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.

I have an appointment with my local consultant at the end of April and I have booked a private appointment with raj rai for mid may.

I will be having a consultation with him at Harley street then going over to st marys for teg and any other tests I might need that can't be done at Harley st.

I needed to arrange all this for the same day as I will be coming down from Lancashire and it's a bit of a pain (not to mention a fortune in train fares) to keep coming down. I think if I think if I would have just turned up for the consultation I would have had to come back another time for the teg.

I am going to ask my consultant to refer me to st marys via nhs as well but I am keen to get the ball rolling so private seemed like the best route.

I am hoping it doesn't cost more than £1000 for the tests. I have already had a load of tests on nhs so I shouldn't need the full range doing again privatley,

The letter says I need to take my medical records. Does anyone know how I do this? Where do I get them from?

Pebs when I went to see Mr Shehata for tests, I didn't have to pay for the ones I'd already had done on NHS. I took copies of all test results with me. I asked both GP and the secretary of the hosp consultant who did my tests for a copy of the results. At first they gave me the standard letters ("your results are clear" type thing) which is no good. You need copies of the lab reports which will be a table with lots of numbers on it basically! Hope it goes well.

i have got copies of my results so i will dig them out to check it's got all the details on.

hopefully i can keep the costs down as i have had loads of tests already

pebs I think it would be useful to have a page with a history of your losses, the month year, and how many weeks at each loss, you will be asked for this and it is good to have it to hand.

Also, if you think of questions, write them down, as I would always forget to ask something when I was there.

Good luck and let us know how you get on!

I will dig out my test results and get my history written down. I hate going through it so it will help to hAve it all written down

How are you pebs

hi laf
thanks for asking!

i went to see raj rai last week and he advised us to get dh tested for blood clotting (factor V etc). i haven't heard of dh's having this test before but he said as the placenta is made up of 50% dh 50% me he might have it and be passing it on. i think it's unlikely though but it's good to cover all bases.

he gave me the teg test which i am now awaiting the results and he tested for antiphospholipids again.

it was much cheaper than i thought as i had already had most tests so he didn't need to repeat.

he recommended that i have a hysteroscopy as i have had a few erpcs now to check everything is ok in my womb.

i am ringing my local consultant today to get reffered to liverpool womens rmc. it is more convenient for me to get to liverpool than london. they should be able to do the hysteroscopy and test dh.

it's just a waiting game now. hope my appointment comes through soon as all the waiting drives me mad. i really wanted to ttc now but i need to wait for these extra tests as i wouldn't forgive myself if i rushed in and it all went wrong again.

raj rai advised me not to get pg before i have been seen by liverpool.

i would go back and see raj in the future if i needed anything as he was so nice and positive.

Do you have your appointment yet, pebs? I've never heard of the man being tested for clotting, very interesting!

no appointment yet. my consultant rang me yesterday to say she was sending the letter to liverpool so i will ring liverpool next week to get them to hurry up.

i haven't heard of testing the man either. i will ask them to do it at liverpool. i don't think there is anything pointing towards my dh having blood clotting so it's a bit strange.

i rang liverpool to chat to the private clinic and they had appointments available mid june. i will wait and see when my nhs appointment is but if it's too long to wait i will book in private.

all the waiting is really hard.

how is your baby?

Hey everyone. I'd like to join you... Well "like" perhaps not the right word, not sure any of us would exactly choose to be on this board, but hey. First of all, I'm just catching up to the thread and I'm overwhelmed with all your amazing stories. I'm so sorry to read them all, what horrible things you've all been through.

I'm in the middle of my second MC. I'm 40 and have a two year old DS, who is the undisputed love of my life. I haven't read Dr Lesley Regan's book yet, but I will. I'm feeling a bit ignorant about all this at the moment really. Last MS was just two days ago and was referred for tests at my EPU in 6 weeks time. Not sure whether to TTC in the meantime (only two MC - could still be bad luck) or to seek private help. I've contacted Dr Rai's secretary, and she can fit me in in 3 weeks time which would be wonderful, but that would be around £2,000 as opposed to getting free treatment on the NHS / trying again anyway. I'm also not based in Sussex so getting childcare and travelling into London for the appointments and tests is also a bit of a challenge.

I'm not sure what you'd advise, having been through this before? I'm cracking on a bit now and I don't really want to leave TTC too much longer...

Hi no clue.

Nice to have a bit of company on here!

I have read through all of these threads- took me ages but it is so nice to see how many of the gang have had successful pg.

It's tricky to know what to do isn't it? I am currently waiting for refferal to Liverpool rmc. I really wanted to try again after my third mc in march but I should wait for the tests. It's bloody hard though.

I have had all the blood tests and nothing showed up. I went to see raj rai a couple of weeks ago and he did another blood test called teg which looks for clotting. After a late mc last year, blood clots were found in the placenta so j think I have a blood clotting problem.

I am waiting for a hysteroscopy to see ic there is anything wrong with my womb.

How about ttc while you are waiting for your refferal then you are killing two birds with one stone. If you don't get pg you can have tests and if you do you will at least be on the list for if it's goes wrong again.

That was my plan bug after seeing raj rai he told me to wait for test before ttc. I think that is the sensible option but we aren't always sensible in these situations!

I am 32 so not feeling the clock ticking too loudly yet! Getting there though!

Hello pebs. Funny that you're going for Dr Rai as well, how did you find him? Do you think it's worth paying to see him (instead of the standard NHS tests I mean?). If I wait 6 weeks I can get at least the basic tests done, for free... it's tempting to just go for that option then keep Dr Rai in the back pocket for next time (crosses all fingers, all toes, shudders at thought..).

It's hard to know what to do next. Good luck with your tests - it would be great to find a simple solution wouldn't it? If you could be treated for something that would be amazing.

i was supposed to be taking aspirin and heparin injections in the last pg for the clotting. i took the aspirin but i was spotting and they wouldn't give me the injections. the last pg was identical twins though so i think they are high risk any way so maybe that one was a bad luck thing - i had them genetically tested and the result came back normal but female which means they could have tested my genes rather than the babies. if they come back male you know it's definatly the baby.

i think everyone goes to raj rai at some point! i only saw him once as i live in lancashire and it's hard work for me to get down there all the time. he is really nice and positive. i may go and see him again another time if i need a boost!

i am thinking of going private in liverpool if my apoointment is too far in the future. i will be prepared to wait until mid july any later and i will book in private. i don't really mind about the cost as every month that goes by is another month working full time and not on mat pay/part time hours so i can afford it.

Hi ladies,
Was wondering if I could join you too?
Just had an erpc yesterday for 3rd mmc in 10 months. Testing will now take place and I have a follow up appointment on 18th July. Im 34 and have a beautiful ds who is 3, had a - blissfully unaware of the horrors - normal pregnancy.
I feel ok, no pain but a few tears as I started reading this thread from the start - I will read them when Im feeling less fragile as I want to hear all your experiences, good and bad x
I plan to get wasted a little drunk tonight then start getting fit again and cutting out the daily chocolate bars.
I think I feel ok this time as I know Ill be looked at so Im feeling quite positive but waiting for the hormone crash anytime now.
Ox

hi ostrich

being a bit selfish but glad to see some new faces on here - it's been a bit lonely!

sorry to hear you have been through three mc's but glad you are getting testing.

my story is a couple of posts back.

just waiting for a referral to liverpool rmc at the moment.

Its taking me ages but Im finding it very reassuring that I know Laf has a beautiful baby boy - congratulations Laf x
Pebs - do you have a hysteroscopy booked?
I ordered the 2 books suggested on here as Im clueless so hopefully Ill understand what you're talking about!

It does seem so hopeless as you go through RMC
pebs and ostritch I don't know how I coped TBH. I am besotted with DS, who is a dream baby, so happy and loving. Seeing him smile melts my heart. I know he wouldn't be here without the support from the experts. It makes me sad for my other losses as I never got to know those babies. However, he probably wouldn't be here if any of the others made it.

Keep posting and sharing to give hope to those lurkers. I will be rooting for you both.

Hello

Thought I might come along and join in on here too if thats okay.
I've 'met' pebspop before, hi to ostrich and noclue, and congratulations LAF on your new DS.

I have two lovely boys aged 5 and 7 - had no problems with either pregnancy. Problems started in Oct 2010 when we lost a little boy at 20 wks (he passed away at 17wks). Post mortem and all tests came back clear and we were told it was a one-off.
In 2011 I then went on to have two early mc's - one at 7/8 wks and one at 9/10 weeks. I had virtually no symptoms with either of them, never saw a HB with the 9 wk one and although I had no scans with the 7 wk one I'm sure we wouldn't have seen anything then either. We were then referred to our local RMC where we had some more tests that again were all normal. Were told to take low dose aspirin and try again.
Fast forward to this year. I became pregnant again in February (I have always fallen pregnant very easily - which I am very thankful for) taking the aspirin, had 3 great scans and all was looking good, until a scan at 15 wks showed the baby had died about a week before. Devastated is not the word
So, I will be seeing my local consultant (who is not a recurrent mc specialist) regarding our most recent lost at the end of July. Had the same set of tests done again although I'm expecting them to be normal again.

I'm at a bit of a loss at the moment as to what to do next.
I'm convinced that the aspirin was helping last time as I got so much further and that I have an underlying blood clotting disorder. I'm trying to get some more detailed clotting tests done - like Factor V Leiden, as I've never been tested for this before, but this is proving difficult.
I think I will push for a referral somewhere but I don't know where. Possibly to see Mr Shehata as I know he does the Nk cells test.

Anyway, it does help to write it all down, but I'm just so fed up of thinking about it all. I'm back to work on Tuesday (I'm a teacher) after having 4 weeks off since my most recent loss.

Oh Blue what a heartbreaking story. I wish I had some advice, but I haven't. I'm so sorry you've gone through all that. We're just waiting for testing after the most recent MC, starting the process. Have you thought about vitamin D? I know it sounds probably sounds a bit weird but I'm not convinced it didn't have a role to play in our recent sadness. No idea how you get tested though. Am spending as much time as possible in the sun, just in case...

hope work was ok blue

i might try the vitamin d but i am not sure whether to be tested for a deficiency first or just start taking the tablets?

my referral letter still hasn't been sent to liverpool and they said it will be 6 weeks for an appointment once they get the letter. i have now booked a private appt at liverpool in a couple of weeks to get the ball rolling.

ostrich i don't have the hysteroscopy booked. i am hoping they can get it booked when i go for the private appt.

Work was fine thanks pebspop - off again now for a week as half term, so good timing really.

I had an email earlier in the week from Professor Quenby who I will be going to see (in Coventry) to have a uterine biopsy to check for NK cells. She said she will do the other blood clotting tests for me at the same time, including Factor V Leiden, which is good news. I just need my body to get back to normal and ovulate now. The nk cells test has to be done 7-10 days after ovulation.

pebs and noclueI was tested quite recently for Vit D deficiency and mine was slightly low, but I was told it wasn't low enough to have caused my mc's. Apparently it is fairly normal for people in this country to be low due to the lack of sunlight, so might be worth taking the pills anyway.

Hi all,

Blue hoping you ovulate soon and that you get some answers x

Pebs sorry, I read your posts properly since and realised you are still waiting.

I feel like I'm back to normal, apart from an extra 1/2 a stone, and wanting very much to jump on my db! But knowing we have to be careful is really hard - we've been together a long time so never had to use anything AND it's so frustrating as I want to be pregnant but I realise the best thing to do is wait for the test results. Booo.

Hope you're all enjoying your long Jubilee weekends x

Morning all
Is there room for me? Was in the metalling thread but following mmc 25th may and erpc dosent feel right there anymore ... Hi to all those familiar names ....

Had 3 mc now so awaiting further tests .... Been told not to get bfp or ttc til we have had the tests and I'm finding this hard....

Quick question if I may .... Im still getting bfp 2 weeks post erpc I know this is quite normal and I'm not too concerned at this but my question is can I still fall pg / ovulate with Hcg in my system? and possibly fall pg again. I know im in the wtf stage and also the theories if being extra fertile post mc but need to avoidibg fallibg again before iur consultant appt. but i so I do want to connect intimately with my dh again but hate using condoms and wondered if whilst I'm still getting very upsetting bfps could I try and look at this a little window of opportunity for unprotected fun as I really don't want to fall again before our rmc tests begin ....

Hope that makes sense and one of u lovely ladies may have some advice x

hi mumtum

i am in a similar position to you. i have had most tests already but am waiting for some kind of op to see if my womb is ok. incase i have scar tissue or a heart shaped womb etc.

i am using condoms and it is really hard to have to wait to ttc. personnally i wouldn't risk having unprotected sex as i really want everything ruling out/fixing before i get pg again and i would be risking another mc if i got pg again. in the wtf cycle anything can happen so i wouldn't put it past our bodies to be able to get pg with the hcg still in there.

i would love to get pg again and not have this op etc but i can't do it.

saying that, lots of people do get pg before the tests but if you have something wrong with you it will need fixing before you have a good chance of a succesful pg. my consultant did say if i do get pg i can try the blood thinning stuff again but i am going to wait - it's worrying enough for me without thinking what if something is wrong and i didn't get tested?!

i am really annoyed though as last year i took a 6 month break from ttc as i had a late mc and it was all a bit much for me to try again. i could have had this op then but my consultant said i didn't need to be refferred to rmc where they would have done it. grrrr.

Hey pebs thank u I know what your saying makes sense but we got Erm carried away last night despite buying the condoms we didn't get to use them poas this morning and today it's negative !!! So finally old hcg out of system So Now worrying about in case i fall pregnant never thought I'd get to that point ! will be good and use protection in future ( in our defence we r newlyweds only got married 30th June so have had a rollar coaster of a start to married life as fell preg on honeymoon!)
My appt is 3 rd July but I've received a load of blood tests form I have to have done between days 2-6 of my first period post mc.

Is it weird that following my erpc I've had no follow up appointment or anything they just sent me home with a leaflet explains about infection symptoms and washed their hands of me ????

When's ur appt pebs and what testing have u had so far I've got no idea what to expect x