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

(1000 Posts)
LAF77 Mon 02-May-11 09:23:42

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.

teaandchocolate Thu 13-Dec-12 13:31:58

Argh posted too soon!! Fat thumbs...

What I was going to say is that I shouldn't say this but I ideally didn't want another summer baby. I know I hardly stand a chance of having a baby at all but DD is apparently 6 months delayed developmentally and is a July birthday it's a bit stressful. I know I sound mental but I'm paranoid that she has problems that we've passed on - like some chromosomal abnormality which sometimes causes mc and in DD has caused some other issue. There I've said it! I'm mental aren't I?!!! Does that make me an awful horrible neurotic nutter? I'm just so paranoid there's something wrong with our genes.....not said this to anyone in RL so please don't be too harsh as I do know that any baby is a blessing. My warped logic now thinks a autumn baby stands a better chance. However my 2nd mc would have been due in oct and here we are again a year later and no baby so not exactly a well thought out plan!!

I can't believe the variations in the standard of care we all get. My Gp won't prescribe progesterone so I'm paying for private prescriptions as was easier. No idea if I would get more scans as just speak to the consultant directly but maybe I should push for that if I ever pluck up the courage to actually ttc!!

orangebowl Sat 15-Dec-12 07:39:12

tea sorry it's taken a few days for me to post. No idea where the time goes at the moment.

Ok, so you do not sound bonkers at all and I am the same in that I start thinking up all sorts eg are the miscarriages because I am Half a stone heavier than when I had DS1!

How old is your daughter tea? And are they giving you all the info you need etc? Ok I will tell you practical stuff.. I have been researching miscarriage for over 2 years now and have never ever heard of anything you describe.

But if it makes you feel better to have a break and know Aug baby will not happen then that's ok and a break can only be a good thing both mentally and physically.

So after 3 days of getting 1-2 wks on a clearblue digi I got a 2-3 today. So baby steps (no pun intended!). Reason I'm so paranoid about that is 3rd (and earliest) mc was at 5.5 wks and it never got past 1-2 wks. Appointment booked for scan 28th dec.

Also tea have you manage to get yourself referred to a specialist recurrent miscarriage clinic? Where in the country are you? I found that as soon as I went to Liverpool my care was ace as they just knew what they were doing.

Off to get a cuppa now.

Xx

Now I have to think about how I will deal with the not drinking at my work Xmas party on Thursday.. Hmmm!

teaandchocolate Sat 15-Dec-12 22:52:07

School thanks for your response and that's amazing news about the digi test!! I know you are probably feeling really stressed out and anxious but I will keep everything crossed for you. You're doing everything you can now and I so hope it works out for you.

Thank you also for not judging me. I do feel slightly unhinged in that I seem to relate everything in my life back to the miscarriages - every twinge, ache & pain and illness makes me wonder if it could explain why I keep losing babies. I just find it hard to accept its bad luck as obviously they were caused by something it's just that noone knows what (except the triploidy one). I am just not the kind of person who can accept its natures way. Even if they were all chromosomal abnormalities - why am I more prone to them than everyone else?!

DD is 2.4 so very young really and hasn't been officially 'diagnosed' just me and nursery think she's about 6 months behind and she was really slow to do everything (didn't walk til 22 months). Going to the doctor with her next week and will mention it. Hopefully she will catch up and she's just laid back but obviously I stress about everything!

I'm not under a recurrent mc clinic I just see an individual consultant who I saw for a private d&c - I call his mobile and he arranged nhs tests and will scan me. I also sought out other tests privately. Would rather be under a clinic but don't want to 'annoy' the consultant by suggesting it as not sure I want to leave his care. Might try to see a sympathetic GP I found at my surgery and see what her view is.

As it gets closer to Jan and the time for trying again I just feel more and more anxious. How do you get through it and stay positive?!!

teaandchocolate Sat 15-Dec-12 22:54:17

Ps school my best tactic for not drinking is to fake drink rather than say you're not drinking!! So accept drinks and pretend to drink them but leave them in the loo or start new ones etc! If you specifically say you're not drinking everyone starts guessing!! Also everyone else gets so drunk they don't notice your glass doesn't go down!

butterfly86 Mon 17-Dec-12 07:54:53

Hi ladies well af still hasn't arrived i"m now on cd34, had quite a bit of brown spotting on day 31, on & off on 32 which then stopped completely and just the odd dot yesterday nothing there this morning. What do you think might be going on?? I haven't tested i'm scared to as i don't think i feel pregnant, i'm just wondering if my cycles are a bit messed up after erpc in sept but i've had 2 periods since and last one was on time. I did have spotting last month but it was heavier and was constant for about 4/5 days before af which started cd31.

pebspop Mon 17-Dec-12 13:55:02

sounds like implantation bleeding to me butterfly do a test!

my midwife came this morning. i listened to the heartbeat and my bump was measuring 24 weeks so that was good.

teaandchocolate Mon 17-Dec-12 14:43:56

Butterfly the only way you will know is to test! Do you know if you ovulated this month & when?

Pebs that's fab news!! So exciting!!

butterfly86 Tue 18-Dec-12 20:14:58

Pebs thats wonderful! Must be lovely hearing the heartbeat :-)

Tea i dont know when i ovulated i dont track really but can usually go by cm, in an average cycle i usually ov around cd18. I have taken a test tonight which came up very very faint positive but im not convinced because its a sainsburys test and ive been reading about them and a lot of people say they give false positive. I still have the very faint brown spotting x

teaandchocolate Tue 18-Dec-12 20:27:29

Butterfly that sounds like a positive to me - I don't think there are false positive just evaporation lines? I also go on cm & am very accurate now after all the bloody practice!

I would say congrats normally but instead will just give u a virtual hesitant squeeze....let us know what the next test says. Try and stay calm and sleep if u can - I know I usually get in a tizz as soon as I get the bfp and stop sleeping for a while...

Keeping everything crossed for you butterfly

butterfly86 Tue 18-Dec-12 21:43:19

Well i dont think it could be evaporation as it came up quite quickly but im not convinced yet wish id just bought a bloody clearblue now!
I think im pretty accurate with cm when we first started ttc i thought what the hell are theses people on about but now i know! Tea Thank you so much for your lovely words and always taking the time to replyto my posts you are all so lovely on here don't know what i would do without mumsnet xx

butterfly86 Wed 19-Dec-12 20:13:16

Just done a clearblue and got a faint positive so dare i say it i think i could be pregnant.....going to do the 2 one in the morning just to be sure x

teaandchocolate Wed 19-Dec-12 22:19:55

You are definitely pregnant congratulations!! Do a digital one next? How do you feel?

butterfly86 Thu 20-Dec-12 07:49:54

Thanks tea i've done the 2nd clearblue and it's definately positive! The line is clearly there but not as strong as the control line which i know is still a positive but i'm thinking whys it not strong?? This is what mc does to you though isn't it you analyse every little thing. I'm feeling ok my boobs are sore and im falling asleep on the couch at 9.30 every night feel a bit sick but think thats in my head or its nerves. I'm going to ring the consultant this morning to sort out scans as i have to have them weekly, fingers crossed its 3rd time lucky for me x

teaandchocolate Thu 20-Dec-12 13:15:32

That's great that the consultant will scan you weekly as will at least let you know what's going on. Although I don't think they can see much until about 6/7 weeks. How far do you think you are? Really hope it works for you this time! And try not to worry too much about the lines as not sure it means much. Do a digi one and see how many weeks it says maybe

butterfly86 Thu 20-Dec-12 13:48:05

Yeah i thought i would be scanned straight away but they said i will have to wait until week beginning 7th of jan just waiting for them to confirm which day. She said there would be nothing to see yet i think im just over 5 weeks im just pretending its not happening yet!! X

navis176 Fri 21-Dec-12 11:38:11

Hi! Can I join you?
My history is 3 mmc in 2009 and a further 1 in 2012. All developed only to 6-7 weeks, discovered sometime between 8-12 weeks, all followed by ERPC. I had recurrent mc investigations carried out in 2010 by a non-specialist hospital. I’d decided to give up on the whole baby idea but now with a new partner we’ve decided to give it another go…
At the moment I am trying to track down what tests I had in 2010 (I’ve moved areas) – they found that I have a balanced translocation but it is not certain that this is the sole cause of my mc (no genetic defect has ever been found in any of the embryos). So I want to make sure that all other tests are clear before going down the pre-implantation genetic diagnosis IVF route.
I’m requesting a referral to St Mary’s – but know that they do not test for NK cells. In your opinions, is this test worth paying for privately? Is there a successful treatment? Would you recommend Mr Shehata? How much does the test (and possible treatment) cost with him – all I can see on the website is the initial consultation fee of £250. How about Mr Gazvani? His website says they are the only clinic to test specifically for uterine NK cells – but Mr Shehata’s website says this is not important and general blood NK cells is enough to make a diagnosis – in your opinions which is the better test?

butterfly - congrats!!

iloveblue Fri 21-Dec-12 12:23:07

Congratulations butterfly - thats great news. Weekly scans sound great.

Hi navis sorry to hear you've been going through this too. sad
Regarding the nk cells, Professor Quenby and Professor Brosens at Coventry hospital also do the uterine NK biospy. It costs £360, which includes the procedure, scan and follow up consultation (usually a phone-call). I saw them in the summer and they are great. They are technically NHS but do the test as an extra to help women with RMC and to aid their research. All treatment once pregnant is free.
I've also heard good things about Mr S and have a few friends who have had a baby/are pregnant under his care. However, he is quite expensive and the fees really stack up. I think you can be referred to see him on the NHS too but it takes a while to get an appointment.
I've never heard of Mr Gazvani - so can't comment on him, but he is wrong in saying he has the only clinic to test for uNk cells.
Hope this helps x

school how are you feeling? Great to hear you got your 2-3 weeks.

pebs so glad all is going well. 24 weeks is a great milestone to reach.

tea I'm exactly the same in that I relate every twinge/pain back to a possible cause for miscarriages. I did get a bit ridiculous at one point and was keeping what my DH called a 'pain diary'. I have been better since finding out about the high NK cells. I think its just the not knowing whats wrong thats so hard to accept.
I agree with school that I've never heard of any problem that would cause miscarriages and a development delay. I think at 2 years old there is such a wide range in where kids should be - maybe your DD is like you say just very laid back. I can understand your concerns though - I hope the GP is helpful and reassuring. xx

I've had the doppler out a few times and found the heartbeat quite easily, which does help. I'm tempted to try again today but worried in case i don't find it and will be worrying all over Christmas.
I'm 13 weeks tomorrow - am off the steroids now and just on the progesterone and Clexane. Still feeling quite naseous and very tired which is reassuring. Next scan is on the 28th, when I will be 13+6. Last baby died between 13 and 14 weeks, so that will be a nerve-wracking appointment confused

Anyway, hope everyone has a lovely Christmas and heres hoping 2013 brings us all lots of good luck xxx

navis176 Sun 23-Dec-12 13:16:25

iloveblue - thanks for the info - Coventry might be a bit far, but that sounds reasonable - curse london prices!! Gives me some more stuff to google over xmas smile

teaandchocolate Sun 23-Dec-12 19:16:22

Hi iloveblue thank you for your kind words and reassurance. The GP was ok about DD and is writing to a developmental team to see if she needs to be referred. I think she is just laid back and she is progressing all the time so hope I'm just paranoid. It's a bit ridiculous but the mc have made me totally paranoid and always fearing the worst. It just makes me lose faith in everything being ok because I've learnt that things are not always ok. I really hope everything goes well on the 28th. I will be thinking about you and keeping everything crossed although it sounds very positive so far and you're obviously getting looked after really well. I just know how stressful it is during this time!!

Navies hi and welcome! So sorry to hear about your mc. I've had similar dilemmas in not knowing who to see for testing. I decided not to have nk cells tested yet - will wait and see if I have another mc as my history doesn't seem to 'fit' with having high nk cells (so I've been told). However I saw a specialist in Sheffield (not sure where you are based?) who did offer uterine nk cell testing and wasn't ridiculously expensive. I can't remember offhand how much though I'm afraid. However all these specialists seem to have clear pricing structures so you can call their secretaries and find out details of the pricing before you start. If I have more mc and go for further tests I would probably go to Mr shehata although it is a long way for me. Or I've heard people going to st Mary's and Mr S to cover all clotting issues and nk cells. I had my clotting tests done on the nhs. I found it so frustrating that there's no 'one stop shop' for testing and everyone does different things.

Sorry not to be very helpful - hopefully some of the others who've seen different specialists will come along soon. I actually did find old threads discussing costs of tests so its worth doing a search.

Butterfly I hope you manage to have a good Christmas and new year and can relax waiting for your scan. Just remember there's nothing more you can do for now apart from looking after yourself.

butterfly86 Sun 23-Dec-12 20:54:14

Hi navis sorry for your losses i cant help with your questions but didnt want to ignore your post! Hope you get sorted soon.

Iloveblue- hope everything goes well for you at your scan its awful going for them appointments isnt it its so stressful everyone else is so excited to go in for their scan when all you want to do is run away!

Tea- I'm trying my best to relax and think what will be will be but its so hard my scan is on 4th of jan so hopefully christmas will take my mind off things a bit and it will be here before i know it. I just expect to go for scan and as usual be told its all gone wrong, cant ever imagine them saying theres your baby with a heartbeat. The consultant did say 3 mmc in a row is rare so i will just hang on to that....

butterfly86 Wed 26-Dec-12 14:07:59

Well i've had another mc at christmas of all times, not feeling too bad at the moment i think maybe because its over before it even begun its still a disappoinment though. Hopefully my consultant can do some more tests now its happened 3 times. Ive been sat in a&e all morning and had my beta hcg checked which was right down the doctor questioned the accuracy of my pg tests but 5 cant be wrong including a clearblue digital its obviously just never got started properly x

navis176 Wed 26-Dec-12 19:10:19

butterfly - I'm really sorry to hear your bad news - my thoughts are with you sad

teaandchocolate Wed 26-Dec-12 23:10:34

Oh Butterfly I'm so sorry. You sound like you're doing really well but must be so hard especially at Christmas. Hope you're ok and have some support in RL. Look after yourself.

orangebowl Thu 27-Dec-12 22:03:33

Really sorry butterfly sad I know from experience nothing anyone says makes it better. Like you say.. On with the testing.

I've got my scan tomorrow. Should be 6 weeks.. We will see.

Sorry I've been off the radar. Sort of just been trying to ignore and not think about the pregnancy. Like if I dot think about it it's not real so not upsetting if/when it goes wrong. I know- I'm bonkers!

Xxx

teaandchocolate Fri 28-Dec-12 12:59:12

Hi school. Not sure what time you scan is today but hope it goes well. Crossing everything for you. I know what you mean about trying not to think about it all - it's the best way I think. I've been trying to not to dwell too much on the mc recently although now that we are ttc again I probably won't be able to avoid it for long! Let us know how you get on

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