Hi,
I haven't read Dr Wheatley's article but wonder about the chicken and the egg thing. Does MGUS or myeloma cause low B12, or does low B12 cause MGUS or myeloma?
Prior to my diagnosis, my B12 was low and my doctor put me on oral B12 for a 3-month course. After 2 months, he re-tested and found it had made no difference and advised me some people are unable to absorb B12 when taken orally. I started on IM [intramuscular] injections and after 2 (monthly injections) my B12 had increased and my haemoglobin had increased from 95 to 115 (within a month).
Then I was diagnosed with multiple myeloma.
Just thought you might like to know that, if oral isn't working, IM might be worth trying.
Jen
Forums
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NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
Re: Vitamin B12, MGUS, and myeloma
In my earlier post, I was trying to politely allude to the fact that some folks in the medical field question Dr. Wheatley's approach to science 
AJ Vickers and BR Cassileth, "'Living proof' and the pseudo-science of alternative cancer treatments," J Soc Integr Oncol. 2008 Winter; 6(1): 37–40 (full text)
AJ Vickers and BR Cassileth, "'Living proof' and the pseudo-science of alternative cancer treatments," J Soc Integr Oncol. 2008 Winter; 6(1): 37–40 (full text)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Vitamin B12, MGUS, and myeloma
Multibilly - You were quite gentle indeed 
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Vitamin B12, MGUS, and myeloma
Hi Multibilly, thanks for posting the report. Your earlier comments were so gentle that they went straight over my head . I am having my big batch of blood tests at the end of the month and will ask for a vitamin B12 test just out of interest as my diet is probably sufficient.
. I am having my big batch of blood tests at the end of the month and will ask for a vitamin B12 test just out of interest as my diet is probably sufficient.-
Spanish Mary - Name: Spanish Mary
- Who do you know with myeloma?: Self, MGUS
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 59
Re: Vitamin B12, MGUS, and myeloma
Yeah, I was too subtle.
Measuring your B12 level is not a bad thing to do now and then. I had my B12 and folate levels measured couple of months ago when my doc had some additional iron and ferritin tests done to sort out some questions about whether I was becoming anemic or not.
Measuring your B12 level is not a bad thing to do now and then. I had my B12 and folate levels measured couple of months ago when my doc had some additional iron and ferritin tests done to sort out some questions about whether I was becoming anemic or not.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Vitamin B12, MGUS, and myeloma
Interesting. When my primary care physician did blood work, he said everything was fine except that I had vitamin B12 deficiency. He recommended daily supplements to see if it helped with my hands tingling. 2 months later, I was diagnosed with smoldering myeloma. Are they related? Should everyone with B12 deficiencies be screened for myeloma?
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Vitamin B12, MGUS, and myeloma
Reading up on B12 deficiency it seems most people should be getting plenty in their diet. There are a number of conditions, though, that can prevent the absorption of B12 even if there is plenty in the diet. It can be an issue for vegetarians, but there is plenty of B12 in meat. If B12 deficiency is related to myeloma, I believe it must be for a really small subset of people.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Vitamin B12, MGUS, and myeloma
Hi
I was found to be B12 deficient whilst having all my blood tests prior to diagnosis 3.5 years ago. I get a B12 shot every 3 months, but I've not had my B12 levels tested again. I just assumed that the deficiency was either unrelated to the myeloma, or was as a result of having myeloma. It does seem that B12 deficiency is quite common in myeloma patients. But I wonder what the incidence is in the non-myeloma population? We only find out because of the battery of tests we are subjected to.
Similarly, I imagine there might be a high incidence in vitamin D deficiency in myeloma patients, but again, this is pretty much a wide-scale phenomenon in certain parts of the world where heavy use of sunscreen is advocated.
Alice
I was found to be B12 deficient whilst having all my blood tests prior to diagnosis 3.5 years ago. I get a B12 shot every 3 months, but I've not had my B12 levels tested again. I just assumed that the deficiency was either unrelated to the myeloma, or was as a result of having myeloma. It does seem that B12 deficiency is quite common in myeloma patients. But I wonder what the incidence is in the non-myeloma population? We only find out because of the battery of tests we are subjected to.
Similarly, I imagine there might be a high incidence in vitamin D deficiency in myeloma patients, but again, this is pretty much a wide-scale phenomenon in certain parts of the world where heavy use of sunscreen is advocated.
Alice
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AliceNorth
Re: Vitamin B12, MGUS, and myeloma
I also was taking high dose sublingual vitamin B12 once a week for years before I was diagnosed with myeloma.
Is it possible the B12 CAUSES the myeloma? Not B12 deficiency? It is supposed to amp up the immune system.
I have low white cells, especially on treatment. A few hours before my weekly labs, I took a B12 sublingual and suddenly my WBC was 4.3 (as opposed to 3-ish.). That was the only thing that was different.
I'm just wondering if anyone has heard of a correlation between high or supplemented B12 and myeloma.
Is it possible the B12 CAUSES the myeloma? Not B12 deficiency? It is supposed to amp up the immune system.
I have low white cells, especially on treatment. A few hours before my weekly labs, I took a B12 sublingual and suddenly my WBC was 4.3 (as opposed to 3-ish.). That was the only thing that was different.
I'm just wondering if anyone has heard of a correlation between high or supplemented B12 and myeloma.
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colleen676
Re: Vitamin B12, MGUS, and myeloma
I read Dr. Wheatley's article (I think it was written 10-15 years ago) on long term B12 deficiency being related to multiple myeloma and found some of the argument compelling.
Dr. Wheatley didn't mention this, but some people cannot metabolize B vitamins - it is a defect of the gene with acronym MTHFR. My MCV and MCH have been becoming more abnormal and I started taking a different form of B12 vitamins a couple of weeks ago - I will let you know if my MCV and MCH improve after taking these vitamins.
About the MTHFR gene (from the NIH):
Dr. Wheatley didn't mention this, but some people cannot metabolize B vitamins - it is a defect of the gene with acronym MTHFR. My MCV and MCH have been becoming more abnormal and I started taking a different form of B12 vitamins a couple of weeks ago - I will let you know if my MCV and MCH improve after taking these vitamins.
About the MTHFR gene (from the NIH):
The official name of this gene is “methylenetetrahydrofolate reductase (NAD(P)H).”
The MTHFR gene provides instructions for making an enzyme called methylenetetrahydrofolate reductase. This enzyme plays a role in processing amino acids, the building blocks of proteins. Methylenetetrahydrofolate reductase is important for a chemical reaction involving forms of the vitamin folate (also called vitamin B9).
Specifically, this enzyme converts a molecule called 5,10-methylenetetrahydrofolate to a molecule called 5-methyltetrahydrofolate. This reaction is required for the multistep process that converts the amino acid homocysteine to another amino acid, methionine. The body uses methionine to make proteins and other important compounds.
Several variations (polymorphisms) in the MTHFR gene have also been studied as possible risk factors for a variety of common conditions. These include heart disease, stroke, high blood pressure (hypertension), high blood pressure during pregnancy (preeclampsia), an eye disorder called glaucoma, psychiatric disorders, and certain types of cancer.
Source: http://ghr.nlm.nih.gov/gene/MTHFR .
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
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