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Miscarriage/pregnancy loss

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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:
freelancegirl · 04/07/2011 21:20

Hello everyone, thought I would drop in a say a quick hello.

Blue someone else who was also recommended to me, and might be easier for you to see/get to was a chap called Dr George Ndukwe in Care fertility clinic in Nottingham. He apparently follows the Chicago methods/Dr Beers methods and has great success with these. Sorry you are feeling a bit low today, it is very understandable with everything you have been through and are indeed still going through. Almost four months after my last miscarriage I (often managing to be upbeat) had a bit of a cry last night. Sometimes it just all feels a bit overwhelming. Especially as we seem to have to take charge of our own tests etc with not much support. It uses up a lot of emotional and physical energy and you are bound to feel low every now and then. Did you get the Dr Beer book? I know you are taking a break from things after this has all ended but I really think you might find it interesting and relevant. A big squeeze in your direction from me.

Milky that is a really weird and quite lovely sentiment about having felt there was someone missing in your family. For me that was the thing that upset me last night, I remembered the hopes and dreams I had had for that baby and even the silly name we called him (no idea why I thought it was a him) made me a bit teary. The next one couldn?t possibly replace him, strange as that might be.

Realistically Milky, you know there?s nothing you can do to jinx anything! But we all worry about it so I understand.

Knitter glad you had a fab time at Glasto. I haven?t been for a few years and would just love to go! I always used to get press passes but they are so much harder to come by these days and I never manage to organise myself in time to buy any. Sorry you are having such a tough time. Hope the break from treatment will do your mum some good.

Steph that is brilliant about the scan! How amazing that must feel. I know it?s just a step on the road but it is a very good step and it?s great to be able to have that step successfully out of the way. And Hairy, it?s so lovely to see that all is going well for you so far. Getting to 12 weeks is such a milestone. All our fingers are crossed for you and everyone else who is pregnant again.

Scooter that is really, utterly shite of your GP. What a bloody jobsworth. You are have suffered from recurrent miscarriages and all you are doing is being a proactive patient to try to ensure this doesn?t happen again. Does the GP have any right to do that? Surely you are not just allowed to see one bloody specialist? Imagine if you had cancer or something and they said oh you can?t get such and such checked out too?.

As for Dr S, my first appointment was in May and he will have a good chat with you and arrange for tests. Hopefully, as you have also had a lot done already, there won?t be so many for you (take along everything you have had ? including the actual figures. I got my GP to print these out for me ? you are legally allowed to have them so put your foot down!) but of course there will be an NK cells test. Then the follow up will be about the results and likely treatment. I am due to see him after my first cycle of Prednisolone and am now on day 7 of this and CD22.

I am finding the steroids ok so far. A few odd symptoms but no scary moon face just yet. Weight gain has happened but I think it?s because I have been stuffing myself with cake and pudding when away for a few days and now hope to try to get back on track. I have had some very odd other symptoms (lots of ovary pain for one and a second huge temp rise ? tri-phasic rise apparently) so there has been a bit of mentalling about ectopic pregnancies, PID, endometriosis, being pregnant but my very high NK cells attacking it already and of course NOT being pregnant and it all being completely in my head. But I am trying to remain as calm as possible.

Hi to Iggi, LAF and anyone I have missed xx

Havingkittens · 05/07/2011 11:07

Steph brilliant news on the scan!

Great to hear all is going well with you too Milky

Hairy - Wow, 12 weeks! That's wonderful news. Thanks for popping in to share that news. You're right, it's great to hear positive news over here. It gives us all hope Smile

iggi yes, you can buy co enzyme q10 or whatever it's called. They have it in Holland and Barrett.

Scooter good to see you back here but really sorry to read of your struggles with getting any help from your GP. Is there another GP in your surgery that you can talk to instead? GPs seem to vary quite a lot in their attitude and helpfulness. I know changing mine made an enormous difference to the care I got. When I was pregnant for the second time my (former) GP told me that I wouldn't be able to get an early scan even though I'd had a missed miscarriage the last time. When I got to my booking in appointment, at 11 weeks, the midwife said "Oh hello, I remember you. How are you feeling? Nervous, I expect. Would you like me to arrange and early scan for you?" (This was, remarkably having met her once at my booking in, and then one telephone conversation after that with her explaining why I hadn't been for my follow up appointment at 16 weeks" - this is one of the various reasons I changed GP but always self refer to the same midwife each time. I couldn't believe my GP had been so unnecessarily obstructive. Also when I went for the blood test to check my immunity for rubella she instructed them to do a full antenatal blood screening.... except I wasn't pregnant. Dozy cow! Now I have a GP who can't do enough to help. So, it is worth seeing if you can find another GP even if they are in the same practice. Actually, thinking about it, I had exactly the same experience as you with the letter to make an appointment only to have a conversation with a receptionist who didn't know what to say to me. I seem to remember when I finally got an appointment to go in the results of my test were clear so they could've just told me that on the phone anyway! (it wasn't to do with m/c so it wasn't even something I needed to hear face to face).

ilove I hope things have settled for you and that you don't have to have an ERPC.

LAF Glad to hear you are feeling less overwhelmed. Good luck with the TTC. Maybe your DH is trying to show you he is concerned for you and not just dismissive of the situation by coming up with his crackpot theories. My OH has such a ridiculous memory and attention span when it comes to stuff he doesn't really understand. It's been 4 years of TTC, 6 pregnancies later and he still doesn't grasp any of the information I tell him. He still asks me what it means when there are 2 lines on the OPK sticks. Then he doesn't get why I am frustrated with him after doing all the research myself, which may be make or break as to whether we have a child or not and he can't even remember the basics!

As far as stuff with me goes, well, the news is quite good now for my mum. The extra growth they saw on her scan was a "nodule" which is outside of her lung and only tiny so they say it's not cause for concern at the moment. The cancer in her lungs which isn't lung cancer, it's a secondary metastasis of bowel cancer so, even though it's never going to go away, it's a non aggressive cancer and is still stable so they have decided not to put her back on the chemo as she is feeling so well at the moment. They will monitor her every 3 months and act accordingly depending on any changes. We are all really pleased, as you can imagine. My granny was on quite good form over the weekend too so that was quite reassuring. Sadly my dad and stepsister are still struggling but that is bound to be the case for a while and I will try to give them as much support as I can. So, on the whole, all pretty good here. I am 9dpo so I will be starting again on the shaggathon soon! I have a bit of a throat infection at the moment, which I'm guessing is due to my superhuman immune system being surpressed so I'm hoping it's gone by the time I'm back on the steroids again otherwise it might get worse.

Glad I now have some fellow steroid users to compare notes with!

Hello to anyone I have missed. Have spoken to digi and Freelance on the TTC/Preg on Prednisolone thread.

Better go and do some work/hustling after this monster post!

scooterchaser · 07/07/2011 09:30

Hi again iggi, I tracked back several pages and can?t believe what a horrible time you?ve had. Thinking of you and hope you are having a well earned break and getting some sunshine. I hope that your work have been really supportive and that you aren?t having to wait for the school holidays to take the time you need. Big hugs to you.

Milky thanks so much for your supportive words, I hope the counseling went well. I think that it?s really important to cry and grieve so even if crying is all you did there, it is probably progress!

Hairy so pleased that your pregnancy is progressing well - really, really heartening news.

LAF think you may be away at the moment, hope you are ok and have PMd you.

Iloveblue, all of us remember so clearly how horrendous those final days of mc are, my heart goes out to you. Don?t expect yourself to feel okay at the moment, even people who have not been through it should understand that you are grieving. I hope you are getting lots of support from family and friends right now.

Freelance thanks for the advice. I did take along my testing history but as there have been so many cock ups, Dr S decided to do them all again anyway, belt and braces I guess! Sympathise with all the pregnancies in the head, I have also been lots of awful scenarios, I think all this fearfulness is only to be expected, but it?s the one thing I want to have counseling to deal with.

Kittens relieved to hear things seem better for your mum and your Granny is back on form. Thanks for the advice on the GP, I have decided to bite the bullet and find someone else to take my case. Hope the throat infection is better soon.

I have booked a double appointment with a new GP where I will explain everything and ask if he thinks he is the best person to take me on. Male GP this time, if that makes a difference. I never realized that it is such a lottery of care!

Well, Tuesday was my appointment with Dr S and dare I say it, it was a bit disappointing. There were 3 of them in the room which I found a bit intimidating - and I soon realized I wasn?t prepared enough to ask the right questions. It went very fast as he was obviously incredibly busy?. so busy that my follow up appointment has been made for MARCH 2012!!!!!!!!

DH was incredulous about this, I don?t have the energy to get het up about it. Dr S said that he would be putting more clinics on (run by his colleagues) and I should be moved forward but obviously there are a lot of people ahead of me in the queue. I will just wait and see (as usual!) we might get lucky.

I had 10 tubes of blood taken and he suggested I start 25mg D3 and 75mg aspirin straight away, along with Pregnacare Plus (Omega 3). AF came the day after and I felt so relieved because he said I should really try not to conceive until we have some results, I really hope that this doesn?t mean I have to wait until March though!

I said my GP had told me to cancel appointments for scans and counseling made through my local hospital consultant. He said a scan was unnecessary as I have carried a child to term but he was supportive of me going for the counseling. When I quoted what was said to me about separate NHS trusts, he just looked as if he?d never heard that before. Referring for counseling is clearly something he doesn?t deal with as his plan is very specific. I am now wondering if I should ring my consultant?s office and ask them to re-instate me on their books.

I just had a few questions for people on his treatment plan ?
Is anyone else attached to a local hospital consultant AND Dr S?
How long do you have to wait for the bloods to come back?
Can you ring up his office for the blood results ? I can?t believe I will have to wait til March to get them?
If I am positive for a thrombophilia or NK cells, will I have to wait for the appointment to get a prescription?

Havingkittens · 07/07/2011 10:00

Scooter don't worry about the long wait for your next appt with Mr S. I saw him on the NHS and the same thing happened. He told me not to worry about it and that it was just to "get me in the system". The blood results take about 5 weeks to come back and they will most likely give you the results by telephone consultation, which is what they did with me. He is fully aware of the fact that time is of the essence and that we just want to get on with trying to get pregnant again. He also said that I should let him know when I get pregnant but that I could have all my scans done by my local EPU rather than traipsing all the way to Carshalton every two weeks. His secretary and midwife are both really helpful if you have any questions once you get your results.

Great that you've made an appointment with another GP. That could make all the difference! Best of luck.

freelancegirl · 07/07/2011 11:19

Gosh scooter that sounds really confusing with the whole appointment thing. I too was worried that i was going to be disappointed with my first meeting with Mr S - I think there's a tendency to build it up as it is really a huge deal to us but in reality it is just like going to see a normal doctor. Who were the other two people there?

In answer to your questions:

I am not yet attached to a local hospital consultant AND Dr S so I can't help you on that one. Not sure what will happen if/when I get pregnant though. I haven't yet asked him. It would be great to have scans at my local EPU as otherwise, since I am seeing him privately, it will probably cost a bomb.

How long do you have to wait for the bloods to come back? I think they came back pretty quickly - a few weeks.

Can you ring up his office for the blood results ? pretty sure you will be able to.

If I am positive for a thrombophilia or NK cells, will I have to wait for the appointment to get a prescription - no idea but I think what Kittens says must be right and SURELY they will get you an appointment before then.

I did have an NHS referral but went private in the end as it was taking so long. My NHS referral has now kicked in but I am unsure to what extent I can use it, which is a bummer. Will find out more as I go along I guess.

scooterchaser · 07/07/2011 12:06

Thanks so much kittens and freelance for all your reassurance, I feel a lot better!

His assistant and I guess a trainee of some sort were also in the room. He went out to make a call at one point and his assistant (Annabella?) was really nice to me and told me to think of my questions for him but of course I only came up with my questions when I left!! Always the way!

Good luck with going from private to NHS freelance I am sure that must happen all the time and you will be able to keep the costs down somehow. As kittens said the waiting times on the NHS seem horrendous but I now realise (with relief!) they aren't going to leave me in the dark if there is something to know and act on.

Here's for the bloods wait now.

Thanks so much guys :)

Havingkittens · 07/07/2011 12:32

Scooter, it's a good idea to give Annabel a call in about 4 weeks to ask her if she can arrange a telephone follow up with your test results. It's good to give them a little prod! Did they tell you to take the Preg vitamins, Omega 3, Vit D, Asprin & Folic Acid for 6 weeks before trying?

When they get your results back and you have your follow up appointment or phone call they will then send you a prescription request to take to your GP if it's relevant.

batteryhen · 07/07/2011 13:24

Hello ladies,

Some of you may remember me as I have popped in to ask advice before. Sadly I have just had my 3rd MMC - this time picked up on the 12 week scan where the baby measured 12 weeks so must have died very recently before the scan. I had an erpc almost 3 weeks ago, and am just waiting for my first AF.

I am in a quandry though and am hoping for some more advice. I am under my local consultant who wants to see me once the tissue samples from the baby are back in. I have had all the blood tests following my last MC, which showed I am positive for factor V leiden for which I was injecting clexane. My consultant is the specialist for Miscarriage in this area and also works privately for CARE so I do feel I am in good hands.
However, I feel maybe I should see MR S. I have emailed his midwife and she was very encouraging and said I should book.

My question is should I wait to see my consultant and see what he says or shall I just go ahead and see MR S? Also like scooter says - I don't know if being under one consultant and seeing Mr S is a good idea as I don't obviously want a conflict between the two in any teatment I might receive.

I just want to get on with TTC again and hate this being in limbo state. It is driving me mad.
Thanks for any advice and big waves to coconuts if you are reading xx

ALovelyBunchOfCoconuts · 07/07/2011 13:36

Oh no Battery , it was only yesterday I was thinking of you and was going to PM you when I next remembered. Such sad news, I'm so sorry. Sad

Glad you feel like you are in safe hands with the consultant, after originally worrying about the hospital in the beginning.

Obviously i have no advice re Mr S but I hope someone else can help you.

So sorry and I hope you have some positive news soon. Did your OH manage to come back for the scan? I hope you weren't alone. If you want to PM me again feel free.

Hugs xx

scooterchaser · 07/07/2011 14:34

Battery I am so so sorry and my heart goes out to you. It is unthinkable that this has happened and especially when you were under treatment.

As for seeing Dr S, a hospital consultant such as yours should be able to refer you on to him so maybe talk to them about setting that in motion asap. They should be happy to do it, as clearly you need more specialist knowledge and testing than they have been able to offer you so far.

There is only a conflict in my case because my GP referred me directly to Dr S and now thinks I shouldn't be registered with a hospital consultant as well. Dr S didn't seem to think it a problem. I am learning that the rules are very different according to who you talk to!

I am also a possible candidate for Factor V which is in my family (I am still waiting to find out) but I wanted to be tested for NK cells by Dr S because I know that my immune system is on the overactive side and this is not something routinely checked by other consultants. Lots of people choose him for this reason.

I had tissue sent away from my third mc in April and unfortunately the results aren't back yet so I would say don't let them schedule your next appointment on the back of that, because you may be waiting a matter of months.

I hope you are getting lots of TLC from those around you right now, you will find brilliant support on here and lots of reassurance too.

kittens yes I have been told to take all those things except he didn't mention any more folic acid than what is already in Pregnacare, are you taking extra?

batteryhen · 07/07/2011 14:56

Thak you both for your replies.

Scooter you made me realise that realistically I could be waiting for months to have my results back and to see my consultant. So on that I have booked to see Mr Shehata in August. I have take the plunge and I feel happier for it. The only Saturday appointment he had was 18th August so I have gone for a weekday. DP might not be able to come with me but his secretary said he didn't really need to for the first appointment.
Coconuts will PM you later xx

Just wondering does anyone see Professor Regan? How do you decide who to see?

Thank you again xx

Havingkittens · 07/07/2011 14:59

Battery so sorry to hear your news. There are a few people on here, I think, that are under St Marys (or other RMC) and also seeing Mr S. Like Scooter says, the opinion varies depending on who you speak to but my experience was that my RMC didn't test for NK Cells and didn't seem to think it was a valid path but when I had my last MC, which was after my initial RMC tests the consultant told me that if I wanted to see Mr S I should ask my GP to refer me. I am lucky in that I have a very helpful GP now so that was not a problem. Why don't you speak to the consultant you are currently seeing and run it by them? Then they can say whether or not they will refer you and also coordinate any treatment or care between the two of them. It shouldn't be a problem, but if they feel it's controversial and don't agree with Mr S's treatment protocol the decision is still yours in the end.

Scooter I am on a high dose of Folic Acid because I have had 2 pregnancies with TS21. I think he just recommends the usual dose for most people, which I guess is in the Pregnacare.

Here's a question regarding TTC strategies - I'm on CD11 so I'm about to commence my monthly shagathon. What the general consensus, every day, or every other day? Obviously I will be tenacious around the actual OV days.

georgiepie · 08/07/2011 11:15

Hi everyone,

Sorry I have been really quiet, I have been reading your posts most days.

Kittens I am like you on day 11 too! I think its best to do every 2nd day just before you ovulate but the 2 days that you are actually ovulating do it on both of those. Does that make sense?!

Battery really sorry to hear your sad news, thinking of you.

Freelance is everything ok? How you getting on with the prednisolone?

I had my 2nd follow up apt with Mr S last night at Espom. I was a bit cross as i had to wait 40 mins and the same on the 1st apt. Im going private but have been worried about how expensive he is! On the 1st apt after having the blood tests and apt it was £960. My results show I have high NK cells. (1.79 which is very top of high level befoe it goes to 1.8 very high)

He has prescribed Prednislone 25mg and wants me to go back after i have tried them out 1st month. To be honest I will go after 2nd cycle as cant see point if nothing has happened.

So I had better get busy this weekend! Wink

freelancegirl · 08/07/2011 12:18

So sorry to hear about your mc battery. It's such a bummer this whole thing. I have been feeling quite positive over all but today having got a BFN after my first month of ttc post mc, even though I thought I was ok again, I have had a little wobble. Good on you for taking the plunge and arranging the appointment though Battery, I was waiting ages for my NHS referral to come through too and in the end just went private. It's frustrating but hopefully the NHS can kick in at some stage. And seeing him at Harley St, Ashtead and the new clinic in Epsom is sooo much better than going to St Helier. I have done all of those now!

Georgie when you were there yesterday you didn't perchance see a dusky looking girl with long dark hair, wearing a purple skirt and wandering around with a cameraman did you? If so - that was me Grin Someone did speak to me and ask me to let the nurse know they had nipped down to their car.

Good that you have a diagnosis I think. From what I hear that level, even though they sound high, are pretty treatable. Did he sound confident? I am rather worried about my levels as he didn't sound confident about them at all - which is worrying as everyone says he is usually quite reassuring! Mine were 3.79, in the top 5% he has seen. I feel a bit crap about that today.

I think I am going to stop taking the Pred tomorrow after getting a BFN today. The treatment hasn't been so bad but yesterday I think I reached a peck of steroids and probably PMT as I just felt exhausted and had difficulties concentrating by the evening. It has been a long couple of weeks though and the Pred is definitely affecting my sleep. But it is not hideous I hasten to add. If I get a BFP will have to increase it to 40mcg so that's quite daunting.

I too wonder what would happen at a follow up appointment after one month so am wondering whether I should go back or not. I don't want to waste the cash if I can help it!

Do come and join us HERE on this thread I have created for anyone on Pred or similar!

Havingkittens · 08/07/2011 12:36

Oh blimey! I've just done an OPK and it's come up positive, already! Better get cracking then... I didn't do the big run up this time as we kind of ran out of steam a bit early last month so I guess I'm almost taking the opposite approach this time. I don't usually ovulate until day 16. Whoops! God, I hope it works this time as my mum is over at the 'crucial' time next month and is going to expect me to be down in Sussex with her and the family whilst my OH is here which isn't ideal! So, thanks for your feedback Georgie but it's been intercepted this month Wink

Freelance sorry to hear you're having a wobble. Completely understandable. However much you tell yourself it's probably just as well not getting a BFP the first month, it's still a kick in the guts when you don't.

georgiepie · 08/07/2011 13:19

Freelance I had last apt so missed you! Will take a look at the thread soon.Sorry you had BFN, its so hard when you are taking all meds etc and that happpens. Im 42 and I think its going to be hard to get my BFP but fingers crossed if I ever do then the medication will help. Hug to you. Freelance, Im only going to go and see him if I get a BFP or any side effects that I dont understand or cant cope with. He has given me 4 cycles worth of medication. £150 to ask how I am getting on is just not worth it!

Kittens enjoy yourself this weekend! I hate TTC under these conditions. Our sex life feels rubbish and robot like. I will give it to end of 2011 then im finished with TTC.

Happy weekend to everyone - make the most of the British weather! We are having a barbi Q tomorrow!

xx

BryanBeattie · 09/07/2011 14:52

There is a lot of misinformation about the link between NK Cells and recurrent miscarriage. In a nutshell:
1-High levels of endometrial NK cells on a late secretory phase endometrial bopsy have been found in women with recurrent miscarriage.
2-There is good evidence that the correlation between blood NK levels and endometrial NK levels is poor
3-There is poor evidence of a link between BLOOD NK levels and recurrent miscarriage
4-There is good evidence that steroids such as Prednisolone reduce endometrial NK levels
5-Siobhan Quenby is heading a randomised controlled trial to explore the likelihood that steroid treatment in women with high levels of NK cells will reduce the risk of miscarriage
6-Innermost Secrets in Cardiff are one of the few centres in the UK that offer endometrial biopsy to measure endometrial NK cells and follow on treatment and support. The test is not usually available on the NHS.
Bryan Beattie
Consultant in Fetal Medicine

iggagog · 09/07/2011 21:51

Hi guys. Not much to say, just that I'm thinking of you all. Only another few weeks till I'm back on the bus. (Bugger).

iggagog · 10/07/2011 20:56

Watching Marley & Me, hadn't known there was a mc scene in it. Not too badly handled for once.

milkyways · 11/07/2011 12:29

Hi everyone!

Glad you're okay iggi. I watched about 3 mins of Marley & Me and decided that I would rather watch Jennifer Aniston in Friends, so switched to E4! I didn't know there was a mc scene in it.

So I had my final appointment at the EPU today, and I have been discharged to community care. I'm a little apprehensive about this, but will see how things go. I am still too afraid to buy maternity clothes, or tell anyone. I also had my mc counselling last week and it went really well. It felt good that someone was asking me how I felt when I had my mc's....I think it helped me let go a bit as I thought my tears had dried up, but I cried and cried throughout the session.

Hope you're doing well lucky if you're reading.

Waves to LAF kittens iloveblue scooter* and anyone else I have missed out - hope you're all okay.

scooterchaser · 12/07/2011 20:46

Hi iggi and milky I saw Marley and Me before all my mcs, from that place of glorious ignorance, I probably wouldn't want to see it again because it will just remind me how much i've changed. Just FYI the film 'Up' has similar scenes at the beginning. I watched it just days after mc3 and remember feeling very depressed that I couldn't even escape watching 'U' rated cartoons!!! Didn't switch off but let's just say I don't remember the film very fondly! Well done iggi for handling it well, you're a tougher cookie than me!!

milky glad it's all progressing well, it's a massive vote of confidence that they've discharged you. Totally understand being apprehensive but I hope you can start to feel more confident as each day passes. Will you get check ups with the community midwives now? Good to hear the counselling is helpful, can I ask if it's something you've arranged privately? I had been provisionally referred for counselling by my local hospital consultant but have heard nothing and not sure I can take it up now I am 'in the system' with Dr S. As ever I am so confused about how it all works!!

Sending positive vibes to everyone out there.

pebspop · 13/07/2011 10:01

Hi

Can I join you?

A bit of history from me:

I am 31, DH is 29 we have no children. We have no underlying health problems (that we know of).

I had a miscarriage at 11 weeks in Nov 10 and a second miscarriage at 20 weeks two weeks ago.

I had a ERPC for the first miscarriage and medically managed for the 20 weeks (which was actually a MMC at 16/17 weeks).

The hospital are going to carry out all the tests they can on me and dh including postmortem on the baby.

I am still feeling postive that I will get a sucessful pregnancy in the future but sometimes I wonder if I am deluded!

I don't seem to have a problem with getting PG but staying pregnant is a problem for me which I never even imagined could happen. I always thought the concieving was the hard bit.

I am currently awaiting the test results. I have been booked in for more blood tests next month and I am going for an inital consultation for counselling today. This has been organised by my work and a private company come in every week for 12 weeks to speak to me. Work are paying for it which is good.

Not sure if I really need counselling but it might help to get my head straight.

I will have a read back through this thread to pick up on everyones stories.

LAF77 · 13/07/2011 11:41

Hi pebs I'm so sorry to read the history of your losses, how heart breaking.

Can I ask where you are in the country? I think that you should see a specialist miscarriage consultant clinic to help you get the tests and answers that you need. Many hospitals don't have the knowledge and expertise to test for the clotting disorders that can affect miscarriage, like antiphospholipid antibodies, factor V, TEG.

We are here to listen to you and help in anyway we can.

Thinking of you....

OP posts:
milkyways · 13/07/2011 11:50

scooter The counselling is on the NHS. Everytime I had a miscarriage I was given the number for the counsellor, but I never had the courage to phone up, as I felt it would class me as a loony....I was so stupid. If you have been referred by your consultant, then definitely take up the chance if you feel ready. I am 100% sure they won't deny you counselling just because you are being treated by Dr S. If you have the number for the counsellor can you phone up yourself and make the appointment? My counsellor is based at the women's centre of my hospital and I had to calle her myself as my GP had no idea that she even existed. Maybe you could try to google your hospital and counselling services and you might come up with a number. Good luck!

pebspop I'm sorry you find yourself here, but welcome to the thread. I am sorry for both your losses; it's the most heartbreaking thing a woman could go through. I am sure you will get alot of support from people in the same situation here. Feel free to add yourself to the list - I am sure there is an updated one a few pages back.

pebspop · 13/07/2011 12:37

i am in lancashire. my local hospital are carrying out tests but i am willing to try everything and think a specialist would be the best place. I have already been looking at lesley regans clinic and have ordered her book from amazon.

How do i get reffered to a specialist? i can pay for private if needed .

I was going to let the hospital carry out their tests and see what happened first.