When I was around 23, I started to go to the doctor complaining about persistent, enduring headaches. I was told it was stress. I went to the optician, where I was immediately sent to the emergency eye hospital. I had idiopathic intercranial hypertension, which was causing vision loss due to my optic nerves being forced out of shape.
I asked if it was connected to my elevated platelets (as I’d known about this for some years) and was told no.
Three years later, I’d driven a four-hour journey. I got out of the car and found that I couldn’t stand on my leg. Alarmed, I took myself to A&E (emergency department in the UK.) I explained about my platelets, my IIH, and my long drive. They decided I was too young for deep vein thrombosis and sent me home without so much as a blood test.
Not content with this, I rang my general practitioner several times over two weeks. Eventually, they relented. They took some blood at 4 p.m. on a Friday and told me I probably wouldn’t hear from them. Within an hour they rang me and sent me straight to hospital because my blood test showed a high D-dimer level, indicating a possible DVT.
At the hospital, they found I had a DVT, multiple pulmonary emboli, and superficial thrombophlebitis. After three months on rivaroxaban, I went back to my GP and said, “What now?” He said it was recommended to stop anticoagulants after three months so “Just stop.” Within a month I had more DVTs in my arm.
I pestered my GP once more. They finally sent me to hematology after five years of being ignored. I was diagnosed with factor V Leiden and I have essential thrombocythemia, a rare form of blood cancer where my bone marrow produces platelets uncontrollably. Although mostly found in patients above 60, the lack of understanding of my conditions could quite easily have cost me my life.
To this day, I am terrified of having more clots. I continue to be gaslit by medical professionals who don’t understand ET, but I am far more vocal about my health and far more persistent. I am receiving trauma counseling because of this.
You know your own body better than any doctor, and my advice is to trust your gut.
Resources
Factor V Leiden
Psychological Impact of Blood Clots
Signs and Symptoms
