High Free beta hCG level

[islaoo]

I wonder if anyone can help me or if anyone has had a similar experience? I got my down's syndrome screening results on saturday which came back overall as a 1 in 540 risk. I thought nothing of this at the weekend as it was "screen negative", but it did seem slightly odd as with DD1 I seem to remember I had a risk of something like 1 in 140,000 (that was based only on nuchal as it was 5 years ago and they didn't do the combined test). I thought it is just because I am now 5 years older (I will be 32 at term). However, yesterday I went on the Wolfson institute website just to try and work out what the numbers meant and was horrified to see that my hCG level is 2.86 MoM - which I hadn't realised meant almost 3 times the normal level! The nuchal measurement was 1.7mm at 11 weeks 4 days (1.26 MoM) and PAPP -A was 0.77 MoM. There was no explanation of any of this in the screening report, it just said I had screened negative.

Now I have looked into this it seems wrong to me - from looking on the internet (I know, a bad idea) it seems that if the hCG was looked at on its own then that would be a screen positive for Downs. I am now terrified and also feel completely at a loss as to what to do, because I have officially screened negative so will not be offered further testing on the NHS.

Has anyone else had a similar experience? Did you pay privately to have further investigations? If so what / where? I am thinking I would rather have a further ultrasound to look for soft markers etc rather than invasive testing at this stage.

To make matters worse we started telling people about the pregnancy at the weekend including DD aged 4, who is now asking how the baby is growing every day! I am starting to regret telling her especially and feel extremely naive for taking the screening result on face value.

I am now 13 weeks 4 days so also not sure what invasive testing is open to me - I think I would now have to wait for an amnio?

Also DD has a genetic disorder which we know has a 25% risk of recurring in this and future pregnancies - although the disorder itself is manageable we know that if combined with T21 it could potentially be very difficult and so we would need to consider very seriously whether we would continue with a T21 pregnancy. I think without this extra risk factor I would be happier just to carry on with the odds as they are, but with this taken into the equation I am extermely uncomfortable with just waiting until the 20 week scan.

Sorry to waffle on, I just feel extremely lost at the moment. I have been given a telephone number for the antenatal screening midwife in our area and so I will try and call today to discuss with her, and also see if there are any options through the NHS for further screening.

THank you!

[oldenglishspangles]

I think you need to talk to the midwife for clarification. A risk factor changing dramatically I was told was not unusual. There are losts of factors at work that can affect risk - age, weight, ethnicity, smoking etc. I think previous test results also can have a factor in establishing risk. I had a nuchal fold and blood when I was pregnant with ds giving me a risk factor of 1 in 2,500 for downs. Just 9 months later when I fell pregnant with dd I had another nuchal fold and a risk factor of 1 in 55 for downs for dd. I ended up having an amnio which all came back clear. fingers crossed the midwife will put your mind at rest.

[islaoo]

Thank you for replying oldenglishspangles. There does seem to be an awful lot a variation between risk factors in different pregnancies. Thanks for sharing your experience.
I have now spoken to the screening midwife and also to ARC. Although the midwife was helpful and did explain the options for CVS /amnio very thoroughly, the lady at ARC was even more helpful and really explained things to me and put everything in context. She said the one thing I really need to look at is the 1 in 540 risk, which put another way means a 99.8% chance the pregnancy is not T21. She said bloods are "notoriously variant" and can vary even from day to day in the same pregnancy. She also said the most common reason for bloods that are a bit off kilter is natural variance - i.e. some women just produce more or less of these hormones. She said that nuchal measurement is the more robust marker and although mine is a little raised it is still really good and that is bringing my risk factor down. Also she said that looking at the blood tests it would be more concerning if the PAPP-A was very low.
I know this doesn't take away the "one in" risk but I feel a lot happier now. The lady at ARC said some hospitals don't even give the individual hormone levels as they can just make people more anxious, especially if there is no explanation as to what they mean in the overall picture.
I would highly recommend anyone in a similar situation to give ARC a call, they gave just the information I needed and felt should have been included with the screening result letter.
Still not sure whether I should look into further testing - but now feel I have the facts and can discuss with DH tonight in a more rational way.

[oldenglishspangles]

Glad you you have managed to get more information. Knowledge is a dangerous and stressful thing. It would be helpful if they automatically gave out a contact number for people to discuss their results. When you get your risk score you need time to digest the information I think. I completely get where you are coming from with the '1 in x' not being very reassuring, when 'x' is significantly lower than a previous 'x' score. I am sure whatever decision you and your husband make will be the right one and you can focus on enjoying the upcoming sleepless nights, swollen ankles, stretch marks etc

[islaoo]

Just wanted to update this for anyone going through similar, I had raised hcg level and slightly low Papp a. Baby arrived last week and seems on initial checks to be chromosomally normal. We did not have cvs or amnio so it has been a long wait. We did however have an additional scan at foetal medicine centre which was enough to reassure us though did not change the risk. Baby now sleeping contentedly on my lap!

[PrettyFlyForAWifi]

What lovely news. Congratulations!