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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Jun 17 9:11am | Replies (504)
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@richie123

I was diagnosed with ET in February of this year. I did have a bone marrow biopsy. I have a CALR mutation. Hydroxyurea is what I am taking. Still in process of titrating the drug to try and keep me in a normal range of platelets. That being said, I have periods of extreme tiredness. Sometimes the top of my head feels "light". If I rest for a while that really seems to help. I'm just wondering what other ET patients have experienced. You also mention sugar free snacks etc.,. I am also type 2 diabetic, non insulin. Can this make my diabetes worse? I have also experienced more neuropathy over the last few months since starting hydroxyurea. I don't know what to think. My doctor doesn't seem to think the ET or hydroxyurea is a cause. Any opinions? Anyone? Thanks

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Replies to "I was diagnosed with ET in February of this year. I did have a bone marrow..."
nohrt4me | @nohrt4me | Jun 18 9:55am

I'm CALR, too. Been on HU for 6 years and bloodwork very stable in 400s once they got the right dose.

I think there is a tendency for docs to say "no" rather than "I don't know" when you ask if ET affects or causes other ailments.

It might help to get a second opinion, as managing two chronic illnesses puts a lot on your plate. But remember that ET-CALR is a relatively new discovery, and how it's different from the JAK2 "flavor" isn't well understood.

I can say that my glucose levels often run high on my quarterly blood counts. When I pointed this out to the GP, she ordered A1C tests at intervals, and they are always well within limits.

I also developed an asymptomatic goiter, what the dermatologist calls erythromelalgia (so?) and rosacea (periodic burning and flushing of hands, face and feet), itching and constipation. All of these things cropped about the same time as the ET diagnosis or after starting HU. All are nuisances, but can be irritating when they flare up. Docs like to blame menopause and age (I'm a 70 yo female). I wonder if they are related. I try to stay informed, but I don't expect to have answers in this lifetime.

Hoping you can keep the Type 2 managed thru diet and not feel too deprived. My husband struggles with his at times.

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