Blood tests/Nuchal Fold

[EmmaKateWH]

I had a very unsatisfactory conversation with a midwife today who phoned to tell me that me that my risk of downs syndrome was high. My PAPP A level is 174. Apparently it should be 250 or higher. When I had my 12 weeks scan they measured my nuchal fold and that was well within the normal range. The midwife that phoned me booked me an amniocentesis for Friday morning. Having been told that our risk is much higher than normal for my age (28), I don't want to wait for 4.5 more months worrying like hell that something is wrong. Did anyone in this situation have anything else other than the amniocentesis? Did anyone have another scan or something to give them a better idea of the magnitude of the risk before deciding what to do about the amnio?
Any advice greatly appreciated.

The amount of threads on this at the moment is astonishing really. There is another further down I think EmmaKate - also check on the related board ante-natal tests and choices for advice.

Can I just ask how far along you are now? Did they give you a risk assessment based on your bloods and the nuchal test together? If not - the bloods alone are not a great indicator.

If you read the other thread (will try and find it for you) it tells you how the most accurate risk asst is based on both tests. If you have just had the triple test - not very satisfactory.

However if you are over 13 and a bit weeks a further nuchal is not possible. Did they tell you what your risk factor was. NHS usually just say screen positive which isn't a big help when weighing up against the miscarriage rate.

I get really fed up of the NHS approach to nuchal screening. Some areas do it properly but it seems others don't bother and it causes so much anxiety.

If you want to think about something other than an amnio then quickly book in for a detailed marker scan at a good scanning centre. This is more detailed than the anomaly scan and will give you more info. Also ask MW for actual risk factor to help you make the choice.

The amnio isn't something to be entered into lightly and I don't think they give enough accurate info tbh.

Sorry if I'm going on but I went through this recently and I am on a bit of a mission with it all! good luck.

Have they given you an overall risk factor yet?If your pregancy is up to 14 weeks you should be able to have CVS which is not disimilar to amnio but can be done at this earlier stage and gives you a provisional result in 2-3 days. If you have a high risk from nuchal scan/bloods the most often course seems to be to offer CVS.With scans I think an experienced doctor can also look for 'soft markers' such as the presence of a nasal bone which can alter the stats. I've been in this situation twice but I was in my late 30's so it was not totally unexpected. Remember that even if the odds sound bad from the nuchal fold scan its almost certain that the odds will still be in favour of having a healthy pregnancy. It will be a difficult time for you whilst you decide your next steps but stay strong and all the very best.

BTW - the PAPP A levels sound confusing, they are usually given as a decimal and they need to be around 1.00 so not sure what they mean by saying it should be 250 - is she talking about the risk factor do you think?

Fifitot - I have been given a Papp reading of 2.694 IU/I equivalent to 0.9139 MoM. can you telle which decimal figure should be 1 - I'm guessing it's the second
because I've also been told I'm high risk.

Thanks for any help.

Yes it's the second and tbh that isn't that far away from 1.00 MoM. Try ringing ARC who will give you more detail but that doesn't sound too low. However I am not an expert so try to ring ARC who will give you the best information. Good luck.

Hi - sorry in advance for long post.

I was told I was 1 in 173 - but this was not 'high risk' for my hospital as they offered cvs tests (much higher risk of miscarriage so you have to be 1 in 150) and not amnio. I went to my doctors as my treatment at NHS was horrible (sonographer said don't worry if still high risk at 20 weeks you can still get rid of it) It was Dec 17th and I couldn't get results etc of cvs on NHS until after christmas so I was in a bit of a state. She said to go to the fetal medical center and have another scan (as my scan didn't show nasal bone, and they did the nuchal fold dimensions around 60 times and just seemed to take last reading?) So I had another scan on Dec 23rd (best £150 ever spent) and after being led really gently through all measurements by sonographer, Professor Kypros Nicolaides himself came into check the results and said absolutely no worries at all, no downs markers in place and risk now 1 in 10,000?!?!? So long story short I would recommend having another scan and if possible at fetal medical as they are amazing - if you did need an amnio/cvs they would do it same day and get your results back to you in 2 days. Their risk of miscarriage is extremely low, FMC said no risk as its never happened from the professor, he is the leading doctor for the scan and the test and performs so many its worry free, however on the NHS they only need to perform 10 a year to still be able to keep performing the operation.
I felt so let down by the NHS for my scans I have had my 20 week scan and am about to have my 31 week scan at Fetal Medical www.fetalmedicine.com/fmc/ I really can?t recommend them enough.
I had a hard time of it as being told I was 1 in 173 was a huge shock to me and looked into loads of options and I?m really pleased I chose this low risk option first ? please let me know if you have any other questions.

thanks everyone. had the amnio today. fingers (and legs!) crossed.

Hope you get your results quickly xx