Hi so I’m currently 20 I’m a young female I used to be a pro tennis player live a healthy lifestyle.
At age of 18 I got hospitalized with unprovoked DVT. I had thrombolysis then and it seemed to help but 24 hours later the clot came back and they tried to do it again but it failed. (Iliofemoral DVT not just somewhere in the calve). Important to say I didn’t take birth control, led an active life. I got prescribed Clexane till I did all the bloodwork for APS and etc. Week later started coughing up blood and went back to the hospital nothing was found and I was sent home. Did all the bloodwork for APS, factors and etc.
APS came back negative and all the factors came back okay except factor V Leiden HETEROZYGOUS!! (Important for the story)
I was then transferred to Eliquis and in the same period of time I did a CT where my spleen was enlarged and I had a swollen lymph node in my neck hard one. A few weeks after that I had pain again went to the ER to a different hospital. Turned out my clot has gotten way worse on eliquis. They told me to go back and Clexane and booked me an appointment ASAP with a hematologist specializing in clotting.
He put me on warfarin. I did more tests JAK, PNH, many times for APS, because besides warfarin nothing was stopping my clotting. I keep track of my diet measure my INR weekly in a lab and it’s never stable for more than three weeks.
It’s important to mention that for more than a year by that point ( few months before the initial clot was found I had elevated CRP) . I was tested for ANA, EBV, CMV, and etc. (all negative)
By that point I’ve become quite a medical mystery and it’s important to mention in my family there’s a devastating history of cancer I’m not even kidding everyone in my family passed away from some form of cancer. My mom herself had two different types of cancer. Acute leukemia at 28 and ovarian cancer around 5 years ago. So the doctors really wanted to do a PET ct to be on the safe side. It showed nothing.
At that point around half a year passed since the first clot and my doctor has seen no improvement on warfarin but finally no worsening so the verdict was to leave me on warfarin long term and I keep asking him why like what’s the diagnosis. According to him my factor V Leiden heterozygous is not enough of a risk factor for such severe clotting and I remain in the unprovoked DVT.
Flash forward a few months later I’ve been nauseous on the daily, still have high CRP, and fever every few days (38C), I’m tired all the time in pain from the blood clot I suppose, I have night sweats. I tell that to my family doctor she refers me for more blood tests and a stomach ultrasound. My CRP is still high, MCH is low, MCV is low, Iron is normal, ferritin is low and so is folic acid, so is transferrin saturation, I have ulcers in my mouth, angular chelitis all the time. The ultrasound shows a tumor on my liver of almost 4cm that just 3 months ago was not present on the PET ct. The tumor is not a hemangioma and they said it’s likely not pathological but I’ll need to redo ultrasounds every half a year or so. Okay I’m already so fed up with the situation I’m in pain almost daily, I have stomachaches, nausea, fatigue, but I’m still being dismissed. My hematologist tell me the lab is just PTS - post thrombotic syndrome..
Flashback to now my symptoms have gotten a bit worse, my stomach aches are worse, I have diarrhea on and off, spasms in my stomach, I’ve been taking iron and colic’s acid and my folic acid has gotten lower along with MCV, MCH, transferring saturation, ferritin and my red blood cells went up. (Forgot to mention I’ve also done lymphocyte pop and have low CD4/CD8 ratio)
I was referred to a gastrointerologist because there’s also blood in my stool, for a possible colonoscopy and have to redo my ultrasound for my liver. In the end I’m suffering everyday I’m pale barely have energy sleep more than 10 hours and still feel tired and when I sleep 8 I can’t even get up. I’m still on warfarin my INR is still unstable. And I’ve genuinely lost all faith in normal life. I feel dizzy all the time, I faint, my nausea is killing me.
I don’t know how to speak to doctors anymore. They don’t listen to me since I’m a young girl. My hematologist thinks I’m going insane and advised I see a psychologist. I am so tired that I don’t even want to go to doctors anymore. I just want to feel like my old self more energetic and healthy with no pain.
So if anyone can understand what I’m going through also in my age please reach out to me I’m searching for people that have a similar situation. If there are any doctors here or specialists what would be your advice? Please also if u can reach out to me.
I’m genuinely starting to lose all hope