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Any correlation between Essential Thrombocythemia & high B12?
I was diagnosed with Essential Thrombocythemia in December 2022. My platelets have been kept under control with 500 mgs of Hydroxyurea 3 x a week. A recent blood test shows abnormally high B12 levels. Anything over 900 is concerned high. My level is 7,500. This level scares me. Everything that I have read on the Internet is not good. Of course I will find out more when I see my Primary Doctor and my Oncology Hematologist. I'm anxiously awaiting for answers.
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The doctors can look at other blood markers to see if anything else is high. My Hematologist said they don't even worry about anything under 2000. My B12 was 7500. Don't worry too much, just make sure they do other bloodwork to see if anything else is wrong. Good luck to you!
Thank you so much for your reply..it was reassuring and thank you again for the information..
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2 ReactionsAnyone have eosinophilia thrombocytopenia?
ET, 3 years on Hydroxy, my B12 is very high, two hematologists have told me not to be concerned about it. I am having high potassium readings which is being explored. Always something.
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2 ReactionsFollowing to hear more about those natural approaches.
Well, I learned that Rx companies have to report any and all side effects--so these side effects are likely from higher dosages than my beginning dose, which the doctor did reduce to 500 mg every other day to start with. We will see what happens after one month of this...end of July will be one month. It appears there are nothing more effective than these meds (gotta do what ya gotta do).
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3 ReactionsHi @bch, most everything we take can have side effects. Look at an aspirin bottle, hair coloring, the glue we use in crafts, etc.
Reminds me of a joke from the late, great George Carlin.
‘The surgeon general warned today that saliva causes stomach cancer. But apparently only when swallowed in small amounts over a long period of time. ”
Yes, there are some powerful meds on the market with listings of potential side effects. Drug companies are required to list them but it doesn’t mean people who take these meds will even experience one or all of them. All my life I did my best to avoid any meds. So you can imagine my eyebrow raising when I actually had my own team pharmacist for my AML/transplant journey! Say what??? I was on a huge list of meds, many with black box warnings…gulp. But here I am, 4 years later…better living through chemistry! The drugs worked, I’m healthy and in a durable remission and off everything! While we’d all love to rely on a kinder, friendlier treatment with herbal teas, sometimes our health conditions require extra help such as blood cancers.
Have you begun any medications for your ET?
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4 ReactionsActually I never said anything about natural approaches or not taking HU. I've been on it without side effects. I was asking about high B12 levels in my blood.
I have posted here about high B, with increased hydroxy doses my B has suddenly dipped. My Hema told me this week that's probably a side effect of hydroxy?
You said all that so succinctly! Thank you! I have begun the drug treatment beginning in July and the only side effect might be a little constipation—not bad, just a bit different. I’ll update after a month.
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