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

(995 Posts)
orangebowl Fri 28-Dec-12 18:55:56

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!

teaandchocolate Mon 29-Apr-13 14:19:23

A tentative congratulations Baking! I know how stressful this is but you are one step closer to getting where you want to be and unfortunately its the only way to do it. The more bfp you get the more likely it is that one will turn into a baby!!

I'm afraid I don't know where you get high dose folic acid from. I got aspirin from the supermarket. For progesterone I ended up paying for a private prescription (have them all sitting in my cupboard still waiting to be used...).

Good luck!!

LandsN Mon 29-Apr-13 18:11:47

Baking that's great news I have everything crossed for you xx
I think you have to get that amount of folic acid on prescription I am not sure as I am just taking normal dose just think I remember someone saying that!!

Xxxxxx

butterfly86 Mon 29-Apr-13 21:45:59

Hi twenty yes I'm still here! I'm glad everyones popping back I was beginning to think you had all gone!

Baking congratulations on your bfp keeping my fingers crossed for you! smile

School 23+4 that is amazing hopefully more of us will get that far and beyond sometime soon!

The fact that we are not ttc is getting to me a bit now, sil had her baby a few days ago which stirred everything up but I was surprised when we went to visit, I didn't feel anything it was ok I actually felt a bit better afterwards I realised I don't want him I want our baby and the pregnancy is over now and that's the bit I struggled with.
Have now got it in to my head that I've got low progesterone I'm spotting before my period each month and when I looked up the symptoms I have nearly all of them, I'm just nuts! I've been to doc today and after a bit of a row with the nurse they've agreed to test me so I need to track ov this month and make an app for a blood test 7 days later. I'm most definately still as crazy as ever! smile

butterfly86 Tue 30-Apr-13 08:20:39

I meant to say yes Tea I'm still here said twenty by mistake! smile

teaandchocolate Tue 30-Apr-13 22:29:12

Butterfly if you are crazy then I probably need to be sectioned! wink I also thought spotting before AF was a sign of low progesterone but my friend had it (she was also having fertility issues) & none of the doctors seemed concerned about it. I remember finding a whole thread about it on here last year. I had it two cycles ago but the last cycle seemed ok so who knows. I don't really understand what effect hormones can have - I asked doctors how I could have had low progesterone if I had missed mc as I thought it would make me bleed but he said it was still possible that progesterone pessaries would help. I don't think they really know!!

I'm feeling quite fed up that I can't even get pregnant now and have heard 2 more pregnancy announcements this week. I even joined a charity committee to take my mind off things and give me something positive to do and now one of the committee members is bloody pregnant! Grrrrr

squizita Wed 01-May-13 09:55:39

Tea Progesterone seems to be something no one can agree on online and there are such scare stories, I have put it on my "no Dr Google" list!! I seem to have ridiculously ... like, 150+ at 5 weeks- HIGH progesterone combined with average HCG (unfortunately all this signifies is that all my failed pregnancies were uterine and started off OK and they think MC was chromasonal or sticky blood... tests will show soon I hope) would you believe and I spot before AF and spot and a 'fake AF' when newly pregnant. No one online seems to be able to agree whether this is dangerous, a sign of molar etc', but my 'real life' Drs claim it is unrelated to my MCs.

Bakingtins Wed 01-May-13 12:43:34

Getting really frustrated that there is no urgency at all for any doctors to reply to me. Had agreed with consultant that if I got pregnant before all results back, or if nothing found, then I'd go on 75mg aspirin, 5mg folic acid and progesterone pessaries as soon as I got a BFP. Have spoken to her secretary several times in the last 3 days but she hasn't got back to me, now trying to get GP to prescribe progesterone and sitting by the phone waiting for them to ring back....I know it's not important in the grand scheme of things but it is important to me, and I think they ought to get back to me particularly since I'm paying the consultant a fortune

squizita Wed 01-May-13 14:09:19

Baking shocking!! angry that is just NOT ON. Especially as it was agreed under a private paid-for service, if it were NHS it would be a betrayal of trust but this is also her not doing what was agreed as a paid service. Is it her secretary d'you think, are they inefficient? Hmmf you should get what you can on the NHS ASAP and be very clear with your consultant about the concern the delay caused you.

LandsN Wed 01-May-13 17:49:39

baking that's awful can you not go in and demand to see someone I hate doing it over the phone always feel like I am being fobbed off!!! it is so annoying because it always feels like no one gives a s**t when you are so desperate hope you get some answers soon hun good luck xx

twentythirteen Wed 01-May-13 18:05:07

Hi everyone, still here Tea! Just been very mopey and avoiding threads about ttc/mc. It's now MAY and I haven't been pg since NOVEMBER. I am trying to learn to live with it. I realise more and more when I look in the mirror that I look llike I've been through hell so am just trying to ease up on everything, sleep, relax.

As for ttcing we only gave a very half hearted attempt this month. opk's came midweek = bad timing. I'll know by the 11th or 12th but had to look in my diary just now to get those dates, I'm really not into it this month.

SO, what about the other ttcers? where are you all in your cycles, feelings about it all? Tea I echo your feeling fed up.

BAKING that is such good news and horrible that you are not being looked after properly. They SHOULD return your calls. If it were the NHS I'd say go straight to the CE, sounds drastic but it gets the job done. Can you email anyone over the secretary to see if it's her or the consultant you need to be angry about?

Daisybell1 Wed 01-May-13 20:35:19

Baking, that's awful. I agree with Twenty, I think you need to go up the tree a bit. If the consultant is attached to an NHS hospital, would PALS be able to help?

Squizita - I was wondering about progesterone next time, do I not want to go there?

And can someone talk to me about high folic acid doses too please?

I faced my pregnant best friend today for the first time since the MC. It was nice to see her, and, bless her, she only put her foot in it once. She said that next time I got pg at least I wouldn't be doing my professional exams at the same time. Yes I was doing my professional exam (and believe me getting the news in hospital that I'd passed was the best boost I could have at the time) but her implication was that the stress could have contributed to the MC. Is this the case? If so, I feel wretched. But I've been clinging to the belief that stress doesn't cause MCs, am I wrong?

In slightly better news, we've booked a holiday smile

Bakingtins Thu 02-May-13 08:18:34

Thanks everyone, I think I am sorted. Finally the consultant phoned and has confirmed doses she wants me to have, and the GPs after morning surgery call happened at 5.45 confused and she'll prescribe the progesterone. Shouldn't whinge really, the GP has been v supportive. She did say she'd only prescribe the progesterone 2 weeks at a time so it's not wasted if I MC again sad but I guess she has her budget to consider. She's a very down to earth "prepare for the worst, hope for the best" type, which I actually find quite helpful. Not overly sympathetic but she does what she can.
Consultant is going to scan me at 7 weeks, then I'll be seeing her at 9wks anyway for RMC review so I guess if I get that far she'll scan me again.

Daisy as I understand it, the combination of treatments I've been put on are empirical treatment for recurrent miscarriage. There is evidence to say they help in some cases where no cause is determined and none to say they do harm. The high dose folic acid is to prevent neural tube defects and to support placenta formation. The aspirin is the simple end of treatment for the clotting defects/APL. They won't prescribe clexane unless you have a diagnosed problem as it has more potential side effects. I'm a bit worried about progesterone supporting a pregnancy that has gone wrong and ending up with a later MMC, but I'll be having several scans so I guess that would be picked up. My gut feel is it must be something to do with my body and that I've probably 'rejected' potentially healthy beans, since I've had 3 at the same stage.

I don't think there is any evidence that stress causes miscarriage. Conversely, also no evidence that being positive makes it ok, but am going to try to take a leaf out of GPs book. Saying that, we are not going to France at half term any more (luckily it was a vague plan and not booked) as I don't fancy MC in a French hospital)

squizita Thu 02-May-13 10:30:44

GRRR Computer just munched my reply!

Daisy no there is NO evidence (MC association, NHS leaflets/website, Tommy's, Drs I have spoken to and Prof Regan's book all agree) that stress causes MC but it is a widespread (and somewhat sexist/political I suspect) guilt-creating old wives tale. I researched extensively when an at-home-well-off-mum friend put her foot RIGHT IN IT after my 2nd MC and gave me a lecture. Let's face it, working mums having 2nd kids are often run off their feet, woman managers, women trying again after multiple MCs all have babies under masses of stress with no greater MC rate- it simply doesn't make sense statistically that it would be a factor. It makes me quite angry that one, the way the Daily Mail media love it as it suits their agenda (alongside their 30+ = no eggs left bunkum!!).
I agree with Baking regarding progesterone on a personal level - having had a blighted ovum I know only too well it can 'prop up' a pregnancy never meant to be. However on the other hand if the bean IS meant to be it doesn't do any harm and might give it a boost?

Baking erm i find that 'wasted' thing a bit odd if you don't mind me saying? Preventative medicine is never 100% ... there is always a risk, doesn't mean it is 'wasted'. Do you pay for prescriptions? I cannot think why she can't prescribe it, surely 2 extra weeks of 1 routine hormone script won't break her bank ... even if she is very nice maybe ask again? What is proven is that TLC care does make a difference!

Bakingtins Thu 02-May-13 14:30:14

I think what she means is she doesn't want to give me 2 months worth now, then I MC again. So I can have 2 weeks at a time on a repeat. I think it is expensive! I'm not complaining, she could have refused and I'd have had to pay for a private prescription.

Has anyone used Cyclogest before? It dissolves to give a most unpleasant 'wet' feeling which is not going to help in the knicker-checking department! I also feel absolutely wiped out which is how I was in first trim with DS1. Maybe that means I had lots of progesterone with him and haven't had enough with the MC?

squizita Thu 02-May-13 15:09:03

Ah, I get what you mean, that's good she's offering you that. smile

squizita Fri 03-May-13 10:11:42

Update... Voicemail from hospital, not allowed to give results that way but they said the results of my molar histology was "good news" sooooo assuming they found nothing wrong. Cuz no-one would think molar was good news would they???

Bakingtins Fri 03-May-13 13:40:28

I would assume that means not molar, but why not just say that and avoid any potential for confusion. Hope that has set your mind at rest.

squizita Sat 04-May-13 10:50:14

They weren't allowed to give it voicemail, but I rang back and yes, no problem cells found. In fact they have told me I need only see my GP for follow up as they're pleased with my recovery and will send my results direct to the recurrent miscarriage unit as that will speed up testing/paperwork. What a relief.

LandsN Sat 04-May-13 13:47:01

That's good news squizita xx

GuppieK Sun 05-May-13 19:11:54

Hey everyone, sorry I haven't posted for a bit. I've been away for work then away on a short holiday with some friends... Hi fellow ttc obsessers in particular and everyone else too! Tea and Twenty - how are you both doing? Twenty, I think I'll be testing just ahead of you this month... on day 24 so can test in 4 days. I'm not that hopeful as didn't get a positive ov test at all and, like you, was feeling a bit half hearted about it this month. At least the sunshine is cheering me up! Hope you're all doing as well as you can be. Looking forward to reading everyone's updates. Glad everything's going good School and LandsN, and well done Baking. Got to be in it to win it, as Tea says?! (and I agree with). x

squizita Tue 07-May-13 08:46:26

Guppie: nice to hear you had a good holiday. Don't give up hope... it's sometimes those 'not trying hard' months where it all happens! My last BFP (although sadly not meant to be) occurred on a month I didn't think my cycle was working.

Quick question from those who have had testing at a recurrent MC clinic. I am expecting my appointment date letter this week (yay) and am dealing with the impatience by preparing What questions should I ask and are there any symptoms I should mention that might not seem significant but are (e.g. I have heard 'lacey veins' on knees can signify Hughs syndrome)?

I have read so much about all the possible tests, some factual, some 'through the grapevine' but now I am scared I will forget one tiny detail I should tell them (watch too much House LOL! grin ). I am trying to avoid the grapevine as you end up with extreme stories like drugs being mis-diagnosed and causing more problems to the mum etc'. shock Also trying to avoid all that political "the NHS are wrong/right re NK cells and progesterone" stuff because i have medical anxiety and the politics frightens the life out of me, especially when people who are v passionate either suggest St Mary's is 'no help' or private clinics are 'risky'. Wah!

GuppieK Wed 08-May-13 11:30:51

Just logged in for a quick moan from work. On day 27, had bit of spotting and feel sick in my stomach today, which is getting my hopes up. But had BFN yesterday morning when I got impatient and used a test I had lying around... Why isn't it straightforward?! When will I be able to stop agonising over every bodily symptom and not have a big crashing disappointment every month??! Aargh! (rant over). Hope you're all okay. x

teaandchocolate Wed 08-May-13 12:56:55

Hi Guppie! I'm the same & every cycle I have a few days of huge disappointment and crying when I get a bfn as every cycle I get my hopes up massively. I have no idea how you don't. It consumes me!!! But it could still be too early to test. When do you think you ovulated?

Squiz I don't really know about symptoms. I have desperately tried to figure out for myself whether I have any conditions recognised to cause rmc. I self diagnosed a dodgy thyroid last year but tests were all fine. So sorry I can't be much help. There are some conditions associated with clotting disorders which you can find on nhs website but loads of people have no symptoms (including School who's on this thread). I looked into nk cells too but can't find related symptoms except that its more usual for mc to happen quite early and for you either to have all mc or a DC then mc - & I don't fit that pattern. So far I've not found any doctors who have suggested anything other than bad luck. However I did created a document detailing all my conditions and treatment with dates etc & I printed off a few copies. Apparently this was useful <geek>

I'm 3dpo today I think. Already can feel crampy feelings. No idea why that could be but need to hold it together for the next 2 weeks...

squizita Wed 08-May-13 14:07:52

Tea thanks, yes I think I will just record symptoms and pass them on to consultants. I have had 3 early MCs but as far as NK cells (which scare me as I have heard of side effects to the treatment going v wrong, and some private websites set off my 'advertising to desperate couples' alarm) or anything else is concerned, it seems that 3 early MCs could be caused by ANYTHING. confused I seem to have a short luteal phase but very high PG, which is odd - am trying vitamin D complex as it can't hurt as is safe up to 100mg, might even out my cycle.

squizita Wed 08-May-13 14:10:03

Guppie - I know what you mean. When I was TTC I had a big bag off amazon. Otherwise the chemist's could have paid for their Xmas party off my too-early-POAS habit!! Grr it is so frustrating though, that limbo 2 weeks.

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