Recurrent Buns - MC Testing and Beyond... Part 4...!!!

[Julezboo]

Gosh we can chat ladies!!!

Part one HERE

Part two HERE

Part three HERE

List

STARTING TESTING

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 for sure. No children, no RMC appt, no diagnosis and not 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 27 - 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 - although high prolactin level found. Waiting for appointment at RMC with consultant, and wanting to be referred to St Mary's.
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. Bloods taken from me and DH at hospital at last MC and awaiting results on baby from PM.
IGGI2011 - Age 40, 3 year old DS. 3 MC last year, at 6, 8 and 8 weeks. Last two had hb detected. Having bloods taken by obs soon.

UNDERGOING TREATMENT

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
BANANA87 Age 30- 1mmc@7 weeks, DD (2), 1 mmc 6 weeks, 1 mc 7 weeks, currently waiting one more cycle before TTC. Going to try aspirin and progesterone as per consultant. Clotting bloods normal.

TTC

MUMMYABROAD Age 35, 1DS (2.9), 1MMC Mar 2010 (@14weeks) Ashermans diagnosis and treatment Nov 2010, Started TTC Jan 2011 Cycle 1
DIGITALGIRL Age 32 - DS 2.4 - 3MCs since ttc#2. MC1 5wks. MC2 6-7wks. MC3 7-8wks. Awaiting clotting & karyotyping results, under consultant care for rmc. Mild pcos. Currently TTC.
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

PREGNANT

LUNATIC dd1(4) 2 mmc (8 wks) dd2 stillborn (32+5), clotting problem, pg #5 section booked for 9th Feb @ 35wks. On 150mg aspirin daily.
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
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.
LOVELYBUNCHOFCOCONUTS Age 23, 1 MC (13 weeks), 1 MMC (10 weeks - growth stopped at 7), 1DD born 2008, PCOS diagnosis, bi-cornuate uterus.
HAIRYFAIRYLIGHTS
HAIRYCLAREYFAIRY

GRADUATES WITH BABIES!!

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 and currently in Special Care Baby Unit.
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.

Will do a catch up post now...

scooter As MummyAbroad said, ask to be referred to St Mary's. Also Mr Shehata is a consultant at Epsom & St Helier hospital (I think he has a few other clinics in Surrey too) and I thoroughly recommend you try and get referred to him as he will test you for immunological causes which St Mary's won't do. You could also see him privately if you felt the nhs waiting list was too long.

I also have a ds who is 2.8

Really nice to see some positive news /stories here :)

Just a quick response to mummya before I go to get my greys anatomy fox (and apols for tmi for everyone else): last period back to normal as in per pregnancy normal so I am happy on that front now. I was a bit annoyed though as I was travelling abroad w work so missed my day 1 progesterone blood test.

Hi Lola!

It is indeed, & hope you are doing ok Hairy.

Fix not fox!

Pureequeen I take it you meant to type pre pregnancy normal? If so, thats very good news (from my Ashermans fixated thinking!)

iPhone not helping - yes pre pregnancy!

Hi purequeen just backtracked a bit and saw I'd missed your message - iphone issues too, sure isn't doing my eyesight favours. Nice to know we have DS's same age :) Thanks for asking, was doing well today until I had a text asking me how the bump is (ouch) and a phonecall from a very pregnant NCT friend who was so lovely but set me off thinking about the upcoming hurdle of a due date. First one is May the 4th (star wars baby) not easy to forget that one....
Good news (small mercies I know) that you are back to pre pg normal with your cycle.
Thanks everyone for the Surrey tips, I am arming myself with all the info I can to take to hospital for my post mc scan on Fri. Have a feeling I am going to really have to push to even get a consultant appointment.
digital thanks for the advice, just to clarify do you think I can ask for referral to St Mary's AND Dr Shehata or is that just pie in the sky? NHS is such a minefield. So sad, I just saw that you had a 4th mc, OMG to wake up in the middle of this same nightmare so many times...my heart goes out to you. How are you doing? PS as well as same age DS, I am also 32 forgot to add that in the stats list.

Hi Scooter Just a quickie. I have asked for a referral for both but not sure if I will get St Mary's as my 3 mcs have not been concurrent. But I am going to try to wing it as best as I can! I found the scan at EPU didn't do much in terms of referring me on or info (apart from whether there was anything left inside) but it was my GP who I asked to do the referrals. Good luck!

Thanks freelance. My GP says that I stand more chance with St Mary's if I get referred by the hospital rather than her. Feels like there will be an awful lot of buck passing going on :( PS Doesn't this 'concurrent 3' make you want to scream, NHS rules - so heartless. Good luck with your referrals.

Just a msg for those trying to get referrals...I am with Guys & St T's, not St Mary's, but it was my young and enthusiastic graduate GP who I think slightly fudged my referral form and then called the admissions secretary himself (as of course I am not officially recuurent having had 2 then a child then another 2).

There does seem to be a lot of buck passing. When I have gone to hospital I have only been seen by EPU, am I missing out a stage do you think? Should I be seeing a consultant? My gP has been good in that she has happily done as I asked but it is v much a case of me informing her and it would be nice t have it the other way round! Or just wait with fingers crossed for referrals. Sorry for any weird iPhone typos, am at dentists :)

oohhh, I had to go to the dentist yesterday and explain that I have been pregnant, breastfeeding or pregnant for the last 3 years -and not wanted to be exposed to xrays etc - and that was why I needed £300 worth of work. I was mortified (and bankrupted). Hope all ok freelance!

Yes all ok, apart from a numb mouth and 2 fillings to return for. She did two private and two nhs so it was 'only' £160. That's quite an impressive pregnant/bf record purequeen. Still doesn't make the blasted dentist any cheaper though.

If you've had 3 recurrent mc's you should be seen by a consultant - the epu staff should be able to refer you within the same hospital. If not ask your gp. If you then want a referral to St Mary's it is best coming from a consultant who has already done some of the basic rmc tests - anti-phospholipid antibodies, lupus anti-coagulant, day 3 hormones, a thorough uterine scan to check for any physical causes, plus genetic karyotyping for you and dp.
If you want an nhs referral to Mr Shehata your gp can do this. Some gp's are savvy enough get a referral to St Mary's ie provide them with enough info for the referral to be accepted.

If you want to go private you can just contact both St Mary's and the miscarriage clinic and book yourself in.

After 4 mc's it was easier to accept that something is causing them other than bad luck - which has helped me focus on finding a cause. It's what gets me through the days. That and my wonderful ds and dh. I also wonder if the vit d3 has upped my happy levels as I'm feeling remarkably positive in general. My friend with pnd said they made a massive dfference with her. Also, at this moment in time it's a relief to not be worrying about every little twinge and cramp. I desperately want another child, but being pregnant is a miserably worrying and tense experience - and it's a shame I feel that way as I loved being pg with ds. Was one of the happiest times of my life.

well done everyone..this is a great support on here..I echo congrats to mummyabroad and empathise with not feeling free to be positive fully. Ive had 4mcs int hep past, ds is almost 3 now..and Im 19wks+1 today! I feel the urge to go and get checked, be scanned every week, as I expect something to wrong. But now I can feel the baby kicking and wriggling away inside, it is a wonderful feeling. Keep the hope alive lovely ladies..x

Digitalgirl you are so right about the stress, despite how much I want to be pg it is a real relief not to be, iyswim. May I ask you, I got myself vit d supplements as I heard these suggested, but is that different from D3? Here's my vitamin list - a pregnacare, 2 vit D, 1 selenium, 1 omega 3, 12 folic acid. Takes me half an hour to swallow them all!

Thank goodness for CBeebies...peaceful 5 mins :) Thanks so much for all the advice, I am literally taking notes now!

Going to EPU tomorrow, resolved not to leave hospital until I can talk to a consultant's secretary at least and try to get someone to authorise the initial blood tests. Will also be straight on the phone to my GP if they redirect me back there (and even if they don't).. a belt and braces approach seems the way to go.

Sympathise about the dentist stories, I am not looking forward to explaining why my teeth are so weak and wrecked, 'I've been pregnant a lot lately' will probably get an uncomfortable reaction. But you have given me a slap on the wrist for putting it off, I just need to get on and brave it!

Digi really inspired by your positivity, I will look into VitD3. So many things I have never heard of before. I also loved my first pregnancy and long for that feeling again. Thanks jugglingmama for the story of hope, a cartwheeling baby, hooray!! :)

I do SWYM iggi, about relief, I felt frightened about a few twinges today and after kicking myself back to reality, all I could feel is 'phew'. Its such a double edged sword for us all. Did you self-prescribe the vitamins?

Can anyone tell me what Hughes Syndrome is? I have been tested for that due to a mc/migraine history authorised by a neurologist. Has it something to do with NK cells? Sorry for ignorance.`

Iggi doesn't pregnacare already have some vit d and folic acid in already? Or do you have to take more? Am taking Sanatogen preg and it has 10mcg already of Vit d so am only taking an extra one tablet of 10mcg to make it up to 20. Although I was advised to take 25. Thinking of moving on to pregnacare next so must check what is in it. Am also taking 200mcg of Selenium and also omega 3.

I don't know much about it scooter but I think Hughes is a blood clotting disorder.

My GP says it would be a fight to get a referral to St marys as I'm in Wales :( I cant seem to find any specialist Nhs centres in Wales.

Hi Scooter I wrote a message directed at you this morning on my iphone and it disappeared! I too live in Surrey and ESH is my local hospital. I am not a fan of the EPU there to put it mildly. However, I saw Ms. Gorti, a consultant gynae who is not part of the EPU and she referred me to St. Mary's in mid-February. I have my appt. at St. Mary's tomorrow morning, so it has been 2 months between appts for me. Ms. Gorti admitted that ESH did not have any capability in dealing with RMC patients, so I didn't do any tests with them other than give a blood sample for kariotyping analysis. I do not have the results back on this test. I'm sure if you go private, you can speed up the time between consultation at ESH and appt at St. Mary's. Please PM me if you want to talk further.

My GP ran tests on me for thyroid, antiphospholipid, and 2 other issues and they all came back clear.

I have found this thread to be a lifeline. I've had more downs than ups over the last year and people who have not been through this don't know what to say to you and I don't know what to tell them. Through this thread, I've learned so much information. I wouldn't have known about St Mary's clinic. My GP didn't know what to say to me when I came in and told him of the third mc. I knew what to ask for though.

Congratulations to lucky on the BFP. Welcome here Lola and a big thank you to Lunatic for explaining what is likely to happen at St. Mary's tomorrow. I've got my files out and am making notes about myself and my cycles post MC in case they ask. I want to be prepared. Are you allowed to TTC after the second blood appt 6 weeks after the first one or do you have to wait until the final results are back? Does DH have to come to the second blood appt in 6 weeks?

I'm feeling brighter now because I'm actually starting my real testing journey tomorrow. I don't know what the answer will be, if any, but I feel like I'm making progress now.

Hairy just had to add, there is no reason why you can't be referred to St. Mary's. Your consultant at the local hospital will have to refer you as you are outside of London. They wouldn't accept a direct referral from my GP either. Have you seen a gynaecologist at your local hospital before? Ask your GP to refer you to a local gynae and tell them that you want the referral to St. Mary's.

laf that would be fantastic. Do you know of cases where thus has happened? I'm seeing a gynae/ob consultant But my gp says the Wales assembly has to grant special dispensation for referrals outside Wales. It can take ten months and they dont like funding peiple to have treatment outside wales. I am forty three and don't have ten months.

LAF77 thanks so much for all the local info. Totally agree with you about the lifeline...I have never used the phrase 'clinging on by a thread' with so much meaning until now, have been overwhelmed by all the helpfulness and support. I am lucky to have lots of people round me, but have never felt so utterly alone, my mum and sister have had seven kids between them absolutely text-book stuff and just have no idea what I'm going through. Such a relief to hear from people who do. Will be thinking of you tomorrow at St Mary's, really hope it goes well, keep us posted...