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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:
PicardyThird · 13/07/2013 23:26

Gosh Baking, we really do have rather parallel lives. I've got a few work developments going on as well. And I was just saying to someone yesterday that i don't know what I want any more.

Ladybee, hello - sorry you find yourself back on the thread. I see you too have 2 dc and 5 mc and Factor V. I'm afraid i can't provide a great deal of wisdom about the trying-again thing, as I am failing miserably to deal with it. Feel pushed in direction of giving up but tbh don't think I can bear to.

Period turned up yesterday, 4 or 5 days late - extremely unusual for me. Had several negative pg tests in the run-up, so I don't think an early mc was involved, but it has made me a bit Confused because I am usually the epitome of regularity. Off on hol for 2 weeks on Mon, mostly in rather cramped accommodation, so ttc will be a bit of a challenge, although i hope we'll find a moment Wink. First geneticist appt the week after we come back - not expecting any answers straight away, as she is insisting on taking and testing the blood herself [FFS]. I feel we just have to keep going in the meantime, although I felt extremely ambivalent about the idea of pregnancy while waiting for my period. One night I dreamed I was holding a positive test in my hand and woke up in panic, with the words 'oh no' ringing in my ears Hmm

Bakingtins · 15/07/2013 08:15

Newsflash - we've decided I will go up to see Dr Quenby, hopefully this cycle. We can then take the summer off and wait to see what the results are before making a decision on whether to try again.
This is positively, definitely the last option for us where have I heard that before and we're going to put all sorts of caveats on trying again in terms of the length of time we'll try and if it doesn't work that is it. I suppose if nothing else it postpones a decision and we can see how we feel in September.

nearlyreadytopop · 15/07/2013 10:38

tins thats good news . This is for nk cell testing? I know I wont stop till every avenue has been investigated

I have to wait to try again too (is there a waiting to ttc thread?) we have had the when do we stop and just be very grateful for what we have talk. I'm a bit more bloody minded than dh. But this latest mc has left me very broken emotionally. So I am taking a break for a few months, recover, loose some weight, have a few periods (here's hoping), get the tests done and try to chill.
How long will it take for results to come through for you?

Bakingtins · 15/07/2013 13:23

Hi Nearly. Yes the appointment is for a scan and uterine biopsy (eek) for uterine NK cells. It takes about 4-6 weeks to get results which takes us into September.
Sounds like we have a similar plan - take the summer off TTC, take some vitamins, complete the C25K plan so I'm a bit fitter - get results in the new term and then see where we are up to.

Picardy have a fab holiday.

xXjunebugXx · 15/07/2013 16:35

Tea, amazing news, so happy for you.

xXjunebugXx · 15/07/2013 16:41

Baking, have you had a blood test for NK cells? Or just having a biopsy?

I will also be having the summer off. I'm not happy about it but is necessary. I am getting tests done next month so I have to wait for those and for the results. I am fertile now and it doesn't feel natural not to try :(

teaandchocolate · 15/07/2013 22:05

Thanks Junebug! I still can't quite believe it and finding it quite hard telling people as I don't know how to react to their excitement. I just want to tell them to calm down as its early days and it could still all go wrong! But at the same time I have started to get a little bit excited and even (rather prematurely!) started a list of names!

Baking I'm so pleased you have a sound plan. I also think seeing an experienced and trusted consultant will be really helpful and hopefully give you a better idea of where you stand.

To all those taking time out from ttc I completely know how you feel and how strange it is as we took quite a few months off to get tests done. It actually really helped me I think. I was in a much better place emotionally when we did start trying (although I did lose it a few times during that ttc time as you all know!). I took loads of vitamins, did exercise and had acupuncture (as well as having a few drunken nights out) to get myself in the best possible place for ttc. Its such a hard slog though.

Bakingtins · 15/07/2013 22:16

Hi Junebug no just going straight for biopsy. Received wisdom is that nobody knows whether blood NK cells relate to uterine wall levels or not, or how relevant they are. Dr Quenby's work still at the research stage but she is well respected.

donttrythisathome · 16/07/2013 00:18

Taking the summer off and getting fit does sound great. I feel I can't afford to wait and am too impatient. I could really do with getting fit though.

Teas, that's exciting making a names list. Any clues as to faves...?

Baking, I'm glad you've reached some sort of decision. It must be a relief of sorts. As someone said there is no decision that is conflict free - that is one of the hard things about this. Why do you think biopsy is better than the bloods, and do you know where is a good place to find out the basics about NK testing? Even though I am going to Dr Shehata I am just stumbling around in the dark really, clueless.

squizita · 16/07/2013 08:14

Hi all... been offline for a few days. Phew it's hot!! Been all over, doing a vintage event, DH's husband and sports day 1 and 2 (we're a sports sepcialist school) yesterday/today.

LadyBee -hi, sorry to hear of your loss. :( Flowers

Tea - WOOP! :) What a nice scan to have. It must be such an ENORMOUS relief. Sending continued good vibes. Also considering acupuncture. I heard lots of women who have IVF find it helps things 'stick' and as I tend to have 6-8 week losses I wondered if it might help me?

Baking best of luck with Dr Quenby. Fingers crossed you get some answers this time, and that they are the kind of answers she can treat! Sending good luck Flowers As the others have said having one of the 'big names' advise you may give peace of mind with whatever you decide, at least you know she is one of the best and knows her stuff.
We're also all-change at work. I've got 3 of the strongest members of my team leaving to be replaced by NQTs (fresh-out-of-teaching-college). Darn it, the gals got such good results they went for promotion- can't blame them! We still have a strong team but next academic year's gonna be more hand-holding and training for me to do than this.

Picardy I hate it when AF messes around. It seems to happen a LOT, and unexpectedly, to us RMCers - so try not to worry it probably was just a weird AF if there were no BFPs.

Junebug I'm also waiting. Have been told to cause of tests and it's advised to wait after partial molar. It does seem so frustrating but DH keeps pointing out the whole "TTC, BFP, MC, WTF cycle, TTC, BFP, MC..." month after month was grinding us down physically and emotionally and he has a point.

OP posts:
nearlyreadytopop · 16/07/2013 08:54

tins I will keep everything crossed that Dr Q finds something she can help with. On a c25k note, I got up to week 3 before bfp. I am actually really looking forward to starting again. It was great for my sanitySmile what week are you on?

ladyb I'm sorry for your loss. I have been wondering about metformin as well. I took it prior to my first pregnancy, we had been ttc for 15 months. ds is now 2. I didn't realise until recently that it might be useful in staying pregnant as well. I have just started back on it as I need to loose some weight.

Its 5 weeks until my nhs tests. Can anyone remember how long it took for results to come back?

Bakingtins · 16/07/2013 09:22

donttry I think it's v hard to find unbiased information on it. I read Dr Beer's book "Is your body baby friendly?" but found it quite confusing. There's a thread on the pregnancy board called something along the lines of TTC/pregnant on prednisolone for women who've had RMC due to immune issues. The RMC clinic that I attended and my consultant both said blood testing for NK cells is unreliable - they don't know how that relates to levels in the uterus. My private consultant recommended Dr Quenby and she does a fixed price consult and uterine NK cells test, plus she does any follow up by phone and works with your local consultant if it comes to recommending treatment. What I didn't want was to start down the road of immune testing and end up spending thousands on many many tests - for us this is "thus far and no further".
Friend of a friend went to London (not sure who she saw for testing) and had loads of tests, ended up having IVF and selection of a genetically healthy embryo even though she had got pregnant and miscarried many times, intralipid, steroids, IVG....she did get her baby, but it's just further than we personally are prepared to go.

nearly I had just started wk 4 then twisted my ankle so have had a week off. Am going to start week 4 again tonight. Aiming to do a 5k run in September. I was thinking about getting myself sponsored and trying to raise a bit of money for the Miscarriage Association, but not sure if I want to do the inevitable explaining why. What do you think?

I think most of the blood tests were back in a fortnight, but the karyotyping takes ages (6-8 weeks)

Ladybee · 16/07/2013 12:14

That IVF with pregenetic screening is about the only thing I've thought about in the last week - I even looked up costs, it's the closest thing to a guarantee on the embryo side. But I think (even before the money is considered) it's just not something I could do to get there. I hate the idea that my body doesn't support healthy embryos and I suspect knowing I'd had a healthy one transferred and still lost it would be devastating. I think this is why I'm feeling quite ambivalent about getting the test results back. Also learning the sex, I think that will be v v hard.
My ERPC was a week ago. It feels like no time at all and over a month, at the same time.

Bakingtins · 16/07/2013 14:00

I found it very tough to know for sure I was losing healthy embryos (or at least that that last one was healthy) Somehow that made it my fault, whereas if it was a genetically dodgy embryo that was just unfortunate. I didn't ask about the sex, you don't have to have that info if you don't want it.

orangebowl · 17/07/2013 07:56

Hi ladies. I'm on my phone so just a quick one. Tea- I'm soo pleased for you. And can't believe you are past 12 weeks already.. Although sure it went slowly for you.

Yes really hope you get some options at least from Dr Quenby Baking.

I am still not sure if its appropriate for me to be hanging around here but decided to update. So now 35 weeks today! Baby is breech at the moment but midwife says still time to turn.. Also.. baby apparently on the 95th percentile- yikes! (For those that don't know me story is 1ds no problems, 4MMCs mainly around 8/9 wks then diagnosed with antiphospholipid syndrome, taking aspirin and heparin with this pregnancy and here we are...).

Sorry not to name check everyone else - hoping all that testing yields some results. Xx

squizita · 17/07/2013 10:01

School Glad to hear from you and that you're nearly there! :) Hope the baby turns! Otherwise does it mean they recommend C-section? Sounds like you're in good hands whichever way mini-school decides to make their entrance! :)

OP posts:
teaandchocolate · 17/07/2013 10:49

Thanks School & Squiz!!

School can't believe how close you are now! My DD was breech and I ended up having a section (which worked out well as meant I avoided induction for gestational diabetes which I was v worried about). Anyway section was absolutely fine. Very calm and relaxing. However if you want to turn the baby then acupuncture can really help apparently!!

Bakingtins · 17/07/2013 11:12

Of course you should still be here, School. We are very much looking forward to hearing about Mini-school's (should that be preschool?) arrival.

orangebowl · 17/07/2013 12:02

Ah thanks everyone. I'm not sure what they will do if baby still breech in 2 weeks when I go for scan and consultant review (will be 37 weeks then). Midwife said she didn't think They would try to turn baby (ECV) with my history and so they would probably recommend c section. Hadn't really considered it before- good to hear yours was calm Tea. To be honest I don't care as long as they get baby out safely. X

nearlyreadytopop · 17/07/2013 13:58

hi school you are like a ray of sunshine. so so good to hear from someone who has been through rmc and is out the other side Smile

nearlyreadytopop · 17/07/2013 21:07

slightly random question, how long do I wait after erpc before going swimming? dr google is giving me a variety of answersSmile

orangebowl · 17/07/2013 21:49

Aw thanks Nearly- that's lovely of you..

Re. Swimming, I think just as soon as bleeding has subsided (I hardly had any bleeding with any of the 3 erpcs I had so would have been after a couple of days) is ok.

Polka2 · 18/07/2013 09:13

Morning ladies! Hope everyone is managing to 'grin and bear it' at the mo, personally I'm finding the royal-baby arrival quest quite tough as I would have been due around now if my 2nd mc didn't go to pot!

We had our appt with Raj Rai yesterday (fought thru' journalists/photographers) which seemed really positive. A lovely guy with a straight forward approach. I did ask him about the NK stuff and he surprised me by saying that there is no evidence whatsoever of someone with NK cells having successful treatment for their NK cells to avoid mc, he said the treatment they have won't affect the cells but wether its because they're being more closely monitored etc - confusing Confused

Bakingtins · 18/07/2013 09:28

So hard to get a straight answer on this when they all disagree with each other! I think St Mary's don't subscribe to any of the NK cells stuff.
Did you have some tests done Polka ? How long until you get the results?

Polka2 · 18/07/2013 10:32

I know baking its impossible really as I don't want to throw money pointlessly but do want to make sure all bases are covered - hard to know where to draw the line but will see what these tests say and go from there I think. Confused

Yes had various blood tests taken and have my 2nd appt in a months - he analysed the bloods I'd previously had done 6 months ago and confirmed no chromosonal/hereditary probs so now looking at Lupus and had a TEG and APA test too.