HIGH NT AND FREE BETA HCG!!

[sabrixx]

Hi everyone,

I had my first scan last week and the midwife said everything looked fine with the baby but the NT fluid was a bit high (3.5mm).

They sent me for blood test and I got my results yesterday:

Free beta hCG - 3.88 MoM
PAPP-A - 0.94 MoM

She said im high risk for down syndrome (1 in 2 chance) so I will have my CVS next week.

Did anyone else have similar numbers and risks? How did it turn out?

I’ve been crying and next trying to be positive since yesterday but it is actually hard as I don’t know what’s going on.

I would love for anyone to share their story and let me know how you dealt with it.

Hi, I was looking for posts and came across yours so wanted to leave a comment. My situation was similar to a degree, I had a scan on Friday with an elevated NT of 3.8, though they said everything else appeared normal. I was referred straight to fetal medicine on Monday. I did the CVS there and then and they told me not to pay attention to my bloods now that I’ve had the CVS. First set of results clear but another 2 weeks approx. before I’ll receive the full set. It’s such a worrying time and the unknowns are definitely the most difficult. I’ve found it good to speak to people on here but also to confide in a few nearest and dearest but that’s hard too as makes it real and you just want to be able to be excited! I think they are quite blunt with how they say things, my consultant said it’d be the 20 week scan before I’d reduce to near
‘normal risk’ (assuming I had no other markers at that point / before that point). Really hard to navigate but if you want to message me at any point, please do! X

Did you get to see your HCG levels of your blood test?

The midwife said the my PAPP is normal but the HCG it’s a bit too high, but then at the same she said it could be just me, but again it could indicate some abnormalities.

She was saying things that were giving me home but then right after them she would things where they made me worry. I really want to get this done but the wait is so long.

Hi @sabrixx - I got a notification you'd asked how my very similar pregnancy turned out when I'd commented on another chat (my username has since changed).

I did have a 1:2 chance of DS given to me coming up to two years ago. My HGC was high at 6.5 MoM and my Paap-A low (can't remember exactly what now but it was only just below "normal"). My NT measurement had been normal but I was 37 at the time so my age made the risk much higher.

The short story is, yes our baby had T21/DS, and the pregnancy ended when I was 16 weeks pregnant.

The bigger context is; I went for a CVS at 14 weeks. Before the CVS they did a very detailed ultrasound and it showed significant fetal abnormalities (no nasal bone, clear significant heart defect, fluid on the lungs, hydrops (caused by baby being in heart failure)). The consultant said before even doing the actual CVS that something wasn't right and that this was a very poorly baby, so we knew before getting the results that it wasn't going to be good whatever happened.

However, I created my own post at the time asking for stories and advice (very similar to yours now) and multiple people replied saying their pregnancies had been OK in similar circumstances. It really really does feel like it was a case of 50% chance it's all fine and 50% chance baby was poorly. I was just unfortunately unlucky and in the worse 50%.

I really do hope you both get a good outcome. The waiting for results and limbo period was horrific and I'd wish it on no-one.

I made the mistake of trying to work through a lot of the period I was going through it (I think I thought it would distract me). Looking back I really wish I hadn't. So look after yourself and take time off from work if you haven't already.

So sorry you’re going through this.
Every time I see a thread like this I recommend that the OP contact ARC - I cannot praise them highly enough when I called them years ago (my DS is now 13) and sobbed throughout the call, the lady was so kind and also well informed about what all the numbers can mean.
https://www.arc-uk.org/
After I had the (healthy) baby I fundraised for them, as I think the service they provide is so valuable.
Best of luck OP

Hey,

im so sorry for how it ended and hope you are okay now.

During my first scan they said everything was fine, nasal bone present, heartbeat, brain and all other things just the NT was measuring 3.5mm.

The midwife today said that the 1 in 2 chance could be due to the NT and my high HCG, I am trying to put my mind at peace but at the same time i’m just scared of the outcome.

I have read one post where it says that if the baby has nasal bone I shouldn’t worry but it’s really impossible. I’m just reading as many stories as I can but very few people get 1 in 2.

Hi,

so happy to hear your baby is healthy! I would love to hear your story if you’d like to share it could help me through these days while I wait for my CSV.

I didn’t sorry no - so I’m not too sure on my levels just that I was classed as higher risk due to my NT. everything crossed for you! X

Also going through this so I feel your pain. I'm just waiting for amino results.

My 12 week scan came back with NT of 3.8mm although everything else they said looked fine, baby was actually measuring also at 13+3. Baby wouldn't actually go in position and it took a long time so I was hoping it was a mistake.

Referred to fetal medicine. Had a scan where they couldn't see a problem but again baby wouldn't go in a good position. Was going to have CVS but the baby was in wrong position and they couldn't get to placenta so I then had to wait another week until I was over 15 weeks so I could have amino. I had that on Monday, now I'm just waiting for results. The consultant did do my 16 week measurements when we went for amino and he said everything else looked as it should and he wouldn't have been concerned just from the scan so he is hopeful results will come back clear but then also said not all issues would be seen yet. So kind of gave me hope but not too much! My nuchal fold was 2.7 on the 16 week scan.

The waiting is the worst. Try and keep busy. There are lots of positive posts on here and I did nothing but scour the internet for information. I've exhausted all I could find and it's literally a case of waiting and seeing. Hoping results will be back before the week is out for the first 3 then another 10 days to wait for the rest.

Completely get this. I too endlessly googled at the time.

@Ambivax has suggested ringing ARC and that's a really good shout. I used the ARC as well at the time and still do on occasion even now. They're absolutely fabulous and deserve so much credit for the work they do.

I really hope you’ll get the news you want, keep me updated! xx

@ByBluePoster I hope everything turns out the way you want to, please keep me updated xx

Hey i was just reading this thread. One of you had amrio and one a CVS. May i know what happend?

i have similar results, raised NT and raised Hcg and having an Amino this Friday. Please share your stories! I am really upset and trying to stay realistic that it can go either way. 😞

@Nazkim hey, so sorry you are going through this, it’s just the worst situation to be in.

I will have my CVS tomorrow and hopefully get some results next week, I will keep you updated.

You keep us updated too!

@linz1987 did you get your results? :)

How did your CVS go on Friday @sabrixx? Been thinking of you.

@bord thats just so nice of you! I had my CVS on Thursday and still waiting for the results, they said it would take them 3 days to get back to me, so not sure if I should call today afternoon in case they don’t call me but I will keep you updated!

Yes let us know.
Did they give you another scan before the test? Was the consultant you saw helpful and good to speak to?
I think it took 3 'working days' for me to get my results. I had the test on a Wednesday and got the results the following Monday.

@bord We had a scan before the procedure and the consultant said everything looked good but a scan can’t detect everything and things are still developing. He wasn’t giving me any false hope but being realistic which I appreciated.

I will wait today then and just give them a call tomorrow, these days have been feeling so long🥲

I had my amniocentesis last Friday and also waiting for the results. They said it will come back between Wednesday till Friday. I am so scared to be honest. I try not to think about it but it just constantly on my mind. This is honestly most stressful and hopeless situation I have ever been in.

My initial amino results came back 1 week after my test. (Amino was on 12.2.24 and came back on the 19th in the afternoon). They came back negative for Down syndrome, pataus and Edward's. Still waiting for the microarray to come back.

My consultant made me feel so much more relaxed and helped with the waiting. He completed my 16 week scan results during that scan and said he was confident everything would come back ok, he did say that they can't see everything at this point but everything looked exactly how it should and all measurements were now 'normal'.

He also told us we're having a boy, the amino results confirmed this too. Just hoping the microarray comes back soon and all is well so I can relax!

Keeping my fingers crossed for you all.

@linz1987 Ah that must be a relief that the three syndromes came back negative. I am happy for you. Hope tor the best in the next results aswell.
Ok so can take up to a week.
May I know what were ur values? NT and hCG and what chance did the give you?

My NT was 5.1 and Double marker has been horribly wrong.

HGC 30.5
papp-a 1.15
T21/ T13 and T18 all have come positive in the above test.

I have been advised to do NIPT which was done yesterday 26th but im getting so rest less. Im unable to concentrate on my work. I cannot take off from work as well. Im so stressed and scared. This has been the worst I could ever go thru in my life.

Im hoping my NiPT comes all clear. I can only pray and rest is gods wish. Can some one advice the ration on criticality in these resports.

Hi everyone,

I just wanted to give you an updated, I got my first results back and it’s clear for all three symptoms and I have to wait two more weeks for the rest of the results.

I still can’t believe and still worried but happy at the same time.

Anyone who is still waiting, please let me know your results and message me for anything.

The NT was 3.8mm and as far as I am aware the bloody results would not have been a cause for concern on their own. I never got any specific numbers. I did ask my midwife but she said nothing was of a concern. I am 36 too so I think this brought the chances up. I was given 1 in 5 for DS and 1 in 83 for patau and Edward's.

Fantastic news! So pleased for you. I know what you're saying about the relief but also still worried!

I was hoping the rest of results would take 2 weeks in total (it's been over 2 weeks since my amino now) but you've been told an additional 2 weeks from today?