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Timing of NIPT testing

(15 Posts)
Zlata80 Tue 12-Apr-16 23:34:23

I am new to posting on this forum, so apologies if this is in the wrong place or something....

I am 35yr old and 9wks into my first pregnancy. I've just registered myself with maternity services at King's (London).

The midwife I spoke to at King's said I would be seen by them for the first time for my 12 week scan which would be between 12 and 14wks, and then from there they would see whether they would advise the Harmony test based on risk factors.
This worries me because if my appointment comes thru and it's at the tail end of this, I wouldn't get the results potentially until 16wks. I thought the whole point of the NIPT was getting advanced warning, and I thought it would normally be done at about 10wks. Also my age alone puts me in a high risk category anyway (altho I do understand that the NT etc are what defines the risk in this case).

Is it normal to be seen for the first time as late as 12-14wks? I thought I would have a booking appt before then at least.
Is it also normal to have the NIPT done so late?

Any advice would be appreciated. Don't want to miss the boat on this by just being too passive and accepting what I'm told.

Thanks heaps in advance.

strandedabroad Tue 12-Apr-16 23:44:58

I did the Harmony at 10 weeks. By the time my 12-week scan bloods came back, I already knew that the results were fine.

I completely agree with you, one of the main advantages of this test is how early it can be done.

I believe you can book and get a Harmony when you want? Mind you, I paid for mine - is this under the NHS?

MiniMover Wed 13-Apr-16 00:01:45

I had mine just past 10wks then scan at 12wks. But mine was private. Very few hospitals offer it on the NHS, Kings being one. There isn't problem having it later but obviously, if there's a problem then the earlier you know, the better.

FuzzyOwl Wed 13-Apr-16 00:04:02

10 weeks is the earliest but that would be if you were going privately.

pitterpatterrain Wed 13-Apr-16 00:06:37

I'm roughly 11 weeks. Still haven't heard anything from the hospital (not Kings) no appts despite chasing last week. Will be ringing again tomorrow.
First time around my first scan at UCLH was at something like 14 weeks (at a different one this time).

user1456516347 Wed 13-Apr-16 19:12:48

Hi there. I am also at King's. I have had a letter through for my booking appointment which is at 9 + 2 weeks and then a separate letter with my scan which was for 12 + 2. I had to change the scan as was away. When I called them up they said I couldn't move it any earlier as 12-14 weeks was best time for nuchal measurement. I am now having my scan at 13 + 2.

Have you tried calling up their appointments helpline? It's the number on the letter. I've called a few times and they've been helpful at rescheduling.

King's do the harmony test if you come back with high risk. One of only nhs hospitals in country! X

AveEldon Wed 13-Apr-16 20:12:23

The main thing with the NIPT is the accuracy - not the timing

Zlata80 Wed 13-Apr-16 23:15:33

Thanks for all your responses! All most helpful!

I wasn't sure that the Harmony test was on the NHS at King's or not, but was starting to suspect it might be the cause for only testing it if it's considered high risk based on the scan etc. I suppose I need to work out whether it is worth paying to go private for it to be done earlier.

user1456516347 - Interesting to hear see the timing of your appointments. I haven't had the appointment or any paper work through yet. I was expecting a booking appointment quite soon so that I could ask all of these questions, but the midwife I spoke to seemed to suggest the scan would come first. I think I'm going to try and call tomorrow to ask some more questions as the lady I spoke to the other day was not very forthcoming.

I'm just feeling a little at sea at the moment. Have heaps of questions and I'm keen to get started with these appointments so I can start asking them!

Thanks again!

AveEldon Thu 14-Apr-16 07:45:15

St Georges are also doing a NIPT test - called the SAFE test - but they will only do it for free if you get a high risk nuchal result
They will do it for a fee if you are not high risk

This may be an option at Kings

malvinandhobbes Thu 14-Apr-16 09:24:45

I had the Panorama test done at 9.5 weeks with no trouble at all. I was travelling overseas between weeks 10-12, and didn't want to wait until I came back for the harmony and other prenatal tests. I had it done privately.

Zlata80 Thu 14-Apr-16 11:32:57

Hi. I called King's again and spoke to someone who deals with the Harmony testing. He said they only offer it (for free) if your risk is higher than 1/500 based on the scan and other blood tests. He said my age alone does not put me in this bracket (from stats I've read at 35 my risk is about 1/250) because it might be raised or lowered by other factors.
I suppose I'm mainly concerned that the scan and other blood tests only pick up about 85% of Down's pregnancies (not sure about the stats for the other conditions) which leaves 15% of cases undetected. In realise that the NIPT is not perfect either but the combination would give a better idea, before deciding on the risks of CVS/amnio.
It's such a mine field and the more I read about it the more I worry!
We might spend the money and go private, which seems daft given that we'll be attending virtually the only hospital in the UK which actually does the test on the NHS.

FraterculaArctica Thu 14-Apr-16 22:01:06

I went private for the Harmony test in both pregnancies (my NHS hospital doesn't offer it anyway) and had it done at just over 10 weeks, with results back just after 12 weeks. I was also 35 in my first pregnancy.

I think the early results compared to the triple test & possible further testing if high risk are an advantage, as well as the greater accuracy. Indeed with DC1 that was our main motivation - we had our wedding at 17 weeks, and if we had had bad test results I wanted to be able to deal with that and make whatever decisions we had to make at 12-13 weeks, not a week before our wedding. No wedding this time round obviously (currently 18 weeks with DC2) but having done the Harmony once, it was the natural choice to do it again.

The wedding situation was fairly specific of course, but I think if we had had bad news it would have been generally easier to deal with a bit sooner down the line. Happily everything fine both times.

You should have a booking appointment before your scan (at least in my trust they won't do the nuchal fold and blood testing if you haven't already discussed it with the midwife at the booking appointment) so I'd chase that one up.

Zlata80 Thu 14-Apr-16 23:05:33

Thanks FraterculaArctica, I will chase up that booking appt. Would very much agree with not wanting to have to cope with all this stuff at the same time as your wedding!
I decided to phone St Thomas's Hosp today as it was a toss up between King's and Tommy's anyway for me.
They offer the Verifi test at a cost of £330. They will do it anytime after 10 weeks but strongly recommend waiting until after the combined test and associated risk calculation. This is because if you are deemed to be really low risk then you might not need to do it (I would want the additional peace of mind I think), and seemingly if the combined test results suggest high risk then they would advise going straight to CVS/amnio. On the other hand she said if the NIPT had already been done before the scan etc, then they won't do the risk calculation. Seems odd as I would have thought if you are collecting the info anyway (which they are) it wouldn't take much to do the calculation as an additional test to further confirm/deny the NIPT result.
Seems their general policy is similar to King's, in that both hospitals prefer to get combined test results before running the NIPT.

minipie Thu 14-Apr-16 23:32:11

I was at St Georges who were offering the NIPT test to women who got high risk at the 12 week scan.

I went private anyway and had the NIPT test at 10 weeks (results at 12 weeks). Reasons: 1) I knew I'd want the Nipt test even if NHS scan results said low risk (as you say, 15% are wrongly classified as low risk, that's not accurate enough for me) and 2) I wanted the result sooner.

Depends on your financial position too of course... Is getting the result 2 weeks early worth £400/500 to you?

FraterculaArctica Fri 15-Apr-16 08:50:26

When I had the Harmony done (at the Fetal Medicine Centre) they did the triple test as well, though they take additional soft markers into account when calculating the risk so the results are different from what the NHS would calculate with the same blood values. So I then declined having the bloods taken when I went for the NHS scan (as I already had all the results from the Harmony package) and they agreed this was sensible. They are wary anyway of giving people multiple different statistics as they think this will panic people.

The problem with the low risk/high risk thing is that of course it's just a continuum - it's entirely arbitrary that 1:150 is high risk. If I'd just gone for the NHS triple test and that had come back at say 1:300 I would have felt I wanted greater certainty that all was OK, but if you get a result of 1:150 do you really want to be proceeding straight to amnio? (as actually there's not much difference between those two numbers, they're the same order of magnitude).

You say you would want the additional peace of mind - this is a key thing I think. DH and I are both pretty anxious and risk averse people (and we are fairly sure we would have terminated for any of the three major trisomies) so we wanted to know, and the Harmony is close enough to diagnostic to give you that certainty. If you feel like this and can afford it, it makes sense to have the Harmony or similar as soon as possible, I think. If you're less anxious and prepared to deal with a greater level of uncertainty, you could wait.

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