65 year old with systemic mastocytosis & high b12

65 year old with systemic mastocytosis & high b12

65 year old with systemic mastocytosis

Hi I am 65, I was diagnosed with systemic mastcytosis in 1998, this month was first time my B12 was high, I did start taking suppliments, but was told it is rare for b12 to show up in blood levels, does this mean my masto has progressed to a more deadly form, I am a Vietnam Vet and go to VA for treatment, even though I was dianosed by NIH and studied there for 5 years

thank u and hope everyone finds reason for there high b12 that is not bad

7 Replies

  • Hi bettyroundhead you certainly are "looking good" at 65...

    It's generally reckoned that once you start supplementing, the serum B12 test is pretty much worthless unless it come out low. So how high was the result?

    Was your Folate level tested at the same time as this is essential to process the B12 and gets "used up" in doing so.

    I am not a medically qualified person and hopefully there will be someone on here who can give you good advice.

    I wish you well from the U.K.

  • thank u and no I don't think they did a foliate test, but as u I have been using B12 suppliments, so I talked to my hemotology oncologist at VA today and he said, for me to go off the suppliments and come in on May 8th and he will do a complete work up just because that could be a sign that my mastocytosis has turned to a deadly form, but yes he did say as much as u did, to go off suppliments, and thank u for the compliment, that was my military pic at a lot younger age

  • Sorry i dont know anything about yr diagnosis but can tell you that my b12 blood level is 1900 so almost twice top of range. No doctor has worried once i tell them i supplement with high dose b12. Before any supplements it was around 280 so low but in range and id bn complainig about symptoms for long time.

  • I'm far from being an expert but it does sound as if systemic mastocytosis can affect the liver which is something that could result in raised B12 levels - and there are probably other things that could affect it

    - is your doctor following up at all on the high B12

    - of itself it generally isn't a problem though it does sometimes kick of an auto-immune reaction that prevents B12 getting from the blood to the cells where it is needed and lead to a functional deficiency ... and counter-intutive though it seems the best treatment for that type of B12 deficiency is to flood the system with lots of B12 so it beats the autoimmune reaction and plenty gets through

    Hope you mange to get to the bottom of things.

  • Hi and thanks yes I did talk to my hemotologist oncologist at VA today, he asked if I was taking suppliements, I said yes, so he said to go off of them, then come in, in 8 weeks and he will do a complete work up, not wanting me to worry, but just because I do have a non cancerous leukemia that although rarely it can sometimes turn deadly, but he said all other things in blood work was good and I am not sick, so he said not to worry,,,thank u for the advice, systemic mastocytosis I face death from allerigic shock each and every day, and it does affect organs, so that is why I got concerned and doctor said, if I had not started taking a high does of b12 he would have been concerned also

  • good to know that the most likely cause is taking high dose supplements.

    Unless you are symptomatic of b12 deficiency (and unable to get a diagnosis of B12 deficiency and absorption problems) I wouldn't recommend supplementing with high doses of B12 - unless you have an absorption problem the body only needs very small amounts of b12 and there is always the risk with using very high doses of kicking off a functional deficiency - the auto-immune response I mentioned.

  • thank you and I will let you know what doc says when I go

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