Late Miscarriage - What tests did you have?

[SweetPea99]

Hello,
This follows on from Hope4Future's thread but I wanted to make the question very specific.

We went to our 20 week scan in May and discovered that there was no heart beat. Our baby had died about 2 weeks before (when I thought that the sickness and nausea had finally started to go ), I had an induced labour and finally delivered about 16 hours later.

We were told that post mortems rarely give any results (?) so our health authority doesn't do them. The only test we had was a genetic one, which showed that she didn't have any chromosomal problems. She was also exactly the right size for her dates.

Since then we have not been offered any tests or follow up, although the consultant said that he would see us at 15 weeks in the next pregnancy to swab me for infection. I have since spoken to the miscarriage assoc. and my GP who both seemed a little surprised that no tests had been done. The doctors seem willing but not well-informed. I don't think the consultant was a proper baby guy because the lady he saw before me was about 90!

What I need to know is: What tests should I have? What should I be asking for? Has anyone gone private?

I am now thinking about ttc again, and it has really brought it home to me that I cannot just sleep walk into this hell again. Thank you for any advice you can give.

[TinkerBellesMum]

I just reread that, I didn't know about the Downs test, Ill put that to APLSUK. It's a good reason to turn it down.

Anyway, are you feeling like a pin cushion yet? My legs are bruised and I hate going to the hospital cause I know there's going to be loads of blood taken! That reminds me, do you faint a lot with bloods?

[Hope4Future]

Hi

Just reading about the APLSUK group. I was wondering if anyone knows of a link between APLS and the antigen marker HLA B27. Not being a scientist, I'm not sure exactly what the deal with this is, but it is indicated in several auto immune diseases, one of which is iritis (eye problem) which I am prone to due to having this marker. I was wondering if there is any link between the two? I haven't heard from the hospital since losing my baby at 16 weeks. Have been told I should hear about appointment soon, but I haven't been asked for bloods or anything- do they take your partners bloods too?

If worst comes to worst and I am denied further tests, does anyone know if I can just contact a clinic and get tested privately? I really want to rule out everything possible before trying again...just to give it the best chance

[TinkerBellesMum]

As I said before, it's linked with everything, so it could well be. Are you under an immunologist or rheumatologist? If you're not given a full LAC screen then get it done by them or get your GP to refer you to one. I'm sure if you come to the APLSUK group they will have some ideas.

My partner wasn't tested, but I guess that may have come into it if they hadn't found something wrong with me.

[Hope4Future]

Thanks for your help. I see an opthlmologist just because its an eye condition, but people with HLA B27 can also get lots of nasty things like spondylitis, reiters syndrome, arthritis, the list goes on. That said, I think about 8% of the population have HLA B27 in their genetic makeup, so may not have anything to do with it.

Sorry for my ignorance TinkerBellesMum, but whats an LAC screen?!

[TinkerBellesMum]

Lupus Anti-Coagulant, it's the name for the full range of tests.

Rheumatology covers autoimmune diseases, even when it's nothing to do with the joints, which is why I asked if you are under one. It's worth asking your GP if you can see one if you are worried about it being a possibility.

[sadminster]

"I got a high downs result with the DD I lost at 20 wks which I read can be due to Hughes syndrome/failing placenta"

I had this too - 1 in 16 chance, I was 24 - I declined testing in subsequent pregnancies.

Aspirin alone didn't work for me - miscarriage dr (Ms Evidence-Based-Medicine) put me on 150mg of aspirin but refused to prrescribe clexane (that was after mc number 5 (twins)). I had a complete strop & the high risk obstetrician prescribed the clexane (ds was fine - born at 38 weeks). This time I didn't have access to the same dr, only had aspirin & a bad outcome. Some women only test positive in pregnancy & tbh with a history like mine lots of drs will treat without evidence of antibodies.

I assume LAC is lupus anticoagulant?

I have my consultant appointment on September the 9th, GP this Friday & Silver Star at the end of September. I'm still not sleeping & am mentally, physically & emotionally exhausted. Feeling quite depressed.

[Hope4Future]

sadminster

what you have been through is truly awful, but please try and look on the positive side, in that you are doing everything you can and that's the most anyone can do. You sound like you are going to be in the best possible care with Silver Star, so please try and stay positive, easier said than done I know.

[SweetPea99]

Sadminster, [hug].
Agree with Hope - you have every right to be exhausted and depressed, you have been through so much. It sounds as though if you are properly treated you have a good chance of a positive outcome in the future? I know that doesn't help with the babies you have lost, and your outlook at the moment. You must be feeling very bitter.

I am so fed up of hearing 'every pregnancy is different' and 'every woman is different'. Can that really be true? Or is it just that there is not enough funding to actually do some research?

Hope - I posted this same question on the MC Avengers thread in 'conception', and a lady called Kate gave lots of information about the tests she had, which included the LAC ones I think. It might be worth taking a look?

Hugs to all.

[SweetPea99]

I have copied the messages from the other thread, the following is from Kate. I'm not suggesting it's a good idea or bad, just adding the information to the mix!:

Sweetpea re private tests, I've just been sorting out some papers and I found the letter from St Mary's Paddington about which tests they offer and the charges, thought you might be interested (and at the charges!) Just don't ask me what they all mean! Here goes:

First Consultation: £200
Follow-up consultation £150
Cycle monitoring £480 per cycle
Chromosomes (male & female)£171 per person
Day 2 LH/FSH £28
Testosterone £35
Rubella screen £45
Full Blood Count £28
Blood Group £28
Fasting insulin/glucose
Pelvic ultrasound scan £172
Antiphospholipid Antibody tests x2 £100
Prothrombin Gene Mutation £100
TEG (thromboelastogram)£50
Factor V Leiden £100
Activated Protein-C Resistance £60

So all in all an easy way to spend a LOT of money without even trying! The FBC, Rubella, Blood Grouping, fasting insulin/glucose I had done by my GP - for free !

[sadminster]

Argh ... one second trimester loss means that you should be referred to a miscarriage clinic. We had our first second trimester loss in mid-Novemeber '05 & were seen in clinic at the beginning of January '06 ... as Sweatpea says it is so easy to spend a fortune.

The mc clinic did these tests for us:
Chromosomes
Day 2 LH/FSH
Testosterone
Rubella screen
Full Blood Count
Blood Group
Fasting insulin/glucose
Antiphospholipid Antibody tests
Prothrombin Gene Mutation
Factor V Leiden
Activated Protein-C Resistance

I had all the chromosome, clotting, glucose & infection screen repeated on delivery suite just after Toby was born.

They were going to do the cycle monitoring & pelvic ultrasound scan but I got pg with ds before we got a chance. Also did the full thyroid screen & antibodies.

In my experience it was getting treatment that was hard not so much the investigations. I paid for a HSG privately (£300 ) and NK/cytokine testing (£800 initially then £300 for the repeat ) because the NHS wouldn't offer them .. I've never had the thromboelastin test. I had dexamethasone & IVIg (£1300 a go) for anti-progesterone antibodies & slightly raised NK activity in my twin/IVF pregnancy (that miscarried) but with my ds (next pregnancy) I didn't have IVIg or dexamthesaone but self prescribed (shoot me now) prednisolone for the first 8 weeks.

Get as much as you possibly can do on the NHS - when you start down the private route (it is so much nicer because you aren't constantly fighting people) the costs pile up o fast ... we paid well over £17,000 for two pregnancies (one IVF) & our mc investigations/treatment before we had a live bay. I don't regret it for a millisecond but we could have saved money if wwe'd been pushier with the NHS.

[SweetPea99]

Thanks Sadminster,
I have an appointment with a gynacology consultant in September, so I will take that list (it was Kate that had those other tests not me) Our health authority (Hampshire) doesn't seem to have a miscarriage clinic. I don't suppose anyone knows otherwise?

Gosh Sadminster, £17,000. It's not fair is it?

[TinkerBellesMum]

Yeah, the whole disease can be diagnosed on evidence alone, as I said before the numbers don't mean much except that they may back up what the evidence shows. Unfortunately it's so rare for a disease to work that way that most doctors are too caught up in numbers.

BTW, the L is Lupus, but LAC has nothing to do with Lupus, just like anticardiolipins (part of the LAC screen) have nothing to do with the heart. Is it any wonder no one knows what's what?

I was told that if my daughter hadn't survived birth they wouldn't have tested me for anything and she would be classed as a miscarriage. Her strength in surviving birth meant that it wasn't something to do with her that she was born. They asked if I wanted a PM but I asked if it would do any good as she was born alive. They said that was their thoughts but they couldn't influence me. I told them to do a PM on me! Fortunately that's exactly what they did and they did get their answers.

[pwcbird]

Hi everyone,

This is really interesting. However, I don't know if anyone else is like this, I came home from the hospital just over 2 (29 July) weeks ago and had nothing. The only thing I got was a leaflet 'when your baby dies' from the nurse as we were exiting the ward. No tests (apart from the pm which we requested), no referral, no what happens next time, no call from a midwife or anything from my gp, no miscarriage clinic. Just left to get on with it (I'm Croydon, south London). I'm in a bit of a flux really. I think the only thing I can do is go and see my gp and ask. I was 22 weeks but the baby died at 17 so they think from sizing.

I'm full of so many emotions - anger that I've just been left and the only information I get is from what I look up on the internet and still feeling terribly upset. Had two horrible dreams last night about losing DS which I know is just a normal grief/bereavement thing (as mentioned yesterday) but it's so emotional.

Another thing (sorry to moan ) has anyone else had this - I had about a week when everyone left me alone and then last Saturday I had my sister in law with hubby and baby, I've today got a girlfriend coming to stay for 2 nights and next weekend (bank holiday) my mother in law is coming (though this was a long standing arrangement). It's all very lovely having people who care and want to be around but it's exausting and I feel I haven't got a second to breathe and just sit (what with having a toddler as well) and maybe have a tear if I want.

Anyway, rant/moan over. Sorry ladies. x

[Hope4Future]

Hi pwcbird

I have been exactly the same. I haven't heard a thing since leaving hospital 3 weeks ago. I did get a card with a number on it, which i have called for advice a few times, but apart from that, nothing. I am just waiting for the PM date to come through, but the whole investigations thing seems to take so long, and I just don't know where to start.

I know what you mean about visitors. I think people think if you are kept busy then you will get over it easier and with less emotional upset. But I think that crying etc is part of the process, which helps you to work through the grief. I think it is true you don't get over it, but you learn to live with it. I don't think I want to 'get over it' in the conventional way. Being pregnant was a wonderful experience, I'll always remember that, and feelings are gradually moving from sadness to fondness, because for a short time I was a mummy to beautiful little boy.

I think friends and family have kept me sane through this, and keeping busy is a good thing- I went back to work this week and that has helped too. I still spend a while before bed thinking things through, but it isn't getting me anywhere really, just going over and over the same stuff. I've come up with a million theories, but it could just be 'one of those things' in the end...so i am going to focus on the future

This forum has been a great help so thanks everyone.

[snowwombat]

hi girls,
it is a sunny morning here in sydney and I am feeling quite good- no work today and going away with DP and friends for the weekend.I am hoping distraction therapy will help us through Saturday when it will be 4 weeks since Oliver died. I am working up the strength to ring the crematorium and find out when we can collect his ashes.

Thank you so so much for your support, it is so important to have this forum where you have people who understand, this has been invaluable for me.

pwcbird and hope4future so frustrated for you that support and follow up has been non existant. A trip to the GP would probably be quite useful. Our only medical follow up is our date for PM result and my bloods, but we have a social worker who provides support and liaises with the clinic- invaluable.

sadminster how are you? I hope you are getting the support and hugs you need. Really really pleased you have an appt at Silver Star.

sweetpea there must be a miscarriage clinic either in hants or a tertiary centre they refer to- GP/gynae will know (and if she/he doesn't he can find out!)

tinkerbellesmum you are a font of knowledge!I will be making sure I check I have been tested for APLS

jellybeans did i read correctly that you ar pg again- how lovely!

welcome pickle78, sorry so that you have lost Ellis.Come join in any time- they are a great bunch on here.Late miscarriage is an awful term, not sure the australian one is much better- neonatal death or stillbirth for any babies born after 20 weeks.

mum2jai how are you doing? Delivered that feedback to your useless boss?

To everyone that has contributed to the thread, thank you so much for your support.To be in this situation is awful, and there are so many ups and downs. Just glad to find myself smiling this morning, for a little while at least I hope.

[mum2jai]

Thanks swombat. Definitely doing better - had a bit of time off work doing fun things including the theatre tonight and dinner with DH.

Still p** off on behalf of H4F and pwcb for useless aftercare. Definitely time to kick up a stink.

And v.happy for jbeans for expecting again.

Welcome p78 - sorry we meet in such sad circs.

But you know what, the thing that has struck me most on this thread is how incredibly strong and just b** amazing we are for living through these terrible losses, and functioning so well.

So well done us. We're fab!

[TinkerBellesMum]

Thanks snowwombat, believe it or not though what I know is a very tiny amount of the disease. It is a good disease to make sure you are tested for because when you have a late loss your risk is increased dramatically. Also, look to your family, do you have much in the way of autoimmune diseases (including eczema, asthma and arthritis) or just general ill health? The disease can suddenly appear in your family tree and an indicator is a lot of autoimmunity or sickness in your family. There is a link between Hughes and cancer (I don't know too much about it) that seems to suggest that Hughes is the body going over board trying to stop cancer, so (my thoughts) maybe a lot of cancer in a line can cause it?

[Hope4Future]

Tinkerbelles mum,

Sorry to ask this question, but is it more likely that APLS involved if the baby has died in the womb? My baby was still alive on the scan, it was my waters that broke which meant I lost him.

[TinkerBellesMum]

It can happen either way. The disease is thought to attack the placenta which means the baby can die before it's born or the placenta gets to a point where it decides to end the pregnancy as it can't continue to sustain the baby. Like you my baby only died because she was born, my waters didn't break so she was protected from passage but she died shortly after birth as she wasn't strong enough.

[Hope4Future]

Thanks TinkerBellesMum, I know it is a difficult question to answer, it is just something I have been thinking about...I am at the stage where I have no answers, so I am making up a million theories, then trying to discount each one. Silly I know but I can't help it.

[orangehead]

First of all Im so sorry sweetpea.
Im not too sure about late mcs, but I lost my first baby at 12 weeks and they did tests on the baby which showed my baby was normal. I am very surprised they have not done further tests at a this later stage. Sorry I have no real advice, sending you hugs

[TinkerBellesMum]

It's no problem, I like to find out what I can and use it to help people who wouldn't know about it otherwise.

To be honest it sounds like (as with me) the problem came from you (not that you were to blame) rather than the baby, so I would hope that they are testing you for everything they can.

[Hope4Future]

That is my assumption too, that the problem is with me or it was an infection. I am waiting for PM results, but have not had any tests on me. I went to GP who said I had to wait to see what PM said, and IF anything else needed doing then they would look at it then. To be honest, I would like all the tests regardless of PM results...I have read that quite often it is a combination of things, so if they found one prob with PM then that doesn't neccessarily mean there isn't another, IYKWIM. I'm scared they'll just say, 'it looks like it was a one off, no further action, go away'

It's so frustrating!

[godwin]

I just wanted to say how sorry i am that so many ladies have had such a sad time lately. I found this site by chance on google and feel so relieved, i don't want to sound insensitive but i have wanted many questions answered and feel that this site has helped me so much already. To briefly fill you in on my two years of hurt,sadness and emotional turmoil,We have 2 healthy sons but we had our first mc at 8 wks in Jul 06, tests came back saying it was just one of those early umexplained mc, but was a triplet pregnancy. Feb 07 we went for 20 wk scan to be told our baby girl had died, went through a traumatic birth had pm but no tests were offered on me or dh!? Pm revealed i had a huge haematoma which had caused placenta to come away. Jan this year, we went for 12 wk scan again we were told no heartbeat, had d and c and before we left hospital, we insisted on an appointment with consultant and all bloods to be taken. Appointment seemed to go as well as can be expected, nothing came of the blood tests everything was as it should be. Dh was not tested for anything!? It was suggested if we wanted to ttc again we must contact consultant asap, which we did when i found out i was pg again in may this year. I was on progesterone until wk 12, aspirin til 36 wks, sadly we only got to 16 wks scan(scanned every 2 wks) found out yet again baby had died. Gave birth fri 8 aug, feel devastated but having read others threads on here i know i am not alone. I have realised from here that i have not been tested for everything and now feel that i can go to my next appointment fully armed. Obviously we are having another pm and tests on placenta, one dr at hospital thinks it is def a proplem with my placenta and clotting but consultant won't commit. Anyway, sorry this is so long thanks for all the information on here and good luck to you all for future happiness.

[SweetPea99]

Hello Godwin,
Glad you found us, but sad to read your story . I hope that you get some answers and some help to carry you through. I hope this doesn't sound insensitive, but it is reading stories like yours that is making me determined to push for tests. If anything can be done (and I know that sometimes it can't) then it should be! Good luck with your appointments. xxx