Genetic testing

[Anna1511]

Very anxious to know what will come out of genetic testing 😬

Only thing i was told as blood was drawn is that they check kidneys, liver and how or what is with coagulation? More they didnt explain to me😬

[Lure2]

Hi,

Do you have a diagnose of Antiphospholipidsyndrome? Can you tell a little more about yourself if you have our illness.

[Anna1511 in reply to Lure2]

So far I dont know much, I just know i keep clotting and thats why the testing to know more?.

[MaryF Administrator in reply to Anna1511]

So the three tests to ask for are.... Lupus Anticoagulant - (this is not a Lupus test)!

Anticardiolipin antibodies and finally, the Anti-B2GP1 test. Also be aware that people with this condition may also have a Thyroid problem and also Sjogrens, so good to rule them out, people with an untreated Thyroid can have erratic heart beats. bmj.com/content/345/bmj.e7895 We do also suggest to our members on here that they get their Ferritrin, Folate and also B12 and vitamin D tested. If your GP or consultant is in 'testing mode' perhaps they could do further tests for you, then you can find out if you are on this forum for the right reasons. Best of luck. MaryF

[Anna1511 in reply to MaryF]

Thanks a a lot :)))

I am already on a weekly ferrit infusion for a while b12 was good

[MaryF Administrator]

Hi, if you are looking at a diagnosis for Hughes Syndrome/APS, have you had the actual blood tests done for this disease? Have you got a Rheumatologist/Haematologist who understands this syndrome? Let us know, so we can help further. MaryF

[Anna1511 in reply to MaryF]

Dont have any if these

[Mermaidatheart]

Wow!! That is a lot of vials....

Please keep everyone posted, if you want to share.

[shakes]

Hi ! I was diagnosed with apps 16 years ago my haematologist did a genetic screening and it showed I had a mutation of my prothrombin gene 101 I think, long time ago! At the time he felt that it was significant to my clotting issues and also that I should have my children tested, i have 4 but only one has the wonky gene what I was told at the time was that he might have issues with clotting but would not necessarily develop aps but should he break a leg or something that it would be wise for him to take a baby aspirin as a precaution xx

[Anna1511 in reply to shakes]

I got my first dvt after a bad fall 😬 didnt break anything but it was bad!.

Was on eliquis 3 months then stopped then came the second one and now on xarelto and waiting for results to see whats the next game plan