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Scary Nuchal Blood Test results - really high hcG

(16 Posts)
SasD Tue 28-Jul-09 21:15:48

I am new to Mumsnet but have read some really good advice on here so thought I woulde ask if any of you ladies can advise me on my recent blood test results.

At 12 wks pregnant I had a nuchal scan and the blood tests. Nuchal scan results were ok 1.97 but hcG level is 3.565 MoM and PAPP-A is 0.6165. I am 33 yrs old and they've given me a risk ratio of Down Syndrome of 1:80.

I have been really sick the last 4 months and they found ketones in my urine at 12 wk scan - could this affect any of the blood levels does anyone know? I am clutching at straws now!

Thanks in advance for any advice

HerNameWasLola Tue 28-Jul-09 21:47:27

Sorry to hear you're going through this. I don't have any personal experience of high hcg levels at nuchal, though I did have a problem with the other hormone levels in a previous pregnancy which was detected by the nuchal, so I have some idea what you're going through, and it's horrible sad

A friend of mine was given a high risk of Downs (1 in 38) when she had her first nuchal back around christmas time. She started a thread here and got some really helpful responses, so I hope they help you too. Her increased risk was based on the nuchal measurement rather than the hcg levels, but I'm pleased to report that she gave birth to a bouncing baby girl on 18th July - I hope your story has a similarly happy ending.

HerNameWasLola Tue 28-Jul-09 22:11:55

And here is the post I did to her at the time. (Although her situation was different from yours in a sense as she had more or less decided she wanted to proceed to an amnio/CVS so that she would know for sure whether her LO had DS.)

"When I found myself contemplating an amnio last year I felt exactly the same way as you - I HAD to know either way, and in the end that meant accepting the risks of the procedure, but it's a very individual decision.

Totally agree with what others have said about FMC and about Nicholaides. He sounds to be a man it would be worth moving heaven and earth to see.

I am almost positive that he repeats the nuchal as a matter of course before carrying out any sort of invasive testing.

I've been thinking since we were texting this morning of questions I would want answered. You've probably got all these, but...

1. What skewed your final result away from the blood and age results? Was it purely the measurement?

2. What are the risks of mc if an amnio or CVS is performed by him generally?

3. Does he think the mc risk is the same in your case? I mention this because although we decided to wait for an amnio rather than having a CVS (partly but not wholly because it was a lower mc risk) the consultant who eventually did the amnio said I had a higher than normal mc risk anyway due to the position of the placenta and the amount of fluid. Basically there was no way he could do the test without the needle going through the placenta, which increases the risk. if your placenta is in a similar position it may mean that there would be very little difference in risk between the 2 procedures, and of course the great advantage of the CVS is that it can be done as soon as you are ready. (If that's what you decide you want)

3. Can he look at your baby's heart? There are other health difficulties associated with DS, I'm no expert but I know that heart and lung difficulties are among them.

4. If your baby does have DS (pray god that's not the case) can he tell from the scans how likely it is to have any of the associated health difficulties? For me that would have been a key factor in the decision whether to continue with the pg.

5. what other 'soft markers' does he look for?

6. Does he look at presence/absence of the nasal bone? If not why not?

If you have your photos from your babybond scan I'd take them along with you."

HTH xx

busierbee Tue 28-Jul-09 23:45:06

Hello there
I am sorry to hear you are going through a stressful time.
There is an area on mumsnet called
Ante-natal tests and choices - that you could look at. There are many supportive women there - some who have found out their baby has problems and have decided to keep them, some who thought the baby had problems but then it all turned out fine (most women in fact) and women who have chosen to terminate for foetal abnormality.
In my experience - two T21 pregnancies, both with heart problems too, two terminations - I would want a very detailed scan from Prof Nicolaides or similar. Many women in your position have gone to him and had a further nuchal and bloods and then been given much better odds and not had a cvs or amnio.
There are many soft markers for T21 and other chromosomal abnormalites - the nasal bone is one of them but not very many doctors are experienced at this.
It is a stressful time for you - but chances are very strong that all will be well for you.
Good luck
BB xxx

HerNameWasLola Wed 29-Jul-09 09:54:35

Bump

missymum Wed 29-Jul-09 18:49:32

hi there,
so sorry for you having to go through this. have had similar experience so thought it might help to share it.
at 12wks i had a combined bloods and nuchal, nuchal was normal but bloods were not, free beta hcg was 3.8640mom and pappa a 0.5134mom.
bloods alone gave me a 1:9 chance and combined with nuchal brought the risk to 1:50.
i was terrified and devastated.. in my case i decided i had to know and opted for a cvs a few days later. the wait for the result was awful but thankfully clear. am now 22 wks and all is well. my consultant did a very detailed scan during the cvs and could see a nasal bone which did give me some hope.
i guess my message is that some blood results can seem extreme but it does not always mean there is a disorder. i so hope this is the case for you too. good luck what ever you decide to do, and be kind to yourself.

SasD Thu 30-Jul-09 09:01:46

Thanks for your kind advice everyone. Missymum - looks like your results were almost identical to mine and you are fine which is extremely reassuring thank you. I have made the stupid mistake of ggogling very high free beta hCG levels and have sacred myself even more with stories of cancer etc. We are still going ahead with the amnio on Sunday so will let you all know how we get on. Thanks again x

missymum Thu 30-Jul-09 18:39:21

best to step away from google, it terrified me too! best of luck woth the amino. will keep everything crossed for you, do let us know how you get on x

SasD Sun 02-Aug-09 20:08:34

Just to let you all know we went ahead and had the amnio today. I was so anxious but it really was ok. It was almost painless and over so quickly. We were told that we should get the results by Thurs so I hope the next few days don't drag too much. Thanks again for everyone's kind words and advice x

Jasmine1111 Sun 02-Aug-09 21:07:02

I'm glad it went okay for you. Just take it really easy for the next couple of days.

Just to let you know, we were given a one in five risk of downs from my 16 week bloods. We had an amnio, and the results came back clear. It was the worst week of my whole life so I know how you're feeling.

Take care of yourself and I hope and pray that everything is okay for you.

pea1 Mon 03-Aug-09 16:58:49

Hello. I am a Mumsnet virgin so here goes....

I am 41, first pregnancy, and just had 13 week scan. Physical stuff all within normal..ok nuchal fold, nasal bone present...but but bad blood test results: low PAPP-a and high HCG, giving me a risk of 1/35 of Downs. For various reasons, we have decided not to go down the CVS/amnio route. Obviously I am v anxious, and spending too much time on the internet hasn't helped!...some stuff I've read suggests that bad blood results are virtually diagnostic of Down's. Any comments? I in 35 sounds v worrying to me, but 2.8% doesn't sound quite as bad. Anyone had similar results but a healthy baby?

Any thoughts??

Thanks!

KittyTN Wed 05-Aug-09 11:38:55

Hi everyone
I'm 14+4 by scan, age 32, 2nd pregnancy and received my combined test score on Friday - 1 in 1700, high bHCG 2.3 MoM, low-ish PAPP-A 0.91 MoM but good NT. Feeling really distressed as last pregnancy 2 years ago had a risk of 1 in 12,444. Also calculation was initailly done with wrong ethnic group so risk was originally reported as 1 in 850. Have lost confidence that my test was performed correctly and if it was, still not very happy with current risk. However, I cant get a repeat test done as now too late and no clinic is going to offer an amnio with a risk of 1 in 1700. Feeling really miserable about this pregnancy now and also feeling guilty for the babies sake.

Pea1 - dont know how mathematically minded you are but my husband found some encouraging scatter blot graphs for spread of blood results. I'll get him to give me the link of you want to look at them. I suppose it depends how bad you're bloods are, but even then the majority of screen positive women do not have a DS child. Very accessible info at www.wolfson.qmul.ac.uk/epm/screening/calcrisk.html

The other thing you might consider is asking the screeing co-ordinator at your AN dept how detailed the anomaly scan they do is likely to be - do they specifically look for soft signs and assess cardiac function on a detailed level? I'm assuming you're using the NHS. Good luck

pea1 Thu 13-Aug-09 13:40:54

Thanks KittyTN

Having decided not to have the CVS/amnio am now feeling much calmer and have got the risk factor in proportion, I hope. Also have been heartened by the experience of a number of friends and acquaintances who have had worse stats (ie 1 in 10, 1 in 5, etc~) but healthy babies Que sera sera..............

pea1 Thu 13-Aug-09 13:41:52

Thanks KittyTN

Having decided not to have the CVS/amnio am now feeling much calmer and have got the risk factor in proportion, I hope. Also have been heartened by the experience of a number of friends and acquaintances who have had worse stats (ie 1 in 10, 1 in 5, etc~) but healthy babies Que sera sera..............

mowmi Thu 13-Aug-09 16:13:11

Hi Ladies,

Just thought I'd tell you what happened recently to me - I ended up with 1 in 2 chance of DS (3.4 NF + low papp a). We decided to go for CVS because I was worried I'd ruin the pregnancy if I didn't and would much rather know what I was dealing with....anyway results are back in and baby is fine so far. Had a detailed cardio scan at 14 weeks which as all normal, they're repeating that at 20 weeks and I've been told I'll have extra scans at 28 and 34 weeks to check growth but nobody appears to be overly worried. I'm 17 weeks now so I'll keep you all updated as I go on.

All the best.

pea1 Thu 13-Aug-09 18:08:52

Mowmi- that's very encouraging - and I am delighted for you that all is going well

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