High Hcg, High Papp-A. 1:25 risk of DS

[ShootingStar83]

Hi everyone,
I just registered and this is my first post. I recently had my screening ultrasound and blood work. Ultrasound came back fine. Nuchal translucency was 1.44 at 12w 6days. I am now 14 weeks. It looks to me like nasal bone is present on ultrasound but no one has commented on it one way or another. I got a call on Wednesday telling me that I was a 1:25 risk for DS. I am 34 years old. I'm not sure if it's important to mention, but I had IVF to conceive. We transferred two embryos and one stuck. HCG came back at 3.05MoM and Papp-A came back at 1.83MoM. I thought that Papp-A was usually low, not high, when babies are at risk of DS? I did the Panaroma test on Wednesday but because of the holidays, I likely won't have any results for about two weeks. The waiting and wondering is so hard. Has anyone experienced something similar?

Hello ShootingStar,
I am in a similar position. Not sure on my test results, but thought I had low pap-A. NT was fine. I’ve had the Harmony blood test and now waiting over Christmas too. It’s horrible. How are you doing? X

Hi Purplelily,

I hope you had a nice Christmas. Mine was nice but I was/am still pretty worried. Always in the back of my mind. I’ve read a lot of stories similar to yours where Papp-a was low. Haven’t really found much on it being high. Hopefully the wait isn’t too much longer! When you do expect to get your results?

I'm waiting too. Pg again after terminating earlier in the year for Downs so I am really, really dreading the results call from the NIPT test. Don't know how I can go through all that again.

I have not heard anything about high Papp-A either. I tried to find out the ‘normal’ range from the midwife, but she couldn’t really say, I have not had my letter yet because of the Christmas post I guess.
It is a worry and it has/is weighing heavy in my mind over Christmas. I had my test on the 22nd, so expecting results perhaps on the 30th? How about you? What was your estimated date for results? Hope you are bearing up ok. Waking in the night it seems to take over.x

Sorry, just say your message too Giraffe, hope you are ok too, that must be unbearable second time round. My thoughts are with you both!

*saw

Hi all,
When do you get your results, Giraffe? I had my test on Dec 19 and they said it would 10-14 days. Purplelily, I hear you about waking up at night! I find that I’ve been fine during most of the day but when I lay down at night I start to worry. :(
My fingers are crossed for all of us!

Thanks both. I had my test on 20th and they said 5-7 days. I think they said 10-14 days first time round but in my experience if it's bad news they call sooner.

I have high hcg, normal nt and normal-low papp a this time. I think there can be lots of reasons for 'abnormal' bloods, but that's not much comfort when you're worrying us it?

The hardest thing is trying to hide the fact I'm not drinking or eating dodgy cheeses from my family - while thinking to myself why am I bothering...

I have an OB-Gyn appt tomorrow so maybe they'll have my results but I would be surprised if they have it this early over the holidays. It will probably be a few more days. Regardless, I'm very nervous for the appointment. Are you both in the UK? I know this is a UK site but I'm from Ontario, Canada. This site was the best resource I've been able to find.
I hope you'll both keep me posted on your results! Giraffe, how old are you? Do you have any other children? (And so sorry about your termination earlier this year). I hope you're both feeling well. At the very least, I am looking forward to finding out the baby's gender when I get the results!

Good luck with your appointment Shootingstar. It is always nice to hear where people are, and you are all the way away in Canada. I am in Devon, UK. How lovely to be able to connect with others going through the same. Please let us know your results. I am getting more nervous now we are back on ‘normal’ working days. Do you have any other children? I have one daughter (2 and a half) and it took us ages to conceive this one. I am 39, so left it late and I know odds are against us as we get older.
How are you feeling Giraffe?
Deep breaths ladies, I wish you all both strength to get through these next few days x

Just wanted to say when I was pregnant, I had 1in 12 chance of downs. He wasn't. It sounds high odds but is really 8 from 100.... My husband said to me, if you were playing lotto and had a 92%chance of winning you'd be overjoyed. I hope everything works out for you, as I say I understand your worries and I hope my experience helps a tiny bit x

Hope you get the results you want. I was high risk for Downs and the risk was calculated predominantly because of very high HCG levels. I actually had these in both my pregnancies so it seems like my body just produces a lot. Like you, I had high, not low Papp A.

Hello,
I was in a similar position around a year ago - in the end, we had a positive NIPT /Harmony result, and decided we would have our baby ( she is currently wriggling & babbling on my lap refusing to feed as there’s far too much interesting stuff to look at instead )

The waiting for results & having to make decisions about what to do was horrible - but whatever your test results, that time does pass & you come through the other side. If your test result is positive (and with a 1:25 chance, you are much more likely to get a negative result), ARC are a great organisation providing totally non judgemental, neutral & lovely support & information about all aspects of antenatal screening
www.arc-uk.org/

In the meantime, look after yourself as well as you can, spend time with people who you find soothing and /or distracting... Looking back, I thought & googled far too much about it all while we were waiting for results - in the end it was very much a crossing-bridges-as-we-came-to-them kind of situation.

Good luck & take care xxx

Morning Shooting and Purple. Hope you're doing okay with the wait. I got a call this morning at 8 and I've come back low risk. Really hoping that you will both have good news too. Fingers crossed for you.

Giraffe, that’s wonderful - so happy for you, especially after your previous experience. Enjoy the rest of your pregnancy x

Hi @shootingstar, sorry that you're going through all this worry. Wanted to comment as my results were almost identical to yours but I came back as 1 in 9000 ish for downs - the only difference is that I'm 29. Seems really odd that they would be that different? I really struggled to find any info about high hcg and papp a but my midwife seemed completely unconcerned. I'm almost 24 weeks now and 20 week scan looked healthy - hope your results come quick for you and all is ok. X

I too had very similar results and was given a 1 in 1700 chance. I'm 30, so I wonder if age is a lot to do with it.
I've had my anomaly scan and everything looked good.
I hope you get good news

Hello everyone,
Thank you so much for the reassuring comments! It definitely helps. Olicat and Scared, I also thought my results seemed quite high but they were given to me to by my doctor's receptionist and I haven't met with him yet, so they haven't really been explained to me! I have a doctor's appt at 12pm today (it's only 8:40am right now in Ontario, Canada). I don't know if he'll have the results yet or not. Probably not. We'll see! Either way, maybe he can explain why the risk came back so high.

Giraffe - I am sooo very happy for you! I hope you're feeling great and that you get to enjoy the rest of your pregnancy!

Purple - I have one other child; he's 9 and a half and from a previous relationship. For this pregnancy, my husband and I tried to conceive for about 3.5 years. We finally had to go through IVF and got pregnant on our fourth embryo transfer (the first three failed). It's been a very long and difficult road already so we are really hoping for low risk results soon!
PS - I googled "Devon, UK" and it looks absolutely beautiful in the pictures I saw. I keep telling my husband that I would love to go to the UK for our next vacation...whenever that will be! (It would be a lot sooner if we won the lottery. lol) :)

My last pregnancy with dc7 I had 1 in 22 for ds and a low pappa score. I didn't do any further testing as I couldn't arrange the harmony test in time and I wouldn't have the amino as I had previous miscarriages and was worried about the risk. We had a high nuchel told of 3.7mm at the 12 week scan.
Dc7 was born in July and the only problems she has is severe reflux.

Just wanted to let everyone know that I got my NIPT results back this afternoon and they came back negative!!! :)))) I have never been more relieved in my life!

Also, it's a BOY!

Congratulations op :) and fingers crossed for purpleliliy

Great news

So happy for you Shooting. Fingers crossed for you Purple and to get you through the wait

Shootingstar - over the moon for you....Happy new year!
Thanks for your thoughts
X

Statistics can be scary. But think about it. 1 in 25 is 4 in 100. That's a 96% chance of not Downs. Pretty good odds.

When I was pregnant, back in the dark ages. I was told that due to my age (no blood tests then) I had a "high risk" of 1 in 20 of a baby with downs. I should have an amniocentesis. I declined and my doctor tried to convince me, giving me the leaflets, telling me about the "low risk" procedure, only 0.05% risk of miscarriage.

I'm mathematically literate. It's the same odds. 0.05 is the same as 1 in 20. Described as a high risk of Downs but a low risk of miscarriage. Both are 5 in a hundred so 95% chance of being ok. The same stats can be used to scare or reassure.

What you have to decide is how small a risk are you willing to take?