Hi, i’m a 22F who just recently got referred to a hematologist after having a really bad headache that included vision changes. The only thing that came out consistent in my tests were high platelets. We also compared my CBC results from last year (August, 7 months ago) and my platelets were also high back then. I’ve been feeling fatigue and getting constant migraines
Note: My platelets have always been higher than 450 but less than 500 (496, 479, 485)
The hematologist has suggested I get a bone marrow biopsy and tests for JAK2, CALR, MPL mutations but my parents are second guessing (i’m still under their care and it’s extra expensive), should we get a second opinion or push through with the tests?
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Hello there @mary11, welcome to the forum. I’m really sorry to read of those symptoms you’re tolerating, but well done seeking answers. One step closer to finding out what’s going on.
May I just check that it’s Essential thrombocythemia ('ET') your haematologist has diagnosed you with? There are many blood disorders so it’s good to be super sure what any diagnosis is. I’ll share the great Blood Cancer UK information about Essential thrombocythemia ('ET'), should that be your diagnosis: Essential thrombocythaemia | Blood Cancer UK
We forum members can’t offer medical advice so it really is best to talk it through with specialists like the haematologist you’ve seen. Personally, I tend to trust my haematologist as these sorts of issues are their specialism. As you’ve shared your age I can suggest this support for young adults: Blood cancer and young adults | Blood Cancer UK
And just a hunch based on your spellings and terminology but if you’re in the US there’s Blood Cancer United that is much like here, with specialised and localised support that may be of interest: https://bloodcancerunited.org
For what it’s worth, I live in the US with a closely related type of blood cancer to Essential thrombocythemia ('ET') called Polycythaemia vera ('PV') which is usually linked to a JAK2 gene mutation. I had genetic testing done which was indeed very expensive, but for me it was worth it as it diagnosed a JAK2 gene mutation for sure. I understand that Myeloproliferative neoplasms ('MPN') such as Essential thrombocythemia ('ET') and Polycythaemia vera ('PV') can be diagnosed without the gene mutation tests via a bone marrow biopsy and aspiration, which I also had.
Hope that helps a little at this worrying time @mary11, do please let us know how things go.
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Hi @mary11 and welcome to the forum, though I’m sorry about what’s brought you here.
Being in that pre-diagnosis limbo can be reallydifficult, and it makes sense that you and your family are weighing things up carefully.
The question of whether to proceed with the bone marrow biopsy and genetic tests, or to seek a second opinion first, is really one to put back to your haematologist directly. It’s worth asking them to walk you through the reasoning - what they’re hoping to confirm or rule out, and how urgently they feel the investigations are needed. That conversation might help your family feel more confident about the decision, whichever direction you go.
Our lovely @Duncan has already pointed you towards Blood Cancer United, which will be much better placed to support you with the specifics of navigating healthcare in the US. While based in the UK, MPN Voice is actually an international patient community with a strong focus on myeloproliferative neoplasms like Essential Thrombocythemia.
Ceri - Blood Cancer UK Support Services
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