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

999 replies

LAF77 · 02/05/2011 09:23

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.

OP posts:
Dunnitt · 30/01/2012 14:14

I've added myself to the list:

PREGNANT

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.

LAF77 , Age 34, 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, Confirmed high MA levels in TEG, on 150mg daily, also was on PROMISE trial. EDD 21st March 2011

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.

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.

KNITTERNOTTWITTER - Age 34 (DH age 41) DS1 born Aug 2008 (natural conception, easy, happy pregnancy, natural birth 10lb 6oz!) Loss 1: MC1 19 March 2010 - ruptured ectopic and left tube removed. Loss 2: MC2 22 July 2010 - Foetus seen at 5 weeks and HB at 7 weeks, no HB on spotting at 12 weeks, 8 weeks sized foetus found... ERPC 26 July 2010. Loss 3: April 2011 TOP - HB seen at 6 weeks and 9 weeks, large Nuchal measurement and bad bloods at 12 week scan - CVS - confirmed T21 and hydrops, no chromozonal translocation - removed by ERPC 15 April 2011 . Currently TTC and because of the three losses have been referred to St Georges, Tooting, Repeat Miscarriage Clinic - my first appointment is on the 9th of June...

IGGI - Age 41, 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. Tests with Mr Shehata confirmed high natural killer cells - to take progesteron and steroids for this. 4th MC in May, at around 5 1/2 weeks. Waiting a month or so before trying again.

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.

DUNNITT - Age 34. 1st MMC Feb 2011, 2nd MC Sept 2011, 3rd MC (delayed) 5 weeks. With ARGC, awaiting killer cells result, on Clexane daily and Prog pessaris 3 x a day. No further tests beong done whilst pregnant.

Dunnitt · 31/01/2012 17:26

Hello everyone. I got some not so good news yesterday. My results for the Natural Killer Cells test came back and my count is 24.7% and the maximum should be 12%. So as of yesterday I am on prog injections and steriods. And today they gave me an IVIG (which took 4 hours to transfuse!) in order to try and disrupt the buggers.

My question is, has anyone else experienced high NKC counts and what is your experience?

Thanks

igggi · 31/01/2012 17:36

Hi Dunnitt, there is a thread in conception for people taking prednisilone (sp?) - several women with very high NKC results on there so might be helpful for you. I think the results are very promising, so please don't lose hope just yet!

pebspop · 16/03/2012 07:16

Not sure if anyone still posts here bit could do with some advice. I have has a scan yesterday and I was told there was no heartbeat at 8 weeks(there was at 6 weeks). They did an internal scan and found another baby in the sac which they hadn't seen on the abdo scan. It wasn't showing up on the six week scan either. I now have to wait a week fir another scan to make sure nothing is progressing before I have erpc or medically managed.

I have been taking aspirin since bfp this time due to clots in placenta last time. I was supposed to take heparin as well but I have been spotting throughout so I wasn't able to start the treatment.

Does anyone have any advise for what I can do next? I have had all nhs testing.

My three mcs have all been different the first was at 12 weeks and I was sent for a scan after bleeding. The second was mmc at 20 weeks.

freelancegirl · 23/03/2012 15:50

Hi pebs, so sorry no one has seen this until now! It seems that people no longer really post here. I hope that means that everyone is ok and has found solutions. I know that thus thread helped me get my own diagnosis and treatment and without it I might not now be 22 weeks pregnant. So, I hope youre still lurking as you probably know about tour scan now, I hope things havent been too difficult for you. I have had those inconclusive scans myself followed by the ERPC and know how hard it can be.

Having had all the Nhs tests I am assuming you haven't yet been down the nk cells testing route? I can strongly recommend it. Come over to the TTC on Prednisolone thread and ask us all any questions if you want to. The treatment is working for a lot of people who have had a lot of losses.

pebspop · 27/03/2012 07:25

Thanks for replying I had a pm after late miscarriage and they found blood clots in my placenta. I think I need to try st marys for teg test as I think this will be my issue rather than the nk cells.

I am going to arrange a private appointment with raj rai to get the ball rolling as I an not sure how long the waiting list is for st marys

batteryhen · 27/03/2012 10:32

Hi Pebs. I had 3 mmc, the latest being at 12 weeks when the baby measured 12 weeks. I am currently almost 20 weeks pregnant now.

I was referred to St Marys via the NHS, after my last mmc last year - I was referred in the september and was seen in the December. I tested positive for the TEG test. I am also factor v leiden. The treatment for TEG is double aspirin - so I now take 150mg of aspirin and also inject with clexane. In between waiting to be seen I went privately and got my Nk cells tested. They were normal, but my activation was high, so I started on low dose steroids.
I really hope you get some anwers soon. Please PM me if you want to ask any questions. xx

LAF77 · 27/03/2012 21:09

Sorry to hear about your loss pebs will they perform any karyotyping on the embryo for you? It could help you get some answers into the reasons why it happened.

OP posts:
pebspop · 28/03/2012 19:59

They are doing karyotyping for me. I had to really fight to get them to do it. The nurse at epu said she had never heard of it as the babies would be too small WTF??

I hope the results come through soon then I am going to get the referral to st marys and might go to raj rais private clinic while I am waiting

LAF77 · 29/03/2012 23:15

pebs the NHS referral to St Mary's should be quite quick, 6 weeks. I'm glad that you were able to get the karyotyping done. It may provide answers into the cause of your MC and that helps so much to get closure.

I can't say enough good things about St Marys. 2 years ago I had my first MC and now I have my son who wouldn't be here without them.

I'm happy to help where I can with my experiences, so PM me if you want.

Thinking of you.

OP posts:
igggi · 29/03/2012 23:26

Laf I didn't realise you had had your baby, many congratulations, I'm really happy for you. Just thinking back to when we were all on this thread searching for some answers. You were on the prog trial weren't you?

LAF77 · 30/03/2012 02:18

Hi iggi our son is a week old! 2 years ago, I was starting to spot, I didn't know what mc was, didn't think RMC was possible, and had no idea where to begin to get answers. I found MN and saw I wasn't alone in this journey.

Yes, I agreed to go on the PROMISE progesterone trial as my bloods came back clear when I was pregnant. I couldnt bear the thought of going about another pregnancy without trying anything different. When they ran the TEG test again on me when I was pregnant, they found I had high MA levels in pregnancy. I took 150mg of aspirin until 34 weeks as well as the progesterone until 12 weeks.

I thought that I may never have children after my third loss, but there is hope. I adore my son and I can't believe how happy he makes me, but I will never forget the ones I lost. I think that his brother and sisters will watch over him as angels until we all meet again,

OP posts:
pebspop · 30/03/2012 20:06

Contests laf. Not sure if I have said this before but I have read all the testing threads and your story was one that stood out to me. Not sure why! I am very happy for you that you have your baby finally - I hope and pray for the same outcome one day

igggi · 30/03/2012 22:13

That's lovely to hear Laf, hope you enjoy your time with the LO. What a lovely outcome!

Despite being at 31 weeks, having had 4 mcs I still can't believe that I'm going to get my 'happy ending' - I wish that for us all.

LAF77 · 31/03/2012 04:33

Thank you iggi for your kind wishes and I know the feelings that you have, worrying that it will all go wrong at the last minute. Your baby can survive outside the womb now which gave me comfort. I would still use my Doppler in late pregnancy. I had a long labour and both of us were being monitored due to PROM. They had to put little clips in his skin on his head and they did become detached a few times. I asked DH and the MWs if his heart had stopped beating because I was always expecting something to go wrong.

Thank you for your kind words pebs have you made a decision to go private with Raj or will you go on the NHS? Waiting for appointment dates is the worst. You have my utmost sympathy.

OP posts:
pebspop · 31/03/2012 09:41

I think I will go private but dh wants to wait until we see our nhs consultant before we decide anything. I am waiting for the results from last weeks erpc before I get an appointment with my consultant. I hope they get a move on!

LAF77 · 31/03/2012 10:11

So you don't have an appointment date with your NHS consultant? Where in the country are you? I take it you probably aren't in the Saint Mary's catchment area of London, but the hospital consultant can still refer you on the NHS. Don't let them fob you off on that as I have heard some consultants say that they can't.

When is your appointment to get the ERPC results? So, there were twins in the sac, is that what the scan and ERPC results were? How much aspirin were you taking, 75 or 150 mg? As far as I knew, you could take clexane from BFP, even if you were spotting, but I can't be sure. as I never had to take it.

OP posts:
pebspop · 02/04/2012 09:08

i have not got a date for the nhs consultant yet as they are waiting for the results from the erpc to come back first. i will give the epu a ring later this week to find out what is going on. i won't be letting them fob me off - i have already heard of people having a bit of hassle so i am ready for it!

they saw the twins on the scan, one had a heartbeat at 6 weeks but neither did at 8 weeks. one was much smaller than the other as well so i am not sure if that one ever had a heartbeat.

i was taking 75mg of asprin from bfp and the consultant said i couldn't have heparin whilst i was spotting.

LAF77 · 02/04/2012 12:17

I'm no exert pebs but with the issues that you had with a late loss and the clots that were found in the placenta, 75mg of aspirin wouldn't have been able to resolve the clotting issues. St. Mary's would give you 150mg of aspirin as a minimum dose if clotting issues were found in the TEG.

From what I remember, you didn't actually get a diagnosis of APA, but it was inferred through the results of examining the late loss.

Keep fighting, good luck!

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pebspop · 02/04/2012 15:19

i am not really sure laf. i got further in pregnancies when i took no asprin.

the twins things might have caused a few complications in this pg.

i really want to have the TEG test as i have a feeling it will show something up for me.

Ju1es22 · 06/04/2012 09:14

I haven't posted or checked on here for ages! Congratulations on your much awaited son laf:-)

I just wanted to thank those that gave me advise last year, I now find myself 18 weeks pregnant after 5 rmcs in 3 years. Didn't have chance to have the hyperoscopy i was booked in for before getting caught (total surprise this time) but I am taking 75mg aspirin and 5mg folic acid until 35 weeks which so far seems to be working, its not been easy had a lot of scares already and off the hospital for another checkin at 11:00 but as long as we have a healthy baby in the end all the tears will be worth it!

Take care everyone and good luck for those who are awaiting or undergoing treatment xx

LAF77 · 06/04/2012 12:37

C

OP posts:
LAF77 · 06/04/2012 12:41

Congrats on your pg jules it sounds like you are making good progress. How's it going pebs do you have an appt date yet?

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mrsnesbit · 06/04/2012 19:39

Hi ladies.
Well, i survived my little caravan break, twas lush.
Minimal brown discharge continues till yesterday when it turned into frank red blood, today its back to the brown stuff...very very small amount (not that that means owt of course)

Scan next Wednesday morning.

Was convinced i would mc last wekeend, and weekend before that but this is dragging out.
Ive managed to secretly ring in sick to a trusted colleague and have asked her to not tell anyone why i am off sick, because i cant help it...i feel embarrassed and ashamed. Sad

It will be 8 weeks tomorrow since my lmp, but 6 weeks since conception, so i am going with that dating..6 weeks tomorrow. I will be (if i make it) 6+4 at the time of scan....if there is anything there, it will show at 6 weeks surely.

Anyhow, i HATE HATE this not knowing and i know that they will send me away for another week on wednesday.

Hope everyone else is ok x

farfallarocks · 10/04/2012 16:36

laf huge congrats on your son, you have been a source of much support and advice not just to me I am sure, but to many, so pleased you got your happy ending!

I am currently 10 weeks and on clexane and progesterone under Mr Rai, keeping all crossed that I get my take home baby!

pebs we have met on the other MC thread but just to confirm I was told to take clexane from BFP and I spotted a bit at the beginning. Mr Rai said to carry on and that clexane helps with implantation, its a preventitive dose (it stops clots forming) rather than being a blood thinner like aspirin. Best of luck whatever you decide.