Hi, new ET member - a bit confused over treatment!
I was diagnosed nearly 2 years ago with possible MDS/MPN overlap syndrome with low risk essential thrombocytosis, +ve Jak2. I was 49 then. Considered Low risk, high platelets were just discovered on routine blood test for other reasons (I was thinking menopause, thyroid, vitamin deficiencies…)
Over the 2 years, platelets typically range from 750-1300 ish, although for some reasons my Haematologist thinks its Ok to directly compare capillary blood with venous blood results, even though I can see there is a huge difference between the two. (One time I had both tested on the same day and the difference was 869 capillary blood. v 1306 venous blood!) Most of the time he just checks my capillary blood. I suspect I have had this for 10+ years as I found a really old blood test from 2005 which also showed slightly elevated platelets 451 (range 150-400) but this was never acted upon. Thankfully 95% of the problems I saw the GP about 2 yrs ago went with correcting my vit B12 deficiency, especially the headaches, fatigue and burning feet, which seem common symptoms of ET too. I had to treat myself as the GP & haematologist firmly stick to the ref ranges which are well known to miss lots of B12 deficient people.
Anyway, the haematologist would like me to take aspirin. I would rather not, considering my age, low risk and no previous thrombotic events plus there are also risks of taking aspirin which he totally ignored. I reluctantly tried it for a while, but after suffering from severe bruising I decided it probably wasn't a good idea. After all, if I was bruising that much on the outside, what was it doing on the inside?
Having read lots of comments on this site, I am mightily confused with regards to treatment protocols. It seems so variable I wonder where the scientific evidence behind it all is? The BJH 2010 guidelines seem to suggest caution with using aspirin for people with platelets in excess 1000-1500. It also states platelet count per se does not correlate well with thrombotic risk.
onlinelibrary.wiley.com/doi...
onlinelibrary.wiley.com/doi...
This article states: Patients under the age of 60 years of age who are otherwise asymptomatic with a platelet count less than 1500 × 109/l have a comparable risk of thrombosis approximating to the normal control population (Ruggeri et al, 1998).
Obviously, there is plenty I don't know about ET but I am keen to learn. I am very interested to hear from others about which protocol their haematologists use so I can weigh up the evidence myself. I do think it is vital that patients are empowered with information so we can have a proper discussion with the specialist about what really is the best treatment.
If anyone has found some interesting and helpful research papers, can you please send a link.
Thanks.