Recurrent MC--Testing and beyond--Part 5 continues here

[LAF77]

Here is the list of us on the thread and where we are in our journey through RMC. Nearly 4,000 posts in a year, so mark your place for the next thread.

Part one Part one

Part two Part two

Part three Part three

Part four Part four

STARTING TESTING
LOLA78: mc1 Dec 07 (6wks), DD Oct 08 (problem free pregnancy and natural birth), mmc2 Nov 10 6wks ERPC at 10wks, mc3 Feb 11 at 7wks - suspected ectopic but mc naturally, mc4 mar 11 at 5wks (started 75mg aspirin from a week before bfp) - hospitalised for excessive bleeding and clots. Now referred for testing at local fertility clinic, we have started having blood tests and am on 5mg folic acid.
SCOOTERCHASTER: DS Oct 08 (managed for SVT heart from 35wks), mc1 Sept 10 (7wks), mc2 Dec 10 (9 wks - hb @ 8wks), mc3 April 11 (7.5 wks, hb day b4 mc).
HAIRYLIGHTS, age 42, MC1 (Jun 10, very low HCG, suspected ectopic, methotrexate), MC 2 (Nov 22 2010, MMC,ERPC, no heart beat at ten weeks, fetus 8 week size), MC3 (MMC - Medical Management, Feb 13 2011, MMC at 7 week scan). Waiting to TTC
PANDA 3MMC, no.1 (embryonic loss - empty sac) 7weeks, no.2 at 12 weeks, no.3 at 8 weeks. Awaiting raft of tests for recurrent MC
CLAIREDELOON Age 38 1st mmc, development stopped approx 5 weeks (2007), 2nd mmc development stopped at approx 6 weeks (2009), 3rd mc development stopped at 9 weeks after seeing hb at 8+3 (2010). Bicornate uterus, starting testing Feb 2011.
NOTSOBARRENBROOK Age 35. 1st mmc @ 6 weeks (Jan 2009), 2nd mmc @ 6 weeks (Jan 2010), 3rd mmc @ 11 weeks, development stopped at 6 weeks 3 days (March 2010), 4th mmc @ 5 weeks (August 2010). Possible adenomyosis, awaiting hsg and results of testing from St Mary's.
MILKYWAY2007 Age 28 - DD age 3. 1st MC Oct 2009, 6 weeks. 2nd MMC March 2010, 11 weeks (baby passed away at 7 weeks). 3rd MC July 2010, 6 weeks. 4th MMC 24 Jan 2011, 9 weeks - no amniotic sac, baby measured 7weeks 4 days, no HB, had seen a healthy HB at 7 weeks. Blood clotting, hormone, genetic karyotype and shape and health of uterus checked and all clear. High dose folic acid prescribed.
LUCKYFOR2 Age 32 - DD age 5. DD age 3. 1st MC May 2010 found at 12 week scan passed away at 9 weeks. 2nd MC September 2010 natural at 8 weeks. 3nd MC January 2011 at 16 weeks, saw hb at 13 but no hb at 15.5. All tests have come back clear. Going to take Aspirin and Progesterone in next pregnancy (will be on Promise trial) currently ttc.
IGGI999 - Age 40, 3 year old DS. 3 MC last year, at 6, 8 and 8 weeks. Last two had hb detected. NHS blood tests came back clear, except for presence of antinuclear antibodies. To take aspirin for this. Going to see Shehata in May as think steroids are needed.
CONFU3ED - Age 35 1st MC 1998 14 weeks. DD age 11. 2nd MC July 2009 5.5 weeks. ERPC Twice. No tests. 6 months Clomid 3rd MC January 2010. The foetus sent for testing - came back fine. Been referred to recurrent MC clinic at the hospital for tests, waiting for appointment. Was told I have PCOS through a scan but never diagnosed.

UNDERGOING TREATMENT
HAVINGKITTENS Age 41 - MMC1 Nov 07 8wks (discovered due to bleeding at 10.5wks) ERPC, TOP1 for TS21 Aug 08, TOP2 for TS21 Feb 09, TOP incomplete, ERPC performed, Genetic Counselling & tests confirmed no chromosome problems with us, "just bad luck ", MMC2 Feb 10 5.5wks (seen at 8wk scan, no bleeding), MMC3 May 10 (as MMC2), RMC testing at UCH, no cause found - empirical 75mg asprin & vit D + early & regular scans for next pregnancy, MMC4 No fetal pole seen at 6.5 wks, follow up scan 10 days later, told of MMC, then "Something" spotted so instructed to wait another week before they would allow ERPC, ERPC a week later, waiting for NK Cell test results from Mr S on NHS, taking 75mg Asprin, Vit D, Pregnacare Plus (w/Omega 3), 5mg Folic Acid (been taking since 1st TOP to try & prevent TS21 or similar issues), NK Cells levels almost double what they should be. 25mg Prednisone from ovulation - CD1 or if BFP then 'til 12 wks and then weaned off 'til 14wks plus Progesterone pessaries from BFP - 16wks, Folic Acid, Omega3, Vit D - 12wks, Asprin - 20wks.
CRYSTAL5 Age 38 - DS age 4. 6 m/c 1 at 11 weeks, 5 at 5/6 weeks. Ok blood tests, under Endocrinologist for Hypothyroid
LADYBEE 37, MC1 (5wks), DS (2), MC2 blighted ovum discovered @ 8 wk scan, MC3 natural @ 9 wks following hb seen at 7 1/2 wk. PCOS previously diagnosed, Factor V Leiden heterozygote discovered in recent testing. Treatment with aspirin (from BFP) + clexane started at 6 weeks. MC4 MMC @ 8.1 wks (discovered @ 11 wk scan) following hb seen at 6+6 wks. Consultant suggests aspirin + clexane to start at 4 weeks, plus progesterone pessaries. Management of MC tbc.
DIGITALGIRL Age 32 - DS 2.8 - 4MCs since ttc#2. MC1 Nov2009 @5wks. MC2 Apr2010 @6-7wks. MC3 Oct2010 @7-8wks. MC4 Mar2011 @8wks. All natural, except MC4 managed with ERPC for karyotyping. Clotting tests normal. DH & I genetically normal. On Metformin for mild PCOS, plus 75mg aspirin, Pregnacare Plus & 25mcg VitD3. Diagnosed with high NK Cells (1.25) after MC4. Starting TTC in May with prednisolone from ovulation and will add cyclogest once pg. Under care of Mr S.
PUREEQUEEN Age 34, MC1 (7 weeks Jan 08) MC2 (6 weeks March 08), DS born (prem) 2009, MC3 (9 weeks Oct 10). MC4 Jan 2011. First 2 natural mcs latter 2 mmc/ERPCs. Chromosome test MC4 showed she had a genetic abnormality (cri du chat). Karotyping for me and DH fine but with "increase in length on satellite of short arm 13 and 15" (??) . Also have endo &septate uterus. Now TTC and will take aspirin and progesterone.
LAF77 , Age 33, MC1 (7 weeks Apr 10) MC2 (5 weeks Sept 10) MC3 (9 weeks Dec 10). All have been natural mcs and number 1 and 3 were embryonic . No children, First appointment with St. Mary's in April, second round of bloods in May, with results in June.

PREGNANT
MATTSMAMA Aged 41. 1st MMC November 2004. My DS (who I love with all my heart) born 2006. 2nd MMC July 2010. 2 chemical pregnancies September and October 2010. Under Dr Shehata and got BFP on first round of treatment for high thyroid antibodies and high killer cells.
BANANA87 Age 30- 1mmc@7 weeks, DD (2), 1 mmc 6 weeks, 1 mc 7 weeks, Going to try aspirin and progesterone as per consultant. Clotting bloods normal.
MUMMYABROAD Age 36, 1DS (2.9), 1MMC Mar 2010 (@14weeks) Ashermans diagnosis and treatment Nov 2010, Started TTC Jan 2011 BFP on Cycle 2 EDD 4/11/11. Heartbeat seen at 10 weeks.
GLITTERYBITS 1 anembryonic MC (12 weeks), unexplained infertility, 1 round of clomid, currently pg and terrified!
JUSTMEE Age 21, MC1 (7 weeks), MC2 (6weeks), MC3 (5weeks) currently pregnant with 4th pregnancy using clexane injecting 20mg a day
LOVELYBUNCHOFCOCONUTS Age 23, 1 MC (13 weeks), 1 MMC (10 weeks - growth stopped at 7), 1DD born 2008, PCOS diagnosis, bi-cornuate uterus. EDD 03/10/11
LOVEMYSLEEP Age 39, 1 mmc, dd born(now 5), 2nd mc (9wks, 2days), 3rd mc (9wks, 3days) and 4th mc at 5 wks. All tests on NHS came back clear. Currently undergoing treatment with Dr.Shehata for very high natural killer cells - aspirin, progesterone, steroids, omezaprole and one intralipid infusion completed.

GRADUATES WITH BABIES!!
LUNATIC dd1(4) 2 mmc (8 wks) dd2 stillborn (32+5). Seen at St Mary's. clotting problem, pg #5 aspirin 150g daily. Ds1 born 9/2/11 c/s @ 35 wks
STILLFRAZZLED Age 35, DS1 (3.6yo), 1 mc @ 5 weeks Jan 09, 2nd mc @ 9 weeks March 09, DS2 born @ 35+3 on 04/01/11 with Intra Uterine Growth Restriction but currently home and doing well.
MUMATRON Age 28 2 dc then 4mc, 3 @9weeks 1@5weeks, tests showed possible free protein s ishoo. dd2 born 06/01/2011, aspirin, claxane and high dose folic acid through pg.
JULEZBOO Age 29 1 mc @ 14 wks, DS1 (8yo) 4 mc @ 5/6 wks, DS2 (3) 2 mc @7 wks... DS3 (14/01/11 @35 wks) Dx with Factor V Leiden and Septate Uterus. Clexane and Aspirin throughout pregnancy and progesterone with DS3.

Hi all, I joined this thread back in January after having my fourth miscarriage. Tomorrow would have been my little daughter's due date. I'm going through so many emotions this week. I had my 20 week scan on Monday and found out I am having a little boy, and he is healthy and well. Since the scan, I have been overcome with so much guilt for not giving my daughter the chance. I keep thinking if I had pushed for extra tests after my third mc, I could have saved her. I made changes to save this baby, but I didn't give her that chance. I just feel so sad. I keep thinking she's watching me from somewhere and thinking I didn't do anything for her. I know these feelings aren't fair on my little boy. He is truely a little miracle, and I am still so scared something might go wrong with this pregnancy.

Yesterday I started crying in the car thinking about her. I don't know why, maybe because I knew her gender and saw her heart beating, she became real to me from the first moment I saw her on the screen.

I just hope all my lost babies will forgive me for not saving them. Feeling really down today. Thanks for reading.

Oh Milkways . I bet if your daughter IS watching you she is thinking thank goodness my mummy has the chance to be happy again with a new baby.
I used to feel guilt for anything I'd done in my mc pgs, but then I remember how little I changed my life in my first pg, and yet it was the only successful one.
You are pg AND facing a due date, no wonder you are having a bad time.

Thanks for the reply iggi. I didn't really change my life with my first pregnancy either, but even then feel this immense guilt.

milky feeling for you today. Your daughter would have sensed how loved and wanted she was when you carried her and if she has a window on your life now, she will see just how precious she is to you. I saw two of my babies' hearts beating too and I know how it breaks you to think how things might have been different but we couldn't have known what the future held or what to do - we aren't the experts. Due dates are so tough, please don't give yourself a hard time, life has thrown enough at you already. Thinking of you x

Hi everyone, just a quickie to spread some Dr Google info. I have just found this brilliant site that brings together a whole ton of research into miscarriage including food, supplementation, thyroid, immune issues and more. It just provides links to the research done from all angles. But it's great reading - very much distracting me from my research so far.

Here you go:

sites.google.com/site/miscarriageresearch/home

Anyone have chance to read through let me know what you think!

Milky I hope you are feeling a bit better. I think we all get feelings like that, even though we know NONE of this is our fault. There was nothing you could do to help your daughter or any of your other pregnancies. You are doing the best you can. Good news on the scan though, I hope you can take comfort in that.

Hi Freelance, hope you are doing ok(ish) this week.

Hi Iggi. I don't know, maybe it will jump up and bite me on the ass one day soon, but right now I seem to be coping ok. Of course there have been low moments but maybe I am also developing a certain level of detachment. Not sure if any of the rest of you can relate? Am really not too bad at all, all things considered. The ERPC was so much easier than the natural mc at 12 weeks. I guess knowing it was likely, due to the scans not showing any growth over 3 weeks, made it less of an awful shock.

Physically I came off the Prednisolone finally today (having tapered from 40mg) so am looking forward to getting it out of my system. No real changes until a) I start af, whenever that might be and b) see Mr S for a new strategy.

Hope you're well!

freelance i know what you mean with the sense of detachment. i wasn't really shocked at all when i had my second mc. i didn't really feel like i was having a baby, even at 20 weeks.

it's sad really cause i don't feel like i will ever enjoy pregnancy.

freelance most of my mcs were like yours with the measuring small and waiting and going back for scans to see if there had been any development. The last one there was no fetal pole and it never appeared. By the time I'd gone back for my 3rd scan and it was a confirmed mc I felt like I'd already come to terms with the loss and it wasn't a great shock. I felt the same detachment as you do now. It did, as you say (and were also my chosen words at the time), come and bite me on the bum a little while later but not in the same way as before.

Mind you, I didn't think then it would be so long, or so much less likely for me to get pregnant again back then, having managed to get pregnant 6 times in 3 years (for all the good it did me). I do feel slightly different about it now!

It is sad isn't it, that we have to detach ourselves like this. But I feel it is the only way to get through it. And yes the going back for inconclusive scans is upsetting enough as it is, it's almost like you start the grieving process early (waiting for it to bite me on the bum...). That is my next fear too I think, not being able to get pregnant. Mind you, if I got pregnant first time trying like I have twice this year I will be a bit scared too. Unfussy uterus and all that. And then begins the whole pregnancy mentalling again.

I was reading Dr Beer's book again last night and he maintains that both failure to implant properly (ie chemical pregnancies) and blighted ovums (which am pretty sure is what I might have had this time being that no foetus was ever seen?) are all linked to NK cells.

feeling like I need some handholding today...do i really want to ttc and go through would could be a 6th mc? I know I am having NK cell treatment now so things are different but I just don't know if I am strong enough to cope...sorry to be so self pitying.

Sorry you're feeling crap Puree. It's understandable though, you know that, after everything you have been through. I am not sure I am the best person to cheer you up being that I have actually just had a mc whilst actually on the treatment BUT the general pattern for people who have high NK cells is they have several miscarriages, get treated and go on to have a healthy baby.

So you are doing all the right things and in the right place for it and there is every reason to be positive. I know it's hard to cope sometimes though. Big hugs for you and just know that there are those of us here who can relate and are of course here for handholding xx

puree I have had many a sleepless night wondering if I could put myself in the potential position for another mc. The only guaranteed result is by not trying. You definitely won't be at risk then, as I think the chance of immaculate conception has passed us by :-)

The good news is, you have a diagnosis. The treatment doesn't assure you of 100% success rate, but it must improve the odds than no treatment. Would this be your first pg on pred?

I graduated from St. Mary's today. I had my final scan there before moving to my local hospital. Baby is well, measuring 11 weeks, 5 days ahead of schedule. I tossed and turned all night, contemplating how I would react or manage the news if the baby died. Baby was definitely there, doing a little dance on the screen. I love him so much and I can't contemplate losing him. I have my nuchal scan in 9 days. Maybe I will have a happy ending with this pg.

True LAF, the only way we can really prevent another mc is by not trying. But you are right, the good news is that you have a diagnosis Puree and a plan of action! Mr S has an 85% success rate, which are pretty damn good odds.

LAF that is such good news about graduating from St Mary's today. It's wonderful to have got this far and certainly a really strong indication that it is all going in the right direction. It breaks my heart to hear you say that you love this one so much and can't contemplate losing him. I really hope that doesn't happen this time and everything indicates to this one going well. I hope at some point you can hopefully be more positive about it, but it is understandable to be worried. Wouldn't it be lovely if you could now be hap and relaxed about it all. Unfortunately mc has taken that away from us to a certain extent.

LAF congrats on your good news!!

did you ever get a reason why this had happened to you? did you have any treatment or is this just the result of tlc?

pebs I was found to have a blood clotting problem when pg, known as high TEG levels. It doesn't show up when I'm in a non pg state, everything came back clear. Apparently, it affects early losses quite strongly. I would hazard I guess that it played a role in most of my mcs.

This time, I used OPK, which I never did before, which may have given the baby a better chance of a good start. All of my previous ones have been unscientific in terms of the conception window. I was shocked to be pg the third time around as I was nowhere near the conception window having just finished my period.

I'll never know what happened for sure, maybe a mix of several things, but I'd say TEG played a role.

freelance we can never be so innocent about pregnancy, you are right. I always think about what could go wrong. My odds are better now with a diagnosis and treatment. I've had enough heartbreak now, so hopefully, it is my turn to be a good statistic instead of a bad one. When do you see Dr. S again?

I see him again on the 8th in the evening so will see what he says about my next course of treatment. Also trying to get in contact with St Mary's to see whether they have received my referral yet - have left three messages with no response yet unfortunately. My ERPC was 18th August so I guess I have a while until AF comes back and I try again. Hopefully cycles return to normal! So no real news until then. But it's fast approaching as it is now next Thurs. See what he says about what to do next.

I think the TEG thing might have done the trick this time with you LAF. Was it just a case of doubling your aspiring dosage if I remember rightly? Wonder if it is worth me doing that next time too or can it potentially cause harm if you don't have a problem? Will add it to my list!

freelance I empathise. I struggled to get in touch with St. Marys to find out if they had my file. You just have to keep calling because no one returns your calls.

I never took aspirin in any of my previous pgs. St Marys is of the opinion you shouldn't take any unless you have a diagnosed condition. I am not a doctor, but I think that if your blood is too thin, the placenta would not attach and develop, in the same way if your blood was too thick. I'm not sure why some conditions require heparin and others require high dose aspirin. I suppose heparin is stronger.

I forgot to mention I did ask about the TEG test and St. Marys thinks they are the only hospital in the UK that does it.

thanks for the support - LAF I'm so happy for you, I am so pleased everything going well so far.

i haven't had any results back yet from my tests so don't know what they are going to find but if they don't find anything i think it might be worth a referral to st marys. Liverpool would be much more convenient for me but they don't do the TEG test.

LAF how much aspirin did you take?

pureequeen I know exactly how you feel. The main two things that have kept me going are the fact that the NK Cell treatment claims to have an 80 (or is it 85?)% success rate and that I think I can only stop trying if I know I have tried all there, reasonably, is to try. That would be the only way I think I could draw a line under it and decide enough was enough. Either that or the possibility of being biologically intercepted by early menopause, which is also a concern to me given that I'm just about to reach the age that my mum and grandma both had theirs.

I know that there are no guarantees and that there are some of us who have been on the steroid treatment and been unlucky to miscarry again but there are also inspiring stories of those who have persevered on the treatment. In the last couple of months I have met up with two different friends who I'd not seen in ages. They both asked me how I was getting on with my TTC battles and when I told them where I was at now they both told me that friends of theirs had been through similar and had been given treatment for high NK Cells, one of the couples referred to had had 3 successful pregnancies on the treatment but had a couple of miscarriages between them. They chose to persevere and it proved very worthwhile. The other couple also now have a baby. Hearing those stories are what keeps me going!

Can I check, is the TEG test something you get done only once pg, or before pg as well? Could you go privately to St Marys JUST for that test? I do wonder why some tests are not done more widely, it makes it so hard to feel you have covered all the bases . Back on the steroids as opk positive today. Not feeling very positive!

puree i think we need to keep going through this so we don't have any regrets in the future. surely something must work - just looking at all the sucess rates for treatments must make us feel positive. even when there is no know reason lesley regan says 80% of couples get a take home baby just by using TLC.

look at me being all positive - not like me really!!

iggi i don't know about the private test but i don't see why they wouldn't do it. if you are paying i am sure they will take your money and if you have already had all the other tests previously they wouldn't do them again at your own expense surely?

i am still waiting for af. it;s been 9 long weeks now since mc. does anyone think i should go to the gp? what would the gp say - i imagine they will just tell me to be patient and wait a bit longer.

i am also still waiting for my consultant appointment to get the results from all my tests. this should be in another three weeks. should i wait for the consultant or will they not be interested in my missing af?

i just want a tablet or something that will sort my cycles out - does this exist or am i being silly? would acupuncture work to get my cycles going again?

i have been temping this week and my temp has been around 36.1 all week (apart from yesterday when it was a bit higher but i woke up much later than usual). don't know if that means anything.

i did a pg test on the off chance yesterday but it was bfn so that is ruled out - would have been a bit an miracle as we have been using condoms.

Pebs I had some form of period 4 weeks after each mc, a "normal" one by 8 weeks. It took slightly longer when I had an ERPC, but not 9 weeks. I do get accupuncture, if you can find one who knows a lot about fertility I think it might be worth a shot. I can imagine how helpful your GP might be, but who knows!
I must say I've never experienced much in the way of tlc in early pregnancy, usually I'm just sent away to wait to miscarry for the first scan.