World Thrombosis Day

World Thrombosis Day 2020

Today, 13th October, is World Thrombosis Day, the day that people try to raise awareness of blood clots. Not enough is known about them in among the general public despite the fact they are quite common and can be very deadly. In fact they kill more people than AIDs, breast cancer and car crashes combined every year. Clots were my first major health issue and, it turned out, my first obvious symptom of Cushing’s so they’re a very important issue for me. This year I thought I’d do an information post summing up stats, symptoms and treatments for clots and a summary of my own clot journey.

warfarin dog tag
Me with my medical dogtag when I was on warfarin. Looking back I can see the Cushing’s moon face starting but at the time I was totally oblivious to it.

My first clot was in September 2016 when I was 32. I had none of the below risk factors (that I was aware of) and had been suffering from the feeling of ‘after cramp’ in my left calf for 2 months on and off. Finally it got so that the pain wouldn’t go away and woke me at 3am in agony. I went to the walk in centre at 7am where they suspected a Baker’s cyst but sent me for blood tests just to rule out a DVT. Everyone was shocked when the tests came back positive. That clot was just a small one behind the knee but I’ve never felt pain like it in my life. I went on Warfarin for 6 months then had genetic tests and it turns out I have heterozygous Factor V Leiden. This means 1 of the 2 genes I inherited from my parents that deals with clotting is ‘wrong’. This is the mild form and now, knowing I had Cushing’s at the same time which also increases your clot risk, I strongly believe I would never have clotted if not for the Cushing’s.

Know the risk factors and symptoms, it could save your life
Know the risk factors and symptoms, it could save your life

2 and a half years later, in March 2019, I ended up in hospital for 4 days. The same pain as before had returned but in my right leg this time. I popped to the walk in clinic who found my D-Dimer was raised again which indicates you have clotted but when they did an ultrasound of my leg, no clot showed up. 1 week later the pain was just as bad and I felt breathless so I headed to A&E. There they confirmed it; I had multiple, large clots in both lungs. This time I was put on thinners for life and by now I was diagnosed with Cushing’s so I knew that at least had a part in it as I was also nearing my heaviest by this time.

Know your symptoms, how to lower the risks and spread that knowledge; if in doubt go to a walk in clinic. It's better to find out it's nothing than risk a pulmonary embolism
Know your symptoms, how to lower the risks and spread that knowledge; if in doubt go to a walk in clinic. It’s better to find out it’s nothing than risk a pulmonary embolism

As well as the physical symptoms, blood clots can cause mental issues. Many people end up with medical PTSD after having a clot and it makes you feel far more anxious. When I first had a clot the actual words said to me were “If a piece of it breaks off and goes to the heart, lungs or brain, it can be fatal.” That is a horrifying thing to be told at any age. I believe the actual stats for PEs (lung clots) are that 1 in 3 will die. I’m not sure on the stats for a DVT. I’ve never been one for emotional ups and downs but I would get quite weepy when I had my clot (this may also have been an early manifestation of the Cushing’s too).

If you think you have any of the symptoms please, please get them checked. It’s far better you go to the hospital and find out it’s just a strained muscle than you leave it and someone finds you passed out from a heart attack or stroke. This year it’s particularly important as Covid is known to cause clots so even if you’ve had a mild form of it you could be at risk.

Visit www.worldthrombosisday.org for lots of easy to understand, useful info on clots.

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