High HCG and low Papp A but normal NT measurement

[JC1210]

Hi all,

I was just wondering if anyone had any recent experience of receiving a high risk result for DS. My NT measurement was “normal” at 1.9mm but apparently my bloods showed hcg high and papp a low. I haven’t been given the exact readings. I had low papp a with my first baby and everything was fine but I have been extremely worried about the high risk screening (1:72). I am 32 and not overweight with no chromosomal issues on either side of the family (and thankfully no issues in conceiving) so I am still shocked by the result. We are waiting for an amino which is still a week and a half away. I just wondered whether anyone had any experiences more recently as a lot of the (many!!) threads I’ve read are from quite a few years ago. Thank you xx

I don’t unfortunately but with a risk of 1:72 the odds are very much on your side. I hope you get a good result.

Hi,

My result was basically the same, we got 1:100 risk. We were offered the NIPT test after the combined screening which is more accurate, and got a low risk there so we are back in the low risk category now! We didn’t have to consider amino.

We’re you offered NIPT or harmony? I assume your result was from combined screening?

@rose88xx thank you for responding :) that’s great news, really glad your result is now low risk again. Yes the result was from the combined screening. They did mention the NIPT but me and my husband had discussed this scenario before I was pregnant and agreed that we would need to know for sure so we have opted for the amino. I have been feeling okay the past few days but today woken up feeling really anxious and upset so it’s nice to have some reassurance, thank you xx

This exact thing happened to me OP - very high HCG and low Papp-a with normal NT (1.6 I think). Second pregnancy at 37/8. IVF pregnancy and a bit overweight but not near to being obese.

I was advised to do NIPT as the scan was normal and the consultant said NIPT is very good. He said he recommends amnio more when the scan shows an issue as amnio can diagnose other issues. Thankfully had a low risk result. Interestingly my midwife said ‘no-one will tell you this but a low risk result basically means the baby is fine’ - which is maybe a bit further then she should have gone for a non diagnostic test!

Turned our I also had high really HCG in my first pregnancy but as I was 34/5 my risk was 1/2060 so age was my main issue, along with the bloods.

Think you are amazingly patient to wait for amnio! Good luck OP, it’s horrible and you are being really brave. Xx

I was 1-42 as my risk.

@Nikki037297 thank you 🙏❤️ Xx

@Passanotherjaffacake thanks so much for responding and great news about your NIPT result! I have only had one conversation with a midwife and she was lovely but basically said you have three options, do nothing, NIPT which isn’t 100% or amino which is. So I felt like I didn’t really have much choice but to be honest it’s probably my fault for not asking more questions!

I think age is a big factor definitely. Out of interest, was your first a boy or girl? I’ve been Googling everything and keep seeing that hcg levels are usually higher with a girl. I had low papp a with my first baby but (assuming) not high hcg as was still classed as low risk but wondered if the high hcg this time might be linked to the baby being a girl (or I might be clutching at straws!!) thank you so much again xx

I had that exact scenario. I was 24 at the time so my risk was lower at 1:148.
Don’t suppose you are a sicky pregnant person? I had hyperemesis and my hcg was very high; apparently there can be a connection. Interestingly, during my second pregnancy my sickness wasn’t as severe and my screening came back at only 1:600.

That might well be it OP. My first was a girl and this one is a boy, high HCG both times but the fetal medicine consultant said that that must just be the way my body responds to pregnancy. So might just be me being a bit odd. You will probably find out more when you see the consultant as he was the one who looked back at DD and said I had high HCG then as well. I had no idea prior to that call!

It is a shame you didn’t get more time with the fetal meds midwife. Mine called me multiple times. I spent ages on the phone to her and about 20 mins with the consultant (toddler had a vomiting bug so we had a call but otherwise would have seen him in person). So I felt very well looked after - it’s the only time I have been moved to go out of my way to give good feedback on someone. They were much nicer then my experience of the community and hospital midwife’s round here!

Had something very similar last year OP. Was told 1 in 132 chance of DS. The midwife couldn’t tell me why they’d come back like that - she said they put the data in to the computer and it throws a number back to them and that was mine. But she said looking at the measurements/data there was nothing that she could say had ‘triggered’ that outcome. Was offered NIPT and amnio. Went for the NIPT first, which came back as low risk, so we decided not to go for the amnio.
My beautiful 8 day old baby is currently having cuddles with his daddy and big bro.

I hope that helps! The waiting is the worst!!!

I had v similar to you OP, super high HCG and super low PAPP-A, but normal NF (just slightly higher than yours)

Got a 1/15 risk of downs but DD was all clear.

@ForkedIt thank you for responding. I have heard that about HG before actually but with my first baby I was sick for the full 9 months whereas I haven’t been as bad by comparison this time. I know with the low papp a the placenta sometimes doesn’t function as well so always wondered if that was the reason I was so sick last time but got the same issue again this time and it’s not as bad so no idea! Xx

@Passanotherjaffacake it is interesting! It is good that you felt you had a positive experience with the care you received. At what point did you see the consultant? I have the midwife’s phone number so have text her with a few questions but otherwise I’ve just been booked for the amino and other than going in the day before to sign some consent forms, I don’t think I will speak to anyone else before that xx

@FrogsHiccups thank you yes that definitely does help! There doesn’t seem to be much logic behind it does there - I am feeling more positive hearing everyone else’s experiences but wish the waiting period wasn’t so long! Xx

@WaterBottle123 thank you and great news your baby is healthy. Did you have a NIPT or amnio or just wait and see? Xx

I had a risk of 1:36.
Normal nuchal fold, through the roof hcg, very low pappa, but my age (late 30s) had negligible impact on the risk comparatively.

I had the harmony test which was similar to the nipt. I didn't want an invasive test with the risk of miscarriage, as I would have had my child regardless of diagnosis. I wanted the results to be able to plan for it in terms of what additional medical support could be necessary and what to advocate for. When you're talking about probability of less than 1 in 10,000 I was happy to take that as "Gospel".
My child was a boy, but I suffered hyperemesis all the way through with multiple hospital stays. I was told usually this is indicative of a girl, yet it obviously wasn't!
Good luck.

@JC1210 it was 2014 so NIPT not available. We had a same day CVS as I needed to know, results took a few days. DD now a healthy 7 year old, normal birth weight. I was 33 so nearly your age.

@WaterBottle123 thank you, that is reassuring

@ChoiceMummy thank you 🙏 glad to hear all was well with your little boy