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.

iggi keeping everything crossed for you!
milkyways thanks for this. Consultant did mention Promise trial but said he thinks in my case I will need to take progesterone from 2DPO whereas the trial is from BFP. Will see what he comes with!

26 weeks, wow!

Have my letter through from Raj Rai so will get on and book all the blood tests as well as the pelvic scan.
DH also being tested (chromosones), he is a complete wuss about blood so that should be amusing!

Feeling really positive as we are actually doing something

Yes iggi it really does feel real now....I'm feeling kicks and rolls everyday, and it's almost surreal. I can't believe this time 2 years ago I had my first mc...it's been such a long and heartbreaking journey but hopefully all this badluck is over with now, and I will be holding my little miracle baby at the start of the new year!

farfalla I am glad you have got the ball rolling with the testing, it's definitely at least a step forward towards the light at the end of the tunnel. Good luck!

I feel like a pin cushion! 9 vials of blood this morning and going into St Mary's for the TEG test on Thursday.

hope they find something for you. when do you get the results?

I have an appointment booked for the 3rd november.

I am sort of hoping they find something (but that its something really simple to fix)

If it is hormonal I think it can be harder to sort out (and that is my suspicion).

I have read Lesley Regan's book and it seems very negative on progesterone use. However, it was published in 97 and I wonder if they have changed they mind. I am seeing Raj Rai (also at St mary's) and he seems to now use progesterone. Will see what he says! I am hoping to have an action plan by then as we go on holiday on the 16th Nov and the timing would be perfect for us to start TTC again :)

Just back from St Mary's where I had the TEG and anti phos something done.
They are just so nice in there aren't they?

Had a little look at their 'baby wall' on the way out and I must admit I had a real lump in my throat. Such gorgeous babies, it made me really hopeful that we will get there one day too!

Roll on the 3rd.

How is everyone else doing?

Hi farfalla you are in the right place at St. Mary's. I have been there for my treatment and am 17 weeks pregnant now. I can scarcely believe it myself. I never thought that I'd get this far. Don't be worried if the results don't turn up anything now from the tests. They found that my MA levels were high in the TEG test when I was pregnant.

Like you, I wanted an answer, to know what happened to cause me to miscarry repeatedly. I didn't think I would ever have the answer when my tests came back clear. I opted to go on the PROMISE trial because I felt that I had to try something different this time. I insisted on having my early scans at St. Mary's and made sure to get the TEG tested again in pg, and lo and behold, I had my answer.

It is a scary time, but they are fabulous there and I credit them with having me get this far in my pregnancy. Good luck!

LAF Just seen your post and wanted to say congratulations on getting to 17 weeks. It must feel so unreal to you, but a fantastic feeling nonetheless. so happy for you :) :) xx

Wow, LAF, that's great news. Good for you!

Oh LAF huge congratulations I am so pleased for you.

That is very interesting about the TEG changing during pregnancy, will make a note of that. Do you know if you received the progesterone or the 'placebo' or is there not a placebo option?

Thanks kittens coconuts and farfalla I'm not sure if it has really sunk in yet. I was getting excited about looking at baby things yesterday online, but I always feel like I have to be cautious and not get too far ahead of myself. Maybe after the 20 week scan, I'll start to believe a bit more.

farfalla I don't know if I was on the placebo or progesterone. I don't think I will know that for 2 years until the trial is concluded. Reading between the lines, I don't think it is exceptionally common for TEG results to change in pregnancy. I think more often than not, the results will come out in a non-pg state, but it can happen that there is a change in pg. It is worth carrying on at St. Mary's for observation in the early stages, if you can make the journey regularly.

Keep us posted!

iggi hope you are OK, as I haven't seen you lately. Thinking of you too pebs

Hi Laff, just logged on and saw your good news - that's really brilliant. Hoping the next 17 weeks pass more quickly for you!
I am still ok, I wake every morning fantasising about the next scan and getting bad news - but none so far. Just 7+3 though, but if my scan at 8 1/2 is good, that'll be further than the last 4 pgs.

Thanks Laf , your scan picture is beautiful by the way.

I am dreaming of seeing a flickering heartbeat at a scan one day, have never made it that far!

iggi FX for you next week

17 weeks????

that has flown by! i bet it doesn't feel like that for you though LAF.

i have started taking my high dose folic acid and have been going to accupuncture to try and regulate my cycle. i am on cd 20 today and still not seen the temp shift.

i did have some ewcm yesterday and stomach cramps that were like period pains - never had that before mid cycle.

Morning everyone, have just received a copy of some of the results.
My appointment is not until 3rd november and still awaiting a few other tests but in the meantime:

Factor V Leiden: negative
Factor II nEGATIVE
MTHFR : Positive, C677T Heterozygote (I think that means just one gene affected not both)

Thyroid profile

TSH 2.72 (this has improved since then last test of 3.7, is that possible?)
Free Thyroxine 13.6
Free T3 4

So looks like my thyroid is normalish.
From doctor google is looks like some people are treated with high dose folic acid, aspirin and some with heparin for the MTHFR?

i am taking high dose folic acid. my consultant said it's a good idea to take it for a couple of months before ttc. i have been taking mine for a couple of weeks now.

i am also going to be having asprin and heparin next time as well.

my bloods came back normal i think but i have blood clots in the placenta so they recommended this treatment.

Hello peeps!

Has anyone who has had a successful pregnancy used progesterone? I have been prescribed it to be used from a BFP, but reading Lesley Regan's book she does not seem convinced of its benefits and believed that for it to work you need to take it from ovulation. Does anyone know when is best? I have got a prescription so I guess I can take it whenever.

I am TTC again and scared stupid. Month 2 of clomid this month.

One of my really good mates put a scan pic up on facebook today and I was once more choked! I did know about it, she didn't tell me straight away as she knew it would upset me, it didn't but seeing the pic did. Why does life seem so unfair sometimes?

Confu3ed I see Dr Shehata and he prescribed me progesterone from a bfp. I believe LR has changed her views a bit on whether it can help - I've heard others on here talking about a progesterone trial running out of St Marys, so they must be looking into it.

Thanks iggi, will keep them until a BFP then. I am also taking Magnesium ,selenium high strength folic acid and low does asprin post ovulation. Fingers crossed it all works!

Snap, I take all that too!
And (let me think) omega 3, vitamin D3 and a pregnacare! I really do rattle.

Hi pebs that is interesting, do you take it on prescription?

confused I think St Mary's are changing their mind about progesterone, that book was written in 1997. Their objection was that there was not sufficient evidence because all the trials to date had involved a very small number of women, around 20 in some cases. They are very evidence based and conservative hence the trial which is massive.

I see Raj Rai who is one of the consultants at St marys. I am still undergoing tests but in my case he thinks I will need progesterone from ovulation (well 3 days post) but that is because I have spotting issues and have very early MC at 5ish weeks and low progesterone on blood tests!

Are you seeing a consultant, I assume you are if you are on clomid? I am sure they can advise on what is best given your particular circumstances?

I can sympathise with the facebook thing, I rarely go on it these days for the same reason!

I take those too iggi, rattle everywhere I go!

Farfallarocks thanks for the info, interesting that you take it post ovulation, does that mean that you are having tests to show when you ov?
I am not under a consultant at the moment, my GP is prescribing the CLomid and the RMC that did my tests asked him to prescribe progesterone when get a BFP. I did think that may be too late though. I have the prescriptin now so may start it on day 21 anyway and just pray I am pg as no idea what the side effects are if I am not.

Facebook sucks for that, yet another one yesterday!!!

far i do take my folic acid on prescription. don't think you can get it any other way (unless you take 12 normal folic acid tablets per day!!).

i also got my baby asprin on prescription and as the consultant gave me my prescription for folic acid on the same prescription i had to get it from the hospital pharmacy and paid £7.50 for 28 asprins grrrrr!! will make sure they don't put them on the same prescription on future. i can probably buy them for a few pence in boots!

If you take progesterone, afaik it will stop your period coming? As progesterone drops naturally in the second half of your cycle unless you are pg. So that's the only side effect I can think of, you'd have to rely on poas rather than waiting for af.