MPN Voice
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Hi Maz,

I wonder if you could ask Proffessor Harrison a question on my behalf?. It regards platelet counts at the lower end of abnormal.

When I was diagnosed with ET on my first appointment with the haematologist I asked what my risk factor was. She responded 'high' because age 60. I replied 'but my platelets are only 500,' thinking that I could get away with aspirin only as I'm otherwise healthy

Remember this is my first appointment and I'm trying to absorb everything she is saying. But she said something to the effect 'they don't know why, but at lower abnormal levels the platelet behaviour is more likely to cause 'clumping.' I know treatment involves getting platelet levels down so I find this confusing to say the least. I certainly don't think I misheard what she said.



4 Replies

I know I'm not Maz but my platelets sometimes "clump" - so that I can't get a platelet count - and are described as "sticky". As I understand it this increases my risk of stroke. I was told that this makes me less suitable for venesection as the platelets will then behave even worse! So I went onto hydroxy to keep my counts down. Not sure how relevant this is to you!!! Jane


Thanks Jane for your resply, it will be interesting to get a response from Proffessor Harrison on this question. All very confusing. Have a good day, I'm off to work soon.

Mary x


Hi Mary, the reply is: risk of blood clots does not correlate with the platelets.

You have to bear in mind that your treatment plan will depend on your own unique situation and will take into account the symptoms you are experiencing as well as any lifestyle risk factors like high blood pressure and whether or not you smoke, and other medical issues you have or have had in the past. If you are unsure about any answers you have been given by your haematologist it is best to ask them to repeat the answer and explain that you didn't understand it. Best wishes, Maz


Thanks Maz for replying, it is much appreciated. That's really interesting! That would seem to imply as far as 'clotting' at least is concerned, the platelet level (high or low) is irrelevant.

When I see the hematologist again (have seen the nurse last two times) I'm definitely going to ask her what she meant by the 'clumping' statement and is it something specific to my own personal diagnosis. Although, I can't imagine what that might be as I am healthy...low blood pressure, don't smoke or drink, no diabetes healthy bmi and no past health issues. Maybe it's the quality of my platelets? She also said if it wasn't for my age (60) instead of being 'high risk' I would be 'intermediate risk,' which has left me questioning why not 'low risk' with platelets at 500 and no health issues. I wonder if being jak2+ is the reason?

Like you said, I need to discuss this with the haematologist.

Thanks again



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