong lady not buying a test. hope your work trip keeps you distracted for even longer...

Texta wow you are very knowledgable about other tests!! We love knowing all this stuff.

I've got 3 x frer's waiting at home for me - plus DP and don't want to test without him. Plus it's also a bit too early so I don't want to mess with my head...

So will wait until I'm home... can see Boots from where I'm sitting

texta the appointment was about half an hour ish and my Dh came but I don't think he would have to. He didn't really do anything! Good for him to hear though. She did ask for a history but not as detailed as my local RMC. Basically just when did I mc and how far along and any family stuff that might be relevant. Are you thinking of going? Lots of people on the thread have been successful after going.

brummie those zebras sound like their stampeding! Especially the not liking the wine!

Ah, that's a relief Biscuits

Minnie was the same with my visit, I saw Prof Quenby too. She didn't really talk about heparin saying they were all about the lining so leave clotting issues to normal NHS tests. However, the letter then said this in the treatment plan and I was prescribed it, "Low-molecular weight heparin (e.g. Clexane 20 mg sc daily) from as soon as a future pregnancy is confirmed to be intrauterine by early scan until 12 completed weeks of pregnancy. The rationale for using low-molecular weight heparin is that it is cytoprotective of placental cells independently of its anticoagulant actions".

That sounds really interesting Texta, must confess I've not read either of those books. Are you waiting for the results now?

Sounds very hopeful brummie

Glad you had a good appt minnie, and that prof q was positive about your chances. I also felt it was a bit rushed (plus they were running 45 mins behind). Maybe we should stop recommending them so much, we're making them too busy

Thanks for the info on the tests you've had texta. I did read about the Greek hidden infections but I just wasn't convinced about the test, as I wasn't sure about menses showing anything that normal tests wouldn't. Although since then I went to Coventry, and prof b mentioned he was trying to convince prof q that they could do the uNK test with menstrual blood instead of by biopsy. She wasn't keen, but the fact he has suggested it made me think maybe it could show something.

Still waiting on af . Was due today and last progesterone was Friday, so really was hoping it'd be here by now. Normally very regular. But just spotting. Did any Coventry people find it increased their LP?

Welcome texta and thanks for sharing the info. I hope you find this thread useful and supportive too.

minnie glad it went well. Hope you get the heparin when you talk to prof Q again.

brummie . When are you back?

I am starving today and hoping it's my body telling me to stock up as labour's not too far away, but really would like to shake off this cold first. Better than yesterday though so fx