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Original poster

Low Papp-a AND low HCG?!

41 replies

KTD27 · 04/05/2017 11:25

Oh ladies help me out,
I went for my 12 weeks scan last week at the hospital and had a horrid experience with the sonographer saying she couldn't see baby properly due to me having had my son a year ago 'and not being as slim as you once were' it was awful. And seemed bizarre as though I am not pre-pregnancy thin I'm not massive!
Anyway, we then went for a private scan yesterday and baby is gorgeous. NT measured 1.5 and all looked lovely.
Got my bloods back today and I'm really worried as my HCG and PAppA levels are low.
HCG comes back as 0.14 and PAppA as 0.26
All my risk levels are 'low risk' but should I be concerned about these levels? I don't see my dr til next week and am really worried

OP posts:
SarahOoo · 05/05/2017 08:02

I can only suggest you wait to see the Dr, however my bloods were low back in October and our risk for a chromosome issue was given as 1:85. We had the CVS and all was clear and my baby daughter is asleep on the bed right now so please do not panic or worry. Stay level headed and speak with the Dr.

canihaveacoffeeplease · 05/05/2017 08:51

I had a baby girl in January. I had low Papp-a (not low hcg though) and had loads of extra scans to make sure baby wasn't too small/not growing properly. I had a whopping 9lb10oz baby girl, healthy as they come. The low Papp-a really scared me, but the midwives and drs were amazing, and reassured me that this link isn't proven, but they do the extra scans anyway to be on the safe side, they really are doing everything they can to keep you and baby safe. And you get the joy of seeing baby again at extra scans, which is a nice little silver lining Smile. Talk to your dr and midwife, they are there to help and answer your questions, don't do what I did and go straight to dr google, you' just scare yourself silly. Be reassured that they are giving you the best possible care.

canihaveacoffeeplease · 05/05/2017 08:51

Oh and my Papp-a was 0.12 so lower than yours.

Original poster
KTD27 · 05/05/2017 10:29

Thank you both. It's reassuring to hear stories with positive outcomes! I have booked in to do a non invasive test on Monday called the safe test and that should tell us whether we have T13/T18/T21 concerns. Am hoping that as you said it will simply mean more regular scans and cautious care which is ok by me as long as baby gets here safely.

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PrincipalCelestia · 09/05/2017 10:28

Hi, I also have low Papp-a 0.27 but normal hcg 0.64, NT 2.2 (at 13w5d though so late for a 12 week scan)
Risks have come back as low so I'm trying to remain positive, but it is scary when something abnormal gets flagged up! This is my 3rd and my first two were completely normal, uneventful pregnancies.

I am being given an extra scan at 23 weeks, uterine artery Doppler scan or something like that. If that's normal then I won't have any more scans or if abnormal I'd have extra growth scans.
Have you received any more info from your midwives/drs? The Fetal medicine lady told me to stay away from google and to think of it as very reassuring that I get this special extra scan that 'normal' pregnancies don't get...Hmm
I'd prefer to not have the worry in my mind at all!!

PrincipalCelestia · 09/05/2017 10:31

Also, kind of ironically, I am also having an extra growth scan due to previous very large babies! The midwife joked that maybe I'd average out this time Confused

Original poster
KTD27 · 09/05/2017 12:55

Oh me too! I spoke with a dr yesterday who was blunt but somewhat reassuring. He said it was highly unlikely there was anything wrong with baby and he expected the NIPT to come back clear. He explained the hormones were placental hormones and suggested the placenta may not be functioning as expected but that the evidence wasn't conclusive. He suggested he would want to give me extra growth scans from 30 weeks and I'm waiting now on the fetal medicine consultant from the hospital to call and let me know if they've been able to squeeze me in for an appointment this week. Feel a bit better now - will be much happier when our SAFE test results come in and tell us all is hopefully ok.

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Original poster
KTD27 · 12/05/2017 14:36

We got our NIPT results back. 1:15 of Edwards. I'm literally devastated. Going for a CVS next week. I can't see how this is going to end well but I'm trying to cling onto hope. My poor baby.

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PrincipalCelestia · 12/05/2017 17:01

I'm so sorryFlowers what a worrying time for you.
It's so difficult I know, but try and remain positive xx

GreedyDuck · 12/05/2017 17:16

I'm so sorry to hear that KTD. I deliberately hadn't posted before, as I didn't want to sound pessimistic, but my hormones were both extremely low and I was given a 1:3 for Edwards.

They weren't able to do a CVS as my placenta was in a difficult place, but other issues showed up on a scan at 13 weeks, and then at 14 weeks a further scan showed the baby's heartbeat had stopped. I had surgery last week and am slowly getting myself back together.

I will keep my fingers crossed for a better outcome for you, but I know the waiting is so, so tough. If you haven't already spoken to ARC I would recommend you give them a call, they were very kind and understanding.

Original poster
KTD27 · 12/05/2017 18:26

greedy duck I had seen your history on another post I'm so sorry about your baby. I have the CVS booked for Tuesday and hoping they can get what they need. I don't know how to feel whether to hope that there really is a 93% chance all is ok or whether to accept that these NIPTs are really accurate and actually it's pretty much guaranteed.
It will be limbo over the weekend I think. I called the ARC today and they were lovely - I will give them a call should the CVS show the news I'm hoping isn't true. God. This is horrid.

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Babykoala1 · 12/05/2017 21:08

I'm so so sorry you are going through this. The waiting must be awful :( A 93% chance that everything is going to be okay seems pretty good to me and I think you need to focus on that for now. I know it is very hard as you are wanting odds that are in the thousands, but if someone told me I had a 93% chance of winning the lottery, I'd probably quit my job. I think for now, you need to focus on the positives, baby looked fine on scan etc. I can't offer much information on the NIPT as I don't really understand the adjusted risks, but I had very low hormone readings from the bloods they took at my scan, and my daughter has no chromosomal abnormalities. I really do wish you all the best and I hope you get the results you want x

Original poster
KTD27 · 12/05/2017 21:24

Thank you. I think if it had been this result on the dual screening I might have clung to the 93% chance but in my understanding the NIPT is supposed to be 99%accurate. I don't really understand honestly. Is it saying there's an almost guaranteed chance I have a 7%chance? It's crazy. My mind is a mess. And it's a little girl. I'm truly heartbroken. I wish more than anything she will be ok, I guess I'll find out next week for sure.

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Babykoala1 · 12/05/2017 23:10

I really hope so too, you poor thing. The results seem confusing to me, were you given these in person? I really hope you have lots of support at home, the wait must be absolutely agonising :( But I think for now you need to hold onto the fact that there are no abnormalities present on the scan and the results are still on your side. 93% on your side! I will be thinking of you and your little girl Flowers

Original poster
KTD27 · 16/05/2017 15:23

Just back from the CVS. Wasn't too painful a little stinging and I'm crampy now but otherwise ok. Seemed like even if the results are positive for T18 they'd want to do further scans and am amnio to rule out confined placental mosaicism. God. Really hoping it's ok. Baby seemed alright on the scans but the consultant helpfully said that sometimes they can't see anything and baby still has it. So not reassured really. Hoping all is ok but feel full of dread

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Babykoala1 · 16/05/2017 18:33

Hope you are feeling okay and not too sore. when do you get your results? I think that would be just to confirm the abnormal chromosomes are coming from the baby and not the cells of the placenta. (Hopefully it doesn't come to this and the results from the CVS are good.) I hope they explained everything to you a little clearer this time. My experience of tests and ultrasounds is that some of the medical professionals can be very blunt. The fact the scan went well again is still very positive as there are various markers to be found on the scan in many cases. Keeping my fingers crossed for you.

Original poster
KTD27 · 16/05/2017 19:56

Friday I think though it could be Monday depending on the lab. They did explain it better this time though when I asked whether the NIPT was basically telling me that they'd found some abnormal cells she was quite evasive. Regardless it's done now - now we wait.

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TheDisillusionedAnarchist · 17/05/2017 19:32

I had low Papp a and borderline hcg and my daughter had T18. We were low risk at 12 weeks but anomalies were picked up at the 20 week scan.

We continued the pregnancy and Rumer was born September 2015,
She died January 2016. She perhaps would have lived longer with better medical care. Girls with T18 do better, the oldest I know of is 37 years.

I hope for you the CVS gives you the outcome you want and always happy to talk.

Original poster
KTD27 · 17/05/2017 19:45

Oh dissillusioned I am so sorry to hear of the loss of your little girl.

I fear that the CVS will give us a diagnosis of T18 cells and it will be a matter of being guided by the hospital as to whether to wait for an amnio or to make decisions based on the CVS alone.
I'm probably wrong to be thinking so negatively but I can't see how the NIPT can be wrong really. It's a horrid diagnosis and honestly my heart breaks just thinking about the road ahead of us.

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hopsalong · 19/05/2017 10:28

What were your blood results like for other things e.g. blood sugar and iron? I also had low HCG AND low Papp-A in my recent pregnancy (though not low enough to trigger concern), and in my case I think it was caused by massive hemodilution. I also had very low blood sugar, white blood cells, red cells etc. Lost 3 litres of blood at delivery but recovered remarkably easily which prompted doctor to observe that I probably had an even larger than average increase in blood volume during pregnancy. (also a large baby-- at nearly 10lbs).

Don't mean to trivialise what is now obviously a very serious concern, but I think it's possible that these hormones can both be low in the context of other results also being low?

Original poster
KTD27 · 19/05/2017 11:03

Thanks hopsalong. I'd need to get my notes not sure off hand re: other bloods. My Drs weren't concerned about trisomy at all based on the scan and NT measurement and low risk dual screening bloods. They simply wanted to be cautious measuring growth so it must be that it doesn't always mean concern otherwise they'd have wanted to investigate further.

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Original poster
KTD27 · 19/05/2017 15:27

Update to say no results until Monday now. The waiting is awful and I'm convinced it's because they found T18 and need to double check. Two morunder days of hell

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Original poster
KTD27 · 19/05/2017 15:27
  • more not morunder. Not sure what that is!
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Original poster
KTD27 · 22/05/2017 11:08

I just wanted to update in case there's ever someone like me frantically googling and stumbles across this post.
Our CVS has come back with the diagnosis of Edwards syndrome. I'm completely heartbroken and can't understand how this happened. We see our consultant this afternoon and will go from there.
If there's anyone reading who might be willing to share their experience of what happens next I'd appreciate a PM.
X

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PrincipalCelestia · 22/05/2017 11:27

I'm so sorry to read your update.
What an awful time for you.
I'm sure someone will be along soon to offer you advice Flowers
Take care x