Hello Melody,
There is nothing at all unusual to have a B12 level of 2000 ng/L while on treatment. The reported level does not represent your actual body stores because you have recently been on treatment. I have explained this in a quote at the end of this message. Stopping treatment for five days is not sufficient to ensure that your serum B12 is in equilibrium with body stores. Results of my current research show that, in my case that might not be typical, even stopping oral B12 for four weeks was not sufficient, after taking very small doses.
Do you have diabetic neuropathy that is somehow being improved by massive doses of B12? Or, do you actually have vitamin B12 deficiency?
Unfortunately, because you have been on treatment, you cannot now use methylmalonic acid or homocysteine for diagnosis of B12 deficiency. Please see the quote at the end of this message for an explanation. You can, however, still use methylmalonic acid and homocysteine to test for effectiveness of treatment.
The doctor who said this to you:
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"Ugh, I WOULD NEVER TELL A PATIENT TO TAKE ANY B-12 UNLESS THEY WERE ANEMIC"
"I don't believe it, I was never taught this in medical school, they never mentioned it would help neuropathy, and it's only prescribed for people with severe anemia".
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has no idea about vitamin B12 deficiency, but is typical of most of those I have seen.
I have suffered significant, and probably irreversible, neurological damage as a result of undiagnosed vitamin B12 deficiency, but have never had any haematological evidence of it. You are welcome to read more about doctor's reactions, on the Doctors-Apathy page of my web site (URL at end of this message).
According to experts, about 30% of patients with B12 deficiency have no haematological signs. For example, Lindenbaum et al found:
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Among 141 consecutive patients with neuro-psychiatric abnormalities due to cobalamin deficiency, we found that 40 (28 percent) had no anemia or macrocytosis.
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and concluded:
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We conclude that neuropsychiatric disorders due to cobalamin deficiency occur commonly in the absence of anemia or an elevated mean cell volume and that measurements of serum methylmalonic acid and total homocysteine both before and after treatment are useful in the diagnosis of these patients.
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Here is a link to the abstract of the article, my reference BA12:
Neuropsychiatric disorders caused by cobalamin deficiency in the absence of anemia or macrocytosis, J Lindenbaum, NEJM Volume 318:1720-1728
You can find links to many articles about B12 deficiency, on the References page of my web site.
I have previously explained, in some detail, how to use methylmalonic acid and homocysteine to test for effectiveness of treatment, on the following thread:
http://neurotalk.psychcentral.com/thread41358.html
I have copied an edited version of my post on that thread, to the end of this message. I suggest that you read the original thread to see the context of my message.
You are welcome to ask me any questions here on your thread. If you prefer, you may contact me for a private discussion by sending an Email from the Contact page of my web site.
Paul
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Since late 2005, I have been investigating vitamin B12 deficiency by searching the Internet, and by using myself as a guinea pig for my own original research. My main focus has been on misdiagnosis of B12 deficiency, although the current, and planned next series of tests, are also investigating effectiveness of treatment. I have published a web site to expose the problem of misdiagnosis, to provide a resource of information to patients and to share the findings of my own research. You are invited to visit my web site; the URL and link are at the end of this message.
I have some suggestions about how you can test the effectiveness of your treatment for B12 deficiency.
Just one point; you have given us figures for your result but no units; this can be a problem with interpretation. For example, some labs in USA still use ng/L (= pg/mL) for serum B12, while most others in Europe and Australia use pmol/L. I assume that your serum B12 of 2000 is in ng/L because that is the limit of most lab analysers; it is equal to 1476 pmol/L.
Your current B12 level of 2000 ng/L could be misleading. The serum B12 test only tells you how much B12 is in your blood; this will be affected by recent injections or supplements so will not indicate your true body storage level. You could allow the serum B12 level to reach equilibrium with body storage level, and truly represent body storage level, by ceasing treatment for a few weeks. Even after reaching this equilibrium with body storage, serum B12 does not show whether or not your cells are actually receiving the B12 or are able to utilize it.
You could use the new “active B12” (holotranscobalamin) test, after two weeks without any treatment, as this is claimed to more accurately indicate the level of B12 available to the cells. I am currently investigating the effectiveness of this test, and will soon publish my results. The “active B12” still does not tell you about how well your cells are able to actually utilize the B12 delivered to them.
The best way to test for actual effectiveness of treatment is to measure the two metabolites of B12, methylmalonic acid (MMA) and total homocysteine (tHcy). These tests are normally used for diagnosis of vitamin B12 deficiency, by comparing the results before treatment with those after treatment. In your case, as you already have been receiving treatment, you would only be using the “after” results.
Both MMA and tHcy are sensitive indicators of any deficiency of B12 available to cells for production of chemicals required by the body. They are toxins that are left over when there is insufficient vitamin B12, so will increase when there is a B12 deficiency, indicating a true cellular deficiency. MMA is specific to B12 deficiency, whereas tHcy is also sensitive to folate deficiency. Neither test is perfect, with some false positive and false negative results, but are the best available and are very useful if correctly interpreted. I suggest using both for maximum certainty.
I suggest that ask your doctor to request that fresh blood samples to be sent to Mayo Medical Laboratories for testing for both methylmalonic acid (MMA) and total homocysteine (tHcy). Your local lab could test for homocysteine, but I do not recommend it in this case. Mayo uses the reference method, unlike most other labs, and should be more reliable. These tests will not be cheap, but should help to rule out any problem with your treatment. I would be happy to assist you with interpreting the results.
You are welcome to ask me any questions here on your thread. If you prefer, you may contact me for a private discussion by sending an Email from the Contact page of my web site.
Paul
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For the benefit of anyone else reading this, please note that you cannot use either MMA or tHcy for diagnosis of B12 deficiency after receiving any form of B12 treatment, because it is then not possible to obtain a valid “before” result. My suggestion on this thread is specifically for testing effectiveness of treatment only. The following explanation is copied from the General Advice page on my web site:
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Test First - Before Commencing Treatment
I strongly advise anyone with suspected vitamin B12 deficiency to test thoroughly first then, if necessary, urgently commence treatment. If you take any treatment for vitamin B12 deficiency first then you risk masking other causes of symptoms, especially folate deficiency; you also lose the opportunity to use the best available tests.
If you either take B12 supplements, or have B12 injections, before proper diagnosis then you do not know whether or not you actually have a vitamin B12 deficiency. This is because the tests recommended by experts, methylmalonic acid and homocysteine, are used by comparing levels before and after treatment.
Once you have already started treatment, I cannot advise you to stop in order to find out. This is because, if you are deficient, you could suffer harm by ceasing treatment for the time it would take to return to your original B12 levels.
My own research shows that it can take a very long time, after ceasing treatment, for your serum B12 vitamin level to fall to a level suggesting a deficiency. This is very dangerous because neurological damage, caused by cellular deficiency, can occur even at high serum vitamin B12 levels and with normal haematology. This is why it is so important to get the evidence of disease before taking the supplement or having the injections.
Is it worth having the blood tests? You will need to decide for yourself, but consider these possible unacceptable scenarios:
1. No blood tests, no treatment, with B12 deficiency:
* Increasing disability
* Eventual irreversible damage or death likely
2. No blood tests, taking supplements or having injections, no B12 deficiency:
* Unnecessarily taking supplements, or having injections, for life
* Risk of masking folate deficiency
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If anyone wishes to discuss my advice about testing first, then I suggest starting a new thread, perhaps called "why test first?", rather than using this one.