Confused by Medical Records - Idiopathic Essential Thrombocytosis

Hi everyone, just looking for some advice and to see if anyone else has been in a similar position.

I first started posting a few years back, after consistently slightly elevated platelets (450-600) had been detected during some routine tests. Long story short, after all the tests (including genetic and bone marrow), the consultant said that although she suspected Essential thrombocythemia (ET) initially, there wasn’t enough info to diagnose me. She lengthened out my check-ins to every 9 months or so and I’ve had 2 since, with no change. I’ve been happily plodding along, content with the fact that there’s nothing I need to be worrying about and that all results other than the platelets have been good.
I specifically asked the consultant a couple of times re: things like travel and medical insurance and if I needed to declare anything and she said no as nothing had been diagnosed.

Fast forward to now and I had to get a copy of my medical records from the GP for a separate reason. Where I live in N Ireland, we can’t see our records online and I had never seen mine before. In the pre-existing conditions category, “Essential Thrombocytosis (idiopathic)” is listed. I’m confused about what that means and what effect it might have on travel and medical insurance policies I have taken out, where I have declared no pre-existing medical conditions. As far as I was aware, I didn’t have any! Does anyone have any advice? Or am I reading into it too much? Is Essential Thrombocytosis (idiopathic), just a fancy way of saying high platelets but no diagnosis of disease? I’m going to ask the consultant about it at my next review appointment, but just wanted to see if anyone here could offer any insight. Thanks!

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Perhaps you might consider taking it up with your GP too and get the diagnosis removed from your records otherwise it means your travel and medical insurances are perhaps invalid.
Please do let us know how you get on.
Look after yourself

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Idiopathic I believe means no known cause
You have thrombocytosis and the cause has not been found
I would double check that with your GP
Once you have done that maybe a chat with your insurers and medical policies
They may just note it
Better safe than sorry with policies

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Hi @ZoMoo
We had similar situation a few years ago. Personally I would tell my travel insurance company everything about ANY health problems. Better safe than sorry. The bills can be astronomical if there’s a problem.!
As an aside I suffer Chronic myelomonocytic leukaemia (CMML) with LOW PLATELETS etc. Still OK though on watch and wait.
Very best wishes
Uncle Jack.

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