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Starting 17th year with ET. What's ahead?

Blood Cancers & Disorders | Last Active: Jan 19 4:08pm | Replies (52)
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@1pearl

Hi,
I am just curious how those of you with diagnosis of essential thrombocytosis had diagnosis confirmed. Is just high platelets enough? What if platelets are decreasing with no treatment, but white blood cells are high, and neutrophils are increasing? I ask because I went to doctors for four years about my very enlarged right ring finger proximal phalange joint. MRI from two years ago was unable to determine problem and that radiologist recommended needle aspiration to rule out infection. Rheumatologist I saw through difference insurance now since I became Medicare age recently ordered ultrasound guided needle aspiration about two weeks ago but hasn’t been able to find where to schedule me for that. I think infection should be ruled out before I take Hydrea which is a serious cytotoxic chemo med.
In summary, how were those in this group with ET have their diagnosis confirmed? If you are comfortable sharing, please comment.
Thanks

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Replies to "Hi, I am just curious how those of you with diagnosis of essential thrombocytosis had diagnosis..."
Lori, Volunteer Mentor | @loribmt | Jan 14 1:24pm

@1pearl Since you’re new to the diagnosis of ET, you might want to look through some of the other discussion by members with ET.

This would be a good place to begin: Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/

You’ll be able to speak with other members, such as @huronshores who was diagnosed with ET with no assignable cause.
They write in this comment:
https://connect.mayoclinic.org/comment/203937/
You can also find a lengthy list of other discussions regarding ET by typing Essential Thrombocythemia in the upper search bar.

I’m also posting a few more articles to read through since you’re concerned about ruling out an infection before starting HU to treat your condition. These talk about differentiating between essential (primary) thrombocythemia and thrombocytosis https://emedicine.medscape.com/article/206811-workup?form=fpf
https://www.nhlbi.nih.gov/health/thrombocythemia-thrombocytosis
I hope you’re able to get your test run soon by the Rheumatologist. At least you’ll feel like you’re moving forward.

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janemc | @janemc | Jan 15 7:52am

A bone marrow biopsy has long been the gold standard for diagnosing ET.

Happily, now diagnosis is possible from just a blood draw, as more sophisticated analysis has evolved.

First: do you have a level of platelets above the normal range?

Second: Do you have one of the three "driver" mutations (JAK, CAL, MPL) that cause overproduction of platelets?

If both boxes are checked -- ET is the diagnosis.

It is also possible to have ET and NO driver mutation.

And it is also possible to have high platelets for numerous other causes than ET.

There is a lot to process. Click on the links wonderful Lori has provided, and soon you'll feel much better informed.

Your concern about Hydrea if you have an infection is interesting. Hydrea (or HU) does lower our immune response, so it might mean antibiotics would be less effective.

I hope you will share with us what you learn on this topic.

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