Wonder and worry

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.

5 Replies

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  • Hi and welcome

    Im assuming from your terminology and medication names that you are in the USA?

    We do have people on this forum who have FVL as well as Hughes but as you can appreciate this is mainly a forum for Hughes.

    Have you ever had the blood tests for Hughes/Antiphospholipid Syndrome? If not then I think it would be wise to do so because of you family history and now your obvious sticky blood. The three antibody tests you need to ask for would be:

    Lupus Anticoagulant (nothing to do with Lupus)

    antiCardiolipin

    antiB2GP1

    Its also possible to have Lupus with your condition and or Hughes.

    Weight should not be a factor its how sticky your blood is and if you are carrying the risk factor for clotting i.e. the antibodies for a clotting disease like Hughes Syndrome! If your Doctor will not test you then find another who is willing to do so. You may need to stay on anticoagulation for life.

  • 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.

  • No one is a nonrespondent to blood thinners! They just didn't get the dose correct! You are right get another opinion.

  • 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

  • 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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