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when you have a missed miscarrige, why doesn't your body realise your baby has died? and does that mean its less likely to because of an auto immune problem?

(77 Posts)
whiteandyelloworchid Wed 05-Sep-12 22:13:50

a friend told me in a way its good if your body does not go into mc mode straight away as it means your bodys really trying to hang onto the baby

so what im wondering is
1, why doesnt the body miscarry normally? why does the body try to hang onto to the baby?
2, if you have a mmc, does this mean its lesslikely to be beacause of an immune problem[say your body attacking the baby]
because surely if the body was attacking the baby a mc would happen faster

cartoonface Thu 06-Sep-12 09:49:00

hi i dont really have any advice or answers on this. but my friend said near enough the same thing to me. i have had 2 mmc's. i have had bloods done to check my immune system and find out the results on sat so i guess then ill find out if theres any truth in it.
i guess otherwise you have to literally put it down to bad luck

Havingkittens Thu 06-Sep-12 10:08:41

Hi, sorry for your loss whiteandyelloworchid.

I'm afraid I don't know the answer to the first question. I have had 4 miscarriages, all of them missed miscarriages. I have no idea why the body doesn't naturally miscarry the pregnancies. I have, however had all the miscarriage tests available. First on the NHS, which showed no obvious problem - in their words "not just bad luck, because you've had too many for it to be bad luck, but we can't find the cause." And then I went to Mr Shehata for immune testing and have Very High NK Cells. I am on his treatment now and am very nervously almost 9 weeks pregnant (2 good scans so far).

We have a thread on the conception board called TTC or Pregnant on Prednisolone or Similar where there are many of us under his treatment. So far, since the thread started, 9 babies have been born, 5 or 6 due imminently and several more pregnant. Many of us have had missed miscarriages, so it's still something worth investigating. If you have time on your side (ie. you're not an old hag like me!) and a helpful and sympathetic GP you can get referred to him on the NHS at St Helier Hospital. That's where I started seeing him for treatment. I have ended up seeing him privately since for other reasons but it's worth trying to get a referral if you're alright waiting for NHS appointments and tests to come back.

cartoonface Thu 06-Sep-12 10:38:48

kittens im seeing mr s too. congrats on your pregnancy. how have u found the treatment if you dont mind me asking. are the side effects hidious?
orchid maybe u could try and get some investigations done or at least talk to someone about your friends theory it might help get things straight in your mind.

whiteandyelloworchid Thu 06-Sep-12 11:14:44

st helier? is that in jersey?
yes i think im going to talk to my gp about testing as they hospital wasnt interested in testing mesad
im almost 35, so starting to become aware of my age and the further screening it might require etcor the fact my eggs are gtting older etc

i just cant understand why the body holds onto the baby

cartoon face how did you get the testing via your gp? or did you have to go to hospital?
will you update me on the results of your testing?
best of luck really

Havingkittens Thu 06-Sep-12 11:27:28

No, it's not in actual St Helier! That's just the name of the hospital. It's In Carshalton, Surrey. Epsom and St Helier Hospital as it's known, which I thought originally was one hospital but it's two separate ones which is slightly confusing.

The testing isn't available from a GP. It's not something that's even readily recommended by the NHS, unless you have a particularly nice and helpful GP, which I was lucky enough to have. Even when I went back to UCH (my local NHS hospital) to their fertility clinic and mentioned that I was on the treatment they "poo-pooed" it. The NHS don't even usually send you for any form of tests to look into the cause of miscarriage until you've had 3 consecutive miscarriages, and then they only test for the standard stuff, which may well be enough of course if an over active immune system is not part of the problem. These mostly being blood clotting issues which stop blood flow through the placenta.

whiteandyelloworchid Thu 06-Sep-12 11:31:19

lol! well thats a bit easier to get to then!

right im going to ask my gp if she can refer me for testing and if she wont or can't
then i'll look into private testing.
as i dont really want a long wait either.

can you give me any idea what sort of tests i will need and the rough costs?

Havingkittens Thu 06-Sep-12 11:47:00

I'm afraid I don't know about the private costs of testing as I had them all on the NHS.

This is the website of Mr Shehata's private clinic which may give you some idea, or you can email Cheryl there who can get back to you with idea of prices.

I had most of my NHS tests almost 2 years ago so I can't remember what they all were, I'm afraid. A selection of blood clotting factors and then the immune tests. There are a couple of good books you can have a look at. "Miscarriage, What every woman needs to know" by Leslie Regan and "Is your Body Baby Friendly" by Dr Beer. Both are very insightful.

There is also a wealth of information on the Miscarriage threads on here, as well as the Conception board. Have a look for the thread I mentioned on the Conception board.

There is, of course, a chance that your miscarriage may have been down to a chromosome problem which is just simply random bad luck/bad science, and that no preventative treatment would've made a difference. If this was the case there is every chance your next pregnancy will be successful. This is, I think, the most common reason for miscarriage and why they don't do tests after just one miscarriage. Not that it makes it any easier to get your head around but there may not be a problem that causes it to happen repeatedly.

Best of luck. x

CaptainHoratioWragge Thu 06-Sep-12 12:00:26

Hello, I am very sorry to hear about your MC.

I have had two MMC.

The first one was picked up at the 20 week scan, the baby had died between 14- 16 weeks

The second one was picked up on rising HCG test not rising well at 4 weeks and I went on to have a MC at 7 weeks.

The advice I was given was that MMC are often down to HCG levels- these need to fall low enough for the body to understand that the pregnancy has ended.

So my 20 week one was still showing no signs of MC as my placenta was still working and producing HCG, so the body did not know.

The second one they could pinpoint roughly when the MC was going to start by taking bloods and watching the HCG fall to a level where a MC was likely- 2 days before it started they rang me and said 'your hcg level is now 7, so i think it will start in the next day or so' and they were right.

As far as i'm aware the immune system attacking the baby would produce a miscarriage when the HCG levels had fallen low enough for the body to miscarry, not necessarily more quickly or slowly than due to any other cause of MC.

I hope that helps.

cartoonface Thu 06-Sep-12 12:26:05

orchid my gp started to do some routine tests for me but as im impatient and wanted proper answers i decided to go private so far it has cost around £900 that was the first consultation and 2 sets of blood tests (immune system and a blood disorders one) the hormonal tests can be done by the gp. i think its £250 to see mr shetehata and then the tests are all diff prices. i still need a scan on my womb which i think is around £100.
he didnt recomend comosome tests for us but he could do them if we wanted they test both of u and its £250 each.
this all seems to be pretty standard. he will also put u on asprin, vit d3, pregnacare multi vits and omega 3.
after the tests have been done he will tailor make you a treatment plan.
hope this helps

whiteandyelloworchid Thu 06-Sep-12 12:30:23

right made an appointment with my gp for tue

what shall i say to her to try and get her to do the tests for me?
i just dont want to keep putting myself through this if we are nenver gonna get another baby at the end.

i wonder if they would test my hcg levels in a future pregancy or is theres anything else i can do to help?

i'm so sorry that we have all had to go through this.
its really unfair and sucks

captain, i see what your sayign i think, that it take s the hcg levels to drop enough for your body to realise the baby has died.
but why dont the hcg level drop earlier?

so do you think habivg a mmc makes immune problems less likely?
or do you think it makes no difference?

i shall check out tht website.

whiteandyelloworchid Thu 06-Sep-12 12:31:57

oh thanks cartoonface.
900 pounds is alot but not ridiculous ,although saying that i dont actually have 900 spare.
perhaps i can find it somehow

cartoonface Thu 06-Sep-12 12:36:27

i feel very much like you really struggling why your body doesnt realise i actually wish it had just happened rather than finding out at scans and waiting for it. its rubbish.
im lucky that my family are helping with the costs. im 27 so i know i have a lot of time i just dont want to wait or risk having anothe mc if i dont have to. im expecting to pay around £400 on sat at a guess then from there i have no idea how many further appoitments will be needed and then the costs of the treatment i guess it depends what 'drugs' he puts you on.

Havingkittens Thu 06-Sep-12 12:39:41

No I don't think that a mmc makes an immune problem less likely. I don't think it has any bearing on it at all. Like I said, all four of my miscarriages have been mmcs and I have an immune issue, and a high level one at that. It was the only thing that came up as any possible cause for my recurrent miscarriages.

CaptainHoratioWragge Thu 06-Sep-12 13:03:20

As HavingKittens says, i don't think the fact that it is a missed MC makes a immune problem more or less likely, the two aren't linked as far as I'm aware.

If you have had a MMC, you can get rising HCG blood levels done in your next pregnancy- the easiest way to do this is to present yourself at your nearest walk-in EPU when you get a BFP.

You would also almost definitely be allowed an early reassurance scan at the EPU (they would use the HCG levels to give them an indication of when things would be visible on a scan)

As far as the GP goes, you will be very unlikely to get any referral for tests if this is your first MC- I'm not saying that's fair, just trying to warn you of the way they see things. NHS referral criteria is 3 or more losses at less than 12 weeks or 2 at more than 12 weeks.

Is this your first PG and how far along were you?

whiteandyelloworchid Thu 06-Sep-12 17:44:19

no sadly not my first loss

last pg was twin pg, lost one at about 8 and a half weeks, then i lost surving twin, my son after he was born due to heart abnormailites

then this mc

so two mc one neonatal death

we do have a five year old healthy dd, but of course i was five years younger then

ive asked the brevement midwife to ask the counsultant if she would be willing to do tests on me, shes going to ask then get back to me

so really mmc doesnt really have any advantges over a normal mc then really does it

CaptainHoratioWragge Thu 06-Sep-12 18:12:23

Oh i'm so sorry to hear about your twins.

It takes such courage to try again when you have had such terrible losses, you are very brave.

I think your history means the GP must refer you, even if the current consultant says no to more tests.

Perhaps look around for the best place, rather than the nearest?

(the PM on my son revealed clotting issues, so i'm now at a hosptial ages away where they have specialists for this sort of thing, the local consultant didn't know a lot and even though i'm out of their catchment area, I explained to the GP why i thougth it was the best place for me and they agreed to refer me)

I don't know much about the immune factors, perhaps one of the MN on the thread linked above could help, but would your DD and the neonatal death indicate that it is unlikely to be immune (my impression, perhaps totally ignorant and misinformed is that if you have this condition you tend to lose all babies early in the PG??)

I'm wondering if the recurrent miscarriage unit at st mary's in london might be the place to push for- its a european centre for excellence and although i have no experience of it myself, MNers who have manage to get referrred there speak very highly of it. Worth a google, or starting a thread to ask for experiences, maybe?

whiteandyelloworchid Thu 06-Sep-12 18:24:49

thanks, yes it took alot of courage to ttc again and heartbeaking to end in mc.
my son had a pm, and there was no chormosone abnormailities, just his heart didnt form properly
there where no clotting issues in the placenta or anything, so perhaps with dd and my son, perhaps that does kind of rule out a clotting or immune problem?
the pathologist found my sons twin in the placenta, the twin that died around 8 and a half weeks.
and that twin was returned with my son and they were buried together.
although on my sons headstone it will onlt say my sons name, and at my sons funeral they twin only got a brief mention
but at least they were buried together
unless me and dh have something wrong with us like duff sperm or eggs or something?
i do have irregular cycles so i could have a hormaonal problem i guess

what would you guess the problem is?

i will look up st marys thanks

CaptainHoratioWragge Thu 06-Sep-12 19:28:24

Oh Whiteit must have been a horrible shock to find out about the twin from the pathologist, i'm so sorry about that.

i'm sorry i really don't know what the problem is, but I do think you need to go where the experts are and can go through everything meticulously and put the pieces together for you.

I know everyone is different, but for me it was quite a useful distraction to wonder about possible places to go/ tests etc. It gave me the idea that i could have some control over future PG's, possibly only an illusion of control, but it gave me hope & I needed that.

monsterchild Thu 06-Sep-12 19:33:37

I think the nomenclature is what is wrong. It's only "missed" because we now have scans to tell us that the baby isn't viable. Back before these, it wouldn't have been diagnosed as "missed", it would just be a miscariage at the time the process began.

I have had 2 mmc, and the name is what gets me. both times the mc began within a week of the scan. I didn't "miss" anything, the hormone levals hadn't dropped yet. I think it should just be called a "pending" or plain old miscarriage, but as it hasn't actually happened yet the medical folks probably need to have some kind of descriptor.

BTW, I am now 25 weeks pg with a healthy baby. Nothing to miss here!

whiteandyelloworchid Thu 06-Sep-12 19:35:02

sorry im not very good at explaining myself at times, it wasnt a shock about the first twin.
we had a scan at 8 weeks. found out it was twins saw them both with beating hearts
then at the routine 12 week scan found out one had died around the 8 and half week mark.
could have been a bit later i guess as ive read they shrink a bit after they die so they dont really know when that one died.
then as i was still pg with the the remaning twin, my ds, they just left the other twin there, didn try and remove it or anythign, said that my body would proabbaly reabsorb it.
when we had the 20 week scan, the other twin had dissapeared, and now we know where, disapperaed into the placenta.
so i knew it was twins from 8 weeks then i knew one had died but was still there at the 12 week scan

yes i'm oddly gettign something from researching and finding out stuff

i think even if they did a few basic blood tests on me it would help me somehow

thanks so much for replying and helping me

whiteandyelloworchid Thu 06-Sep-12 21:49:16

oh when i had the scan and found out about this mc.
they said my overies looked fine, was only an abdominal scan though

Havingkittens Thu 06-Sep-12 22:16:17

I'm sorry to hear about the loss of your son and the early loss of his twin. What a heartbreaking thing to go through.

I too found researching the various causes of my miscarriages gave me a greater sense of control and focus.

Just a couple of things I wanted to mention to help you make the right choice of where to go for tests.

The clinic at St Mary's has a great reputation. It is run by Leslie Regan, who I mentioned in my book recommendations. This is a great place to get a referral to if blood clotting issues are the problem but Leslie Regan is not an advocate of the NK Cell theory (immune issues) so you wouldn't get very far with that avenue. Some people, however, get an NHS referral to her and also see Mr Shehata privately for the immune testing and if necessary, treatment.

Mr Shehata has a theory that NK Cells level increases can be triggered by a full term pregnancy. ie. that they may well have been normal before and therefore why some people who already have had a child can then go on to have repeat miscarriages later on.

CaptainHoratioWragge Thu 06-Sep-12 22:20:03

* "would your DD and the neonatal death indicate that it is unlikely to be immune (my impression, perhaps totally ignorant and misinformed is that if you have this condition you tend to lose all babies early in the PG??)"*

Ah, thank you for setting me straight on that one, kittens. I had no idea you could go to full term and then have immune issues.

cartoonface Fri 07-Sep-12 09:32:06

orchid im so sorry to read your full story. i really hope you get some answers soon.

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