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Any correlation between Essential Thrombocythemia & high B12?

Posted by annetterzam @annetterzam, Jun 24, 2023

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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sregiani | @sregiani | Jun 25, 2024
In reply to @jackiecarey "Has your Hematologist said sticky platelets are the norm? Is you husband on a baby asa..." + (show)
Profile picture for jackiecarey @jackiecarey

Has your Hematologist said sticky platelets are the norm? Is you husband on a baby asa or a blood thinner..I agree not to go onto Dr. Google but there are sites that are very informative..For instance if you go on you tube and search, in your case, ET you'll find MDAnderson, Sloane Kettering, etc hematologist oncologist who specialize in just your specific disease with the caveat always discuss with your Doctor. I was surprised one day on a You tube pod cast to have my Dr. from MDA discussing PV..I believe an educated consumer is a healthy thing however, I don't do anything without first discussing with my Hematologist.

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I’ve had ET w/Jak2 for 18 months. My functional medicine doc works w/my Heme doc (who is chair at our hospital and on an MPN research team).
Yes, my platelets are sticky and a baby aspirin is a first step in keeping them sliding vs sticking. This works for me, as blood draws show every 3 months.
While we gain insight from each other, it is vitally important to run all options thru your own Heme doc. What works for one (or some) is not right for all.
Blessings and best wishes.
Sherry

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lynniebe | @lynniebe | Jul 28 5:41pm
In reply to @jroyer "Aloha, I have been prescribed 500mg everyday of Hydroxyurea to reduce my platelets. I am holding..." + (show)
Profile picture for jroyer @jroyer

Aloha, I have been prescribed 500mg everyday of Hydroxyurea to reduce my platelets. I am holding off on taking these pills because one of the warnings is so stay out of the sun. Another possible side effect is that one's skin can turn dark. #1. I find it difficult to stay out of the sun. I live in paradise for a reason--I love the sun, so I'll be talking to my doctor about this tomorrow. #2. I have seen the shocking effects of skin turning dark. Does anyone have experience with either of these issues/conditions? ALSO I'd prefer a more naturopathic path--so any input on that will be appreciated. Mahalo~

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Hi there,
I recently started taking Hydoxy 500mg daily. My skin hasn't changed and I'm quite fair so I'd notice. I don't know what your platelets are, but because mine are very high, I now have Acquired Von Willebrand's. This is why I started on the chemo. You don't want to risk more roblems, so I'd urge you to chat with your consultant. Good luck

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nohrt4me (Jean) | @nohrt4me | Jul 29 8:04am
In reply to @lynniebe "Hi there, I recently started taking Hydoxy 500mg daily. My skin hasn't changed and I'm quite..." + (show)
Profile picture for lynniebe @lynniebe

Hi there,
I recently started taking Hydoxy 500mg daily. My skin hasn't changed and I'm quite fair so I'd notice. I don't know what your platelets are, but because mine are very high, I now have Acquired Von Willebrand's. This is why I started on the chemo. You don't want to risk more roblems, so I'd urge you to chat with your consultant. Good luck

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"I now have Acquired Von Willebrand's. This is why I started on the chemo."

How are you doing with the vonWillebrand's? Feeling OK? Have you been on the chemo long enough to bring down the platelets? Good to learn more about this complication. Could you tell how the AVWB was diagnosed? Take care!

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leene808 | @leene808 | Jul 30 4:02pm

Aloha!
Yes! I too have high B12, and nobody really knows why. My levels were also off the chart. Is it a side effect of Hydroxyurea? or is it something that our bodies just cannot clear well? I am not sure, and none of my doctors seem to be worried about it. It does get excreted thru the kidneys, so if your kidney functions are off, you may not be getting rid of it.. I will ask my hematologist about it. I am due to see him this week. I do have episodes of fatigue quite frequently, and that is a side effect of too high Vit B12 levels. Definitely do not take any Vit B12 at this point.

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