Advice ET jak2 positive

[YBSx]

Hello Everyone,

I am looking for some clarification on and issue, I have received a medical report from my pension provider with regards to my my diagnosis condition of Essential Thrombocytopenia…. In the report it states Essential Thrombocytopenia is the same as Primary Thrombocytopenia and Essential thrombocytosis. is this correct I thought these were different. Can anyone help and if there is a difference what are they as I think I need to contest the report.

thanks Yvonne

[hunter5582]

Essential Thrombocytopenia and Essential Thrombocytosis are two fundamentally different conditions.

Thrombocytopenia is when your platelets are below reference range. (PLT<150).

Thrombocytosis is when platelets are above reference range (PLT>450).

Primary and Essential are equivalent terms. These conditions can also be Secondary, when they are caused by another condition.

In order to correct what is in the report, you would need to know the actual level of your platelets, whether one of the driver mutations was found (JAK2, CALR, MPL) and the results of a bone marrow biopsy if one was done. Given that you were prescribed hydroxycarbamide to reduce platelet levels, I think it is safe to assume that you actually have been diagnosed with Essential Thrombocythemia.

[YBSx in reply to hunter5582]

thank you for your reply.

I am diagnosed with Essential Thrombocythaemia jak2 positive. In the report completed by an independent doctor they have said that essential thrombocythaemia is the same as essential thrombocytosis. is that correct ?

Yvonne

[hunter5582 in reply to YBSx]

Essential Thrombocythemia is the same thing as Essential Thrombocytosis. The former is the more commonly used term for the diagnosis, but you may see either from various doctors.

[YBSx]

Thank you. That makes things a lot clearer to me 😊

[Cja1956]

Some doctors are not as knowledgeable as we would hope. Hunter is exactly right. They are pretty much opposite.

[Lifam]

I thought et jak2 is thrombocythemia (high platelets). Not Thrombocytopenia (low platelets counts)

[AndyT in reply to Lifam]

Yes that’s right - Thrombocythaemia and Thrombocytosis are different names for the same condition, with high platelets.

Thrombocytopenia is the opposite condition with low platelets.

Unfortunately the similar names for two rare conditions can cause confusion - including my GP when I was first diagnosed!

[Exeter21 in reply to AndyT]

Yes I think a lot of our Drs need to go back to learn MPN disease as none of mine had a clue 🙈