Testing, testing, a nice support thread

(967 Posts)

It does seem that there are a few of us lurking who are in the middle of, want to know about or about to start tests.

I wondered if anyone was up for a general rambly thread with a bit of support and chat about it all. Or even a bit of a grump now and then about the general unfairness of it all.

So I'll stick my neck out, put the kettle on and plump up the cushions.

I think a lot of you probably know my story so I'll not put it up again.

hairyclaireyfairy Wed 10-Mar-10 23:46:10

Hi, I know your name and I sure we have spoken, are you on Wooly's thread?
I have just had my 4th m'c in the middle of testing which I got berated by the epu for !!
Have to go back in 6 weeks to see consultant, get results on the karotyping they did on my last m'c and see the consultant.Happy days.
Chocolate hob nobs do?

hairyclaireyfairy Wed 10-Mar-10 23:52:31

Duh, I knew I knew you, my brain is shrinking, soon I won't be able to talk.
How did you go on with your appt for the tests?
(ps, does'nt feel right calling you lunatic )

mumatron Thu 11-Mar-10 07:22:31

i'll join you. i've had 4 mc. i have had nightmare getting tests done on the nhs.

1st appt with consultant he refused to do the basic blood tests. i was lucky that the doctor on the epu who arranged my last erpc took blood and did some of the tests.

it was arranged for me to have claxane during next pg, but since then dp's sperm tests have shown low morphology and cons has decided that is the reason why i miscarry so will not prescribe me anything.

wasnt happy with that answer so am currently getting more tests done privately. its not cheap but def worth it imo.

where are you both at with your testing?

<<and i've just finished a batch of welsh cakes if you fancy>>

Hurray, thanks for coming!

Hairy, I have no brain left - don't worry about that. I saw your post on WoollyJo's thread and I was torn between posting and not so I'm glad you're here to have condolences. I don't like to keep posting on there so I'd always thought we needed a net to catch us that have fallen off that thread again. Equally feels rude calling you Hairy!

Am sure the EPU telling you off helped loads confused. What is karotyping?

Mumatron Hi & diolch yn fawr (sp?) for the Welsh cakes. <<expat debates getting the dictionary out to check spelling>> Consultants! Grrrr. They are the single most awkward beings in the entire universe.

What is claxane for? Am deeply ignorant of lots of meds. So annoying that they won't run tests because of one thing - if there's something else they can fix then surely that ups your chances.

I'm at the basic end of the tests - have just had the first lot done at St Mary's. They do seem to be more interested in dd2 (abruption) than the mcs which is fine with me but they're doing the whole run of tests anyway.

I have had another run in with my numpty consultant today. She's taken 3 weeks to come back and say she won't authorise the chromosome testing St Mary's ordered and to go to my GP. But it was them that told me to ask her in the first place. And we had the tests done yesterday and sent them off anyway. So we have no idea whether they will done or not. 'Tis a mess.

hairyclaireyfairy Thu 11-Mar-10 22:08:37

Hi Lunatic and Mumatron
Such a lovely idea for doing this thread, don't know about you two but I feel a bit in limbo atm, pregnancy threads upset me, so do lots of the other ones, tend to just look in on AIBU, special needs and here. Mind you the erpc was only last thurs so I am still hormonal I suppose.
Lunatic the Karotyping is to test the pregnacy to see if there was any genetic issues.
This was done during the erpc they also tested my blood too, will just wait on appt now and be very careful with dh, I get pregnant so easily it's just keeping hold of them that's the problem.
We have had the 1 st bloods then another m/c next bloods in 6 weeks.
How frustrated for you re the consultant, hope they do the tests, will you go back to the Gp and get her/him to clarify? Hope they get done with, the last thing you need is having to worry.
Mumatron, I hope you get some answers from the testing but dreadful you have to pay, they are not cheap either had a look at a link someone posted, what a nightmare for you.Have not heard about sperm having low morphology before, would IVF, ICIS ? be an option, sorry if that is a daft option.
Have either of you read the Lesley Regan m/c book?
Anyway, leftover pizza from pizza hut is calling me, so i'll go and stuff my face, screw the diet
Claire x

mumatron Fri 12-Mar-10 07:32:51

lunatic dai iawn for the welsh, must admit im not good at it myself. dd knows more at 5 than i will ever know.

claxane is a low weight version of heparin. i have previously tested positive for low protein s, that can cause probs with clotting. although my levels have varied quite a bit.

the cons i just paid to see told me alot about what they do at st marys. he said that even if all your clotting tests come back normal, more often than not they advise 150mg asprin from day 14 of cycle and claxane/heparin from bfp. if no bfp stopping aspirin on day of af.

he was also telling me that they have a special machine for testing blood that no other clinics use called a teg, for example, 10 out of 100 women will have all avail tests and find nothing wrong. out of those 10 women at least 6 will show problems using teg. very basically the machine has some of your blood in it then a weight on a metal wire is spun through the blood and it checks for the resistance. so if the resistence is high the claxane/aspirin should improve it. obviously its much more technical than that!

im trying to get my gp to do the rest of the bloods needed as it is so expensive to get them all done through spire. luckily we already had the karyotyping ones done. that saved about £300.

Hairy yes i read regans book. it was good, but i found it didnt tell me anything i hadnt already read on here.

we have already looked into icsi, and will defo go down that route if we need too. my nhs consultant is sure that the morphology is to blame for my mc's but the private cons said there is not one bit of evidence to support that. he doesnt think it will boost our chances all that much.

so at the moment we have been advised by both cons to get on with ttc and the private cons is going to prescibe the claxane as and when needed.

my next fight will be getting support through a pregnancy. i have never been offered an early scan even after mc 3 at 8 weeks. i have always had to kick up such a fuss. its not right.

anyway, need to go get dc's ready for school.

hope you are both well.

Evening - nearly time to break out the vino! I feel I've earned it this week.

Haven't heard back from the clinic so hopefully they are doing the tests!

Oh I know what you mean Claire about being in limbo with the threads. Lurking on pg makes me feel like there's a neon 'Desperate' sign over my head and I feel like a bad fairy on conception. And starting a new thread here each time stuff happens feels like attention seeking. I have to ask (but feel free not to answer) do you have a child with SN? Or is it a professional interest?

Have also read the LR book which was interesting and for the four quid it cost me on Amazon was worth a look.

Am so glad I've never had to have an ERPC - in that respect I've been very lucky. I think we also don't have a prob getting pg once I have my timings sorted out. Last but one AF was deeply odd and I think that may have been a v. early failure but didn't test. At the time I thought I was being a bit obsessive and mad but the last AF I had was so normal that it underlined the oddness of the previous one.

Mumatron My Welsh is hopeless tbh. We moved to England when I was about 10 and my grandfather was the last one with Welsh as his first language. The accent rears its head when I'm drunk, cross or with Welsh people.

Very interesting about the claxane - thanks. And I was particularly interested in the aspirin schedule. I'd heard on here about the teg but wasn't sure if St Mary's were doing that. I hope they are. The clotting issue and/or lupus tick an awful lot of boxes for me.

I can't imagine trying to deal with a private and an NHS cons at the same time - I'd be on the verge of a nervous breakdown. Is the ICSI the 'washing' process? Am v. ignorant about so much.

We are going to have the same issue about support in a pg. I cannot deal with the consultant I've been seeing as I have no confidence in her. But I really want to keep seeing my community midwife. They wouldn't scan me either when I had my last BFP (although the cons did do it in the end) and when I mc'd it was 5.5 days before they scanned me.

GrumpyFish Fri 12-Mar-10 21:47:37

Hello, can I join you too? We've an appointment to start tests this Wed, I feel a little bit of a fraud as have only really had 2 MCs (also one chemical preg just before the MCs, but as AF wasn't even late am just ignoring that one for my sanity)- getting tests done privately as don't meet the NHS criteria yet, but I just have a feeling that something might be up, and that things have changed a bit since I had DS (now 19 months). Not sure how far we'll go with testing at this stage, just going to see what the first stage throws up, if anything.

Shocked at your experiences of not getting support in pg - I have found almost the opposite here, within 24 hours of going to GP to report that I was once again pg after first (early, straightforward (as they go)) MC I had the local pregnancy support centre on the phone to book me in for an early scan (hadn't asked for one), give me a contact number to call in case of Qs etc. Was shocked that I seemed to be a "special case", but seems like we're pretty lucky to have this service locally.

hairyclaireyfairy Fri 12-Mar-10 22:22:07

Mumatron, shocking to hear you cannot get an early scan, devious tip for next time, take away a couple of weeks from your LMP, if they won't scan you till 8 weeks you get it at 6 iyswim?

Also with having the 3 m/c's can you reqeust to be monitored by the m/c clinic usually run in conjuction with epu, not sure how it works round the country there seems to be a real difference in care but that is how it works in some hospitals, 3 m/c's extra care.

Lunatic, hope the wine is good

Strange about your weird period,have you ever had that before?

In answer to your question I have a ds with severe autism and lots of other difficulties, he is nearly 9 and non verbal and bloody hard work but I adore him. I don't post too much on the sn boards, on another fab site for that.
Think having ds has made me a little bit more accepting of the m/c's don't think I could cope having another disabled child.
I did ask about going on asprin during the last pregnancy but was told no by gp and the m/c clinic so will be mighty pissed off if it turns out I have clotting issues.
Hi Grumpyfish, I completely understand why you are going for the tests it just seems a real shame that you have to have the 3 before you can get the tests on the nhs,although some trusts do offer it after 2. I moved trusts during my 3 m/c and found out they offered them after 2.
It is fantastic that you have got such good support as well from the epu, if there is one thing I have noticed is that some epu's are absolutely brilliant , others not.
Right think i've written a small essay here so i'll finish now.
Nite x

Julezboo Fri 12-Mar-10 22:47:59

*waves to lunatic*

Mumotron I am in wales too! Which hospital are you being seen at?

*waves to hairy too*

Bit of info bout me! I am 28, have 2 ds's one who was born at 30 weeks due to IUGR and ragged placenta and ds2 who was born after basic mc tests found I have factor V Leiden. I took fragmin and aspirin with him.

I have had 7 mc's

Just been referred to the shiny new recurrent mc centre in the heath cardiff.

<rant>
I called to chase up my appt this week and was told they hadnt received my referral from my GP, rung my GP who said they had sent it and they will fax it over to them, so possibly another 6 weeks grrrr
<rant over>

I have just embarked on studying to be a midwife! Which is exciting. I am sure i'll have a few wibbles along the way though!

mumatron Sat 13-Mar-10 07:26:48

hi grumyfish & julezboo*

*lunatic
icsi is where they take a single 'good' sperm and inject it straight into one of my eggs.

hairy i am trying to get a referral to new mc clinic in my area but no joy so far.

grumpy good luck with our tests. and i am very envy at having a local pregnancy support center.

julez im being seen by mr amso. see him in llandough and heath. have asked for referral to new mc clinic, but was told that there was no point as they would only do the same tests i already had done. i told the gp i really wanted the support the clinic would offer and she she just brushed it off saying 'oh your midwife will arrange extra scans' erm...no she wont, she just refers me back to gp, then gp refers me to cons who takes 3 months to get appt with!!

<<rant over>>

have you been seen in clinic yet?

mumatron Sat 13-Mar-10 07:37:54

pressed post too early, oops!

julez i has also just paid to see mr beattie at spire. he must be the loveliest doctor i've met.

having a really bad day. if my 1st mc had worked out the baby would of been due 13.03.2009 instead i spent that date in hospital having an erpc for my 3rd mc. so march 13th is not a good day for me! just feel so sad thinking about what could of been

Julezboo Sat 13-Mar-10 07:54:50

god mumatron thats sounds frustrating. Can you see a different GP?

It was the lovely ladies and DR Bahl in the heath EPU who suggested I be referred. I had basic tests doen about 4 years ago but have had 2 more mc since DS2 was born in 2007.

Not bein seen yet, still waiting for first appt. I need to chase it up again on Monday!

Thinking of you today x x

March is a sad month for me, 10th my nan died and it was mothers day at the time, plus her birthday at the end andI have had a d&C twice on the 31st. I mainly hide in march x

Evening all.

Hi GrumpyFish Sorry to hear of your mcs. I think that if your gut instinct is that something is wrong then you are doing the right thing getting the tests. They'll either reassure you or help you. Can I move near you? The idea of being offered a scan is a new one on me!

Julez was hoping you'd find us. Definitely worth chasing them up after the fax. When my cons was so useless St Mary's did say that they'd do what they could to get me in asap and they saw me inside 2 weeks. My goodness I'm sure it's going to be hugely interesting to do that training and see things from the other side. We'll know whose brain to pick now then!

Hairy Never had one like that. Two days late got spotting then stopped for 36 hours then got going slowly just like an mc. Normally they're bang on time and nought to 60 straight away. Sorry for TMI.

Can't begin to imagine how hard it must be for your and your DS. I think it's very honest and sensible of you to put your mcs in context like that. You do wonder if they find explanations that could have been picked up sooner whether you might go berserk at them.

Mumatron Thanks for explanation - sorry to be so dim. Why is it so complicated to get the people who work in the NHS to speak to each other rather than playing chinese whispers and passing the buck back to you. I hope today hasn't been too awful for you. There are some dates that you just can't forget sad

This is taking on dissertation proportions. I'm OK! A bit glum about the rugby and Mothers' Day is a bit bittersweet this year. I should have both my girls to cuddle. And we're on the countdown to my 40th now. I was supposed to be done with all this.

LFx

mumatron Sat 13-Mar-10 21:22:59

lunatic hope your ok. today hasnt been too bad. a few sad moments but i'll be ok. i have had worse days.

nice quiet night in with bottle of wine and takeaway. dp is out for the rugby and dc's in bed....lovely!

Julezboo Sat 13-Mar-10 21:58:02

lunati Hope your okay x

mumatron have been thinking of you today x

I am watching piers morgan and kim marsh is talking about losing her baby so sad x

mumatron Sat 13-Mar-10 22:34:28

julez i watched it too. very very sad. x

Hi,

Hope all OK with you lot.

Was a bit wobbly yesterday. We were invited to a neighbour's child's party at short notice yesterday and went along. Small do with several pg women there and I completely froze! I can't talk to anyone I don't know already. Used to be little Miss Chatty but now I panic in case they talk to me about anything baby-related!

Do any of you get this? How do you cope? I can't pretend dd2 didn't exist and I can't tell them.

mumatron Mon 15-Mar-10 20:11:16

lunatic i have the same problem, and it seems to be getting worse. so many people i know are pg right now. i find i cant keep making small talk and cooing over new babies. cant give any advice as i dont feel like i'm coping myself.

julez any luck chasing your appt?

i have an appointment with gp on thurs to see about doing some tests or referring to mc clinic. not going to hold my breath though.

Julezboo Tue 16-Mar-10 10:48:38

lunatic I'm fairly ok with babies and pregnant people, its the obviosu smoking pregnant people that get on my tits.

Oh and one of my FB friends who knows Dh really annoyed me irrationally. She went to the doctors at the beginning of jan with stomach pains, to be told shes about months pregnant, they took her for a scan at the end of jan, the baby was born last week, she litrally had known for about 8 weeks all in all how i would love yo do that! Rather than all the anxious waiting!

mumatron I havent chased it up this week. I will though. Good luck with your appt!

Sorry I've been so quiet girls and I hope mothers day wasnt too painful for you all, my boys and DH spoilt me.

Sunday night though DS2 temp shot right up and it has been up and down ever since, apart from not eating much he has no other symptoms just generally being whingy, clingy, cleeping through the day and waking up all night so I am shattered and quite close to tears today because now he is full of energy and I have ran out of steam lol!

Today we will mostly be in bed! I have loads to do though wahhh

Julezboo Tue 16-Mar-10 14:20:12

Quick update, have rung the heath and my appt is on the 1st April, nice of them to let me know wink

Julezboo Tue 16-Mar-10 14:37:59

Quick update, have rung the heath and my appt is on the 1st April, nice of them to let me know wink

mumatron Tue 16-Mar-10 15:11:28

hope youo ds feels better soon julez. not long until your appt. hope it goes okay.

Julezboo Tue 16-Mar-10 19:23:56

thanks mumatron DS2 seems worse today and the sickness came

I am exhausted, DH has to work late.

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