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.

[Havingkittens]

Good luck Confu3ed. The low dose is baby asprin, 75mg. Make sure you get the coated one to reduce aggravation to your stomach. Although even the coated ones are giving me gyp, but then I suffer from reflux anyway.

Also, I have been putting off calling a friend of mine for months because she's a bit self absorbed and I had a feeling that she would spend most of the call either banging on about how dull her life is looking after 2 young children or telling me how funny and cute and amazing they are, or telling me how her figure is shit since having them. She came up on Skype earlier and I thought I'd give her the benefit of the doubt. Let's just say, she didn't pleasantly surprise me by proving me wrong! She does know about all 6 of my lost pregnancies too. Just as well there was a problem with the video connection and she couldn't see me rolling my eyes. On the up side, just as I was wondering how I could wind up the conversation and get off the call the connection was lost and we got cut off! Phew!

Last week I finally got around to seeing one of my oldest friends' 10 week old baby, and yesterday I got a text saying that the other friend from our group of 3 of us just had a baby girl. Back in November we were all pregnant together. We've been friends for over 20 years, all learned to ride motorbikes together and passed our tests all within the same year when we were 18/19. It was a sort of coming of age thing that we all did together so all 3 of us having our babies together in the same year seemed to be quite poignant. They have theirs, and I'm still waiting, hoping, doubting.....

Probably not the best time to Skype the other friend really.

[confu3ed]

Hi Iggi and thanks for the info, so do you take it now or when you get a bfp?

One word, terrified! But tests are all ok and tge Nhs won't do any more until I miscarry again so I guess it's time to try again. The clomid makes me pretty hormonal too hot flush city but if it works then I guess it's worth it!

[confu3ed]

Thanks havingKittens

It really sucks when people are so insensitive and great u lost connection, maybe the pc got bored of hearing her too!

I am dreading the birth of my sisters baby and know I am going to find it really hard, seeing her pg is bad enough. It's really hard but if tgey are great friends, then explain how you are feeling, I did it with a good friend of time when I miscarried a couple of years ago and she is now so empathetic, its made our friendship stronger than ever.

[Havingkittens]

Those two friends are both very sensitive and sympathetic to my situation, I'm pleased to say. The one who had her baby in February just told me that she would love to see me but that she understood if I wasn't ready and that I should only come when I felt comfortable about seeing them. She was also really empathetic as she had been trying for a good few years and had had IVF in the end. There had been lots of times whilst other friends of ours were having babies that we commiserated with one another and empathised about feeling jealous and left out.

[igggi]

HK I'm seeing a friend with a baby tomorrow, will practise my stiff upper lip in the car on the way there.
DS tonight told me he wants a baby Of course he doesn't really, no way he would want to share! For me it is people having their second child (because of course, everyone has two) that affect me the most. First ones and third ones are ok!
Confu3ed my local RMC told me to take it at bfp. Mr S has told me to take it now, so have just started doing that. Didn't know about coating, that's interesting.

[igggi]

Lunatic that must be a good feeling!
I think I am close to being done, but in the other way - can't take this just going on and on..
Regarding the aspirin, I never took it at all till it was prescribed, I am assuming dr S thinks I should take it now based on my own test results (stopping implantation would be counterproductive for him!)
I wouldn't take it at all if not told to by a doc (unlike the array of vitamins I consume)

[igggi]

Lunatic that must be a good feeling!
I think I am close to being done, but in the other way - can't take this just going on and on..
Regarding the aspirin, I never took it at all till it was prescribed, I am assuming dr S thinks I should take it now based on my own test results (stopping implantation would be counterproductive for him!)
I wouldn't take it at all if not told to by a doc (unlike the array of vitamins I consume)

[milkyway07]

Hi everyone - I think confused asked about the progesterone - apparantly there are two forms of progesterone - one is synthetic and one is natural. Pharmaceutical companies created the synthetic one so they could patent its formation . Anyway, it is the synthetic one that has been known to have bad side effects. Pregnant women are prescribed natural progesterone pessaries - and it is really important they are prescribed the natural form. I don't really know anymore than that, but my consultant wasn't too keen on prescribing me progesterone either. I think it is like Lesley Regan says in her book, if a pregnancy is going to fail anyway, it will fail when you stop taking the progesterone, so it is like stopping the miscarriage from occurring (morbid I know).

I was told to take aspirin from the first positive test, and I was prescribed it by the doctor but you can get the same thing from boots for about £2.

Nothing much going on with me - don't have any strong symptoms again. Have my scan booked for 7 weeks. Not too hopeful that I will make it to then. At least I know if things don't work out I will be going for medical management again. Also, the UK is in short supply of high dose vitamin D. My pharmacy has been trying to source it for about a week now to no avail, which is a bit crap.

Hope everyone is doing ok.

[luckyfor2]

milky don't worry about symptoms I didn't start feeling anything until I was 6 weeks when I started feeling tired and didn't start feeling sick until 7. Can't believe they can't get hold of VD. That is just rubbish!

I think progesterone is looked at differently by different consultants, like you say Lesley Regan thinks it doesn't help but other consultants do which is why they are running the PROMISE trial to try and establish whether it does help or not. I'm on on the trial because I'd realy like to help though I always have v.strong hormones in pregnancy so my consultant didn't seem to think it would help anyway. Guess, I'll try anything at this point!

[milkyway07]

Thanks for replying lucky and thanks for the reassurance. I have 3 more milestones to get past before I feel a little more confident. I've gotten to 6wks 1 day today - my first miscarriage was a day before 6 weeks.

I didn't know about the PROMISE trial - thanks for sharing that, will look it up later. My doctors have never checked my progesterone levels during pregnancy. Do you think it would be too late to ask for a test now?

[luckyfor2]

Hi milkey I know how you feel these early weeks are so hard to get through and you can't help but think the worst all the time. I had my progesterone levels checked on day 2 and 21 of my cycle (I think) but these are more to do with conceiving than progesterone in pregnancy, I've never had progesterone levels checked in pregnancy and not sure whether there is a test or not? Do you have an early scan booked and do you have consultants looking after you?

[gracebf]

Hi, I am after some advice and figure you all have a wealth of experience between you! I found out after a scan this morning that I have had a 3rd Missed miscarriage.

I have DD who is 5 but have had 3 miscarriages since. All have been the same and have been that the 6 week scan show delayed development and eventually after lots of waiiting the ERPC has been agreed as no hb and no foetus that has developed to the proper size. All have been at around or below 6 week size at 10 weeks.

I am trying to decide whether or not to go down the consultant route and would like some advice based on your experiences. Whilst I would have been delighted to have another child, I do not have this huge desire to have another. I dont want to put us all through lots of stress having tests etc and then another similar outcome. But I also dont want to give up trying if this problem could be solved either.

Does anyone have a history of similar type of miscarriage and been given a reason for it? It must be a specific problem I have as all miscarriages have been the same.

Would just like all the information and opinions I could get please. Also if this is not an appropriate place to ask then please say.

[gracebf]

I forgot to say I had my progesterone levels on day 21 checked and they were 70.

[confu3ed]

Hi , gracybf so sorry for your losses. welcome to the thread there are loads of people here who understand how you are feeling and can offer support.

Both my recent miscarriages have been around 5-6 weeks, and have had all of the standard tests but they have revealed nothing. I would definitely have them though as if they do show something it may be fixed. If there is no specific problem then you can make a decision based on that. The initial tests are bloods and a scan so not too invasive.
Good luck with making your decision and with the erpc, I have needed one with all my miscarriages.

[luckyfor2]

Hi grace welcome to the thread. Sorry you have had such a bad time and looking for answers is a very natural response when you have gone through what you have. Confu3ed is right that the tests are quite straightforward and if you get put through to a recurrent miscarriage clinic (which you can after 3mc) then they will test for all the standard things. They don't always show something and often come back clear but they will take a note of your pregnancy history also and see if they can come up with anything that might help.

Obviously we are not doctors on here so can not advise properly but like you say it appears that there might be something specific as all your mc are happening at the same time. From my experience and from what I have read I do know that natural killer cells often terminate pregnancies very early but there are very few consultants that test for this. You also haven't mentioned your age as obviously this can make a difference as to the quality of eggs. I know you will be going through hell right now and its hard to think what you might do in the future but if you do want to be seen by a recurrent miscarriage clinic it often takes a long time to be referred so I would get that in motion straight away, the tests also take a long time to come back. It is extremely hard to keep putting you, your body and family through this but lots of women unfortunately go through three miscarriages to then go on to have another baby.

I don't know if this has been of any help to you and if you have any more questions I'm sure one of us will be able to help but I would definately recommend reading these two books "miscarriage: what every woman needs to know" by Lesley Regan and "is your body baby friendly" by Dr Alan Beer. These books pretty much cover everything you need to know.

Take care x

[gracebf]

Thanks for that. I have heard about killer cells but was not sure if it did stunt the growth of the embryo without causing a miscarriage. My miscarriages would have gone unnoticed until 12 weeks if I had not insisted on the scans. I am 34 and am aware that these tests may take a while which is why I am not sure i want to go down this route. I am lucky as have dd, 5 but this all impacts on her as she is very sensitive to moods around her. The last 2 years have been taken up with his at one time or another. I will speak to my doctor and find out how long the referral will take, I guess.

I just need next week and the erpc to be over and done with now!

Thanks for your responses.

[milkway07]

lucky - yes I do have a scan booked for next week which is a bit scary. I'm with the EPU at my local hospital so will be getting a scan every 2 weeks from next week (all depending..). I did have my progesterone checked nearly 9 months ago after my 3rd mc - I think it was fine back then. Thanks for listening.

gracebf - All my mc's have been between 5 and 8 weeks, 3 babies stopped growing at 7 weeks. I haven't had a reason for the miscarriages, even though I have had many tests done on the NHS. Like lucky suggested I really recommend the book by Lesley Regan, it is very informative and helped me understand alot about my miscarriages. Hope you decide what is best for you.

[luckyfor2]

Grace I understand how horrible it is and having a child to look after at the same time is also hard. I've had to tell my two children twice that their sibling has died and it truly is unbearable. You feel dead inside yourself and try so hard to be the mum you always were and wanted to be. I hope everything goes okay in hospital we all know how scary it is and please come back on here to share your feelings and questions, we are all here to support and help.

With regard to NK cells there was a trial done over the past few years and I'm pretty sure the results are to be released in June.

[igggi]

Hi Grace, sorry to hear what's been going on. Maybe you could give yourself 6 months to regroup, by then you could have your test results and so make an informed decision about whether to keep trying or not. I'm sure you've been told it's "bad luck" and of course it IS possible all 3 babies had chromosomal abnormalities.

I have heard from S that I have borderline NK cells, other tests not back yet. (Wonder what "borderline" really means??)

[gracebf]

Thanks for all your messages. Luckily I didnt tell my dd on any of the occassions that I was pregnant. I keep thinking that maybe it wouldnt happen if I got pregnant for a 4th time but am probably kidding myself. Must be a particular problem with this history.

Thanks again.

[digitalgirl]

grace so sorry for your losses. It is incredibly hard dealing with pregnancy after miscarriage then miscarrying repeatedly especially when you have a child who is very aware of the stress you're under. I have one ds (nearly 3) carried to term without any problems. However have since had 4 miscarriages. All recurrent miscarriage tests I had on the nhs came back clear (took about 3 months to test and get the results back), so I went to see Mr Shehata at the Miscarriage Clinic when I miscarried a fourth time. He tested my nk cell count and it came back high. Basically my body has been rejecting what could have been perfectly healthy babies - the nk cells can attack from conception affecting the growth so that the foetus doesn't develop as it should. I'm not sure whether there is any difference in potential causes between a spontaneous miscarriage and a missed miscarriage. Worth asking a consultant who specialises in recurrent miscarriage. I know what you mean about wondering whether to continue...for me it's almost that I have to prove that I can have another baby, my ds is wonderful (and a handful) and brings us so much joy that I do wonder why I'm so hellbent on having another when I could just be enjoying him. I'm 32 so still feel like I have a few years more to keep trying. Trying to remember to live life in between the pregnancies & miscarriages though.

iggi i think borderline is an nk cell count between 0.8 and 0.9. He may suggest a lower dose of steroid when you come to discuss your treatment plan. I know of another mn'er who was found to have borderline nk cells - she's now about 5 or 6 weeks pregnant and on a lower dose of steroid as well as progesterone supplements. All seems to be going well for her so far. Do you know when your other results will be ready?

Not much happening here. AF has gone so we're ttc again, but egg not due for a couple of weeks so it's all just 'practice' for now. Still on holiday so enjoying being with ds and dh.

[gracebf]

digitalgirl Can you get nk cells checked on NHS. Also I am assuming the Miscarriage Clinic is private? Can I be nosy and ask roughly what kind of price I may be looking at?

Can anything be done with nk cells.. I have vaguely heard of it and know its not too well researched.

I really appreciate all your help as its good to hear from people who know whay your/ they're talking about!

[Havingkittens]

Hi Gracebf sorry for your loss. I just wanted to say that if you have time on your side and a sympathetic GP it is possible to get NK Cell testing on the NHS. I was referred by my GP to Mr Shehata. The waiting time was 3 months from referral and then I got my blood results 3-4 weeks later, so all fairly efficient. Although I had been for all the regular RMC tests first with no findings so don't know if that would have any bearing on your GPs motivation to refer you. Mr S has an NHS clinic at Epsom & St Helier.

The treatment generally consists of taking pregnancy vits (the ones with Omega3 as well), 25 microgramme Vitamin D3, 75mg Asprin & Folic Acid daily for 6 weeks before conception and then the relevant dose of steroids from ovulation to your period or BFP to be continued until 12weeks & then weaned off or if period comes take a break 'til next ovulation. This surpresses your immune system so as not to reject the pregnancy. Also progesterone suppositories from BFP to 16 weeks, and in some cases if you have blood clotting disorder too then clexane (I think, that's not in my treatment plan).

[igggi]

Am pulling my hair out today. Did an optimistic test this morning (10dayPO) and am convinced a see a faint line, def after ten minutes though. Repeated it at lunch and think the same, though my eyes are now seeing things from all the staring I have been doing! Am pretty sure it is not blank, but of course you aren't meant to read after 10.
The reason I'm panicking (in addition to the usual!) is that I'm not supposed to get pg this month, am supposed to start taking steroids at next ovulation.. Wonder if I should phone S's midwife tomorrow (if I get a clearer +) and see if I can do anything now? Blast.