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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Very interesting. My PCP did test and I was advised to take B12, but never thought to ask my hemo/oncol. I'll send an email this morning

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My Hematologist didn't know this. I was worried about too much B12, but it isn't an indication of anything serious.

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My new oncologist recommended I take massive dose of B12 vitamins of 20, a week and I have ET and have been on hydra 500 mags for 10 years. After reading this I stopped taking B12. What kind of crazy advice was this, I’m supposed to lower my platelets not increase them. Time for a second opinion as she also wanted a bone marrow biopsy when all my essentials were normal.

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I checked with my hemo/oncologist and taking B12 as advised by my PCP is ok with ET Jak2.....He's with a world class cancer hospital, so I trust his opinion. I have no other health issues

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@willerta

My new oncologist recommended I take massive dose of B12 vitamins of 20, a week and I have ET and have been on hydra 500 mags for 10 years. After reading this I stopped taking B12. What kind of crazy advice was this, I’m supposed to lower my platelets not increase them. Time for a second opinion as she also wanted a bone marrow biopsy when all my essentials were normal.

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Good morning, @willerta. It’s important that you don’t change any of your medications based on what someone in the forum has said. No one in our forum can diagnose or offer treatment for a disease or condition. What may work for one person may not be appropriate for others.
So please, continue to take your Vitamin B12 supplements as directed by your oncologist! This is the person you need to rely on to help you make the best medical decision, not members of the forum. They don’t know your whole story or medical history. Those decisions remain between you and your doctor.

Your new oncologist also recommended a bone marrow biopsy. Since you have a blood condition that is causing an overproduction of platetlets, your doctor is wanting to investigate the cause. The bone marrow is the heart of the blood manufacturing site in the body. By having a bone marrow biopsy, your doctor will be able to get a clearer picture of the over all health of your marrow and its ability to produce healthy blood cells. You can ask your doctor what they hope to gain with the biopsy and if it’s necessary. But if they recommended it, I hope you decide to have it done because these aren’t done for frivolous reasons.

Please, again, don’t let advice from others in the group misdirect you or cause you to have doubts about your own doctor.
Certainly if you’re not comfortable with your doctor for some reason or want a second opinion, that’s always a valid concern. But sometimes even well-intentioned comments can plant a seed of doubt in our minds which isn’t warranted.

I hope you continue to take your Vitamin B-12 now…there was a reason your doctor prescribed this dosage. Do you feel more comfortable about taking them now?

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I have PV and though its not ET is one of three myloproliferative neoplasms..I take a vitamin B supplement and B12 is extremely important..My hematologist keeps an eye on it..Your level to me is off the charts high, and understand why your expressing concern...I wouldn't accept "it's no big deal" demand an answer, that answer should come from your hematologist considering you have ET. if you don't get a logical answer then it's time for a second opinion from a hematologist..It's time to get down in the weeds and look for an answer, It's your body and no one cares about your health more than you.

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@loribmt

Good morning, @willerta. It’s important that you don’t change any of your medications based on what someone in the forum has said. No one in our forum can diagnose or offer treatment for a disease or condition. What may work for one person may not be appropriate for others.
So please, continue to take your Vitamin B12 supplements as directed by your oncologist! This is the person you need to rely on to help you make the best medical decision, not members of the forum. They don’t know your whole story or medical history. Those decisions remain between you and your doctor.

Your new oncologist also recommended a bone marrow biopsy. Since you have a blood condition that is causing an overproduction of platetlets, your doctor is wanting to investigate the cause. The bone marrow is the heart of the blood manufacturing site in the body. By having a bone marrow biopsy, your doctor will be able to get a clearer picture of the over all health of your marrow and its ability to produce healthy blood cells. You can ask your doctor what they hope to gain with the biopsy and if it’s necessary. But if they recommended it, I hope you decide to have it done because these aren’t done for frivolous reasons.

Please, again, don’t let advice from others in the group misdirect you or cause you to have doubts about your own doctor.
Certainly if you’re not comfortable with your doctor for some reason or want a second opinion, that’s always a valid concern. But sometimes even well-intentioned comments can plant a seed of doubt in our minds which isn’t warranted.

I hope you continue to take your Vitamin B-12 now…there was a reason your doctor prescribed this dosage. Do you feel more comfortable about taking them now?

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Thanks for your advice. I’ve read that B12 promotes the production of platelets. Is this true.?

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@sregiani

My heme doc said not to look anything up on the Internet. Often times the information does not apply to my situation, so I would think the same advice would apply to you!

Breathing, breathe out. It’s going to be OK especially after you know more about the scary stuff.

BTW: we recently learned. There is a difference in how bloodwork is processed. My husband was told he had low platelets (83). On further analysis with equipment that could check his platelets immediately it was found his are just very sticky. So 3-4 platelets clumped together looks like one. He still has some stuff to go through, but this is better news than what we expected. I hope the same is true for you.

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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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@willerta

My new oncologist recommended I take massive dose of B12 vitamins of 20, a week and I have ET and have been on hydra 500 mags for 10 years. After reading this I stopped taking B12. What kind of crazy advice was this, I’m supposed to lower my platelets not increase them. Time for a second opinion as she also wanted a bone marrow biopsy when all my essentials were normal.

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hmm, 20 tablets a week? I wonder if there was a disconnect in the conversation. Have you discussed this with your Hematologist? At the very least, a second opinion is in order. I have Pylocythemia Vera because of your post I looked up Vit B supplements which I faithfully take everyday...Have for years. I sent a message to my Hematologist asking if taking B 12 supplements with my diagnosis is ok considering they increase red blood cells. There's a lot of benefits to B12 and don't want to stop without her buy in.

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@willerta

Thanks for your advice. I’ve read that B12 promotes the production of platelets. Is this true.?

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I don't know..What I do know is Vit B increases red blood cell but it does a lot of other positive things for your body so I won't do anything without first speaking to my hematologist..We have discussed it but never in depth.and never told not to take it....I do know that platelets are not actually cells..This is a good question for your hematologist..Do you feel comfortable speaking with him/her? There's nothing you shouldn't feel comfortable talking about with your Hematologist that's how you know it's a good fit.

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