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Original poster

Help or advice following nuchal test please (45 year old)

31 replies

sheisold · 12/01/2013 20:32

Hello i am an older mum and following my nuchal today i am left confused and unsure

everything looked ok and i was beginning to relax until they actually discussed the results with me.

They classed me as an 'intermediate' risk and have advised me to go back in two weeks for more bloods.. I cant seem to find what the blood markers SHOULD be on line and would be grateful if someone could steer me that way

I suggested asking NHS for nuchal and comparing and she said 'you will just screen positive with them.

My nuchal fold was good and none of the bloods looked awry and although the sonographer was overal v positive she said they 'could have been better'

i suggested CVS and she implied it would be madness.

in a spin

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Original poster
sheisold · 12/01/2013 21:06

bumping

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mb2512cat · 12/01/2013 21:52

Yup, no wonder you're confused. There's either a potential problem or there's not! So you don't have an increased nuchal? If you don't, then while not a guarantee that all is well, is much more reassuring. If she can't be more precise about the meaning of the blood tests, then that's quite odd. And to say a CVS isn't necessary, hmm. Is this person qualified or an impersonator?! So have they asked you to go back for more blood tests in a couple of weeks? Are you 12wks? you could have a cvs privately or you may be able to find a private clinic that offers the maternit21 blood test which is pretty routine in the US. It can pick up on fetal DNA in the mother's blood and determine whether there's a risk of T21. You could ring ARC on Monday morning and explain what the hospital has told you and see what they have to say. They may be able to put your mind at rest. I do hope you get a good outcome.

ArtigeneAuberchoke · 12/01/2013 21:55

Did they give you your measurements and blood readings? If so did they express them as MoM readings? You want each reading to be as near 1 MoM as possible. If you have them I can help interpret them with you.

Original poster
sheisold · 12/01/2013 22:51

Thank you artichoke
I am stressing
Yes she gave me the marker levels and I can see what the issue is

Afp .65
Ue3 .58
Hcg .49
Papp a .53
NT .57

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Original poster
sheisold · 12/01/2013 22:54

i am almost 12 weeks and she has advised next bloods at 14 + which seems like a long wait with a lot of worry
nuchal fold was 1.1

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Original poster
sheisold · 12/01/2013 23:05

Mb thank you for your reply - I don't think I can get that maternit1 test in the uk

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ArtigeneAuberchoke · 12/01/2013 23:08

OK. A very rough rule is that a high Hcg and nuchal would cause concern and a low papp a would cause concern. I am less aware of Ue3 and Afp as my hospital did not measure them.

Looking at your results, your NT and Hcg are great. They are below one, which means they are below average, and that is good. My understanding is that the NT is the most reliable of all the predictors and your NT indicates all is good, better than normal in fact.

Your Papp a is lower than average and that may be what they are focusing on. Low Papp a can indicate problems with the placenta. I had low Papp a and later developed pre-eclampsia (baby and I were fine though as I developed it quite late in pregnancy).

Are you in London and could you afford private testing? If so I can highly recommend the Fetal Medicine Centre on Harley Street. It is run by Prof Nicolaides who is the doctor who pioneered the nuchal test. His clinic has amazing scanning machines and testing there takes into account many "soft markers" that the NHS ignores. I went there in both my pregnancies where I had poor outcomes after the NHS nuchal and they were so reassuring. In fact they now offer a new test called Harmony which is a blood test for the mother (so non invasive) that isolates the baby's DNA and is the most reliable non-invasive test yet invented. There is another thread in this section all about it (will try and link in a mo). I recently had Harmony after a 1:10 Down Syndrome score in my NHS combined test and I was told my risk was actually 1:10,000. It might be something worth considering.

ArtigeneAuberchoke · 12/01/2013 23:10

here is the link to the thread about the Harmony test. I have just read Mb's post and Harmony is basically the same as the Maternit21 test.

Original poster
sheisold · 12/01/2013 23:16

Artigene thank you so much - I am a zillion miles from London but am considering the harmony although dp is averse to any further testing and being much too over optimistic and is actually cross with me tonight for stressing out

My results on one sheet actually say screen negative DS risk 1:380 then adjusted with nasal bone 1:1000 but then on another sheet 'intermediate 'risk and I was sent home with vials for next bloods

Aagh!!!

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ArtigeneAuberchoke · 12/01/2013 23:23

Those sound pretty good risk scores for your age and a good NT plus a nasal bone is something to take considerable reassurance from. I know how hard it is one you start worrying. I see that Mb recommended the antenatal testing charity helpline run by Arc. They are great and I would consider giving them a call on Monday. I found their explanations of the tests very clear and honest.

You will see from the Harmony thread that it is now offered in Cardiff too. I am not sure if that is closer to you.

Original poster
sheisold · 12/01/2013 23:30

Arti I WILL ring that ARC on Monday thank you so much for the pointers that has been so helpful tonight ... I have had serious doubts about screening tonight as I've just felt worse

With my older children I would have welcomed a DS child but am more concerned now I already have children and given my age the impact it could have on them ... Gah !!!

Thanks again though you've been very helpful

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Original poster
sheisold · 13/01/2013 11:44

Shameless morning bunp

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LittlePoot · 13/01/2013 14:38

For what its worth, at your age, a 1/1000 overall risk is pretty amazing! I think your baseline risk (before a scan) is more like 1/40. I've never heard anyone class a result a intermediate-yours isn't high so I'd call that low. The other blood tests are probably just the standard ones offered to everyone on the NHS at about 15 weeks. Not much help from what I've heard-not very accurate at picking up problems, and much less accurate than your very good nuchal screen. I think the continuing risk is probably just because of your age, because as far a baby making goes, anything over 35 carries much higher risks for baby and mum (I'm in that older group too-didn't stop me!). So they'll want to be keeping a closer eye on things, which is a good thing. Do call arc tomorrow but please also take great heart from getting such a low scan result. My first nuchal scan gave a result of 1/4, and I was only 34. I'd have been a lot happier with a 1/1000.... x

TigerLily666 · 13/01/2013 18:21

I'd like to echo what LittlePoot said. I am 42 and was told that the baseline risk at this age for Down's is 1:52. My combined test risk came back as 1:246 and I was told this is 'low risk' and good for my age. So your results seem really really good. I've never heard of anyone coming back as intermediate risk?!!!

As I'm very concerned about trisomies, I actually opted to go for the Harmony test at The Birth Centre in London (have posted separately about this) and am awaiting results. Good luck with your pregnancy whatever you decide to do.

Original poster
sheisold · 13/01/2013 22:05

tiger lily and little poot thank you both so much for your input that is very re auring. Little poot - my test was private - not even registered with nhs yet but feel now like i want to rush and have another nuchal with them...

tiger i would go for harmony if i were nearer in a flash but my distance and work/family situation is prohibitive. Good luck with yours though - please let me know

i swing wildly from cvs to nothing.... dh and i have rowed as he thinks all is well and does not want me to have cvs and risk anything- he thinks as i'm unlikely to terminate it would be silly but i am a worrier and not finding this easy

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blondecat · 14/01/2013 20:40

Dear Sheisold

Just my two cents

Your test results are fantastic. Smile Yes, they don't give you certainty but they do give you pretty much as close to certainty as you can get.
I am 10 years younger and waiting for my tests next Monday - I would kill for such odds.

I don't know how you feel about termination but CVS and amnio have risks. The odds of something going wrong at 1:100 or 1:200 are much
Much higher for you than the odds of finding something wrong with the baby

I had a threatened miscarriage, following two lost pregnancies and I have already told my doctor no to both. I can't take these odds

And I am not sure i would act on either so it's all pointless. A risk to the baby and then an impossible choice.

Good luck and wishing you all the best

bamboozled · 14/01/2013 20:51

Important to know that with a cvs, the risks vary hugely as are very operator dependant. Worth going for a second private scan and blood tests of you can afford it. If you are coming to London, the Womens Ultrasound Centre in Harley Street is very good - I know 2 people who have been there for further scans to decide if they need to have more invasive tests..

Original poster
sheisold · 14/01/2013 21:20

thank you all so much
i did ring ARC today and they were great - have given me a number at barts to ring tomorrow for more biochemistry info

will keep you posted

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crikeybadger · 15/01/2013 17:12

At 39, my baseline risk was already 1:123 and my bloods were a bit awry so we have gone for a CVS as my adjusted risk was 1:77.

I think the risk of a miscarriage can vary between 1 and 2% mainly because it can be done earlier than an amniocentesis and thus there is a risk of miscarriage anyway at this stage.

But as others have said, your odds are extremely good...maybe check with your clinic as to the exact meaning of an 'intermediate risk'.

TigerLily666 · 16/01/2013 22:01

Hi sheisold. Unfortunately I am in the 1% who don't get a result back from Harmony. Not enough fetal DNA in the sample. Am travelling down to London on Friday (again) to repeat the test. This is just prolonging the agony.

Still don't know what to do myself about amnio. For what it's worth, the fetal medicine consultant told me that once you are over 14 weeks may as well wait for an amnio as the risks of miscarriage are less than with CVS.

Let me know what you decide to do ... and good luck

Original poster
sheisold · 17/01/2013 11:17

Tiger that is VERY stressful for you - I'd seen similar happen on American forums - what a pain ... How soon did they tell you?

Did you have nuchal first to make you want to go for harmony ?

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Original poster
sheisold · 17/01/2013 11:18

Waiting for an appt with local fmu - I was thinking about amnio being safer but its later??? My placenta is anterior too which is another thing stressing me re amnio

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crikeybadger · 17/01/2013 18:15

As I said previously, I think the amnio is only 'safer' because it is later (some women will miscarry without the procedure anyway around the 12 week mark).

I've just had a CVS and their rate was 1% and it was worth it not to have the extra two weeks worrying wait.

Had the call yesterday that the initial results are fine, so am v. relieved. Smile

Original poster
sheisold · 17/01/2013 20:48

Badger so pleased about the results!! What a relief!!

I've never heard the cvs miscarriage rate described like that before - I understood it to be 1% and amnio closer to 0.5% purely on the grounds that its slightly more invasive... I'm no expert though

I think earlier is definitely better

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Original poster
sheisold · 17/01/2013 20:49

Cvs 1%
Amnio 0.5%

Sorry should preview

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