Recurrent Miscarriage Support - tests, treatment, trying again - thread 10

[bakingtins]

Welcome everyone - pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of information, moral support, tea or sympathy. Newbies very welcome.

Can we start the thread with a recap of where we are all up to again, please?

Bootle, how awful. Hugs. Xx

Oh jeez Bootles. That's absolutely hideous. You poor poor thing. I'm distraught for you and a bit lost for words to be honest. You and your family will be very much in my thoughts over the coming weeks. Xx

Oh bootle that is heartbreaking. I am so sorry :(

For what it's worth we're all anytime you want to chat. Do free to PM me anytime too.

Hugs and sorry again xxxx

Oh no bootlegs. So sorry!!!
Can't they do anything? Just wait?
Would you want to do something?

Bootles not bootlegs damn autocorrect

Bootle that is absolutely awful, I'm so sorry you've all this extra horribleness to go through, as if it wasn't bad enough already.

Bootles how utterly headfuckingly awful.

I carried a dead embryo for over a week after I found out until it started to MC naturally. It was a miserable time.

So sorry, and I just wish there was more we could do to support you and Triple through such difficult times.

Thinking of you x

Tiny would you? You might see dh' s posters! They will probably be taken down though as he posted them in contravention of the rules!

Hi everyone... or waves as you girls say.

There have been a lot of sad posts these last 2pages.... I really don't know what to say. I pray you all comfort and to hopefully find peace within. I have not lost a child with a heart beat and can only empathize. For Triple finding out alone I am truly sorry. We were all there in spirit hun Hugs

Some of you mentioned envy and never in my life have I envied pregnant women so much! Normally I don't realize their pregnant or want to get far away as not to have it rub off! (Yeah I know) Today 8am in the morning at an audiology visit for son, first person I see is a girl in the back at least 7 months!!!!! Its getting so bad my husband says did you see it as soon as were alone. Grrr I have it worst than a few of you because I never showed with my son until the week before he was born. So when I was sick or swollen and hungry people just thought I was fat! lol

As far as the implantation failure its a really big topic on your side of the world. The treatment ranges from prednisone to ivig and or both along with anticoagulants. The thought is that the immune system is attacking the embryo or in my case trophoblast. Elevated NK cells is usually the culprit. I have not been tested just researching like a woman who wants more children some day! I plan on walking in with guns blazing, because I have cried many tears over stories I have read online. I really appreciate those who share there experience freely so others don't go down such a hard road. (removes soap box and walks away)

Hang in there ladies, we will win!

Bootles that sounds awful. I can't blv you are having to go through this. Lots of hugs in this stressful time for you.

Tanny - the quail eggs made me laugh! Yes men are just like that. Whilst I was counting down each minute to the scan, hubby was clearly oblivious.

Anyway thank you everyone for your support. Given my statistical background, I was expecting it as not everyone can be a success story - so someone has to be at the other end of the distribution - guess that is me for now.

We have decided not to draw a line just yet. I will try with a different consultant and see if it gets me anywhere.

Good luck to all of you. I will continue to lurk for now.

It's tough. When it happens to me I just want to be done but they keep doing the let's have another scan in a week thing and you just know there is no hope as we know the dates...

Last time as I went for medical management had to wait longer as I wanted it to happen over the weekend.

longest going only at 4:30. Shall definitely keep an eye out.

bootles I'm so sorry. That happened to me with MC4, so hard to know embie is alive but failing and basically be wishing it dead so you can move on I had MC after a HB several times, but it was only that one where I was watching it happen When that embie tested as genetically normal that was what prompted me to go down the NK cells route, it may be something to consider if you haven't already.

Bootles That is heartbreak you poor thing. Such a lot of sad news on the thread. Surely we are all due some happiness soon?

Tiny Thank you. Doubt it is still there but he is white with red and yellow patches on his tummy. I posted a link in chat but can't do it again as am on phone. Was horrible listening to dd pine for him at bedtime. A profiteer has one on eBay for an inflated price which I might buy but it won't be the same.

Oh bootles how awful. This happened to me with my first mc, too - although in my case, they all pretended that everything was fine and back on track, when clearly it wasn't.
I'm so sorry that you have to go through this awful awful wait When will they scan you again? I agree with getting every possible test done, it may give some clue as to why it happened.

I know that this is probably not what you want to hear/do, but maybe you can use this time to 'properly' say good-bye to your baby... In whichever way you want. We normally never get the chance to do that, don't we... Just a thought, please ignore if it doesn't make sense to you!

triple Good luck for anything that you decide to do, I wish you all possible luck on the next part of your journey.

I'm starting to (tentatively) think that I want to give it another go... I don't think that DH would ever agree to IVF, and as long as I have not made up my mind to stop ttc, adoption is out as well. Am I crazy?!

Not crazy JBrd. If you feel that you want to in your gut then it's probably best to go with it rather than forever wonder. But you don't need to decide now.

Bootles and Triple I am still thinking of you. I hope you are looking after yourselves today.

Jbrd you're asking the wrong bunch of crazies!

I mentioned the rings I made a while back, the ones to commemorate my lost pregnancies. I have been taking photos today of my work, so thought I'd post a picture of these too. They're nothing special, but they're not meant to be. Just something for me.

Finding everything stressful this week, worrying about being pregnant and having a baby, worried about being pregnant and not having a baby, worried about work and not doing enough about it, feeling so ill is making me tired. I honestly thought it'd be easier as time went on but I'm still as bonkers.

And I feel guilty for feeling these things. I should just be happy to be upduffed, and I'm feeling guilty that I am, when everyone is still experiencing such pain and loss.

And I am sorry for expressing it here. I just hope it kind of makes sense...

Tanny They really are beautiful rings. I don't blame you for feeling a mix of emotions right now. I don't think even the most simple and wanted pregnancy is ever a straightforward emotional ride and when you add the fear that our history gives us, it's a tricky one. Don't be hard on yourself.

Ladies, I have some questions. I have received some of my test results by email and am naughtily trying to use Dr Google to work out what they mean, rather than waiting patiently for my next consultation which is 3 whole weeks away. I think that I am in the normal range for insulin, thyroid and most of the things on the TEG test but two things on the TEG test - LY 30 and LY60 are listed as "high" and are slightly outside the normal range. Do any of you have any idea what this means? Is it a clotting disorder?

Rings are beautiful tanny my husband got me a locket and I imagine my babies hearts are there. It's good to have something to remember with. The way you feel sounds very normal to me and we have all been there so please don't be sorry for sharing.

longest glad the results are back but afraid I can't shed any light on what they mean. I know waiting is a killer but avoid dr google if you can. You'll only end up feeling more worried.

Xxx

As far as I can make out it seems to be hyperfibrinolysis which is actually the opposite of a clotting disorder and is more of a bleeding disorder that could be preventing implantation but is rare. I could have my results totally topsy turvy though. Might see if there's any chance of bringing (private) consultation forward since the results seem to be in.

Hi all
Hoping for some advice, support, or just ranting space. Im currently going through 3rd mc in 18 months. Just back from hospital for 2nd round of blood tests which will only confirm what I already know. I had a scan on Tues when I was 5 weeks 6 days, was told it was too early to see anything so was given a sheet with 3 reasons for a pregnancy of unknown location and had first blood test. I had been spotting throughout the previous night which is why I went to the epu on Tuesday am, but by tuesday night I was bleeding heavily and im sure I passed the sac then. Im still bleeding, still in pain, have hardly slept since monday, or eaten, and if Im not in tears all day Im on the verge of tears constantly.

I have a 7yr old ds, 3yr old dd. I also had a mc in between. But got pregnant with 2 months and had my daughter. Im seeing my gp on Monday am, to ask for a referral. I will be a blubbering mess, and am not very forceful or confident in situations like this so, I'm hoping I wont have to press my gp on it. She did kind of skim over the possibility when I saw her last time, that if it happened again maybe shld investigate but then also said I was already blessed with 2 children. Can she refuse to refer because I already have 2 children, could my age hinder? I just turned 43. But I started down ttc3 at 41 (and a half), got pg 1st month of trying and since then mc after mc. All 3 were before 6 weeks. If she doesn't refer me I will go private. Has anyone experience of going private? Can I just ring and book an appointment?

Sorry all I did say I needed ranting space.

Welcome Leons. I'm sorry to hear that you've been through so much and for your losses. I hope you're taking sometime out for yourself right now.

As this is your 3rd mc my understanding is that your GP should refer you to see a specialist, this is not altered by your age or the fact that you have two dc so be insistant!

I don't know where you live but Professor Quenby in Coventry has provided lthe adies on here with a lot of specialist advice. I think you can see her on the nhs or privately so it's worth looking into options. There is a similar clinic in London but the others will probably provide you with more info on this.

Feel free to PM me if you ever want to chat. Otherwise stay in touch on here. You are in the best place and will get lots of help and support from the lovely ladies on here.

XXX

Hi leons I'm sorry you have been through the mill. My pattern of mcs was the same as yours (dc1, mc, dc2, 3 mcs) and I was then eligible for referral. your age shouldn't affect whether you can be referred. I'm sure you know that chromosome problems and therefore MC rate are much higher over 40 but you'd still be bloody unlucky to have 3 in a row. The NHS tests give you a cause 50 % of the time and as I guess you feel time is limited you may want to pursue the NK cells/implantation failure testing that Prof Q offers in tandem. You have to be 2 normal periods post MC and then 7-10 days post ov to see her. If the wait for NHS tests is lengthy in your area one option is to see a gynaecologist privately (likely to cost about £200) and ask them to give your GP a list of tests. They are mainly just blood tests that the GP can run for you. I did this after MC3 (but not 3 in a row so didn't 'count') Your successful pregnancies rules out most of the anatomical issues. You may also want an AMH test (not available on NHS) which gives some indication of egg reserve.
A lot of us are older mums (I'm 39) and have been dismissively told it's our age. It may be a factor but it's not the whole story so don't be fobbed off. After 4MCs I eventually got genetic testing which showed I was losing perfect embryos, saw Prof Q, got diagnosed with high NK cells, treated with steroids and baby Faith is 8 weeks old.

Leons I am very sorry. You have come to the right place for support and advice but there's nothing I can say to make it ok. It is so painful.

On your specific questions, the fact you already have children should have no bearing at all on an nhs referral but some nhs trusts do have an age limit. I think mine mentioned 43.5 but I could be wrong. As for private tests, I have just had my first private consultation with Mr Rai at St Mary's hospital in London. It's one of the specialist hospitals for rmc. The initial consultation is £230 and I was told £1500 should pay for all the tests I need. You can book an appointment through his secretary, Mary Stanton, and they are available within 2 weeks. I had a go letter but I don't think this is required.

The most common reason for miscarriage is chromosomal abnormality, and the risk of that increases with age. After that various clotting disorders, thyroid function and diabetes, which st Mary's would test for. The clinic in Coventry cat mentions will also test for raised nk cells which may cause mc but treatment for this is not available on the bus and the test costs £360 privately.

Look what a lot I have learned from you ladies in three short weeks! Feels like lifetime ago I was asking the same questions.

Just to clarify what longest said - the NK cells testing is not available on the NHS, but treatment on the protocol Coventry tend to recommend (clexane, progesterone, prednisolone) is. I was treated (meds prescribed) by my GP on the basis of a recommendation from Prof Q and monitored (early scans and TLC) by my local RMC clinic.
Some London clinics recommend treatment with IVIG, intralipids etc and these would not be available on the NHS so treatment is £££ on top of testing....

Ah, treatment is available on the nhs, great. Probably not on the bus though!