Young Healthy Male with DVT and PE no Known Causes

[YungClotta]

Hello,

I'm a 26 year old male with no previous health conditions that was admitted to the hospital 2 months ago with a DVT in my right arm. Upon a CT scan of my chest it was found there was also a few smaller clots there as well. (Doc notes below). So far all test from the Hematologist have come back negative (for any possible causes) and the doctor has basically just shrugged their shoulders and told me to continue with my Eliquis.

I'm posting to see if there are any other recommendations of tests or treatments, I should attempt to pursue to try to figure out what my issues are. I would prefer to not take blood thinners for the rest of my life and I can find what caused the blood clots that would at least be a step in the right direction.
 
Hospitalized for:
DVT of right axillary vein, acute (HCC)    -  Primary
Other acute pulmonary embolism without acute cor pulmonale (HCC)    

Tests Completed:
CARDIOLIPIN IGA IGG IGM AB
CBC WITH DIFFERENTIAL
LUPUS ANTICOAGULANT
BETA 2 GLYCOPROTEIN 1 IGA IGG IGM AB
ANTITHROMBIN III
PROTEIN S ACTIVITY
PROTEIN C ACTIVITY
EXTERNAL X-RAY

[Peaceangel2020]

Have you tried looking into
Antiphospholipid syndrome, I'm not sure where you are based but imedical is in Australia you can order blood tests without a GP referral but you pay for it .

[Sara_MHModerator]

Hello and welcome to the forum. Thanks for your question. Blood clots can be scary. Glad you sought treatment and are working with your doctor. I would continue to do so as they are your best source of information. Upper extremity DVT and PE's are rare as it is much more common in lower extremities.

https://www.webmd.com/dvt/upper-extremity-dvt

This link has a lot of information in it (copy and paste it). At your age and situation, it makes me wonder if you had ANY repetitive movement that could have contributed to this? Do you have a family history of DBT? Cancer can cause blood clots as well. But with the testing you have, I'm sure you were evaluated for this.

I'd continue to ask questions of your doctor. You may only be on blood thinners for 3 months and then they will monitor to see if more develop and then go from there. How did you know you had them?  

[YungClotta]

All tests came back negative and now my hematologist has told me I will be on blood thinners for the rest of my life. I'd rather not have this be the case since I enjoy snowboarding and rock climbing which both don't mesh well with blood thinners.

I have no family history of clots and no signs of any cancers. There were no events/injuries that I know of that could have caused these clots.
My arm turned purple and started to swell so I went to the hospital. They found the DVT on a ultrasound and then found a few small PEs on a CT scan with some dye.

[specialmom]

That's rough. But being alive is most important. :))  Blood clots don't always let us know they are there and they can be deadly. My niece had an issue in which she went for a test for one thing but something showed up in her test that indicated she needed to see a hematologist. She's young, less than 30 years old. She has a blood disorder and will take drugs that are on par with chemo drugs for the duration of her life. It is what it is. It absolutely stinks but life goes on. There is this form of cancer that I don't know if you've been evaluated for. Polycythemia vera. It causes your bone marrow to make too many red blood cells. These excess cells thicken your blood, slowing its flow, which may cause serious problems, such as blood clots. Too many red blood cells cause clots. What is your red blood cell count? Risk factors for making it worse are smoking, obesity, etc. What are your proteins like as this is a genetic link involved with clotting issues. Questions to ask, things to follow up on. But until you have a reasonable idea that it's cleared up and the clots were a fluke, I'd stay on those blood thinners.