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Recurrent miscarriage testing and beyond.. Part 6.. Over here!

994 replies

orangebowl · 28/12/2012 18:55

We have filled up the last thread so here is the next.. Deep breath and grit your teeth for the roller coaster of emotions that continues... Hope tea and butterfly and all find it!

OP posts:
teaandchocolate · 19/05/2013 09:39

Baking I'm the same, rattling & squelching all the way!! - 4 vitamins + aspirin + progesterone in the morning and 3 vitamins + progesterone in the evening!! I like feeling like I'm doing something though. I just don't know how to get through these early weeks - goes so slowly!!

Daisybell1 · 19/05/2013 20:09

Tea! That's fab news :-) I can understand your concerns - can we be excited for you?

Squizita - how are you keeping? And Baking?

Can I be really selfish and ask some advice? I've had a letter from my consultant and I don't know where to go next. He says

I'm writing with the results of all the tests we have got back so far. There was no sign of any chromosome abnormalities in your pregnancy. All the test results we've had back are normal too. There was no sign of recent infection or any sign of antibodies or an abnormal tendency to form blood clots.

And that's it.

I have an appt on 6 June - what should I be asking for? Which tests should they be doing next? Or should I be pushing for a referral elsewhere?

Can anyone help?

Bakingtins · 19/05/2013 20:25

Hi Daisy.

I can only tell you what I've had done and maybe you can see if there are any gaps for you?
Didn't have any testing done on any of the MC as only first was in hospital Sad I've been told if I MC again then this is a priority.
TORCH blood screen for infections + swabs.
Full blood count + ferritin
Cycle day 2 FSH + LH
Antimullerian hormone (tests for ovarian reserve and PCOS, not available on the NHS I had to pay for it)
Panel of blood tests for clotting, APS, autoantibodies.
TSH/thyroid screen
Karyotyping on me and DH (genetic analysis of a blood sample)
Uterus/ovary scan midcycle. I was told as I'd had a previous successful pregnancy I didn't need any more invasive checks of reproductive system like hysterosalpinogram or any assessment of cervix.

All my tests are normal. That's the case in 50% of women assessed for RMC. I'm not sure how to feel about it. As others have pointed out, it puts you in the group with the highest success rates for trying again, but it is frustrating not to know why the losses happened and to only be able to try non-specific treatment.

I'm doing ok. Have a scan this Thursday when I should be 7+4. I'm conerned that the progesterone is propping up another failing pregnancy and lulling me into not much of a false sense of security and the scan will say no HB. But I'm fairly sanguine that I'm doing everything I can and I can have no more influence over the outcome, and that I've coped with losses before and I will again if I have to.

squizita · 20/05/2013 12:33

Daisy - glad Baking could help you, I am clueless myself just answer anything presented to me!

Baking - super super good luck wishes for Thurs!!!

I am OK. Just had a rant over on the KG 'have kids young' thread because an idiot mate mentioned it as a reason for my recurrent MC. Angry As far as I'm concerned the campaign will result in less sympathy and more blame. Also, I'm thirty fricken four ... hardly at the extreme end of my fertile years!

teaandchocolate · 20/05/2013 13:04

Daisy I agree that Bakings post is really comprehensive. I've moreorless has the same tests although I also had a saline 3D scan to check for physical abnormalities. This was recommended despite me having carried to term because I've had a section & 2 erpcs so they wanted to check for scar tissues/adhesions and also because DD was breech which is sometimes a sign of bicornate uterus. I paid privately for it (although think insurance covered it) but not sure if it was really necessary. However once an issue is raised its in my mind worrying me so I felt like I might as well rule something else out.

The only other avenues I might explore if this pregnancy doesn't work are: St Mary's in London - either nhs or privately as they're the leading rmc and can often find clotting issue when noone else does; and Dr Shehata at the miscarriage clinic, or someone else who does nk cells testing. My history doesn't really seem to indicate nk cells but its something else I've not really pursued.

You can try again though and as others have pointed out you still have a good chance of success. But I know only too well that it mostly boils down to whether you can cope with the emotional side of things and whether you feel strong enough to try again.

Squiz ignore those idiotic people! So unhelpful. Plenty of people in their teens and twenties have mc and we are all still in the 1 in 100 camp so how were you to know that would happen??!

Daisy thank you for your message. I just feel really nervous at the moment. The ambivalence has worn off and now have butterflies! Woke at 3am worrying...argh! Such a long few weeks. But I've called the consultant and should be getting a scan date in the next few weeks so that's something else to worry about!! I started another thread as had a total panic as gardened at the weekend and didn't wear gloves. I'm sure normal people don't even think about these things but to me it now seems like I've ruined it. Also have cramping which I know I had with every pregnancy but it is disconcerting. Might just hibernate from now on!!

squizita · 20/05/2013 13:49

tea do you garden anyway? It is likely that you've had the toxi-can't-spell-it soil-bug before and not even noticed, and it is only harmful the first time you get it. Apparently 90% of women in France have it by the age of 21 - maybe not quite that high over here but you get my point. :)

teaandchocolate · 20/05/2013 14:48

Thanks Sqiuz but ironically I hardly ever garden! Only about once a year when I do these blasted pots. And never had a cat! But not much I can do now so will raise it when I see the consultant (who no doubt will think I'm totally neurotic!!). I think that's it now I'm just going to worry constantly. Although keep telling myself I'm in a better position than if I still wasn't pregnant! Could do with a glass of wine though..... Grin

squizita · 20/05/2013 14:51

Awww don't worry! Most of us have had that thingy when we were kids anyway off of playgrounds etc'. Flowers

butterfly86 · 20/05/2013 17:43

Hi Tea sorry for the late reply been so busy, congratulations! I know you are nervous but right now it is fantastic news!! Keeping everything crossed for you :) we've had a few bfp's on this thread now hopefully this is a good sign for us! When do you think you will get a scan? Hopefully not too long. I soooo hope it works out for you.

Yes the reason we can't ttc for 3 months is the wedding, by the time it comes around we will have had a 6 month break so I hope it will have been worth it. Realistically we could start ttc in a month or so and I would still get away with it if I fell pg but I don't want to mc again before or around the wedding I just want to have this little bit of happiness and not tarnish the memories. Yes we have booked a honeymoon we go a couple of days after the wedding I had thought I could potentially get pg immediately after the wedding but I've calculated all the way to August and af is due mid holiday :( so I won't be fertile I know I'll only have to wait a couple of weeks but I'm really chomping at the bit now! I'm currently using opk's ready for progesterone test, thought I was ov at the weekend as had gallons of cm (tmi) but haven't had a smiley yet! On cd 16 now I would normally ov on about day 18 so could still happen yet, accupuncturist is trying to bring ov forward to lengthen luteal phase so it could have happened before I tested or might not happen at all! Why is it all so bloody stressful I could scream at times.

Daisybell1 · 20/05/2013 21:30

Tea, please don't worry about toxo, but you will be fine I'm sure.

Although they say that you're likely to have had it if you have cats, I'm becoming convinced its actually quite hard to catch. EG I used to be an archaeologist, I have cats, and although I mc'd during lambing, I have had one successful pregnancy though it (plus last year I didn't take any precautions) and I haven't had it.

From my research it seems that cats also only get it once in their life. They are generally infected when they first start catching critters, and its only the poos which are generated during this first infection which are dangerous. And they only become dangerous after about 5 days. So I think the window of risk to catch it from gardening is tiny.

I don't want to play down your fears, and the toxo blood test is easy to get, but please don't fret too much.

Bakingtins · 20/05/2013 23:09

I think toxo is hard to catch too. I've been working with sick cats for 15 yrs, I garden, I'm not over fussy about washing fruit/veg, I eat meat, and I am still not sero positive.

squizita · 21/05/2013 07:50

Angry Getting cross as I STILL have no letter from the clinic. I do have a date, just no letter. Makes me a bit paranoid!!

teaandchocolate · 21/05/2013 09:49

Squiz can you ring the clinic and chase them a bit? I'm sure its just slow administration which is so common with the nhs. Maybe just get them to verbally confirm the date.

Baking & Daisy thanks so much for your reassurance. I'm just so bloody paranoid about everything. There are risks everywhere and I'm going to go insane if I stress about them all - which is highly likely!! New one is I don't think I ever had a measles vaccine. Nice of my mother to mention it now - not told her I'm preg again. But there's nothing to be done now anyway and as I'm planning on hibernating for next few months hopefully I won't meet any infected people!

Butterfly sorry you're feeling so stressed. It is crap isn't it. Just try and enjoy this exciting time and make the most of time, just you and DH. I know its hard though as always at the back of your head. I recommend lots of champagne from now until the honeymoon!

Baking can I ask you about the progesterone and folic acid? I'm taking the pessaries and using them vaginally but find they really irritate me. Didn't get this until about 10 weeks with DD. do you know if using the back entrance is as effective (sorry to be so crude!)?? Also I suddenly thought maybe I should take high dose folic acid too as have had chromosomal abnormalities. But what's the dose? And is it too late now? Obviously I'm taking a normal amount and have been for over a year.

I rang the consultant yesterday and he's going to do a scan in the next couple of weeks. Kind of dont want it as hate going to the EPU and getting bad news and sympathetic looks. Find it so stressful there as its always busy and late and awful and I get SO nervous for scans. But especially as I'm taking progesterone I want to know sooner rather than later if it goes wrong.....just crossing everything that it works!!!

Bakingtins · 21/05/2013 12:51

HI Tea -The leaflet with them (I have Cyclogest) says use either. Haven't tried the up the bum route! I do wonder how effective they are as they seem to disintegrate pretty quickly, though the instructions says this is ok.
The high dose for folic acid is variously quoted as 4mg or 5mg. I'm taking 10 of the normal tablets + there is 400 mcg in my pregnancy supplement, so 4.4mg altogether. It's in the can't hurt category - it's supposed to help with neural tube defects and placenta formation - has to be worth a try.

squizita · 21/05/2013 15:39

tea Thanks - have rung and they know I exist :) and have done that 'slightly paranoid polite woman' nagging thing to ask for a second copy of the letter to be sent.

Also went to hospital for blood test (HCG taking aaages to go down) and they suggested I sign up for TABLET research next time I TTC. Which I am very happy to do because I am lucky I have savings ... so unusual treatments can be sourced if NHS ones don't work ... but I feel so bad for those who can't - more than happy to help get these new treatments agreed for the NHS!

PicardyThird · 21/05/2013 15:45

I'm now taking 5mg folic acid plus the usual pregnancy multivits, so 5mg + 400mcg. My gynae said the body just gets rid of what it doesn't need and so it's perfectly safe.

Agree with toxo being hard to catch, esp via soil/cats etc. The main way people catch it is from eating raw and undercooked meat.

Low today. Going in an hour or so for my post-ERPC check. Battered, bruised (literally - still have heparin bruises around my navel Sad ), heartbroken.

teaandchocolate · 21/05/2013 16:37

Picardy I'm so sad for you Sad. I hope you feel a bit better after the check up. How are you feeling about trying again? Do you have anything extra you can do next time?

Thanks everyone for the folic acid info. I've just bought some and will take an extra 10 tablets (!) although thinking its probably a bit late really but can't do any harm. Went for some acupuncture earlier which has made me feel much calmer and acupuncturist was really positive - although I wouldn't let her talk about due dates and whether I want a boy or girl Hmm.

Squiz I am also that nutty neurotic woman who tries to harass everyone politely. Annoys me having to speak to anyone about this though. Yesterday the consultant's secretary asked if it was my first pregnancy!! Even privately they don't seem to have a clue...

squizita · 21/05/2013 16:47

So sorry to hear you've had a distressing day of it Picardy. The follow up appointment is so upsetting, just extends it almost until you are 'finished'. Ugh hate it. :( I went in (for bloods to confirm HCG down) today too, horrible I was there in the waiting room - the staff 'knew' (I am a familiar face for the wrong reason down the EPU) but no one else did. Horrible appointment. Just glad it's over.

Tea What is it with medical receptionists/secretaries!?! Why on earth would anyone book a private MC/Gynie appointment for their first pregnancy. FACE PALM. It beggars belief!

PicardyThird · 21/05/2013 22:19

Squiz, and thanks all. Appt was expectedly grim. Bleeding not quite tailed off and we have to wait until then to ttc (which answers your question, I suppose, tea - just want to crack straight on this time, although we have taken breaks after mcs in the past), had blood taken, urgh. I do feel well cared for - she looked after me last pregnancy as well (am not in the UK, everyone has 'their' gynae here) and she does give me the feeling that she actually cares how things go for me.

We are having genetic analysis done on the baby and we may be looking at genetic counselling. I feel quite weird about going there, tbh, but I suppose we want knowledge, info, to put the various parts of this puzzle together.

squizita · 22/05/2013 08:32

Oh yuk Picardy been there, always that much grimmer when you're still having physical symptoms. Genetics might bring you some answers - if there was a genetic reason it means the treatments you're being given are still working, but sadly if it was a chromosomal loss this time (which cannot be prevented)? Which might help psychologically when you're pregnant again.

I got my very long questionnaire from St Mary's yesterday. Didn't fill it in: have half term next week want to sit down with my notes and hospital discharge letters etc' and do it really thoroughly. I will make up a folder with everything in it (local hospital said St Mary's like that kind of data, helps them test for the right thing). I also had a beer and some blue cheese without feeling crushing guilt and regret: as I know no TTC for 2 months as they want to see me not preggers, I am determined that whilst staying the right weight and healthy, I will be upbeat and not constantly think "If I was still pregnant I would not eat/wear/do that..." :( Which is a bad habit of mine. I went teary eyed in Primark looking at skimpy vest tops... because I could fit an 8-10 Grin NUTTER LOL!
Well now I am determined not to feel sad and barren I will think me not being pregnant is something positive I am doing on purpose so they can test me for APS and so forth. These months of AF will help me keep a baby in the future and I will have a glass of wine and eat a pink steak and dye my hair, in the hope that their famed 70% chance means there's a 70% chance I won't be able to do any of that shortly after my tests... for 9 months. Grin

squizita · 22/05/2013 08:34

Picardy sorry just realised all my sentences up there didn't make sense. Too early in the morning! Hope they do make sense... Flowers

PicardyThird · 22/05/2013 08:56

They make perfect sense, my love.

I am finding a sort of double-edged comfort in the 'forbidden-while-pg' things as well. Went to a friend's birthday party last Thurs, two days post-ERPC. hadn't wanted to go but knew friend would be caring and sympathetic. It was fairly sedate throughout until she got out a bottle of wine at the end and we ended up singing east German agitprop songs Blush

Sort yourself out with lovely stuff (coffee, cake etc.) for the questionnaire-filling-in.

PicardyThird · 22/05/2013 08:59

Actually, here's my positive thought for the day, while I have it. For non-music-geeks, a Picardy third is a note that modulates a minor key to a major one in a chord at the end of a phrase or piece. You know, that sun-coming-out-from-behind-the-clouds moment. I didn't choose this name with that in mind, but I think it is a comforting thing to hold on to now - that hopefully we will all have our major-key ending.

squizita · 22/05/2013 09:16

:) A squizita is a type of little bun. Which, following tests, is what I will hopefully be baking in the metaphorical oven!

PicardyThird · 22/05/2013 10:04

Smile Smile