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

(74 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

SamP527 Wed 18-Sep-19 21:23:36

I had “the call” from the hospital this week with a 1/45 chance of T21. I sobbed. Then went straight on the ARC website and got some more information about the extra testing. We had the Harmony test this morning and now just waiting. Apparently the NT measurement is normal and it’s something in the blood work. I don’t understand what any of the numbers mean and I can’t seem to find any way of interpreting them just to see where the risk came from. I know it’s information overload but I don’t think you can help yourself when searching for answers. Hopefully our results come back clear but we are where we are. Happy thoughts to everyone else waiting on results

Sorter Wed 15-May-19 03:51:52

Hi, thanks for sharing your stories.

Our GP adviced us to go for NIPT first so we had NIPT in 11th week. It came all low risk. Then after getting these results, we went for Nuchal Translucency (NT) and blood screening test (13-14wks). NT came fine 2.5 mm, nasal bone present but free BhCG - 0.30 and PAPP-A - 0.27 MoM. We are put into high risk for Trisomy 18. Not sure why, when NIPT came out all fine.

We will be meeting doc tomorrow.

Topu1981 Tue 07-May-19 20:12:18

Hi , My wife is 39 years old. We have two boys 10 and 5.6 years old. My second boy 5.6 is down syndrome..my wife now 13 weak pregnant. She did her nt scan and it wad found normal (0.77mm).nasal bone was present. But blood test found 1:184 risk. High hcg (9.1) and low pappa(1.3) at 11.3 weaks pregnancy. We are very worried. What should we do now..please mention...

Whitney12 Fri 21-Sep-18 22:57:08

Hey I’m also new but reading al these comments help a lot i have just been given a 1in 15 for downs on my baby I’m 16 weeks and have denied the invasive test there is a part of me that wants to no as I want to be prepared I’m only 24 so I automatically said to myself I never saw this coming but I denied further testing not cos I didn’t want to no but because weather my baby has downs or not I wouldn’t love it any differently but I need to talk as it’s still all I think about x

Gilbert82 Wed 04-Jul-18 18:38:57

We decided not have have the combined test at 12 weeks, our scans were both fine and everything looked as expected. We then had a postnatal diagnosis of Down syndrome. Our little one is amazing, no other medical conditions, hitting milestones (a little later than other similar aged babies) and is the best thing to have happened to our family!
We chose not to test as I would have ruined my pregnancy worrying. Any serious medical conditions would most likely show up on your 20 week scan, we were told if anything showed up to make the sonographer suspect DS or anything else they would have to tell us even though we hadn’t screened. Feel free to send me a message if there’s anything I can help with x

Ashtangimum Mon 02-Jul-18 21:37:57

Thank you so much - the midwife wants to see me to discuss further options. However, I’m not sure whether I’m better off knowing or not knowing. Will I end up worrying either way? Can I stay in an ignorant bubble and enjoy my pregnancy and not worry until the end or do I find out be prepared and hope for the best. I don’t know what is going to make it manageable. For the first I really feel like I don’t know which to turn

soontobe6 Mon 02-Jul-18 20:53:44

I am assuming your 1in 6 chance is of Down's Syndrome? I've been in your position and my heart goes out for you at this time of worry.
Your midwife should of outlined possible next steps such as an amino or the Nipt test? Finding out for definite could be helpful.

After much soul searching we decided not to undertake any further testing as we just wanted our baby.
He does have Down Syndrome. He is an absolute joy and whilst he is a little slower to reach his milestones , he is healthy and happy and we do not regret our choice.
I have great compassion for couples that choose a different path.
Please feel free to pm if I can help in anyway.

Ashtangimum Mon 02-Jul-18 20:19:54

Hi, I’ve just found out my results today and I’m high risk with a 1in 6 chance. This is my first pregnancy and I am scared and worried and I don’t know what to do. I’m feeling completely beside myself

Lilylollylola Tue 12-Dec-17 16:46:14

Hello soozy. I was in exactly the same position .. but I opted for the private safe blood test as there is no risk to baby. I think I paid about £400. Had a 5 day wait for results which came back low risk. I am 22 weeks now, and Everything looks on track ... but I guess you never really stop worrying till little one is born. Try and stay positive.. very hard I know. But not all trusts scan Papp-a so, I'm
My mind in an uneccecary extra element of worry.. xx

unhindered Tue 12-Dec-17 11:40:41

I had a low level of Papp a and my daughter was born in October, we were high risk for downs due to it and higher levels of hcg but thankfully she isn't smile

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.

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