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Original poster

Nhs Down’s screening results. Worried!

66 replies

user1485276096 · 05/05/2019 09:52

Here are my results

1 in 390 chance of DS

And 1 in 32000 of the 2 others.

As states on the letter they ate both low results. Anything under 150 is considered high. So I should be happy? But people have results in the thousands mine is 390 which isn’t high to me?! They said the neck measurement was fine on the scan then I had the bloods..

I’m pretty worried. I wish they never mentioned the number to be honest if it just said low risk I wouldn’t focus on the number!

Nhs Down’s screening results. Worried!
OP posts:
Passthecherrycoke · 05/05/2019 19:25

OP it’s fine. 1:150 is high risk for a reason. You’re absolutely nowhere near. Please try not to worry

Original poster
user1485276096 · 05/05/2019 19:42

I know, but can’t help to compare it to other people who have huge numbers. The internet is to blame. If I didn’t have the internet I wouldn’t of bat an eyelid

OP posts:
Passthecherrycoke · 05/05/2019 19:49

As the specialist midwife said to me (1:70) there are (very rarely) 25 year old women who give birth to babies with DS and no one picked up on a thing throughout their pregnancy. It’s a game of risk, and your risk isn’t high. Go for the NIPD if it puts your mind at rest, but it is £3-500 which is a lot for an almost certain negative.

PotteringAlong · 05/05/2019 19:52

My friend had a huge number. 1in 10,000.

Her son was born with Down syndrome.

The only way to know for sure is invasive tests or the NIPT

Passthecherrycoke · 05/05/2019 19:55

You won’t get an invasive test at those odds (neither should you) so you’re left with an expensive DNA test.

traveller11 · 05/05/2019 19:56

May not help, but my results was 1:40. Like you, I was fretting and worried pretty much my whole pregnancy.

But she's here now, and no DS whatsoever.

Please try to not worry too much, hopefully the private test will answer any further questions when you have it

snapple21 · 05/05/2019 20:00

If a little voice inside is telling you to get further screening, then do it. My nhs screening was 1:330 I was 23 at the time. The number concerned me also so I spoke with the screening team at the hospital. We decided to have an amniocentesis (this was 2014 - nipt and blood tests weren't widely available). My baby did have DS. If you can afford a blood test there are many options now in the UK, if you feel you will spend the entire pregnancy worrying. Message me if you want.

Passthecherrycoke · 05/05/2019 20:02

Oh god traveller I don’t know how you managed the anxiety. I immediately became more ill (morning sickness, gets worse with stress) and was almost incapacitated for the 2 weeks it took for my results to come back.

Original poster
user1485276096 · 05/05/2019 20:11

@Passthecherrycoke
You are right, I know my odds are still
Low and good. And the high risk is under 150.

I’m only 28 and healthy and like you said the chances are lower when you are younger.

I honestly do blame the internet for this because if I couldn’t google it I wouldn’t of batted an eyelid, it said low and my results are ok on the letter and I wouldn’t of known otherwise.

I don’t know how they come up with the results if they do all factors? My neck fluid number was 2 so normal too.

I’m getting the NIPT done as I’ll feel better.

I would never have the invasive even if they offered it if I was under the 150

OP posts:
Original poster
user1485276096 · 05/05/2019 20:16

@traveller11 1.40 is low however people to get 1 in 10 and 1 in 5.. and your baby was fine. But I understand it. Even though mine is 390 I’m still stressed. But my mum said what number wouldn’t I be stressed. I said over 1000 I wouldn’t be but I can’t guarantee that either. My other result was 32000 which didn’t worry me in the slightest

OP posts:
Passthecherrycoke · 05/05/2019 20:17

To be honest, I think they are going to have to rethink/ abandon the combined tests because they are causing a huge amount of anxiety. If your hormones aren’t on a measurement of 1, your risk goes up drastically. Add in other factors and it’s fairly easy to get to high risk (a close friend had a hormone reading of 1.03, 1 and 0.87. Because she is 40, this took her borderline high risk (I think 1:149) it was such a worry and is that really necessary on hormone results so close to the expected measurement? Before the combined test she would’ve come back far higher

Passthecherrycoke · 05/05/2019 20:18

Did they give you your blood results? That’s probably where the evidence for increased risk lies. They don’t tend to give them it unless you’re high risk though

Original poster
user1485276096 · 05/05/2019 20:20

@passthecherrycoke

I agree! My mum looked it up and said hormone value, sickness and various things can effect the results.i was sick an hour before the bloods lol. But yeah apparently if you have them done difffent days the results are different! Which is like that’s not good!

OP posts:
Original poster
user1485276096 · 05/05/2019 20:21

@passthecherrycoke
I haven’t asked for them.. but maybe I will but as you says they might not disclose as I’m not high risk. Honestly the amount of stress this has caused me isn’t healthy

OP posts:
treeless · 05/05/2019 20:23

Is NIPT the same as harmony?

Original poster
user1485276096 · 05/05/2019 20:24

@treeless yeah it is

OP posts:
Passthecherrycoke · 05/05/2019 20:27

If you’ve been very sick you may well have raised hcg. That will increase your risk

Original poster
user1485276096 · 05/05/2019 20:29

@passthecherrycoke yeah I was sick the morning of the test and felt sick a lot that week. So that night of effected it be interesting to do it with no sickness

OP posts:
Weathergirl1 · 05/05/2019 20:30

@treeless Harmony is one type of NIPT. There are several now with slightly different labs involved but they are all fairly similar.

Mayjane5 · 05/05/2019 20:36

I had a high risk for ds 1:66 decided to go for the NIPT it took just about a week for results and came back at 1:500000, I totally understand I was looking at all the results trying to figure it out, best to keep yourself occupied with other things whilst waiting for results, hope it goes well xx

redbedheadd · 05/05/2019 20:39

I was 28 and given 1:84 with a massive NT measurement --- very worrying. Has CVS and all clear, holding my beautiful boy now. Your odds are really low. If you're paying for the harmony you can find out the sex too!

Original poster
user1485276096 · 05/05/2019 20:53

@mayjane5 that is great.

I know some might think why is she getting the test as I’m not high risk.. but I need to know I know it’s a lot of money and they are telling me it’s low risk but I’ll drive myself crazy focusing on the 390

OP posts:
Original poster
user1485276096 · 05/05/2019 20:55

@redbedheadd

That is great news!

My measurement on the neck was 2 which is normal and they are saying the stat is low.. but I just can’t relax isxawful. I just wish they said low or high on the letter it would of said low and I’d of been happy with it..

OP posts:
Original poster
user1485276096 · 05/05/2019 21:35

@redbedheadd I just looked at my NT measurement which is 2.4 apparently normal. But then again I look at people who have lower amounts...

OP posts:
RedSheep73 · 05/05/2019 22:05

2 things.

My experience when I had a baby with a trisomy (not Downs, same idea but a different chromosome) was that it was really obvious on the scan. To me, your odds look fantastic.

And, if your baby did have Downs, would you do anything?