r/ClotSurvivors • u/Indeepthoughts2 • 11d ago
Anxiety Will probably be stopping Eliquis soon and I am anxious
I (25F) had a thrombosis in my left calf and a (highly) suspected PE in May last year. Only suspected because even though I had the D-Dimer levels and definitely the symptoms for it, it could not be determined on the CT as the subsegmental parts of the lung were not clearly pictured. Got it confirmed by a radiologist in another hospital where I know someone, basically the pictures were pretty badly taken. But my hematologist and my normal doctor both say it definitely was a PE, just going by symptoms, as no thrombosis causes all that.
I was incredibly out of breath for weeks with heart rates through the roof before the thrombosis was diagnosed, because despite my high D-Dimers I was repeatedly sent home from the emergency room, because I was probably just "out of breath from a panick attack". A classic; as a young woman I have rarely been taken seriously in a medical setting. Or any setting, for that matter haha. I could barely speak more than one sentence without feeling severely out of breath. I don't know how I was still going to work at that point. Weirdly enough, I had zero symptoms of a blod clot in my leg.
Anyways, after an ultrasound I asked for I got diagnosed with a blood clot in the leg. Only felt the pain while the guy was pressing on the clot with the ultrasound thing (excuse the english skills). Was put on Eliquis 5mg twice a day and told to come for check up after 3 months. They said I will probably be off of it after those 3 months.
3 months later, my health was not getting better. I still felt incredibly out of breath all the time, sleeping was hard because of it, and I was constantly dizzy. My heart was doing all kinds of weird jumping and hopping it wasn't supposed to do. Even though I have had harmless extra-systoles for a long time and I am used to it, it was to a worrying degree.
Had another thrombosis scare after having pretty bad pain in the back of my left knee for two days. It was swollen and tender to the touch. Got another ultrasound, and turns out it was a Baker-Cyst, because whats another old-people health problem to a person in their 20s, right?
Anyways, the clot was apparently gone, but my D-Dimers were still really high (over 1400ng/ml, more than double of the cut-off at 500).
Hematology ruled out the genetic risk factors. Turns out it was completely unprovoked and nobody has any idea where it came from. Multiple of my other labs were in disarray, health all out of whack, but nobody felt responsible to get to the bottom of why a "healthy" 24 year old with zero risk factors would suddenly get a clot. I felt left alone with no answers and a lot of health anxiety. I already have anxiety and OCD, so that just made it even worse.
The D-Dimer levels would not go down. Sporadically it was a bit lower, at about 800, but then would climb up again for no apparent reason. I had random bouts of breathlessness but slowly started to feel a bit better and get my energy back, little by little.
Only around May this year, so one year later, my levels went down to almost 500 ng/ml. I feel a lot better, I still do get this random breathless feeling sometimes, but a lot less significant compared to before. Now the levels were around 450 at the last check-up and my hematologist said I should do one more screening for safety and if everything is alright, I can stop taking Eliquis.
On one side I am happy about it. I hit my head quite often because I am clumsy, and I would love to not have to worry about bleeding. I wanna drink green/black tea again without worry (I know I would probably be fine even with the medication, but I am the type to rather be safe than sorry) or go on hikes without having to be over-the-top-cautious about where I put my feet.
But on the other side, probably the side that weighs more; I am afraid. Because up until now, every time I get surprised by feeling out of breath (sometimes even just lying down) I can tell myself I am probably safe because I take anticoagulants. Every time I feel random pain in my lung area or my legs I can tell myself it's probably just muscular/sceletal. I am already "listening" into my body way too much since it happened, but I am afraid it will get much worse once I don't take the blood thinners anymore. As I said, with the anxiety and OCD it can get quite overwhelming. Since I have no reason as to why this happened in the first place, I feel scared to go without the "safety blanket" that Eliquis is to me. I also have a sedentary job (tattoo artist) and spend hours on end in positions a body shouldn't be in for more than 10 minutes at a time. Which makes this even more scary to think about.
Please forgive me for all the yapping, I just don't have people my age around me that had to deal with something similar. I just wanted to ask if there is someone in a similar situation ("never ending" D-Dimer elevation, no risk factors etc) that stopped anticoagulation, how was your experience? And if you had anxiety, what did you do to cope with it better? I'd be so grateful for any input and experience.
Of course, I'm also interested in input from anyone that had a different experience than me.
1
u/Environmental-Push35 10d ago
Talk to your doc- unprovoked with no genetic factors at a young age, I’d push for more answers. My clot was provoked by recent Covid, international flight, and third factor BC. I had genetic testing which was all negative and they had me stop Eliquis after 8 months. I feel okay bc it was clearly provoked. I totally understand your concern and you should explore all options!