Recurrent Miscarriage Support Thread 30 - Support for Tests, Treatments and Trying Again

[forestnest]

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread: www.mumsnet.com/Talk/miscarriage/2441180-Recurrent-Miscarriage-Support-Thread-29-Support-for-Tests-Treatments-and-Trying-Again

(stats etc to follow)

Aww ladies that is super helpful thank you both so much for that information ill be taking it with me to my follow up appointment on tuesday when he goes into it in detail....i just rang to get the results and he had a packed clinic and couldnt get to the phone so just passed on the message that the results are "normal" so at least now i know specifically what to ask.

I really do want to push for the steroids as i know alot of people have had success on combination with the clexane so am hoping he will be willing to try it...

Congrats on your pregnancy marchgirl and glad it is all going well! Do u mind me asking what dose of steriods you were on?

Thanks so much you have both been so helpful xx

kane welcome to the thread and I'm so sorry for your losses. The loss of your son must be completely devastating

I can't offer any advice that these two lovely ladies haven't already though I had acupuncture to sort out my cycles and it worked brilliantly- would recommend if you've been thinking about it. Good luck with the appointment on Tuesday- hope you get some useful answers xx

march 20+4! That's brilliant. Wish I was still three days behind you! I feel like you're doing it for me and my little one too xx

Hi kane. I was on 20mg a day of prednisilone, 400mg of progesterone twice daily and one heparin (clexane) injection a day (can't remember the dose). All stopped/weaned off at around 13 weeks. I think the dose of pred at shehata's clinic is a little higher at 25mg.

Oh minnie, I so wish you and monten were too. It must be so hard to see mine getting on. It will be you soon. I know it will xx

Thanks so much march and minnie! Am so looking forward to tuesday now to get some answers...i know for sure i am getting a script for clexane as he mentioned it in the last visit so i just hope its not too late (ill be 4dpo and he thinks i need it from ovulation)

I will definately be looking into the acupuncture as well...im from northern ireland and theres a lady near belfast who specialises in fertility acupuncture. I have been meaning to try her but it was so expensive on top of the nk cells and consultation (we went private because the waiting list was 10 months) so will give it a go after christmas

Yeah lifes been one long tww since we lost our son last september but we have no intention of giving up so i will be sticking around his wee nursery is still in place for a brother or sister but seriously considering letting it go soon..my body had made it to 32 week so i just cant understand why its not doing what it needs to now....so frustrating but i know you all understand xx

Hi all,

I am new to mumsnet and am finding it hard to find a right thread. I think i've found one right one atleast '40 plus' group and I sincerely hope this is another one!

A brief intro- 40, 5 mc- 4 early, one at 22 weeks (with 150 aspirin)

Have under active thyroid, morphea (localised scleroderma) and Raynaud's phenomenon (only occasionally problematic)

All tests normal except TEG (raised MA and low LY30) at St Marys and A1298C homozygous mutation.

Just found out that I'm pregnant again. Am on 150 mg aspirin and cyclogest.

My head is spinning due to conflicting advise on heparin/Clexane.

my specialist Mr S says no for it but locals and GP seem to think i should be on it.

I personally do think only aspirin should be ok as last time it took me to 22 weeks. This time I am also taking cyclogest. But am freaking out as people think heparin will help placental flow etc etc. But 150 of aspirin (which i'm not happy to reduce, others are!) and 20 mg of clexane would be too much for me if I dont have good going thrombophilia, that's what i think.

Would love to hear from ur experiences and understanding as to what your thoughts are on this.

Thanks in advance and good luck to everyone xxx

Ellie, welcome .
My RMC consultant said aspirin was as likley to cause mc as it was to prevent it, especially without a diagnosed clotting issue. Recent research suggests it's not the safe 'try it, it won't do any harm' drug doctors have been thinking it is. Another consultant in the same RMC told me it would be worth a go (but I have diagnosed thrombophilia).
There are ladies on this thread who have been given heparin for the benefits to the placenta, they can tell you more about that than me.

Kane I'm another acupuncture convert. After mc1 I didn't have AF for over 3 months and then I started the needles and my cycles eventually responded.

Welcome ellie, although sorry that you have need to be here. Congratulations on your new pg. Hope it will be healthy and straight forward.

Is the mr s you are under shehata? I only ask because I know he is a fan of aspirin.
I'm under the Coventry implantation clinic and they have advised against aspirin. For the first trimester i was on prednisilone (for high uNK), heparin and progesterone. I read a lot about heparin before taking it (as I don't have a diagnosed clotting disorder), and decided it was a good thing for its cytoprotective effect (prevents cell death of the placental cells). The papers i read were 'Heparin prevents cell death in human trophoblast', by Hills et al and 'Effects of low molecular weight heparin and heparin-binding epidermal growth factor on human trophoblast in first trimester' by Chen et al.,
And also 'Low molecular weight heparin (LMWH) for treatment of recurrent miscarriage negatively tested for anti phospholipid antibodies: a randomized controlled trial'
Of course, I'm no medical professional, so definitely wouldn't like to make any comment on whether the heparin and aspirin would be too much on the aspirin dose that you mentioned. I know people have taken the two together, but no idea of the dose. I think they work in different ways though.

Unfortunately I have no knowledge of what the abnormal teg results mean, or what the other conditions mean for you. Perhaps someone who had been to st Marys will be on with more help. Wishing you all the best whatever you decide.

kane, i just googled "edinburgh acupuncture community clinic" to find my place. Perhaps I was just lucky that they happen to be amazing and have a special interest in fertility as well. Mine treat in two separate rooms but I know that some are in the same room. The poster that introduced me to community acupuncture had the latter situation, but said she used to go first thing, so was normally the only one in there. Might be worth considering if cost is an issue. I had it once a week from mc3 until about 13 weeks pg, and now once a month. Worth looking into in your area anyway. If you don't like one you can always try another.

Thank u *Marchgirl and *barking! From what I understand about TEG is that it reflects clot strength. In the pregnancy state I've tendency to clot and therefore aspirin higher dose than normal. St marys does this test and the consultant there has done a good reasearch on it and found that this condition will stay unaffected by 75 mg aspirin and 150 mg is the only way forward. The same teg apparantly tells whether i need heparin or not ( reaction time, alpha angle..its there marked in my file and i remember them explaining it to me), and they didnt advise me for it but another consultant of the same unit seemed to think i 'might' benefit from it.

Yes it is mr shehata, i didnt know we can openly name them. yes u r correct, he adds 75 mg aspirin to everyone, even before conception. And as perhaps u would know, he is also a big fan of steroids and ustAnswer has asked me to answer your question "Hi i have Hx of recurrent miscarriages. I am spotting on tissue" because it falls within my area of expertise. I just need a few more details about your situation and I will get to work!
Yes i have read those papers on heparin they are pro heparin but there are other good studies that advise against it in a situation where there is no proven thrombophilia, which is my case. This is such a confusing zone where all big guys differ in their opinion and we in the middle are left with all these tough decisions to make.

Anyway, i'm still have some spotting so have been advised not to start it now. I'll have to wait for this tough period to be over and once there's a heart beat, i am going to discuss with mr shehata again. I hope he comes up with whats the best for me.

Wish me luck, keep me and my bubba in ur prayers..i so want this one to be my thb!

How far are you ladies in ur pregnancy? Surely past first trimester i'm guessing xxxx

Thanks marchgirl! The one in belfast is much more expensive but i think thats going to be my only option logistically so will give it a go if this cycle is a bust....im 2dpo today and wont get the clexane until 5dpo after the appointment so am not getting my hopes up. Even if i get pregnant this cycle i would be worried i have started the clexane too late this month

Ellie you are in my thoughts and i hope this works out for you...its so scary having to make decisions and hoping you make the right ones xx

I'm 20+6 ellie. One of my biggest frustrations with this whole thing is that none of the specialist agree, and some almost scoff at what others are testing for and suggesting as treatment. All of them seem so focused on what they are doing that they are unable to accept that parts of other people's research may be right as well. Really hard to know what to do for best in your position, sorry we weren't any help in deciding! Keeping fingers crossed for you anyway x

No idea where this is, compared to you kane, but sliding scale of 15 to 30 price wise. One of the reviews is about someone who had gone for fertility reasons

Its 50 quid a pop with this lady over here but she has good reviews and im desperate!! Lol xx

Did that link not work for you?

Just a quickie to say welcome to tumgot Ellie and Kane

Sorry you all find yourself here but these ladies are amazing and so knowledgeable. Hope you find us useful on this shitty journey. Sorry to miss anyone else. Quite a few new faces lately which always makes me sad but you've come to the right place.

Lol am so stupid i didnt realise that was a link i thought you ment the glasgow one! That is fab marchgirl thank you so much will save a fortune...will deffo be giving them a go after this cycle will keep u posted xx

Can anyone pls pls reassure me honestly??

my hx is as above. I have been spotting since upt positive a wk ago. I started bright red spotting 4 days ago, and today it was first in knicker and then a small clot. What's going on here? I dont want to loose my sixth angel, i'm 39 not gonna get any younger and it would be so so unfair!

Am so so sorry ellie i dont know what to say....can you go to epu and get a blood draw today and in a few days to see whats happening with ur hcg levels? Xx

Sorry the spotting has got worse ellie and that you passed a clot. Try and stay positive. I know it's hard to do. How far do you think you are now? Are you too early for a scan? Hope you can get some reassurance, either from a scan or hcg check. Hand holding from me x

Hi there ladies and welcome newbies! I havn't been posting and chevking.on here, like i should, as was caught up with situations on the fb feed.

Ellie, as tomorrow is monday morning if i were you i'd phone your midwife or epu and get a scan booked. It is the only thing that will settle your mind. Loads and loads of women on our thread have bleeding in the first few weeks, so it's not just a platitude to say it happens. Goodluck and hope to hear good news from you tomorrow.

Hi Ladies

I posted on here before but been lurking for ages since around July.

Here are my stats:

I am 40 and my DH is 33

DD born Oct 2011 by EMCS (due to me contracting meningitis whilest pregnant)
MC1 @ 12 weeks Dec 2014- found out at the scan but had a feeling as was bleeding - got a d&c
MC2 @ 6 weeks May 2015 - natural

Been trying to convince since lat miscarriage with no luck as of yet. In the the 2ww until the weekend but not hopeful as have had a vomiting bug and a rotten cold in the last 2 weeks.

March its lovely to here how far you have come. So happy for you.

Barking so chuffed that this happened for you naturally.

Great to here of the updates from Brummie, Flen, Cloud and Jady.

Had a sneaky peak Betty, what a beautiful baby girl.

Good news on the scan Flower.

Thinking of you Pop, its hard to stay positive when you've had bad news before but it sounds like you are on the right track.

Mum and Ellie, fingers crossed for both of you.

Hello to everyone else.

Does any one know how SebsMum is getting on? I really should just join the Facebook session but worried that other people on my Facebook will see the group I have joined!

Nice to hear from you bunny. Sorry you've had no luck with a bfp since we last heard from you, but good luck for the remainder of the tww. You never know about this month. I don't think illness makes too much difference. If it's going to stick, it will stick. Plus i heard that some people get colds when they conceive due to the immune system lowering, so don't lose hope yet!

Nobody has heard from sebs for a few months now. She left the fb group as well, quite abruptly (not because of a problem with the pg or anything), and as far as I'm aware nobody has heard from her since. Hope she's doing ok.

You really shouldn't worry about the fb group. Nobody else can see that you joined it, as it's a secret group. If you do want to join (or if anyone else does), then pm me. You can always add me as a friend and then have a good trawl round my profile to convince yourself that you can't see any trace of it before I add you to the group if you're worried. You just have to make sure when you're creating a new post that is to the group only, but it tells you in a box at the top. I normally triple check it! Replies to group messages only go to the group, so there's no danger of posting a reply by accident

Thanks March

That's a shame about Sebs, I hope her pregnancy ends with a beautiful healthy baby.

I will no doubt do the same as all the other months and start testing a few days before my due date with a small amount of hope and get a large amount of disappointment whens its a bfn. Although I do tend to get the cold when I am pregnant its usually closer to my due date. This time I know it was my daughter who gave me it as she was up though the night, poor wee soul.

I think i will take the plunge on the Facebook front. How do I join the group?

If you pm me your fb name and a description of your picture I'll add you as a friend then add you to the group

Ellie did you get through to EPU or anyone today?? Everything crossed for you, hope all works out ok!

Question: did anyone find that things felt different after they MC? All the plumbing seems to have taken a bit of a battering! I've never really felt ovulation but now there's no mistaking it, am having 3/4 days of ov pain backed up with OPKs! And all the way through my cycle I feel like I'm being prodded and poked and stretched. Right now I'm about 3dpo and feel like I've got knitting needles poking me in both sides and thighs, it's been going on since before ov. No signs or symptoms of infection. It's very weird and a bit uncomfortable - anyone else have anything like this?!