Wonder and worry: I was diagnosed with... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Wonder and worry

PrincessPeach77 profile image
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I was diagnosed with Factor V Leiden in 2013 when I received an injury playing softball causing me to have a DVT. I was put on lovenox then on Coumadin. The swelling never went away on the Coumadin however it did on Lovenox. I was taken off Coumadin in 2014. Recently without injury I have developed another DVT in the same leg. I was once again put on Lovenox and swelling went away. I was then put on Eloquis and in 24 hrs the swelling was back. I'm back on Lovenox and less the 24 hrs, swelling is gone. I was told no other blood test is needed due to it would.just shown have other stuff in my blood. I'm on a diet to lose weight and doing well. There are 14 females, same side of family that have Factor V Leiden. Recently my PCP asked about my water retention, joint pain, increased sensitivity to sunlight. I was confused. I went over health history with my Aunt just last night. Same side of family with Factor V Leiden I have 2 aunts that had Lupus, also RA runs rampant, cancer, and diabetes. Any suggestions on how to get my PCP or Hematologist to look past just my weight (which I've lost 15lbs already) and see if other issues may be causing my slowly developing issues. I'm very active, swimming, softball, fire fighting, hunting, camping, helping with friends with farm, etc. Any suggestions are welcome! I just want fixed to reduce my issues.

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PrincessPeach77
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PrincessPeach77 profile image
PrincessPeach77

They mentioned the lupus anticoagulant but the Hematologist informed me that it would just show I have other "stuff" in my blood and to lose weight. I will be seeking another opinion. I am also wondering after reading so many articles if I may be non- respondent to oral blood thinning medications. Thank you so much for you input. I will be looking for a second opinion.

MaryF profile image
MaryFAdministrator

HI, they certainly need to test you for Lupus, also for Thyroid problems, plus of course the usual Ferritin/Iron, Vitamin D, and B12., and if in testing mode your doctor could also test you for Sjogrens,. Make them aware that some people are seronegative for quite a period of time in some cases. I was one of those. Also to re do the three tests for Hughes Syndrome/APS which are these:

Anticardiolipin Antibodies (aCL)

Test

Sometimes referred to as Antiphospholipid

Positive in 80% of cases

Higher Levels = Higher risk of Thrombosis

Lupus Anticoagulant (LA) **

Test

Positive in 30-40% of cases

Cannot be used if patient is on warfarin

Beta2GP1

Test

This is a newer test, not routinely performed, but occasionally positivite when the above two tests are negative

MaryF

PrincessPeach77 profile image
PrincessPeach77 in reply toMaryF

I have had issues with my Vit. D before and take a daily suppliment for that. I will take this list to my dr. and with me to my specialist when I get my 2nd opinion. I greatly appreciate all the info.

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