Very high hcg and low pappa! Anyone had similar??

[Hollybob123]

Hi all,

I’m very worried as after combined test I’ve been given 1 in 15 chance of baby having DS. I’m 37 and have a 2 year old already.

My results at 13 weeks:
NT: 1.8mm
Hcg: 4.53 mom
Pappa: 0.51 mom

I’d awaiting NIPT results - 2 weeks is such a long time! Any advice/support is much appreciated x

Hi Hollybob123,

We are in a similar situation, however my wife's (39 on DD, with healthy nearly 4 yr old) NT was much higher at 3.4mm. Hcg 3.54 and Pappa 0.65. We are 1:5 risk of DS. We had an NIPT earlier this week (jumped the gun a bit out of shock of being told we were high risk) but are being offered a CVS this weekend which we will probably go ahead with as my wife needs to know 100%. Very stressful time for all concerned I know.

Hi Op. I had a very similar hcg, my pappa was slightly higher and normal NT. the waiting for the NIPT results nearly killed me, mainly because of the high hcg I was very sick which got worse with stress. How are you feeling physically?

My baby was fine and now I’m 40 weeks. However for some reason (maybe the normal NT) by chances were lower than yours- 1:76.

Absolute best of luck. I wouldn’t wish that wait on my worst enemy. You’re not alone x

Hi crowdie2015, thanks for replying and sorry to hear you’re in a similar situation. Do you know when you might get the NIPT results? I think mine will be next Friday at the earliest. I was also offered a cvs which I nearly took as I would’ve had the results back sooner, but decided to go with the NIPT first of all. I’ve been desperately searching for reasons why hcg might be high whilst pappa is low and all I can find is the link with DS. Have you heard of any other reason? Wishing you and your wife the best of luck! It does help to hear other people’s stories.

Thanks Passthecherrycoke, it’s good to hear from someone with similar results. I’m so glad your baby is fine :) Did you ever get a reason for your hormones being unusual? Do you mind telling me how old you are?

I agree, the wait is agonising (I only had the test yesterday) and am a bit of a wreck really. I’m going through lots of emotions, one minute thinking positively and the next in tears x

Hi holly. I was told that the high hcg was “probably just my body for this pregnancy” I have another child for whom I had an easy pregnancy but I have a family history of hypermersis gravium and it’s thought that severe sickness/ nausea is caused by very high hcg (although was told it’s not possible to know why it is high, especially as it starts falling after 12/13 weeks anyway as the placenta takes over so the combined test is a bit of a once in a lifetime opportunity to record the levels.

I am 38, which obviously helped tip my risk factor over the edge a bit. Without the test results my baseline risk was 1:240. After that it’s all about the results though x

I get the impression low pappa on its own isn’t a huge problem, it’s the combination. They told me without the hcg they wouldn’t have done anything about it.

Thanks cherrycoke, that’s helpful to know about the hcg. The midwife I spoke to did say to me that every pregnancy is different in terms of hcg levels. I also read that sickness gets worse with each pregnancy - I have definitely felt more sick this time, although never actually been sick.

Are you feeling any signs baby might make an appearance soon? X

Hi Hollybob123,
The NIPT results will probably be mid-late next week; however we went ahead with it before speaking to our midwife care who told us we would not be able to have CVS on the NHS (£800-£1200 private) once we knew the NIPT results as no surgeon would go ahead with the procedure if we knew the results was low probability BEFORE a CVS. They have been good to us and offered a CVS tomorrow at the Fetal Unit in Southend which we are reassured by as it sounds like an excellent facility, but still that 1% risk of miscarriage is weighing on our minds...I think we just need to know either way at this point as the uncertainty is in particular causing my wife a lot of stress, your emotions are very familiar to ours. Our HCG is very high, but I have read enough to suggest it should not use in isolation as a market for DS, combined with our high NT though I can see why we have been given 1:5 DS risk. But, I have read a lot of stories with more extreme numbers and their baby has been clear, so, just have to remain hopeful. Keep us posted with your NIPT result, fingers crossed.

Sorry, forgot to also say my wife felt much sicker this time around than last, without actually being sick at all.

Hi Crowdie2015,
We too went straight for the NIPT as the results take so long - ours was at the hospital, although we did have to pay.
I really hope the CVS goes well and fingers crossed you find out quickly and that the results are good news. It’s really such a stressful time. Sending positive thoughts!

Hi hollybob123; have you had your results yet? In the end our NIPT came back after just 3 working days on Friday evening - sadly, it was not a good result for us. We went ahead with the CVS in any case but we are preparing ourselves for a very tough few days ahead, if not longer. In truth, as soon as I realised the impact of that high NT measurement I had a bad feeling about things...just something you sense I guess. Fingers crossed you get a good outcome, the waiting is terrible.

I got my NIPT results back 2 weeks ago.

I was given a 1 in 17 chance of Downs Syndrome from my blood test (the quad test as they couldn't measure the NT at the scan). I'm 34 and had high hcg and low papp-a. The results from the NIPT came back as 1 in 50,000 so I haven't had any further tests.

The results took 13 days to come back for me.

Keeping my fingers crossed for you.

We had similar but our results were later so we had an amnio. Gave time to think, and while it was the worst week of our lives, we realised we'd want to keep a baby with downs. As it was, the results came back clear, but my little girl has a best friend with downs and I've realised it's not what I thought and for us would have been manageable.
Good luck OP. The waiting is the worst bit.

Hi crowdie2015, I am very sorry to hear that you didn’t get the results you were hoping for, there’s certainly a lot to think about and discuss - I wish you all the best in the coming days and weeks. Hopefully you’ll get the cvs results soon so that you can be given a certain diagnosis.

I’ve not had my results and the hospital said that I shouldn’t expect them until Friday at the earliest, so I’ve just got to wait and try not to get myself too worked up. I do however have a strong feeling that we will be told the baby does have DS; just a gut feeling based on my bloods which were so off for where they should be.

On the positive side, the wait is giving me and DH plenty of time to discuss and research DS further. We both want to continue with the pregnancy regardless, so we are lucky that we feel the same.

Hi bluebell9, thanks for your response - it’s good to hear from someone who’s been through this worrying time. Do you remember what your hcg and pappa levels were? We won’t be having any further tests either whatever the result.

Hi petitprince, thanks for your reply - I think it is helping me to know that we will continue the pregnancy regardless; something my DH and I had never discussed before last week. Although, I have no judgement for people who decide differently - it’s a very personal decision. Fingers crossed we will hear by the end of the week.

Hi Hollybob123, thank you for your best wishes - I really hope your results come back sooner than Friday...and of course positively. I wouldn't like to 2nd guess any set of results after reading the wide ranges on these pages that people get, with sometimes unexpected outcomes. My wife has always been adamant she would not proceed with a DS pregnancy, however, I would be much more willing to consider going ahead. I have a brother with learning disabilities (not DS) so have more experience & understanding in this area. So, this on its own is making things harder generally.

Hi crowdie2015, thank you. All this worrying and uncertainty is so horrible; it’s really made me realise just how fortunate I was with my last pregnancy. One thing I’m sure of is that if I’m ever pregnant again, I would go straight for a NIPT and not bother with the combined test; from all the reading I’ve done, it just seems to cause such a lot of unnecessary upset and worry. I wish you all the best with deciding what to do next, it’s a very hard time.

So the results from the NIPT came in early and it’s good news for us; I’ve now been given a 1 in 1,000,000 chance of baby having DS (as well as Edwards and Patau). It’s been a really tough week and I’ve googled far too much! Thank you for everyone’s support and well wishes :) x

Wonderful news OP! Well done. Think of the people this thread will help in future when they google for help x

Thanks passthecherrycoke, I really hope it will help others in a similar situation. I know reading about your experience really helped me. How are you getting on? x

UPDATE
I can’t believe a year has passed since my husband and I were going through the agonising wait for my NIPT results.
We were very lucky that the rest of my pregnancy went smoothly, and after a very quick birth, our beautiful son was born.
I just wanted to post in case it might help someone who is going through a similar situation to know that, despite the 1:15 chance, our baby doesn’t have DS. I would really recommend (especially if you’re an older mum like me) to have a private scan and NIPT test if you can afford it, the worrying was so stressful and upsetting for me. I also researched DS a lot during this time and realised that there’s lots of support available to families and luckily my husband and I had agreed that we would continue the pregnancy regardless of the results.

Thank you @Hollybob123 I really needed to read your post this morning. Currently waiting on my NIPT results after a 1:15 chance of DS. I'm 37 and this is my first baby.

I had quad test as they couldn't get NT measurement at my 12 week scan, but sonographer told me at he time that it was way under the 2mm mark and 'all looked good.'

Hoping to get our results on Wednesday, but finding the wait absolutely agonising. Stories like yours give me hope x

@labrinth1 I’m glad that you found my post - it really helped me to hear positive experiences during the wait for results (there were lots!) It also helped to think that there was a 14/15 chance of baby not having DS. I think the normal NT is also very encouraging.

Sending lots of positive thoughts your way xx

Thank you @Hollybob123 I also needed to read this today. Currently waiting for amniocentesis results with a 1:15 risk of DS. Sadly my NT was high and grouped with my raised hcg made me high risk - I’m 30 so my age probably hasn’t had much influence on the maths from what I understand. So pleased you had a happy and positive outcome xx

@Redhead43 I hope you get the result you want. It’s such a hard time.

Like you @Hollybob123 we have decided we would continue with the pregnancy whatever the outcome. I happen to have a wonderful 10 year old niece with DS who was a complete surprise when she was born. My sister was 29 at the time with 1 in 500 odds and no sign of any issues in scans, so it just shows that there’s always a ‘1’ even if it’s unlikely. I know it’s not the end of the world for us if baby is affected. It’s just overwhelming imagining a different future than the one you expected x

Thank you @labrinth1 I’m expecting my results on Wednesday too. Will be thinking of you. I totally agree the unknown and lack of control is so overwhelming xx