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High risk screening - Normal NT but high hCG, Low PAPP-A

(64 Posts)
SoozyWoozy Sun 15-Jan-12 21:06:59

Hello everyone,
I'm new to this board, so apologies if I'm posting in the wrong place!

I'm 13w pregnant with my 4th baby (6th pregnancy, first two were ectopic & mc). My other pregnancies went without a hitch, other than the dreaded SPD.

With the other 3 I just had a Nuchal as screening, and all were very low risk. My hospital now does combined screening so this time I had bloods done as well. My scan was apparently OK and the Nuchal measurement was within normal range but my bloods made me high risk with a 1:78 chance of a baby with Downs / other Trisomies. My BhCG was double what it should be and my PAPP-A was half, apparently can be an indication of trisomies, but even with no chromosome problems this can lead to other problems in pregnancy such as IUGR, preeclampsia to mention just a couple!

I guess what I would like to know is this - has anyone been in a similar situation and come out the other side?! I have an amnio booked for 16w, but the waiting is driving me crazy and giving me too much time to think about the what ifs and if I am doing the right thing having the amnio at all!

Any words of wisdom would be gratefully received.

Suzy

Lilylollylola Fri 06-Oct-17 12:35:04

I have been given 1:64 t21 and 1:670 t13/18.

X

Tammy1984 Wed 04-Oct-17 17:53:16

Hi, I'm new here and just looking for some reassurance really! My baby girl was stillborn at 36 weeks in October 2016, after tests were done we discovered it was because my placenta wasn't functioning properly because of the Low papp A I had, I'm now 14 weeks pregnant and have just found out I have low papp A again and this has sent me into an absolute frenzy of worry and panic, had anyone else had this and had a happy ending?

Lilylollylola Tue 03-Oct-17 21:02:34

Had my 12 week scan on Monday. Nuchal at 2 and all else "normal" then I had bloods, received the utterly heartbreaking call today to say my bloods came back high risk. 1:67. I'm 38. And terrified. Cannot stop crying. Booked a private NIPT blood test tomorrow morning.. I don't like the risk of amino, though maybe if NIPT comes back high, I will ... I'm so scared and my head is all over the place.

Jcaow Fri 05-May-17 17:13:44

Just got my harmony results back <1 in 10,000 risk of all 3 trisomies. Phew!

Jcaow Fri 28-Apr-17 14:08:46

This thread is really helpful.

I'm also in the dreaded 2ww for harmony test results after a normal 12 week scan but high hcg of 3.2 and v low Papp A of 0.13 giving me 1:54 chance of T21 and 1:20 of T13/18 according to the NHS but much higher chance of T21 according to the online calculator at the Fetal Medicine Foundation. I'm sure there are complicating factors in that I had IVF and pre eclampsia and my DD was growth restricted in my first pregnancy but blimey this waiting and not knowing is really hard work.

unhindered Sun 09-Apr-17 01:42:12

Just posting incase anyone else comes across this problem!

We were given high risk for Down syndrome after our 12 wk nhs testing at 1:62 based on my age (30) and high level of hcg (3.23) + low level of pappa (0.34) nuchal wasn't a concern (1.4mm)

As many of you did I opted for the harmony test as it was non invasive, could totally relate to the waiting and feeling anxious! Unfortunately we had to have a redraw of blood and even another, none of which they could test due to the low levels of babies DNA in my blood, to do the testing they need at least 4%.

This is likely to be due to my 'increased bmi' as they so politely put it! If you are over 100kg which I am, there is a chance of this happening. Harmony recommend waiting 2 weeks between blood tests for there to be a chance of an increase in the percentage, however the company I did the harmony test through didn't pass on this info and I ended up having the three blood tests within a week and a half!

Anyway I got a refund, I'm now 16 weeks and my husband who was unsure about continuing if baby had downs has now said what will be will be, so we are just going to see what happens! Neither of us like the sound of the amino or the risk involved so that's out of the question. Now I know I'm not waiting for results I'm sort of at peace which feels a bit strange after the anxious few weeks we've had! We find out the gender tomorrow so I'm very excited and can't sleep!

Incase anyone else goes down this route or just doesn't have any further testing, my 20 wk scan is being rebooked with a dr rather than a standard sonographer so they can have a more thorough look at that stage.

I hope this might be helpful for someone!

Justmaybe1 Wed 22-Mar-17 17:45:43

That's fantastic news smile it's the worst wait in the world, but you can relax now and enjoy the rest of your pregnancy x

Kikide Wed 22-Mar-17 13:33:23

Got my results this morning thankfully everything was clear so very releeved been hard couple of wks we found out we're having a little girl also so happy I can now relax

Kikide Wed 15-Mar-17 16:59:02

Thank u so much gives me hope x

Justmaybe1 Wed 15-Mar-17 09:47:47

Hi Kikide,
I know this is a horrible time to wait, I had my results back and was shown to have a very low risk of Downs Syndrome. I think either way at least having the test you can prepare and research any extra needs or possible complications that might occur from having a Down's syndrome baby. If your NT measurement was within normal range then that can be a very good sign, I will keep my fingers crossed for you xx

Kikide Wed 15-Mar-17 07:47:33

I got told last wk I was high risk downs 1 in 5 chance my by was normal but my bloods was not hcg of 2.6 and papa 0.29 I'm so worried and cried so much. We decide we would have the serenity test as I was not willing to risk my baby with an amnio I'm currently waiting for my news praying and hoping all is fine but understand it might not be it's causing a lot of upset for me and my hubby as he did not won't me to have NHS blood test to start I feel so guilty I just hope all is well but will be keeping either way wil be loved just the same but I am worried as already have an autistic son who needs lots of care . Plz cross ur fingers for me x

Justmaybe1 Fri 13-Jan-17 04:53:18

Hi @jenny88,
Just wondering if you can update on your amino results if you don't mind sharing?
You're the only other person I've seen online that has also had such high b-hCG levels as me ( mine is 9.3 and Papp a is low at 0.51). I'm currently waiting on the blood results of the Harmony test as I've been put at 1:80 chance of DS, the NT measurement was all normal.
This is a horrible time to wait, but the worst is that after my supposed 'normal' scan I started telling everyone about the pregnancy. My two other children as so excited and keep wanting to talk about the baby, but until I get the results I just want to curl into a ball!!!

SamMac2016 Mon 22-Aug-16 15:59:18

Hi everyone

Your posts have all offered me some hope and reassurance.

The midwife called today with a high risk result from the screening test. The nuchal fluid was normal but HCG levels high and PaPP low. We have opted for Harmony test tomorrow as have suffered 7 miscarriages. I am 37 years old.

I am also being treated at a private clinic in London for recurrent miscarriage, have high NK cells and been on Prednisolone for 1st trimester, at my last scan (12 weeks) I opted for them to do a harmony test and paid £450 for it. The result was inconclusive and I have to do a redraw due to quality control. Has anyone been high risk and had to do a redraw with the harmony test?

Trying to think positively, 15 weeks is the furthest I have ever got in pregnancy and this is a real blow.

Estilou Sun 24-Jul-16 21:27:35

I had a normal scan and NT. Then at 13/14 weeks bloods came back as 1/10 risk. I was 37 years old. I had high hcg and low pappa a at .4. I was v worried. Had the harmony test and everything came back fine. It was the worst 2 weeks of my life waiting for the results though. Think that is something you can only truly appreciate if you have been through it yourself.
I did have to have growth scans and baby had stopped growing at 39 weeks. He was born at 5lb14 smaller than his big sister and placenta they said was not in good condition when it came out. He is 7 months now and is still small but is a healthy little boy.
Hope this gives some people hope. I looked at every post going during my 2 week wait.

Oakley2016 Fri 29-Apr-16 09:22:40

Hello everyone. Thank you all for sharing your stories. It has given me hope. I received results for NT yesterday. It came back 1:8. Scan was great 1.9mm and nasal bone was there. But my bloods were out. HCG 2.77 and PPAP 1.9. I had a harmony scan today. So it's just the waiting now. A few people at work know I'm pregnant. It was hard to hide with terrible morning sickness and I'm not looking forward to being asked how everything is going.

Kaz1904 Fri 13-Mar-15 20:00:06

Thank you so much! Forums like this are what kept me positive during that time! So pleased things going well for you...not long for you now! Good luck! smile

Mslad Wed 11-Mar-15 17:56:13

HI Kaz Sorry I didn't reply to you sooner when you were still in waiting hell, but huge congratulations for your good news. It's the best feeling isn't it? I had very similar test results to you. now 30 weeks with a little girl too smile best of luck with the rest of your pregnancy smile

Kaz1904 Tue 10-Mar-15 20:18:10

Got my Harmony results today and the baby is all clear! Would def recommend this test as non invasive so no risk to the baby. These past few weeks have been a living nightmare, I am just so relieved! Oh and we found out we are having a wee girl...just delighted!

Kaz1904 Mon 09-Mar-15 21:30:36

Hi all,

Well it's been two weeks since I was given the news that I had a 1:36 risk of Down syndrome. This is my first pregnancy. My results were as follows:

Free beta hcg 4.01 mom
Papp-a 0.53 mom
NT 1.9 mm

I'm 35 years old. Have been for harmony test and just waiting on results. This has been the hardest time of my life. Doing anything is a struggle right now. My mind is just occupied with this. It's been 11 days since I had test done so will hopefully have results soon.

I just pray everything is ok with my baby ��

Mslad Mon 12-Jan-15 14:56:11

Hi Jenny, Hope you're ok. I don't really have any answers about the actual hcg and papp-a levels, but didn't want to read and run. I had a normal scan, nt measurement only 1.3, but due to my blood levels I was given a 1 in 157 chance of DS. Harmony test proved all is clear, and I had my 21 week scan last week and baby is developing as normal. the blood test results are at the back of my mind, but I just wanted to say that 1 in 450 isn't a high risk result. I'm not great with stats, but my 1 in 157 translated as something like 0.1% chance of ds- which is really really low when you think about it. Plus I think if your scan was good, it's a good indicator that things are progressing well.

As difficult as it is, I would try not to worry too much, I think the more medical science progresses, they can pick up any teeny tiny minor discrepency that can cause us to worry. If you don't want an amnio, you could look into the harmony test- it is expensive and takes 2 weeks for the results, but it's non invasive.

jenny88 Mon 12-Jan-15 02:01:02

Hi, I just got my NT test results back with a risk of 1 in 450 for DS. I just turned 27 and my average risk for my age is around 1 in 700. The results are obviously not what I had hoped for. I spoke with my Dr and she told me that my blood test results are what increased my risk. My HCg levels were 11!! I think my PAPP levels were not abnormal (can't remember the number). I've been trying to find any information online about levels that high but so far the highest I've seen are around 6? My Dr has ordered an urgent Amnio to be done this week.. I'm a little freaked out. She couldn't give me any answers sad

Lipsylisa Sun 07-Dec-14 21:01:29

Hi, just wanted to say I had nt 2.4mm and hcg 3.6mom papp 0.46mom and as I'm 38 and 13 + 4 weeks
I was pulled into room to tell me I had 1 in 9 (very high risk) chance of baby having Down's syndrome. so we turned down amino and done a harmony test (hospital said they take results as if they were done by amino as they are that reliable.) results were very low risk smile I cried when I hot results. I decided not to find out sex so they wipe out the gender results on test results (very hard lol)
I have refused any tests as it's an unnecessary risk. Wish I never had agreed to them. The harmony test was worth the £500 now I can have a good christmas and not worry !

LondonMomAG Mon 01-Dec-14 16:24:24

Hi everybody,
Thanks for sharing your experiences!

I went through a similar experience recently. I am 16 weeks and when I had my 12 week scan and blood test, they came back with 1:133 risk for Trisomy 21 because I have slightly high HCG and Low PAAP-A. NT was fine. The miscarraige risk for CVS and Amnio is higher than the margin of error for the blood test so I didn't really want to go through with it. I did the Harmony NIPT test instead. The wait for the results were agonising - it takes 2 weeks because the lab is in US but I just got the results back and the baby low risk 1/10000 for Trisomy 13, 18 and 21. The results have 99% accuracy so it was a big relief. My midwife has scheduled a 30 week extra scan to monitor the growth of the baby so happy about that too. All the best to everyone who is waiting for their results!

Mslad Tue 11-Nov-14 20:42:47

Anastasia I'm waiting for results at the moment. How did you get on?

AnastasiaX Thu 23-Oct-14 18:02:11

Hi everybody

I am new on mumsnet!!!

Last week 12+2 I had an ultrasound for chromosomic problems. My NT reading was high (2.6 mm), but the baby looked good overall (great heart beat, regular size, normal brain / head, and had a normal nasal bone.

I was told my chances of having any problems where slim (0.17%).

I was drawn blood to have it sent out for analysis. I got the Harmony test and am still waiting for results. Needless to say, I am extremely nervous and anxious. I am 29 and this is my first pregnancy.

Anyone have any similar experiences?

Thanks!!!!

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