Please or to access all these features

Miscarriage/pregnancy loss

Find support and share your experiences on our Miscarriage forum. See also legal rights and support after baby loss.

Recurrent Miscarriage Testing, trials and tribulations...Part 7!

987 replies

squizita · 07/06/2013 19:04

Hi all, carrying on from part 6. All kinicker-checkers, blood-testers, clinic-attenders and finger-crossers welcome. Nothing but love and crossed fingers...

OP posts:
Daisybell1 · 28/08/2013 11:57

Hi there Guppie, I'm also barging back in after while. Congrats on your bfp but totally understand your anxiety. I'm sure someone else will be along to help soon Smile

I've just had my referral through to St Mary's although its got a completely bonkers date on it so I don't know when the appointment is Sad

LandsN · 28/08/2013 15:44

Guppie good to hear from you I do read all posts but feel a bit "out of it" now as I have finally managed to make it to 32 weeks hope all is well for everyone else and big congrats on BFP Guppie x

GuppieK · 28/08/2013 16:25

LandsN, thanks and it's great to hear from you and to hear your amazing news. 32 weeks - wow. You massively deserve it after all of the disappointments.

Hi Daisybell1 and thanks for your message. How annoying to get the referral through then it's messed up. Hope the date isn't far away. Have you been waiting for very long to see someone?

Bakingtins · 28/08/2013 19:33

Hi all. Just catching up after a few days away.
Polka sorry for mixing you up with purple
Purple hope you are hanging in there.
Guppie nice to hear from you and congrats on the BFP.

So I have my results back from Prof Q and my uterine NK cells are 16%, normal is

Justonemoretime · 29/08/2013 00:02

Baking, I'm so pleased you have something to work with and something to pin some hope on. I agree that it's better to regret what you do as opposed to regretting what you didn't do. Good luck.

Hello to 'old but new to me' returning ladies!

JBrd · 29/08/2013 10:24

Baking Good to see that you are getting some results back! It's a double-sided medal, though, isn't it - you're damned if you do, damned if you don't... Do you think that you might try to ttc again, knowing that you have treatment options that might increase the probability of a successful pregnancy? I know it's not a guarantee, but it's something that you can target at least! It is so hard, trying to weigh the options of mc vs baby.

I'm now waiting... They will investigate my sac/tissue, no idea when I will get that result, though. Once I get my BFN again, the testing will start - bloods from myself and DH and a scan for me, I guess to check that everything is as it should be.
Unless the analysis of the sac gives any specific results, I'm not sure they will find anything... My cycles are very regular (if slightly short), I am ovulating (well, according to all the tests I do every flippin' month), and apart from a big fibroid, my uterus is as it should be. There might be a clotting issue, but I have been taking aspiring and the heparin injections for both my last 2 (unsuccessful) pregnancies right from the start, so I don't think that there is anything more than that they could do. Wondering if it could be a hormonal imbalance or something?
I have not yet been able to bring myself to read the book about miscarriage that I bought - currently immersing myself in the Game of Thrones books instead... Excellent escapism.

Bakingtins · 30/08/2013 07:26

I have some more questions for prof Q but I think we're steeling ourselves to give it another try. We have what we wanted, an answer and a treatment that will at least improve our chances.
Next week is the anniversary of MC2 that set us off down this road in the first place. We thought (hollow laugh) after the first MC in 2009 and having had DS2, that we'd had our "bad luck" and that everything would be straightforward. It's been quite a shit year.
New term, new start, right? Fitter than I was thanks to C25k, about to add in a weekly swim now DS2 is happy on his own in his lessons, back on the wretched Pre-preg vitamins and off the booze omitting to mention the bottle of red for DHs birthday yesterday so here we go on the TTC rollercoaster.

Purplefrogshoe · 30/08/2013 10:53

Hi all, hope u are all doing ok, been a hard week for a few people i see :( still bleeding and driving myself mad, fingers crossed baking xx

teaandchocolate · 30/08/2013 20:52

I just wanted to come back and say hi to everyone. Sorry I've not posted much. Like Lands I also feel a bit out of it now!

Guppie hello again, so nice to hear from you and a tentative congratulations! I know how stressful it is once you get the bfp but the trying is also soul destroying. As I kept banging on to everyone you've got to be in it to win it!!

Baking good luck with everything. Glad you've at least got some answers and renewed hope. Keeping everything crossed for you.

Latebloomer I so feel for you and your brave DH. Hang on in there is all I can say and make sure you look after yourself in all this stress.

Purple sending hugs your way too.

Sorry for everyone I've missed off but thinking of you all.

I'm now nearly 19 weeks and bumps quite big & can feel movement & heard the heartbeat last week which allayed some fears. 20 wk scan is next weds so just keeping everything crossed for that and I hope that if its ok I stop worrying so much. I've had gestational diabetes diagnosed again which wasn't a surprise so testing my blood 4 times a day and eating not much really well. I just can't shift the feeling that everything is going to go wrong but trying to push negative thoughts away! Anyway will keep you posted on next week.

squizita · 31/08/2013 15:17

Guppie congrats on the bfp. Hope it works out.

Baking Really glad you've finally got some answers and there's a treatment. Wishing you all the best with TTC.

Daisybell I also had a delay/issue with my appointment - if you ring/email they'll tell you over the phone I found.

LandsN and Tea great to hear it's going well! :-)

Jbird hope they get you some answers soon.

Purple hugs and good luck!!

Just got AF (27 days, at least my cycles seem back to a reasonable length) ... And a tummy bug! Grrr. Went to a nice restaurant yesterday, but had to return undercooked chicken from my starter. Wondering if that's it (well, at least I'm not TTC as mid-tests - had there been the slightest risk of pink chicken causing squits is have been squitting kittens!! As is, just grumpy as its a lovely day and I want to go swimming and eat ice cream). Feeling quite positive at the moment, trying to believe Mr Aziz's statement that I seem quite likely to be either sticky-blooded or vitamin deficient after trying repeatedly, and am treatable. Well, once they take somemore blood in 3 weeks they'll know and TTC can commence again.

OP posts:
Bakingtins · 01/09/2013 11:22

Squiz hope you are feeling better.
Tea yay for hearing the heartbeat and feeling wriggles! Hope all is good at your scan and then hopefully you get to actually enjoy it a bit.

I'm feeling really got at. Dog has been back and forth to work (vet) for 5 days with acute pancreatitis - she's old and had chronic pancreatitis for a couple of years but been really well in herself until last few days. Had to have the big talk with DH about whether to put her down, then she rallied a bit, so have put off a decision. Yesterday my cat came in holding his leg up, could feel a swelling, suspected badness - sedated him and Xrayed this morning and he had a bone tumour which had caused a fracture, so cat is no more. Sad I've had him ever since I graduated.
BFF who is the only person apart from DH who seems to care about how I am wrt miscarriages/testing etc is moving to frigging Wales.
Work is really stressy because of all the changes, all suspicion and whispering in corners.
Just when I get one little inkling of hope, everything else turns to shit Angry
It's the anniversary of my 2nd MC that started all this off this week, I've had a whole year of crappiness and I've had enough now.

Rant over. I know compared to some of you I have nothing to complain about and I ought to be counting my blessings but sometimes it all just gets a bit much.

Justonemoretime · 01/09/2013 11:51

Baking So sorry to hear about your pet troubles. It really is the last straw, isn't it? I remember when our cat was killed on the road after MC2 last year - I was distraught, possibly more so that the MCs. I think a lot of extra love is lavished on pets in the absence of DCs, and when you are going through these troubles. Hope things turn a corner for you soon. They say it is darkest before the dawn, and hopefully this will mean things are going to get better for you. (In the absence of a magic wand, maybe a platitude will help?)

Squiz hope you're feeling better? Sounds nasty!

Tea you are a ray of sunshine! So pleased that things are progressing well for you.

Purple hang in there, hope you're OK? Try to relax and not stress (easier said than done!).

I completed my charity swim for Tommy's yesterday achieving a PB of 39:02, so I was very pleased with that. Been OV-ing all day and have some stabbing pains, but annoyingly we can't TTC until after the St Mary's visits and tests. Boooorrrrrriiiinnnngggggg. Start new job tomorrow. New start, hopefully in all areas of life!

Hello to everyone else!

squizita · 01/09/2013 16:24

Baking so sorry to hear about your pets. How awful for you. :( Also sorry to hear about your friend moving, hopefully with phone/web she'll still be able to support. One of my most supportive friends lives in Suffolk but thanks to phone and FB chat although not the same, we still chat a lot.

Justone Well done on your pb! Super! The 'know it works but not allowed to bd' thing is a pain in the a**e isn't it?

Stomach seems better now, but yet to try eating/drinking more than water and the odd mini oat cake. But I did build and creosote a gate this morning so I'm hardly wasted away haha!

OP posts:
JBrd · 02/09/2013 13:31

Baking Sorry to hear about your dog and your cat Sad Pets are emotional pillars, I think, and it has such an effect when they are ill. Especially, if you have to worry about other stuff at the same time. Which it appears you have! Work stress is awful, do you think that there will be any announcements soon? At least then you'd know, one way or the other.
Anniversaries are tough - not that I've had one yet, but I've passed one EDD, and two more are looming at the horizon, intertwined with mc anniversaries. Oh joy.

just Well done on your swim! You ladies are all inspiring me to become active again. I haven't done any exercise since my scan at the beginning of August! Booked in for a gym class tonight, dreading it already. I'm also really tempted to start running again, after more than 3 years...

First day back at work after 2 weeks off for me today - and I'm struggling more than expected. Feeling very emotional, not sure why - I was fine all weekend. We had a lovely day out at a maze and children's activity area yesterday, it was great fun (apart from DS being stung by a wasp). But today I'm tired and worn out. Wondering if there are still residual hormones hanging around in my body... Planning to test later this week. The EPU said to get in touch as soon as I get a BFN again, so that they can initiate the next steps for the tests.
My lovely childminder, who is also a good friend, wrote to me on Friday, saying that she's pregnant. From the sounds of it, we would have been due within weeks of each other. I found that a really hard blow, probably due to the timing. Of course, I wrote back all smiles and congratulations, but I was actually crying when I hit 'Send'. I really do want a break from everyone announcing being pg or having babies around me, can't see how this is possible without me becoming a hermit Sad

Namechangingnorma · 02/09/2013 15:06

Hello,
Late joiner to this thread, I have my first set of tests at the recurrent miscarriage clinic early next month and was wondering if anyone could tell me what these consist of. I have had three mc's over the years but have only actually been wanting to conceive since early this year. My last mc was a couple of months ago, before then it was 5 yrs ago

Bakingtins · 02/09/2013 21:36

HI Norma it will probably be a fairly detailed medical and reproductive history, followed by armfuls of blood tests. Your DH/DP may have to contribute one tube of blood for karyotyping, you are likely to need day 2 FSH/LH, bloods for thyroid, full blood count, raft of tests for APS and clotting disorders, autoimmune tests, possibly tests for rubella, chlamydia, toxoplasma, karyotyping. You may need a scan or hysterosalpinogram dependent on if you have ever carried a pregnancy to term.
It sounds like you are past the point where it's an option, but it's very useful to know if the baby you lost was chromosonally normal.
It's worth understanding before you embark on this that even after 3 miscarriages you only get an answer in 50% of cases. it can be v frustrating to be in the "unexplained" category.
I was told there was no reason found, had another pregnancy and another miscarriage which was tested as chromosonally normal, and have since had private investigations which have revealed I have high levels of uterine NK cells, so my immune system is out of balance and preventing a pregnancy implanting and developing properly.

Namechangingnorma · 02/09/2013 21:48

Thank you Bakingtins, that's really helpful. When I had the d&c I asked for tests to be done on the embryo but haven't heard anything about it and it was about 8 weeks ago.

Bakingtins · 03/09/2013 07:34

Mine took a month to come back but someone else said theirs weren't back after 8 weeks when they chased up results, so maybe it will be discussed at your appointment.

Bakingtins · 03/09/2013 09:40

Ladies, would you have a look at this link and consider donating to support this film, please? One of the ladies on the pregnant/TTC on pred thread is involved, and it seems to be focussing on recurrent miscarriage, so relevant to all of us. They need another £100 to reach their target.

Bakingtins · 03/09/2013 09:44

Jbrd hope you are feeling better today. The first day back is always hard, something to do with realising the world just keeps on turning despite how you feel.
Sorry about your CM's announcement too, it is tough to have unavoidable contact with someone who shares a due date.
Do start running! I completed C25K then haven't run whilst we were at my parents and for the last few days with all the pet trauma, I definitely feel worse for not going, or being more positive, when I do go, running is having a positive effect on my mood as well as physically.

Phone consult with Prof Q this evening...

EW1982 · 03/09/2013 11:08

Hi everyone, im new to this but have decided to join after having 3rd mc in a row. Like norma Iam waiting for testing but im wondering if its ok to keep trying I the meantime? I dont really know how long an nhs referral will take. It looks like a really good support network on here which I really need at the mo..

JBrd · 03/09/2013 13:23

Welcome EW! I'm also about to start tests as to why I keep having recurring miscarriages... And although I'm no authority, I think the consensus is that you shouldn't really be pregnant while they do the investigations, sorry. (Please someone correct me if I'm wrong!). I guess they have to establish the non-pregnant status first, to check if there is anything obvious that might contribute to the losses, e.g. hormone levels, clotting issues etc. And pregnancy hormones can really mess with those test results. Plus, they might try and check your uterus by US during your cycle, again they can only do this when you're not pg. But I would definitely call whoever is arranging the referral - in my case, it's the EPU, which is good, because I think that my GP doesn't really have a clue about all this.

Baking Hope you'll get lots of useful information from your call tonight! I really need to start exercising again - had a gym class booked last night, but was so knackered that I cancelled it again. I definitely feel better when I exercise regularly, I'm very sluggish at the moment. Still waiting to hear back from our running club about the beginners class, I would find it so much easier in a group than on my own.

I poas last night and got a BFN - that's only 11 days after my mc, quite pleased that it all seems to be going back to normal so quickly. So now I need to call the EPU to let them know that they can get the ball rolling for the tests...

Bakingtins · 03/09/2013 14:44

Hi EW and welcome. Your hormones need to have settled after the miscarriage for the tests to be meaningful , so even if you have to wait a few weeks for a referral it's not wasted time.
If you were pregnant again they wouldn't be able to do some of the tests, and if they did find something you'd probably be too far on for any treatment available to be useful. It's something you have to weigh up for yourself, because there is a 50% chance nothing will be found and you'll be told to go off and try again, and for those people stats for success are about 70% next time. Personally I'd feel terrible if I lost another baby then found there had been a treatable cause (which is in fact what did happen but I had my consultant's blessing to go try again after all the tests were clear, so was acting on the best info I had at the time)
IME an NHS referral was about 8 weeks wait for 1st appointment. I went private after 2 consecutive MC, 3 in total and was seen very quickly, but I still had to wait until at least 6 weeks post MC for some of the bloods to be taken.

squizita · 03/09/2013 21:13

EW yeah, you're asked not to get pregnant. Also the process takes 2-3 months often - so you have to choose what's right for you. As Baking says many people are told they have a 70% chance next pg without treatment and nothing is wrong. So it's a case of balancing pros and cons.

Norma I'm mid way through the process. As others mention - it's mainly lots of blood tests and I also had an internal scan. They repeat the tests a month later, then results are a month after that.

Baking hope your phone appointment goes well!

JBird know the relief of hitting 0 hcg, sad but good to know you're physically mending. Plus those tests will now be available, phew.

OP posts:
Bakingtins · 03/09/2013 21:38

Hi all - good phone appt with the ever positive Prof Q. My NK cells are 16% (normal 20% then she'd be less hopeful that the medication would work.
Protocol is progesterone from day 21 of cycle, test on day 28, if positive continue the progesterone and start prednisolone. Early scan to check pregnancy is in the uterus then start clexane (heparin injections) as they are cytoprotective for the placenta (nothing to do with clotting disorders which I don't have). All those treatments for the first 12 weeks, then if successful monitoring for faltering growth at 28 and 34 weeks.
We're prepared to give it another shot so I guess we are officially TTC again from this cycle.