Hello there @Hugo, welcome to the forum and your courage shows. I’m so sorry to read of your PE and diagnosis with Essential thrombocythemia ('ET') but would say you’ve come to just the right place. The NHS really is a marvel, long may it last.
While I don’t want to bombard you, perhaps when you’re ready you’d like to read the great Blood Cancer UK information about Essential thrombocythemia ('ET'): Essential thrombocythaemia | Blood Cancer UK
In 2023 I was diagnosed with Polycythaemia vera ('PV') which is closely related to Essential thrombocythemia ('ET'). Both are types of Myeloproliferative neoplasms ('MPN') which you may also like to read about as they tend to have similar and overlapping symptoms, treatments and side effects: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Just to check, by PE do you mean pulmonary embolism? There’s so many acronyms in healthcare. Unfortunately, with Myeloproliferative neoplasms ('MPN') our main risk is clotting, which I believe a PE is caused by. I had a heart attack caused by a clot so can perhaps empathise with your experiences. Pretty terrifying for me, but I’m here to tell the tale!
Like @GenesisDevice says, do consider calling the specialist Blood Cancer UK nurses. I’d also say it’s wise to let our specialists know about any new symptoms and side effects, like the aching arm, headaches and fatigue.
I also take hydroxyurea, I was told to slow down the overproduction of blood cells in my body, plus aspirin to thin my blood. From my non-medical understanding, having regular complete blood counts is typical with Myeloproliferative neoplasms ('MPN'), and especially frequent after diagnosis. In my case they’re every other month now. I’ll keep my fingers crossed your hydroxyurea does a good job, and if not then there are plenty of other medicines that other forum members have mentioned taking for Essential thrombocythemia ('ET').
Perhaps you might like to find others around the forum who live with Essential thrombocythemia ('ET') to get a sense of how it can be tolerated pretty well? You can use the search box at the top or Related Topics below. Personally speaking, my haematologist reminds me that we are likely to live into normal old age with Essential thrombocythemia ('ET') or Polycythaemia vera ('PV'), and they won’t be what causes us to pass away, with just some slight adaptations like being more careful in the sun.
Hope that helps a little at this difficult time @Hugo. Do let us know how you get on, and I’d say sharing this news with loved ones might offer further support.
