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Antenatal tests

Nuchal scan today - Down's Risk 1:162 - they say low risk, I'm confused!

21 replies

Kidneybeansmummy · 13/07/2011 16:29

I had my nuchal scan done today. I'm so confused by the result.

My adjusted risk looking at the scan and the blood tests is 1:162. With my DS (now 10 months) my risk was 1: 14000.

I asked the sonographer why it was so high and all she could tell me was that it was because of my hormone levels.

My free beta HCG is 160.30 IU/l equivalent to 4.124 MoM and the PAPP-A is 1.382 IU/l equivalent to 0.674 MoM, but I don't really understand what this all means.

The measurement at the back of the neck was in the normal limits 1.4.

The sonographer said that this rate 1:162 is considered low risk and that only anything under 1:100 is high risk, but this doesn't seem to be the case when I googled it.

Can anyone help me?

Should I have been offered further tests?

What exactly are the normal levels of free beta HCG and why else could they be so high?

Thanks.

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ghislaine · 13/07/2011 16:53

Hi KBM, I'm sorry your hospital hasn't been helpful.

PAPP-A below the MoM (the Multiple of the Median) and HCG above the MoM are both soft markers for down syndrome. That would be what has affected your results, despite the low nuchal fold measurements.

My understanding is that 1:250 or 1:300 is considered high risk, not 1:100. Can you contact your midwife or FMU and ask what further testing might be available (if you want further testing)?

The only way to know definitively about chromosomal defects (you should have been given a risk ratio for two other trisomies as well: T13, which is Patau's syndrome, and T18, which is Edwards syndrome) is through chorionic vilius sampling (cvs) or amniocentesis. It would depend how far along you are in your pregnancy which of these would be more appropriate. Another option is to have further scans at a later stage to look for other soft markers for trisomies such as heart problems or structural problems if you don't want invasive testing.

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misty0 · 13/07/2011 18:13

Hi kidneybeansmummy.

So very sorry you are having all this worry. It feels like the floors been pulled out from under you i know.

Try to gather as much info as you can from your MW and the hospital. Pester if you need to. If you can/do decide to have cvs i would like to reasure you that it is not painful, and only takes seconds. The results usually arrive within 2/3 days depending on your area.

Please let us know what happens - many of us here have had to go through what you are bearing now, and will be here for you if you need us for questions or just emotional support. Fingers and everything crossed for you, lovie, that all is fine for you xx

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tiokiko · 13/07/2011 18:41

Hi KBM, sorry you're feeling like this - I can really sympathise, I was in a similar position with very similar odds a couple of months ago.

Firstly, be aware that the high:low risk cut off varies throughout the country and depends which hospital you're tested in. I moved in January and the cutoff here is 1:250, whereas when PG 3 years ago with DD in Northamptonshire, the cutoff there was 1:150 and we didn't even get a 1:whatever number, just told high or low risk.

When I was v confused and worried about my results I got lots of help on here, but I also called ARC and found them incredibly informative.

They told me that most areas of England do use the 1:150 cutoff (so you would be low risk) but also explained the test in more detail which helped. There is apparently a lot of natural variation in the blood results, so some people have naturally higher or lower bHCG/PAPP-A - doesn't necessarily mean anything more worrying.

Some more information might help you make your mind up whether you want any further testing or not. You can have another scan to look for other markers eg: length of the femur, absence of nasal bone etc but these can be present/not present in babies with and without trisomies so wouldn't give you a definite answer.

The only way to get a definite answer is to have a CVS or amnio but there is a small risk of miscarriage - but most doctors doing it are incredibly skilled and well-practised and the chances of a problem are small.

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drivingmisscrazy · 13/07/2011 18:48

sorry that you haven't been reassured - it can be a very difficult time. Just to reassure you, the nuchal measurement is very good, but the bloods are off (you don't say how old you are, so that will give you a higher risk too if you are a little older). FWIW we had a nuchal fold of 2.7 and ended up with a risk of 1:11 - based on very high HgG (pappa was normal) and maternal age. Everything was fine, and blood results in particular can be quite misleading.

Having said that, the cutoff for the tests we did was 1:200. Hope you get the information you need.

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Kidneybeansmummy · 13/07/2011 19:38

Thank you so much everyone for all your support, I really appreciate it.

I'm 34, 11+5/40 and live in London.

My midwife has said to call her tomorrow which I obviously will for more information.

The other trisomies were fine, 18 - 1:14092 and 13 - 1:44432.

CRL 52.1mm

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Kidneybeansmummy · 14/07/2011 11:28

Spoke to my midwife this morning, who then got the head sonographer to call me and explain the results. Feeling a bit happier, particularly because she has said she will scan me again in 2 weeks to look at things like the nasal bone etc.

Just hoping and praying that all will be well, and will do some more research into amnio's.

Thanks everyone.

x

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tinij · 18/01/2022 13:28

Hi I know this was ages ago but if you don’t mind how was the baby and your future results? I’ve just been given the same reading and I’m a bit concerned x
Thank you, x

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Hollyfl · 07/09/2022 15:07

Hi Tinij. I am In the same situation you was and been given a 1/162 chance and was wondering what your outcome was if you don’t mind me asking.x

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CristinaNov182 · 07/09/2022 16:04

I don’t think there was any NIPT test in 2011, but now there is. It’s only offered through NHS if you get a high risk, but it’s non invasive if you don’t want csv or amnio.
privately they scan for more genetic abnormalities (than the 3 major ones NHS looks like) and they also tell you the sex.

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Hollyfl · 07/09/2022 20:45

Thanks @CristinaNov182 . The cut off point is 1/150 on the nhs and I’m 1/162 so I’m just deciding whether I should pay to go privately for the NIPT

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CristinaNov182 · 08/09/2022 08:19

I had high risk 5 years ago so I went privately. But I would have gone even if they told me low risk, bc I was 37. Now I’m 42 and went private again, while I’m waiting to see if they give me high risk again. Initially I was happy it will be available through nhs, but I went private bc they test something like 12 conditions instead of just 3. It’s very expensive but it gives you peace of mind. Low risk still misses cases. I guess it also depends on your age, I’d worry less if I was in my 20s.

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CristinaNov182 · 08/09/2022 08:23

My risk back then was 1:150 so borderline. The nuchal fold was fine and only one blood test was outside range, the PAPP-A, it was just below the normal range, at 45.

That, independently of DS risk, gave me risk of preeclampsia, low birth weight. And indeed my baby didn’t grow the last 4 weeks and was born small, but otherwise all good. I got extra growth scans during the last trimester bc of the papp-a.

your tests will all have been within range, maybe close to some limit, but still within limit? Or age could have influenced.

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Hollyfl · 08/09/2022 10:39

I am 34 so I know my age is a factor. my sister in law is pregnant and is the same age and has 1/6000 so in comparison it has made me panic slightly.
I have booked for the test on Tuesday as you said for peace of mind. I hope you get back good results.

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CristinaNov182 · 08/09/2022 17:06

Glad you booked the test. Better for the peace of mind.

I got back 1:77. They told me just for my age (42) it would have been 1:100. And I had one of the blood results, the hCG, came back outside range, 2.2. independently this also gives me risk of preeclampsia and high blood pressure, loo birth weight.
Nuchal and Papp-a fine.

now awaiting the nipt results.

good luck with yours too

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CristinaNov182 · 12/09/2022 20:48

@Hollyfl got back low risk from nipt. Hope you get good results soon too.

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Hollyfl · 13/09/2022 12:49

@CristinaNov182 that is great news!! I bet it was such a relief for you!
I have been today and the doctors advised me to have a Invitae instead of the Harmony one. My understanding is Invitae is sent to America and Harmony is in the UK. What one did you have?? Also I see in your earlier message about your hCG. I tried to ask a midwife if my levels were normal but she didn't give me a clear answer. Was you told anything over 2.2 was considered out of normal range? Mine was 3.34 at 13 weeks. All so confusing isn't it 😅

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CristinaNov182 · 13/09/2022 12:57

yes thank you, can relax for a bit.

Harmony can also be sent to USA. I’ve done the nipt both private and nhs.
for private I’ve called a few clinics and chose the one that uses a Uk lab, as they get the results faster (and less worried about transit, blood storage etc)

I think nhs uses local labs as well, it won’t make sense to send it abroad when there are labs in uk.

both hCG and Papp-a are good when they are close to 1. But they have a range, for Papp-a starts at >0.5, I don’t know what the upper range is. I don’t know the range for hCG apart from the closest to 1 the better. Mine was now 2.2 and was considered outside. The previous hospital where I had my first pregnancy (moved city) had these ranges printed out next to my results, but I didn’t get this now and I don’t remember.

I’ve also read hCG is increased when having a girl(though with my first it was around 1 from what I remember)

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Hollyfl · 13/09/2022 14:56

yes I wish they printed the correct ranges on results it would be so helpful. That may be what's pushing my DS risk then a higher hCG. I will let you know how i get on :) x

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Hollyfl · 26/09/2022 11:07

I just wanted to add for anyone reading this post. I had my results and they have come back low risk. I had NIPS (sent to America) which is pretty much the same as the NIPT (done in the UK). My doctor felt there was less inclusive results with the NIPS than the NIPT.

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CristinaNov182 · 26/09/2022 15:28

Congratulations, great news, vey happy for you.

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Hollyfl · 27/09/2022 13:51

Thank you @CristinaNov182 🙂

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