Is d-dimer results always high with APLS - Hughes Syndrome A...

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Is d-dimer results always high with APLS

margaretjo profile image
5 Replies

I have always had the D-Dimer (spelling?) blood test when It was thought i had aclot and obviously they have been high when i have but yesterday the doctor told me that the reading would always be high for anyone with APLS. Does anyone have any information on this. I have had 5 clots since march and am worried that this is another option closed for diagnosing clots. Already i cant have ct scans because they cant get a needle in my arm for the contrast. Im worried that i will have another clot and iit will be undiagnosed. thanks

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margaretjo
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judes profile image
judes

In my experience the D-Dimer blood test is a waste of time, it either gives a false positive or false negative result. When I have had DVT's I always insist on an ultrasound they have been missed on the results of a D-Dimer

As for CT scans you can have them without the contrast but they may not give such a good results. I cannot have any sort of contrast dye as am intolarant to them all, the X ray dept have now learnt and they really don't like getting the crash team out!

travelnut profile image
travelnut

Every time I have had DVT or PE as shown on CT scan my D-dimer has been negative. Now when I go to A&E and they say "good news your D-dimer is negative so your don't have a clot" I have to explain that I have had multiple, large clots and every time my D-dimer has been negative. I am just thankful that the first consultant I saw in A&E went on to ignore the D-dimer test result as he said my clinical signs and symptoms were so much like PE.

jessielou profile image
jessielou

Hi Margaret

Basically same as travelnut. D-dimer negative, but dvt and multiple pe's. So not necessarily worth much as a diagnostic test in aps.

Luckily A n E doc took same attitude. Shame same doc didn't find aps tho!!

Hope well today

Take care gentle hugs sheena xxxxx :-) :-) :-)

Wow the odds of a D Dimer being negative and to have a clot is insanely low! It would seem that maybe its much higher to have a false negative with APS from these posts here?

I have had positive D Dimer almost always...

jessielou profile image
jessielou

Hi kristina

my mum fell 3 weeks ago, she has other autoimmune condition, what level of d-dimer considered high? Mums 1153. Wells score of 0. She's terrified of a clot.

Hope you well today

Take care gentle hugs sheena xxxxxx :-) :-) :-)

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