B12 deficiency: a silent epidemic with serious consequences

May 6, 2011 in Food & Nutrition | 142 comments


elderly woman looking distressedWhat do all of these diseases have in common?

  • Alzheimer’s, dementia, cognitive decline and memory loss (collectively referred to as “aging”)
  • Multiple sclerosis (MS) and other neurological disorders
  • Mental illness (depression, anxiety, bipolar disorder, psychosis)
  • Cardiovascular disease
  • Learning or developmental disorders in kids
  • Autism spectrum disorder
  • Autoimmune disease and immune dysregulation
  • Cancer
  • Male and female infertility

Answer: they can all be caused by vitamin B12 deficiency.

B12 deficiency: an invisible epidemic

B12 deficiency isn’t a bizarre, mysterious disease. It’s written about in every medical textbook and its causes and effects are well-established in the scientific literature.

However, B12 deficiency is far more common than most health care practitioners and the general public realize. Data from the Tufts University Framingham Offspring Study suggest that 40 percent of people between the ages of 26 and 83 have plasma B12 levels in the low normal range – a range at which many experience neurological symptoms. 9 percent had outright deficiency, and 16 percent exhibited “near deficiency”. Most surprising to the researchers was the fact that low B12 levels were as common in younger people as they were in the elderly.

That said, B12 deficiency has been estimated to affect about 40% of people over 60 years of age. It’s entirely possible that at least some of the symptoms we attribute to “normal” aging – such as memory loss, cognitive decline, decreased mobility, etc. – are at least in part caused by B12 deficiency.

Why is B12 deficiency so under-diagnosed?

B12 deficiency is often missed for two reasons. First, it’s not routinely tested by most physicians. Second, the low end of the laboratory reference range is too low. This is why most studies underestimate true levels of deficiency. Many B12 deficient people have so-called “normal” levels of B12.

Yet it is well-established in the scientific literature that people with B12 levels between 200 pg/mL and 350 pg/mL – levels considered “normal” in the U.S. – have clear B12 deficiency symptoms. Experts who specialize in the diagnosis and treatment of B12 deficiency, like Sally Pacholok R.N. and Jeffery Stewart D.O., suggest treating all patients that are symptomatic and have B12 levels less than 450 pg/mL. They also recommend treating patients with normal B12, but elevated urinary methylmalonic acid (MMA), homocysteine and/or holotranscobalamin (other markers of B12 deficiency).

In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss. Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered “normal” in the U.S. explain the low rates of Alzheimer’s and dementia in that country.

What is vitamin B12 and why do you need it?

Vitamin B12 works together with folate in the synthesis of DNA and red blood cells. It’s also involved in the production of the myelin sheath around the nerves, and the conduction of nerve impulses. You can think of the brain and the nervous system as a big tangle of wires. Myelin is the insulation that protects those wires and helps them to conduct messages.

Severe B12 deficiency in conditions like pernicious anemia (an autoimmune condition where the body destroys intrinsic factor, a protein necessary for the absorption of B12) used to be fatal until scientists figured out death could be prevented by feeding patients raw liver (which contains high amounts of B12). But anemia is the final stage of B12 deficiency. Long before anemia sets in, B12 deficiency causes several other problems, including fatigue, lethargy, weakness, memory loss and neurological and psychiatric problems.

B12 deficiency occurs in four stages, beginning with declining blood levels of the vitamin (stage I), progressing to low cellular concentrations of the vitamin (stage II), an increased blood level of homocysteine and a decreased rate of DNA synthesis (stage III), and finally, pernicious anemia (stage IV).

Why is B12 deficiency so common?

The absorption of B12 is complex and involves several steps – each of which can go wrong. Causes of B12 malabsorption include:

  • intestinal dysbiosis
  • leaky gut and/or gut inflammation
  • atrophic gastrits or hypochlorhydria (low stomach acid)
  • pernicious anemia (autoimmune condition)
  • medications (especially PPIs and other acid-suppressing drugs)
  • alcohol
  • exposure to nitrous oxide (during surgery or recreational use)

This explains why B12 deficiency can occur even in people eating large amounts of B12-containing animal products. In fact, many of my patients that are B12 deficient are following a Paleo diet where they eat meat 2-3 times a day.

In general, the following groups are at greatest risk for B12 deficiency:

  • vegetarians and vegans
  • people aged 60 or over
  • people who regularly use PPIs or acid suppressing drugs
  • people on diabetes drugs like metformin
  • people with Crohn’s disease, ulcerative colitis, celiac or IBS
  • women with a history of infertility and miscarriage

Note to vegetarians and vegans: B12 is found ONLY in animal products

B12 is the only vitamin that contains a trace element (cobalt), which is why it’s called cobalamin. Cobalamin is produced in the gut of animals. It’s the only vitamin we can’t obtain from plants or sunlight. Plants don’t need B12 so they don’t store it.

A common myth amongst vegetarians and vegans is that it’s possible to get B12 from plant sources like seaweed, fermented soy, spirulina and brewers yeast. But plant foods said to contain B12 actually contain B12 analogs called cobamides that block intake of and increase the need for true B12.

This explains why studies consistently demonstrate that up to 50% of long-term vegetarians and 80% of vegans are deficient in B12.

The effects of B12 deficiency on kids are especially alarming. Studies have shown that kids raised until age 6 on a vegan diet are still B12 deficient even years after they start eating at least some animal products. In one study, the researchers found:

…a significant association between cobalamin [b12] status and performance on tests measuring fluid intelligence, spatial ability and short-term memory” with formerly vegan kids scoring lower than omnivorous kids in each case.

The deficit in fluid intelligence is particularly troubling, the researchers said, because:

…it involves reasoning, the capacity to solve complex problems, abstract thinking ability and the ability to learn. Any defect in this area may have far-reaching consequences for individual functioning.

I recognize that there are many reasons why people choose to eat the way they do, and I respect people’s right to make their own choices. I also know that, like all parents, vegetarians and vegans want the best for their children. This is why it’s absolutely crucial for those that abstain from animal products to understand that there are no plant sources of B12 and that all vegans and most vegetarians should supplement with B12. This is especially important for vegetarian or vegan children or pregnant women, whose need for B12 is even greater than adults.

Treatment of B12 deficiency

One of the greatest tragedies of the B12 epidemic is that diagnosis and treatment is relatively easy and cheap – especially when compared to treatment of the diseases B12 deficiency can cause. A B12 test can be performed by any laboratory, and should be covered by insurance. If you don’t have insurance, you can order it yourself from a lab like DirectLabs.com for $60.

As always, adequate treatment depends on the underlying mechanism causing the problem. People with pernicious anemia or inflammatory gut disorders like Crohn’s disease are likely to have impaired absorption for their entire lives, and will likely require B12 injections indefinitely. This may also be true for those with severe B12 deficiency causing neurological symptoms.

Some recent studies have suggested that high dose oral or nasal administration may be as effective as injections for those with B12 malabsorption problems. However, most B12 experts still recommend injections for people with pernicious anemia and advanced B12 deficiency involving neurological symptoms.

Cyanaocobalamin is the most frequently used form of B12 supplementation in the US. But recent evidence suggests that hydroxycobalamin (frequently used in Europe) is superior to cyanocobalamin, and methylcobalamin may be superior to both – especially for neurological disease.

Japanese studies indicate that methylcobalamin is even more effective in treating the neurological sequelae of B12 deficiency, and that it may be better absorbed because it bypasses several potential problems in the B12 absorption cycle. On top of that, methylcobalamin provides the body with methyl groups that play an role in various biological processes important to overall health.

If you suspect you have B12 deficiency, the first step is to get tested. You need an accurate baseline to work from. If you are B12 deficient, the next step is to identify the mechanism causing the deficiency. This is something you’ll probably need help with from a medical practitioner. Once the mechanism is identified, the appropriate form (injection, oral, sublingual or nasal) of supplementation, the dose and the length of treatment can be selected.

So, next time you or someone you know is “having a senior moment”, remember: it might not be “just aging”. It could be B12 deficiency.

{ 142 comments… read them below or add one }

Jesse May 6, 2011 at 8:39 am

You may be right, but assuming I don’t want to just take your word for it, where can I find evidence that anyone besides vegans and old people have to be concerned about adequate B12 intake?

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Ann May 6, 2011 at 3:45 pm

I’m your evidence. I eat meat everyday, have done since I was a kid, and at age 29 was diagnosed with extreme B-12 deficiency/pernicious anemia. This after going to a neurologist because they thought I had MS. I have permanent nerve damage as a result of not being diagnosed earlier, a simple test would have prevented this when I first complained to a doc at age 23. If you have any symptoms of deficiency take a test, it’s cheap and simple, as is correcting the issue.

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Jesse May 6, 2011 at 5:14 pm

Fair enough, Ann and Phyllis. It makes sense that there are people who are genetically inclined to have trouble absorbing B12 (and, if I recall correctly from my parasitology class, Scandinavian women who are infected with a certain Diphyllobothrium tapeworm should be concerned too). I may have misread the article, interpreting it as suggesting that B12 deficiency is a widespread problem that could strike anyone any time.

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Angela August 4, 2011 at 12:53 am

I am only 23 and suffer from severe b12 deficiency.

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Phyllis May 6, 2011 at 4:30 pm

I’m one of the pieces of evidence. I was diagnoses with pernicious anemia 8 months ago. By B12 level was 119. Other blood factors confirmed it was pernicious anemia. I’ve been taking monthly shots ever since and feel much better. I’m not a vegan or an older person.

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Dana May 6, 2011 at 5:26 pm

From a lab test. $60 now versus who knows how many thousands later because you didn’t catch it in time.

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Jesse May 6, 2011 at 5:31 pm

But with that logic, apart from knowledge of how likely the condition actually is, you could spend thousands on all sorts of tests for hundreds of rare conditions that just might cost you thousands later if you happen to have them.

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Chris Kresser May 6, 2011 at 5:37 pm

Jesse: what are you talking about? The test costs $16 (when I order it for patients, at least). I referenced the Framingham Offspring Study in the article, and a few others. If you want more references, go search Pubmed. You’ll see how common B12 deficiency is and how often it is misdiagnosed. Read the book “Could it Be B12″ that I referenced – plenty of references in there. You can do what you want, but I think most people exhibiting signs and symptoms consistent with B12 deficiency would prefer to spend about fifteen bucks to rule it out than go years undiagnosed and suffer irreversible neurological damage – as some people who’ve commented very sadly have.

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gregory barton May 6, 2011 at 9:59 pm

If the condition is not rare, as you claim, and the effects are potentially severe, simple common sense would dictate spending the money irrespective of the symptoms. How many times would one need to do the test? Presumably once would be sufficient.

I am amazed how many simple tests are omitted in my annual blood checkup. Thyroid tests, for one, are not on the list. Yet the test is inexpensive and simple to do.

I would appreciate a list of basic blood tests to consider as part of an occasional checkup.

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Martyn Hooper June 20, 2011 at 11:41 pm

The problem here lies with the efficacy and accuracy of the tests currently being used. The serum B12 test doesn’t differentiate between ‘Active B12′ and ‘Inactive B12′ – Holotranscobalamin and Holohaptocorrin. A person can have as much as 90% of their total B12 as the Inactive type – that plays no part in the biological processes involved and just, as one physician put it, “hangs around the liver doing nothing”.
Similarly the Intrinsic Factor Antibody Test is only around 30 – 40% accurate. I tested negative twice before testing positive. Not many patients get tested three times and if they test negative on the first test they are routinely diagnosed with something else. 14% of the Pernicious Anaemia Society’s members were wrongly diagnosed with having Depression and 30% remained undiagnosed or wrongly diagnosed for over ten years.
There are serious problems with the tests being used and this is leading to people, lots of people, being wrongly diagnosed.

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Chris Kresser June 21, 2011 at 9:36 am

Martyn: I couldn’t agree more!

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Phyllis May 6, 2011 at 7:17 pm

This is not really a rare condition. Unfortunately, it took years for me to be diagnosis, seeing multiple doctors and really pushed to get any of them to take me serious. The doctor that finally did some tests was shocked and apologetic when we got the results of the tests. None of the doctors thought I was at risk because I eat so well and live a very healthy life style. I’m not the only one that has encountered these obstacles.

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gregory barton May 6, 2011 at 10:03 pm

Further evidence for the proposition that one must take ultimate responsibility for one’s health and not delegate the responsibility to doctors.

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TMAC July 19, 2011 at 12:10 pm

My father just got diagnosed with B12 deficiency and will need monthly injections for the rest of his life. He is in his mid-60s. He has an active lifestyle, he’s a butcher, and we eat meat EVERY day (we might skip meat twice a year max). Nevertheless, his level was 88 which is VERY low. Trying to find out next doctor’s visit if it’s linked to pernicious anemia. I’m in my mid-30s, I grew up eating meat every day (never fish, usually chicken, pork or beef). In university, for convenience and lack of cooking equipment, I switched to mainly chicken (almost daily) and within 6 months I was diagnosed with low iron levels. I’m frequently tired, have a lack of energy and other symptoms but the doctors usually try to talk me out of or refuse to get full blood work done and just tell me to eat more red meat or eat when I get unusually and quickly tired for no apparent reason. These issues DON’T only affect the old or vegetarians, they are very real and have had a very real impact on our lives both as individuals and as a family.

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Chris Kresser July 19, 2011 at 7:24 pm

That’s absolutely right. I should point out that most of my patients eat meat (Paleo type of diet), but several have B12 deficiency caused by absorption problems.

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Elisabeth May 6, 2011 at 10:05 am

As I see it, the greatest problem with B12-deficiency is the fact that the condition so easyly gets irreversible. If it isn´t discovered in time, there will be a lifelong problem. It´s horrible to see a confused person, full of diffuce anxiety, wandering about in it´s depressed condition…and nothing helps when it reaches this stage

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Chris Kresser May 6, 2011 at 11:45 am

I agree, Elisabeth. This is particularly tragic in light of the fact that B12 deficiency can be so easily and cheaply diagnosed.

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sandi July 11, 2011 at 4:56 pm

so, is this and your comment saying, that if we find we have a deficiency, it is impossible to rectify by taking Vit B12 supplements? this is irreversible?

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Chris Kresser July 11, 2011 at 5:40 pm

Low B12 levels are correctable through supplementation – either sublingual or via injection. The damage caused by B12 may or may not be reversible, depending on where that damage has occurred.

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Evan May 6, 2011 at 11:37 am

Great article. For those with intestinal disease/absorption problems, do you think daily doses of fermented cod liver oil ala Weston Price would be sufficient?

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Chris Kresser May 6, 2011 at 11:44 am

FCLO does not contain significant amounts of B12. I recommend approximately 1 mg/d of sublingual methylcobalamin for those with intestinal absorption issues.

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Isaac Rivera May 6, 2011 at 2:20 pm

The highest sublingual tablet I can find has 3000 micrograms, I would need 333 tabs to arrive at the 1 gram daily dose!

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Chris Kresser May 6, 2011 at 3:24 pm

Ack! Serious mistake on my part. The dose is 1 mg, NOT 1 g. I’ll fix immediately.

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Phyllis May 6, 2011 at 7:20 pm

Unfortunately, it won’t work for people who can’t absorbed it through the digestive track.

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Isaac Rivera May 7, 2011 at 2:50 am

“Sublingual” doses are primarily absorbed through the mucous membranes in your mouth.

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Sandra Brigham May 7, 2011 at 6:06 am

Yes, that’s why if the cause of deficiency can’t be found, a sublingual is recommended because it doesn’t go through the digestive tract, it goes directly into the blood stream, as I understand it. So lack of absorption or storage and/or release don’t come into play.

Thanks for the book recommendation Dr. Kresser. I just requested it from inter-library loan. Maybe it’ll answer some questions for me.

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Bridgett May 6, 2011 at 12:34 pm

Thanks for getting this information out, Chris. Not only am I a vegetarian, but I am also genetically “challenged” at assimilating B-vitamins (I took a genetic test. That’s how I found out). Lovely, huh? So I am acutely aware of this issue, and I attempt to “spread the word” as best I can. I will be pointing people to your post as a way of doing just that.

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Kim C. May 6, 2011 at 1:08 pm

A bit off topic, but I was wondering if you knew, Chris, how freezing liver might affect the vitamin content. I eat raw liver regularly (1/4 lb per week), but I can only access frozen, grass-fed beef liver from my local farmer. Thanks, Chris. I love your blog and podcast, by the way … very insightful.

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Chris Kresser May 6, 2011 at 4:31 pm

Kim,

According to Nutrition Data (http://nutritiondata.self.com/topics/processing#cooking), there is a 0% loss of B12 from freezing. That’s why I often recommend cutting up liver into tiny chunks, freezing it for two weeks, and taking the “liver capsules” that way.

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Sandra Brigham May 7, 2011 at 5:59 am

I do this for the dog and is good for up to one year; at 114 lbs, he gets 2 oz every other day (chicken or beef). I still give him his B Complex Vit though since he can’t tell me how he feels.

I make liver pate for myself and freeze them in 2 oz servings.

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Kim May 6, 2011 at 1:22 pm

I recently read a story from the CDC that a young vegan man was treated for a psychotic episode involving schizophrenia. It was discovered that he was severely b-12 deficient. After being treated with b-12 and a short-term course of anti-psychotics, he recovererd. Makes me wonder 2 things: did he finally get the message that a vegan diet was not nutritionally sound? And secondly, how many mentally ill people such as schizophrenics and other’s being treated with powerful and dangerous drugs are really just nutritionally deficient or celiac?

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Irene Gutteridge May 6, 2011 at 1:53 pm

Hi Chris,
I am curious, I have a supplement called Florivit (canadian based company called Salus), and it says it has B12 in it. Do you have any experience with the effectiveness of this vitamin supplement. It is commonly prescribed for Vegans/Vegetarians…..Arnie Lade in Victoria originally suggested I use it from time to time.
Irene.

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Chris Kresser May 6, 2011 at 3:27 pm

Irene, I don’t have any experience with it. But I recommend methylcobalamin in general.

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Sandra Brigham May 6, 2011 at 2:05 pm

At the young age of 43 (3 yrs ago), I was diagnosed as B12 deficient (120). I was lethargic, having extreme memory problems, falling asleep at my desk at the firm, painful thighs, numbness and tingling in extremities and the scariest of all – spatial disorientation (tunnel vision – needed to hold the railing in stairs ’cause if I looked up to see where I was going my feet tripped but if I watched my feet I didn’t know where I was going; I also had to let my hand drag along walls as I walked down a hall to guide me since I had to watch my feet, like to make sure I picked them up), tingling scalp (couldn’t tie my hair up w/scrungies ’cause I’d get migraines if I did); driving on the wrong side of the road cursing the oncoming drivers for driving the wrong way!, standing at the ATM while it’s beeping at me not knowing what I’m supposed to do, trying to consistently open the front door with my remote car control, forgetting my age, word recall difficulties (I’d say “window in the ceiling” for skylight) and knew it was happening, after it was called to my attention, but was ok w/it since I was still communicating but I’d get weird looks!!, doom and gloom and the list goes on. Initially they referred me to Psyche but I refused and demanded blood testing for B12 and IF.

We ruled out not having IF & anemia and parasitic infections, not a vegan, never had abd surgery or used PPI. All I had was a family history of colitis (mother) and Crohn’s (son). So we never determined the cause of my deficiency but a couple of shots and then sublinguals abated the neuro stuff and most of the fatigue (not falling asleep every few hours). I continued to complain of extreme fatigue and unrefreshing sleep so Infectious Disease did a PE, negative, and referred me to Psyche. Dr. Deans must make a killing off these types of referrals!

It wasn’t until I went Paleo/Archevore Jan 2011 that every last bit of fatigue just went away (after the carb-flu). I’ve regained, by my home-spun estimates, 6+ lbs of muscle and taken inches off all body parts, slow but steady. The only issues that remain are some word recall problems and left foot tingling. Would B12 affect cortisol or adrenals? I may have some of that going on too.

But it was SAD and chronic cardio (42+miles on trails/wk for 8 yrs) that were killing me!

This post was timely as I had stopped taking my B12 sublingual and was going to have MD test levels in the Fall to see if my dramatic protein increase (from 2-4 oz/day to 12+ oz/day) made a difference. But if a lot of your patients that are Paleo are deficinet, maybe I should resume my sublingual (1000mg).

Great post Dr. Kresser.

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Peggy The Primal Parent May 6, 2011 at 9:13 pm

Thanks for leaving your experience, Sandra. I was never diagnosed with b12 deficiency before I started the paleo diet because I never had a doctor that had a clue but I had many of the symptoms you described which is what prompted me to start the paleo diet to begin with. The symptoms cleared up quite quickly when I changed my eating habits but I have always noticed that they return to some degree when my digestion is impaired (when I deviate from the diet).

Thanks Dr. Kresser for the thorough and informative post! I think this information will help many people who are suffering from undiagnosed conditions.

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Sandra Brigham May 7, 2011 at 5:55 am

Fixing mine too! …1000mcg….not 1000mg!

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Monte Diaz May 6, 2011 at 2:16 pm

What is a good dosage range for maintenence Chris, assuming a person doesn’t have absorption issues. Do you think sublingual or liquid forms are any better than pill form? Thank You.

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Chris Kresser May 6, 2011 at 3:29 pm

I don’t see a need for ongoing supplementation for those without deficiency or absorption problems, assuming adequate dietary intake.

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Elisabeth May 6, 2011 at 5:19 pm

Oh, yes…those who had som kind of a stroke, had any kind of brainsurgery etc they will always benefit from 1-5 mg a day of B12…as protection. I have known this for a long time (years), but never saw the real proof in knewer studies, just can´t remember where I read that, yesterday…

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Sandra Brigham May 7, 2011 at 5:17 am

The sticky thing is, as my doctor explained it to me, we don’t know whether there is an absorption problem (barring IF issue) or not. And, according to her, there is no way to tell if it is a storage and/or retrieval problem (liver). My extensive review of the literature, lay person here, revealed nothing she missed.

But if one goes Paleo and stops supplementing then takes a serum test, wouldn’t that tell if Paleo made the difference if levels are good. Of course, then begs the questions: how long would you have to be on Peleo for serum to change, how long do you have to be off supplements before taking the test becomes the question and are serum tests valid, *enough*?

So my MD recommends B12 supplementation for life. Easy enough I guess, but since liver and pancreatic cancer runs heavily in my paternal family’s history, I’d like to know WHY I was/am deficient in B12. It may be epigenetics, MD postulates, as I come from the most northern tip in Maine where potato agriculure has been our (Canadian/Maliseet Indian) way of life since colonization, and thus there is nothing to find on exam…

So now, I worry about my liver all the time.

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michael goroncy May 6, 2011 at 5:30 pm

Hey Chris
Are you confusing nitric oxide with nitrous oxide?

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Chris Kresser May 6, 2011 at 5:33 pm

Good catch, Michael. Not confusing them, just mis-typed it.

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Adam May 6, 2011 at 5:37 pm

Hi Chris,
I’ve relatively recently found your website and have been enjoying your posts and podcasts. In this article you say that Autism Spectrum Disorder can be caused by B12 deficiency. Do you have any proof of this, any studies you can point me towards? Are you implying that it can be a deficiency in the mother during pregnancy or some deficiency in the infant that can bring it on?
As someone diagnosed with Aspergers I must say I’m interested but also skeptical. Autism has a clear genetic component and I while it is plausible that an environmental factor can trigger a genetic predisposition to it I doubt there is any firm evidence out there that proves that B12 can be a cause (or anything else at this stage).
Thanks for all your great work, but I need more convincing on this one.
Cheers, Adam.

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Chris Kresser May 6, 2011 at 5:50 pm

Adam,

There’s an entire chapter on the possible B12-Autism connection in the book I referenced in the post (Could It Be B12). It is well-established that maternal B12 deficiency causes developmental delay, hypotonia, failure to thrive, reduced IQ and mental retardation in the mother’s offspring. Young kids with B12 deficiency exhibit delays in speech, language and social development, as well as problems with motor control. The signs and symptoms of B12 deficiency are very similar to those of ASD. There are anecdotal reports from ASD specialists that B12 injections improve symptoms in a significant percentage of ASD patients. One pilot study found that the rate of elevated urinary MMA in autistic kids was 20%. Granted, this is not proof of causality nor would I or the authors of the book claim that B12 deficiency is the sole contributing factor to ASD (that’s ridiculous, of course). But there may very well be a connection, and it’s worth pursuing further IMO.

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Adam May 6, 2011 at 6:06 pm

Thanks Chris. I’ll look into it.

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Anonymous May 6, 2011 at 5:41 pm

Chris – as always…you rock!

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Simon May 6, 2011 at 7:02 pm

Chris, brilliant stuff as usual!
I see so much conflicting B12 data all over the web and I have concerns about my own B12 intake! For the last 2 years I was a Raw vegan only and started to get really weak & tired, then moved to about 75% raw, now eating cooked yams/sweet potatoes a little white rice and daily I eat either sardines or mackeral.
I was told I need 10mcg of B12 a day, without consuming red meat or liver etc am I ok on a fish source only for B12?
Your thoughts kindly appreciated!
Keep up the great work!
Simon

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Chris Kresser May 6, 2011 at 7:27 pm

Simon: 10 mcg is an inconsequential dose of B12. 500 – 1000 mcg in methycobalamin form each day would be a more suitable dose.

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Elisabeth May 6, 2011 at 9:40 pm

B12 is stored in the liver, I always thought about it as something from old, real old times, when you coluldn´t be sure of good hunting everytime. So, when starving times one wouldn´t be without B12.

B12 and folic acid are both known to have good effects in psychiatric problems, but in mega-doses it´s called ex juvantibus and was widely used before we had so many diffrent drugs, even thyroxin i mega-dosis was used. That I find very interesting.

And Simon…you really need to store up a lot of B12 in your liver.

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Simon May 6, 2011 at 10:15 pm

Wow! Chis, as I said so much info out there you don’t know where to turn! When I followed the Raw vegan diet, I was told at the time just have some raw honey which has had a few bees or other insects fallen into it, you won’t taste them and you’ll get all the vitB12 you need! Damn was I so naive!
Thank you.
Simon

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Heidi May 6, 2011 at 9:36 pm

So glad I found your website, Chris.

My question is, would it be Ok to just supplement for awhile and note if any of the symptoms went away? Could you comment on Elisabeth’s comment about people who’ve had a stroke or brain surgery.

Thank you for all of this great information!

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Chris Kresser May 7, 2011 at 8:57 am

Yes, supplementation with B12 is safe since toxicity is extremely rare, especially if you avoid cyanocobalamin. Unfortunately, some damage from B12 deficiency is irreversible.

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Bridgett May 7, 2011 at 10:17 am

Why do you say “if you avoid cyanocobalamin?”
I ask because that is (currently) my main form of B12 supplementation.

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Chris Kresser May 7, 2011 at 11:06 am

Because in the rare cases that B12 supplementation causes a negative reaction, it happens with cyanocobalamin, and because it is the least well absorbed form as I pointed out in the article.

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Sandra Brigham May 7, 2011 at 12:16 pm

I didn’t understand your sentence – some word is missing I think. But since I have been using for cyanocobalamin for 3 yrs and have some residual foot tingling I guess I should seek out the methyl B12 supplement version.

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Chris Kresser May 7, 2011 at 6:56 pm

I just updated the sentence.

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Sandra Brigham June 9, 2011 at 7:36 am

Well, on 5/23rd I started using methyl B12 and ditched the cyano B12. After 17 days of using methyl, the neuropathy in my left leg and foot are all but gone! I now only feel a slight tingling sometimes but the numbness/pain are gone. I figure the slight tingling will be gone in a few weeks.

Thank you so much for this wonderful post. I just can’t believe my MD never suggested mention methyl to begin with.

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Bridgett May 7, 2011 at 7:45 pm

How can the form which is least well-absorbed, also be the only culprit in toxicity?

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Monte Diaz May 8, 2011 at 8:46 am

It actually makes sense Bridgett. Cyanocobalamin is an unnatural synthetic version of B-12. Our bodies may not be fully adapted. Therefore, in addition to not being absorbed well, it also may cause negative reactions in what little is absorbed.

I liken this to the situation with trans-fats: Where they impersonate normal fats and when the body tries to use them (put them to work) they act dysfunctional and reek havoc.

Of course, I’m just a layperson and may be wrong on all of the above.

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EL66K May 6, 2011 at 9:52 pm

Chris, have you heard about the Fredd protocol? It was made by a guy suffering from severe b12 deficiency, and it apparently has helped a lot of people. He talks about specific brands of sublingual methyl-b12 being vastly superior to others in terms of absorption (specially if you use them the right way), and about the need for other nutrients to be obtained in tandem for the therapy to be most effective. I personally tried one of the brands he recommended (jarrow’s) and my b12 got above 2000 pg/mL in a few weeks. The doctor got scared.

Here are the links: http://forums.wrongdiagnosis.com/showthread.php?t=62327 http://forums.wrongdiagnosis.com/showthread.php?t=9948

The second one was actually started by Sally Pacholok.

Also, you didn’t mention one of the conditions in which b12 has been shown to be very helpful: peripheral neuropathy. There are many articles in pubmed about it helping people with that condition, mainly diabetics.

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Chris Kresser May 7, 2011 at 8:58 am

A B12 level of 2000 is safe and nothing to be concerned about. Most experts suggest 500 – 2000 pg/mL should be the target range.

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Chris Kresser May 7, 2011 at 9:00 am

SAM-e, L-carnitine and Alpha-lipoic acid may be helpful. But I’m not convinced they’re necessary. It’s relatively easy to determine if treatment is working: you just re-test.

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EL66K May 9, 2011 at 3:12 pm

Sure, Chris. I said said the doctor was scared, not me! Another probably important thing to take from the protocol in the links I showed you (more than the use of ALA or SAMe, etc.) is that the natural or coenzymated versions of the b-vitamins (methylb12 in opposition to cyano-b12, folate in opposition to folic acid, P-5-P in opposition to pyridoxine, etc.) are not only safer, but also more usable by the body (http://www.thorne.com/altmedrev/.fulltext/6/1/87.pdf). Though, you probably know that already.

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Alex May 6, 2011 at 11:33 pm

Hey Chris,

So it seems like even when eating a paleo diet there are many nutrients one can still be deficient in, such as Vitamin B12, Vitamins A/D/E, selenium, magnesium, iodine, etc. That being said, why not recommend a well-rounded multivitamin for most people as insurance? I know you’ve talked about the dangers of high dose multivitamins and antioxidants, but it seems like a basic one or two a day multi would have far more benefits than potential risks. Your thoughts?

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Sandra Brigham May 7, 2011 at 5:49 am

Yes, this plagues me every day. Should I take that B12 sublingual and the multi concurrently that my MD emphasized had to be taken with a B12 for the B12 to be effective now that I’m Paleo/Archevore. I ditched the BCP as a possible cause, and to go Paleo, even though GYN swears BCP doesn’t cause B12 deficiency. Gave up the Vit C but kept the magnesium though. It gets very confusing – TMI!

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Chris Kresser May 7, 2011 at 8:55 am

I think Nutrient 950 with vitamin K from Pure Encapsulations is a good choice. It’s one of the few I’ve found that has the ratios and amounts of each nutrient that I’d recommend.

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gregory barton May 7, 2011 at 9:32 pm

Do you recommend 4 to 6 capsules per day, as the product information requires?

Do you have any one per day alternative?

Would you recommend the variety ‘without iron’?

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Chris Kresser May 8, 2011 at 7:26 am

Because iron is a pro-oxidant and in excess quantities can be dangerous. Most people get enough if they’re eating meat. Dosage of 4-6 capsules is fine.

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DJ May 7, 2011 at 2:08 am

Hi Chris,

Thanks for writing about this important topic. I have read the book you referenced “Could It Be B12?” and if I remember correctly, the authors pretty much concluded that serum B12 was not accurate and recommended urinary MMA. I remember being alarmed that my B12 level was so high (887 pg/ml), but then thought maybe it was because I had taken a multivitamin containing B12 the day before the test.

Two questions:
(1) Do you agree that serum b12 is not really valid becauses it does not indicate whether it is actually being absorbed and utilized in the body?
(2) Do you agree that everyone should stop taking supplements for 2-3 days before having bloodwork done, so they don’t affect serum levels like b12, iron, etc?

Love this blog!

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Chris Kresser May 7, 2011 at 9:04 am

No, that wasn’t their conclusion. In fact, they said that B12 is accurate but the reference range is too low. They suggest that if the cutoff of 450 or 500 pg/mL were used, urinary MMA, homocysteine and HoloTC may not be necessary. However, they also mention that they would treat if urinary MMA and/or homocysteine are abnormal but B12 is normal. In my practice I’ve been running urinary MMA, homocysteine (a useful marker for other reasons) and serum B12.

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Anthony DiSante May 7, 2011 at 6:28 am

Hi Chris,

I’ve heard you mention the frozen-liver-pill idea a few times now, both on podcasts and on your blog. Can you talk about the quantities that you recommend, i.e. how many grams or ounces on a daily/weekly basis?

Thanks!

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Chris Kresser May 7, 2011 at 8:51 am

I recommend people eat 3 oz. of liver 2 times a week.

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gregory barton May 7, 2011 at 7:52 pm

If one isn’t partial to straight liver, pate, fois gras?

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Tony May 7, 2011 at 6:53 am

Dr. Kresser,

What dosages should vegans and vegetarians be taking as supplements? I currently market a twice daily NSF certified multivitamin containing 22.5 mcg of Vitamin B12 (Cyanocobalamin) and a 0 sugar, 0 carb low calorie energy drink containing 294 mcg of Vitamin B12 (Cyanocobalamin). Are these products suitable to help round out a vegetarian diet?

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Chris Kresser May 7, 2011 at 9:01 am

500 – 1,000 mcg per day of methylcobalamin is a good dose.

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Stephanie Alexander May 7, 2011 at 10:41 am

Thanks for this great post. I had a sub-lingual B12 supplement and read that it was vegetarian — likely not going to help me at all.

I have been searching for a B12 with Folate since they seem to both be required and not abundant in the diet. However, all I find are supplements with Folic Acid.

Any suggestions?

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Chris Kresser May 7, 2011 at 11:05 am

Designs for Health has Super Liquid Folate and there are many brands of liquid B12 with methylcobalamin. I haven’t found one that combines the two in sufficient doses yet.

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Peter May 7, 2011 at 6:40 pm

Theoretically, methylcobalamin may participate in the methylation of inorganic mercury released from dental amalgams, thus increasing its absorption in the mucosal & digestive tracts. This effect may vary according to oral pH and bacterial type/count.

I have dental amalgams and get frontal headaches after a couple of weeks on 2,000mcg sublingual methylcobalamin daily. Coincidence?

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James May 7, 2011 at 7:23 pm

Hey there Chris!

Sorry to make this comment here but I figured it would never get seen if I made it in the thyroid-gut article.

You say to restore gut integrity you put your patients on the GAPS diet. This is not necessarily a low carb diet, but from the food choices and how it is set up it generally turns into a low carb diet for most (probably 100 grams or lower). Would going on the GAPS diet worsen issues in someone with already high cortisol throughout the day? Would you advise fixing the cortisol first, or do you need to fix the gut before you can hope to fix the cortsiol?

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Chris Kresser May 7, 2011 at 7:41 pm

It’s a bit of chicken and egg, so they need to happen together, but I generally think fixing the gut is the highest priority.

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Tyler May 7, 2011 at 7:34 pm

Great post! My wife has B12 deficiency despite the fact that we’ve been eating paleo for one year. We’re not sure what the cause is, but her doctor just said to take a B12 supplement. I’m worried it could be a symptom of a more serious issue.

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Chris Kresser May 7, 2011 at 7:40 pm

Always good to do that detective work. If she has pernicious anemia, a B12 supplement isn’t going to do a thing (she’d need injections). That’s also why re-testing is so important.

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Tyler May 13, 2011 at 1:01 pm

What would be useful detective work for people with confirmed B12 deficiency? A Schilling test? A blood test for gluten antibodies?

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James May 8, 2011 at 6:16 am

Thanks. Just posting on various sites I have numerous people telling me that low carb paleo eating (or GAPS diet eating) causes stomach problems/digestive, food allergies, messes with cortisol, etc. Is there any truth to that or for the most part has it helped those you use it on?

My problem now is more so sluggish elimination/difficulty going, some food issues (bloat and water retention), etc.

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simona May 8, 2011 at 6:36 am

Unfortunately, methyl and hydroxy cobalamin are hard to find as they are more expensive and manufacturers don’t put them in multis. How can one find out if they have methylation problems?

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Stephanie Alexander May 8, 2011 at 12:01 pm

I am confused — if there are no vegetarian sources of B12 and methylcobalamin is a naturally occurring source of vitamin B12, how can it be Vegan? I think I have missed something…?

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Dr K May 8, 2011 at 8:57 pm

The methyl trasnfer issue is a large one and you have touched on it here a bit. I think your may have also failed to mention to adequately close the B12 gap it requires high levels of vitamin C as a cofactor in many of the reactions. High enough that oral Vitamin C often does not cut it. Somehow I think you know it but once you go back and look at the pathways biochemically it becomes a real rate limiting cofactor in the real folate issue.

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Jen May 9, 2011 at 6:29 am

Hi, I have an immunologist who uses Metanx for B12, B6, and folate. She has been using it for years with good results. It is supposed to provide the vitamins in their more active forms. Not sure about it’s effectiveness, as I didn’t have my B-12 levels tested, but my homocysteine levels have always been fine. Hope this can help someone and that it’s a good product.

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Sharon May 9, 2011 at 11:46 am

Chris, would you suppose a serum B12 level of ~300 *could* cause deficiency symptoms?

Your blog = great stuff, per usual!

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Chris Kresser May 9, 2011 at 1:51 pm

Absolutely. The studies are clear on this.

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Inge May 10, 2011 at 4:22 am

Great post!
My Mom, now 78, was low (very low) on B12 two years ago. It was diagnosed via lab test, but the doctor did not thought B12 would be of much importance. He was only interested in the cholesterol levels (LDL o. k., HDL triple of normal) and put her on statins, like many years before. For luck there is the internet and I just looked up all lab results and became aware of the low B12 level. My mom took same information to the doc and he informed himself and she got treated by a row of vitamin shots. The difference they made is almost not to believe. My mom was depressive and sick in many ways and the change started only after a few shots. No she is active, interested in live, started sports and having fun again. By the way, she dumped the statins.

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James May 10, 2011 at 8:17 am

When do you trial and introduction of safe starches for someone on the GAPS diet. Would you just have them on it for a few weeks then introduce it? Also, would it be a good idea to start out with the less dense starches (calories wise) such as yucca, rutabagas, parsnips, etc, for a while before trying the denser starches like yams or white rice?

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James May 10, 2011 at 8:39 am

And wouldnt it be harder to set up the proper flora levels in the gut including starch in the diet ( I thought that is why she cuts it out)? Or do you only include starch after a certain amount of time has passed and you believe that the flora levels have normalised and some gut healing has taken place? Also, are rutabagas GAPS legal, I know turnips are.

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mary ann May 10, 2011 at 9:46 am

B12 shots are among the most popular biomedical treatment for autism. Another thing to consider is gene polymorphisms such as MTHFR that affect B vitamin metabolism. People with MTHFR have to supplement with activated forms of B6, B12, and folate (not folic acid). Most people with the diseases you listed at the top have MTHFR.

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mary ann May 10, 2011 at 9:51 am

I found some studies that link B deficiencies to autism and posted them here…

http://findingtherootcause.blogspot.com/2011/05/mthfr-and-autism.html

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Jan May 11, 2011 at 1:48 pm

I, unfortuately, am a prime example of a person who has been a victim of B12 misdiagnosis. I was diagnosed with MS and the Dr. had a level in front of him for me of 261. The next year, the level shows at 232, for some reason, there is not a reading for the next year, but Dec of 2010, which is the fourth one, my level had dropped to 151, and a new Dr. replaced the orig Dr. at the clinic I attend. She immed. caught this. By this time, I have lost all feeling in my feet and hands, all of my reflexes are gone, knees, elbows etc, my cognitive processes, awful and intimate life is shot. I lost my career as a finan. planner, my life may very well be forever changed as this. I gave myself B12 injects every day for one week, once a week now for a mo, and will go to monthly I assume for life. My symptoms, thus far, have gotten worse. I am in immense pain. I understand it may be 3-6 mos before I will know if this will turn around my symptoms, but I do not have a good feeling. I have severe gastro issues, have been hospitalized twice during this dance passing blood. It is like no one talked to anyone else. They are doing a full work up with a colonoscopy and endocopy in two weeks, but damn it all, I begged to find out why I was stricken with ischemic colitis suddenly at 54. No one cared. I never knew about the B12. Even though the Dr who left was testing me for it, when I got copies of my blood, it was on a seperate form and not provided, but with our system showing normal ranges of 200-900, it would not have raised a flag. That needs to be changed. I am just lost now. I am 59, lost all my securities licenses, am awaiting the results of a lumbar punch to rule out MS totally, and see what my job’s disability insurance will do. I am set to lose everything.

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Jan May 11, 2011 at 8:46 pm

This is all very confusing and scary to me. I have no idea what kind of Dr. to see. I can remember my tongue losing all the coating on it and turning bright red back to 2000, and no one knew why, as well as the corners of my mouth cracking and being sore. I know now that this could very well have been B12. Now, with my B12 level at 151, and after giving myself shots of cyanocobalamin, 1 ml daily for a week, then once weekly for a mo, it was at 457 after two weekly shots. What does that say to you? I think that it should have been much higher? What should I be doing, what kind of dr? Do I go to a hematologist, still to my MS neurologist, my Primary care, who? I am just now finding you, and this site. I have lost all feeling in my feet and most of it in my hands. I have these large lumps that have arisen on the tops of my feet, that had turned dark brown and the skin was thickened six years ago. These lumps just came now. Why? I lost my legs today, and fell. I am confused, went through a horrible confession from my spouse of almost forty years three yrs ago, and I am angry. If this could have been prevented by the simple intervention of treating my B12 deficiency, and I would have my feet and life, my God. I see the three kinds of B12 and it seems I am taking the wrong kind? Am I spinning my wheels? Am I just going to keep going down, end up dead? What stage am I and how is that determined? Is 151 a really low number? I really do not like liver, but should I be eating that? Where do I turn? I need help desperately. Is my life over at 59.

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Elisabeth May 11, 2011 at 11:20 pm

Jan, I think it´s important that you also take folic acid/folate and B6 with your B12, for your MS, you must take vitamine D3, mega-doses.

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Jan May 12, 2011 at 11:24 am

Thank you for replying Elisabeth. It seems that the lumbar ruled out MS. Not 100% because there was protein in the punch but a huge amount. I have a brain tumor in my brain stem, one that the prev. MS doctor told me was gone. On the report it says that it is there, in the midbrain, located near the aquaduct but not clogging it. Well, it may be changing. See when they ordered the punch, I asked them, are you sure since I have this thing on my brain and you are not supposed to do that to someone with that. The brain surgeon said, no, it is ok. Only when there is one that is causing pressure or blocking the flow. Well, he as also saying the place was not a glioma (tumor) but a hamartoma (malformation from birth) and not a problem. Well, he backed off of that when he saw the large amt of protein. He said it is a glioma, that would account for the protein. And, may be it is affecting the flow. My God. This is like being on a horror show of “we said this, but we really meant this” and all your enemies are in the audience laughing their asses off. It does not stop. When I had ischemic colitis in 06, I begged to find out why. That is not a normal colitis. Part of your bowel dies for a reason: clotting disorder, obstruction to the bowel, drug use, etc. I do not use drugs, so we needed to find out. Everyone was like, oh who knows. Ischemic Colitis can be a so so thing or serious. I was in the hospital for ten days, passing nothing but blood for at least two, and 9 inches of my bowel was not rejuvenating. It finally did or I would have had to have it removed. I could have died. I had a serious case of it. This is all tied together. I have been on Prevacid for years, is this why I have B12 def? I have been giving myself injections of betaseron for four years. What has that done? I am just sick over all of this.

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gregory barton May 12, 2011 at 12:47 am

No. Your life is not over at 59. But you need to find a doctor, or some caregiver, who can explain what’s going on clearly and whom you can trust. Keep shopping around till you find one.

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Chris Kresser May 12, 2011 at 7:12 am

Jan: at 151 you really need B12 injections. Preferably with methylcobalamin if you can convince your doctor to use that (tell him/her studies have shown it is the best absorbed form with the lowest toxicity). Yes, 151 is low and you need to take action to bring the level back up. Another option is sublingual methylcobalamin – but I would highly recommend you do this under a health care practitoner’s care. You need to find out WHY your B12 levels are so low. If you have an absorption problem like pernicious anemia, which is not uncommon in the presence of other autoimmune diseases like MS, you will have to be on injections or at the very least high dose sublingual B12 indefinitely. I’d say go visit whichever of the docs you listed that you have the best relationship.

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Jan May 12, 2011 at 11:11 am

Chris, I got back the results of the lumbar punch today from my new neurologist and I do not show that I have MS, as the Dr. she replaced had diagnosed said. To complicate this even more, I was shown on MRI in 2006 to have a lesion on my midbrain that had grown from a previous MRI done in 2004. This is what started the ball rolling. When I had breast cancer in 04 I owned a small investment company. I had to close it but I had felt that I was not on top of my game for some time. To reenter the corp work environment at 51 was daunting to say the least so I had a full neurological work up. There was a problem in the brain stem at that time but they did not report it to me. After working for two years and struggling both mentally and emotionally, a Dr, ordered a MRI and the place had grown a bit and that was when I found out it was even there. It sent me to a brain surgeon at the hosp. where I ended up with this MS clinic that I am still seeing. He felt it had not grown but rather the MRI was slicing thinner. And that it was just showing larger. He saw spots on my brain, sent me to the MS doc. He diagnosed MS with the 261 B12 level in front of him and told me that the brain stem issue was totally gone every year since. Had disappeared altogether.

Well, it has not. The neurosurgeon thought it was a hamartoma, something that is a malformation from birth, and not a glioma. However, my spinal fluid was full of protein so now he says it is due to this brain stem “glioma”. So, seems like I have a tumor on my brain stem,, worst place ever, and a B12 deficiency. I am seeing my PCP today at 3. What am I? When this started, my tongue would get thick, I could not speak correctly, like I was on drugs, could not spell, word find, emotionally I was broken totally. Could not train for new things and retain them. Yesterday I collapsed totally, and I can hardly walk. I am in intense pain in my legs at night and my entire body hurts. Am I doomed to this thr rest of my life because I was not treated in time? What stage would you think I am in? My red cells seem ok, there has been a problem or two along the way. After my breast cancer surgery, they were way out of whack and taking iron for 6 mos corrected that. They said I lost too much blood. I am giving myself injections. But with the other B12, the least desired one. I am going to take your recommendations to the dr. today. I also feel that there is some liability on behalf of the first Dr. who ignored the B12, and there are other issues with him. There is a reason he is no longer at the clinic. The new dr. recommended that I may want to go to the Mayo Clinic also.

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Jan May 12, 2011 at 11:26 am

One other question, if you are taking/giving yourself injections of B12, whichever kind, daily for a week, then have done it weekly for two weeks and have your blood drawn, knowing that it was 151 or lower when you started (the 151 was in Dec. I started the injections in April) I think that the doctor told me that she would expect to see it abnormally high, like in the thousands, initially instead of 457. Is that correct?

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Kelly June 28, 2011 at 3:35 pm

Jan, it’s my understanding that different folks respond to b12 injections in different ways — and Chris is right — you need the methylcobalamin, preferrably without preservatives. You can get this at compounding pharmacies, but need a prescription from a doctor.

I just read a study where a 67 year old woman with ‘white matter’ showing up on her MRI’s had complete resolution of her symptoms with high-dose b12.

Google “B12 deficiency is commonly misdiagnosed” and you’ll pull up lots of information and hope.

Best regards,

Kelly

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Kelly June 28, 2011 at 3:37 pm

I would also try to get a second or third or fourth opinion. Clearly the injections aren’t given frequently enough, and again, aren’t the right form of b12.

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Jan June 28, 2011 at 4:34 pm

Hi all,

Well, there have been developments since I last posted. My Methyl whatever is fine, I have been tested for everything that has been discussed on here. I have not taken too many or much prevacid, I had an endoscopic and colonoscopic exam with biopsies, no celiac, chrons, cancer etc. We are leaving no stones unturned. My lumbar punch came back with a protein level of 123. I have not had my B12 checked again, I am doing that again tomorrow, and I am on once a week again, plus I am going to do a 24 hour check for heavy metal poisoning. I am not as concerned about the form of B12, I am concerned with my levels getting at least to 500 and not stopping progression. So, herein lies the new information.

The brain surgeon that I saw in 2006 and who did not seem concerned with the brain stem tumor, but preferred to consider it a hammertoma, a thing more like a collection of surrounding matter and not a growing entity, had to step back with the high protein and is now sayng it is a pilotic astrocytoma. However, this is a pediatric tumor and rarely in younger adults and is cured by removal. It is slow growing but gets large. Mine, being in the stem, mid brain area, would not be a great candidate for removal, but should have been watched more carefully if it is what he is now saying and I have been lucky. I am going to Duke for a second opinion. He said he would see me every 18 mos.

Tomorrow I see a new Dr.,, a neuropathic Dr. to be assessed for CIDP. The high protein in my punch, along with the advancing numbness and neuropathy, it is halfway up my calves, and my hands that have been more like tuning forks are now becoming numb, I am getting scared. Yes, I have a B12 issue but I have much more. It makes sense. The high dose of prednisone helped me last fall, and that would be correct for CIDP. But., this disease is an autoimmine disease, a much worse case of Guillene Barr, incurable, not likely to cause death but unchecked or treated it can. It causes paralysis so my goal at this moment in time is stop this now. IVIG is the treatment thatI am assuming that they will try??? and then blood change out? I have told all of them, no more dye of any sort will go into my body and this can be brought on by vacinations. I was told by the MS doc to get each and every one that you can think of, all flu, shingles, any thing you can think of.

Scared??? hell yes. The whole game has changed. When my b12 is checked tomorrow I will post what it is.

Jan

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Dr. X July 10, 2011 at 6:36 pm

Jan – your story is heartbreaking, though I did not read every entry. I’ve been in a similar situation… lost everything… figured out my own problem after no help from 30 doctors in 5 years. The thing you have to stop doing is seeing mainstream, Western, allopathic doctors. I don’t care how “expert” or famous they are… the more elite, sometime is not a good thing. You want to look for a good integrative medicine doctor, or environmental medicine doctor http://www.aaem.com, or even a naturopath. A holilstic approach is the only way to thrive with or overcome these chronic illnesses… not looking at it like a disease, as a singular deficiency (there’s more to MS than just B12 for sure), and especially as a drug deficiency. My neurologist thought I had CIDP and didn’t offer me any hope. I probably did have it, but a label didn’t tell me WHY I had it or how to get rid of it. Prednisone would have been horrible for me (as it is for most people and only covers up symptoms at best), as I found I was suffering from toxic mold poisoning, which does demyelinate (and yes does cause MS and CIDP and numerous other things). Keep looking for a deeper cause, but find a GOOD doctor from recommendations… be willing to travel. I was driven 11 hours to the doc I found online, when I was too weak and neurologically impaired to drive, or to even stay awake during the drive. And you are right… do NOT get any more vaccines! And keep your spirits high, as that can be more healing than any drug and sometimes nutrients (sounds nuts to some, but there are biological reasons behind how our thoughts cause illness and how our mental state can help to cure disease). Remember our bodies want to heal… we have to remove the barriers, not add more barriers (like vaccines, drugs, negative thoughts, stress). Best of luck to you!

Jan July 11, 2011 at 12:18 pm

Chris,
I know that we get a lot of folks here with a lot of varying issues and complications, each different in it’s way. I get confused by recommendations and know that I need the guidance of my neurologist and I feel fortunate to have one that is on board. I do not have pernacious anemia, all the concerns with different blood issues that would affect my abilty to absorb B12 have been assessed from taking prevacid too long to my small intestine issues (had colonoscopy and endoscopy with biospsies). I was tested for the issues for MTHR, I mean she has left no stone unturned. But, when administered B12 shots and my levels reached 1513 and it was not stopping the progression of the symptoms, I did not expect it to correct them right off, she knew more was at play. I have no reflexes, ringing in my ears, blurry vision, exceptionally bad ataxia, just so many nasty symptoms. I do not have MS, my spins is free from any sclerosis, but my nerve conduction, and muscle conduction indicate an issue. If there were no brain tumor when they did the lumbar punch and found the high protein, I would be being treated for CIDP, I feel certain. The brain stem tumor in my mid brain has just complicated everything and truthfully I am so sick, I just feel like giving up. Sitting around waiting for the special blood work that the neuropathic doctor is doing I am so disheartened. I hope so much for the B12 to be it. As to why I am not uptaking B12? I wonder if anyone will care. Sometimes I feel like I am just sitting around waiting to die. I did make an appt fir a second opin on the brain tumor. But I do not want the records from the first dr. reviewed. How is that an impartial disgnosis? I just want to start treatment and get better or just have them all leave me alone and let me succumb. I am pretty depressed.

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Jan July 11, 2011 at 12:19 pm

oh and we are waiting for the heavy metals test results too. No stone unturned.

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Larry May 12, 2011 at 5:47 pm

Conventional Wisdom says that if you’re over 50…you’re probably B 12 deficient.
So….I’ve taken a 1,000 mcg lozenge, 4-5X a week for a couple of years now.

I had a recent blood test and my B 12 level was a bit high.
It came in at 1165, which is a bit over the upper level of 1000.
No health issues here other than some reflux issues.
I’ll be going for another B 12 test in June.
That’ll also include a complete blood test.
Until then I’ve stopped taking any more additional B 12.
Other than what’s in a multi.

It’s interesting how everyone I speak to on this, hasn’t seen this before.
High levels can be a sign of serious matters I’m told…but…how high ?
Can the high level here be due to a daily B 12 supplement ?
I’m the oddball on this one.
As “CW” says you can’t take too much B 12.
Maybe I’m the 1% who can.
I’ll know more next month I guess.

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gregory barton May 13, 2011 at 4:57 am

What to do in a borderline case? I just got the result: 465 pg/ml, which is above the 450 minimum of Pacholok and Stewart (cited above), but below the 500 minimum that you referred to in the case of Europe and Japan.
What is the best option:
i. eat more liver?
ii. take a B12 supplement?
iii. do nothing and test again in a year?

Thanks.

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gregory barton May 18, 2011 at 6:38 am

This website claims that optimal is above 800:
“B-12 lab test: Measures an essential vitamin, B12, which can be low in hypothyroid patients due to low stomach acid. You are looking for an optimal B12 lab result at the top of the range. It is NOT optimal to simply be “in range”. If your range is similar to 180-900, a healthy level is 800 or higher. In the 500-800 range, you can benefit from taking B12 lozenges, specifically Methylcobalamin. It has been shown in studies that patients with labs under 350 are likely to have symptoms, which means the deficiency is very serious and has gone on for a few years undetected. Lab ranges are much too low for B12…in Japan the bottom of the range is 500.”
http://www.stopthethyroidmadness.com/lab-values/

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Chris Kresser May 18, 2011 at 7:13 am

There’s really no support for that number in the scientific literature. That said, there’s little risk of toxicity with B12 and little harm that can be done by supplementing with methylcobalamin even if you have normal levels. And in fact, I have some patients that do have levels of 800 or even higher that still benefit from supplementing. Placebo? I’m not sure, but since there’s not much risk I’m not concerned.

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Jan May 13, 2011 at 12:59 pm

Chris
I saw my PCP yesterday. He did not seem very concerned with the deficiency. He said that I could do injections or subingual. He had the same results with both. I think that my biggest concern is my advanced neurological symptoms. Perhaps he is not figuring that into the equation. He is an excellent Dr. and said he had some research to do. I have always trusted him without qualms. But he did not really seem to see the need for the B12 type that I was pushing for. I feel that with my level on up to 457 after giving myself injections every day for a week and having done it once a week for two weeks before that level was attained says something about my body still not taking the B12 up properly.

Bottom line, how long before I would just die if no one took this seriously, or became paralyzed or fell into dementia? I am just worn out with it all. I am tired of dealing with it. I am ready to lay down.

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Elisabeth May 13, 2011 at 2:34 pm

Jan, please, take a high-dosage of vitamin-D3. As soon as posible. Even if B12 and folic acid and B6 are important to you, so is vitamin D.

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Alex May 13, 2011 at 2:18 pm

Here is some evidence presented that cyanocobalamin is not poorly absorbed:

http://www.michaelmooney.net/Vitaminb12comp.htm

Any truth to this?

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gregory barton May 13, 2011 at 7:25 pm

Mooney’s website is remarkable. No doubt, he is a director of a supplement company and recommends his own products. But his depth of research is compelling.

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mary ann May 13, 2011 at 2:41 pm

Jan,

Have you been tested for MTHFR? You might be deficient in other B vitamins such as folate. There are prescription forms of methylfolate (the activated form) such as deplin, metanx, and cerefolin. Taking methylfolate in conjuction with the b12 might help your neurological symptoms. You might try googling “MTHFR treatment”, or if you are in the WA state area there is a fantastic doctor named Neil Rawlins that treats B vitamin deficiency and MTHFR. You can even do a google search and find his MTHFR protocol online…

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Kelly June 28, 2011 at 3:39 pm

I agree with everything Mary Ann says, except for one thing — Rawlins is not a doctor…he’s a patient who went through similar issues related to b12 and methylfolate and MTHFR problems. I’m looking into that myself…after 13 years of worsening CFS.

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Jan May 13, 2011 at 3:17 pm

I am in NC. I need to dig out the recent blood tests. I am not sure if folate was part of it. I know that the doctor checked my potassium because my legs and arms hurt so badly, especially at night. She was concerned that I was having a side affect to the B12 injections. But it was fine. I need to see what was looked at on the blood panel that was ran.

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Susinn May 13, 2011 at 8:57 pm

I have a parietal cell antibody which has in the past resulted in macrocytic anemia from vitB12 deficiency. Do you know if parietal cell antibody is associated with other gut issues such as leaky gut or gut/brain axis issues? Do you have suggestions how to approach this other than sublingual B12 and folic acid?

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Chris Kresser May 14, 2011 at 7:00 am

First, don’t take folic acid – take tetrahydrofolate (natural folate). They have a different effect on the body, and some studies show increased cancer risk with folic acid. Second, you have to address the immune dysregulation, which is the underlying problem. That’s an involved process.

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Julee Ellison May 16, 2011 at 5:31 pm

Hi Chris,

Both my Mom and Grandma took B-12 shots for years. After being sick a year+ ago, I recently was telling my vitamin guy about how I still have such muscle fatigue. He recommended that I add NOW B-12 (as Cyanocobalamin 10,000 mcg) to my regiment. He said to drink one tube a day for 3 days, and then one tube every other day after that.

This seems like a high amount of mcg’s to me … or am I to take that much because such a small percentage is actually absorbed by the body?

Thanks bunches!

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Chris Kresser May 16, 2011 at 5:39 pm

I prefer sublingual methylcobalamin.

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Julee Ellison May 16, 2011 at 5:42 pm

Okay. I will ask if he has that. If not, is there a place/brand you’d recommend?

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Julee Ellison May 16, 2011 at 5:44 pm

Oh, and what dosage of the sublingual methylcobalamin.?

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Mark May 16, 2011 at 6:30 pm

Source Naturals has a sublingual B12 that is methylcobalamin.

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Mark May 16, 2011 at 6:30 pm

And… Source Naturals offers it in a 1mg tablet and a 5mg tablet.

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Julee Ellison May 16, 2011 at 7:15 pm

Thanks Mark!!

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Julee Ellison June 9, 2011 at 12:26 pm

I’m just curious … I bought the 1mg, but my vitamin guy said I should be taking the 5mg. Any thoughts on this?

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Jan May 18, 2011 at 3:33 pm

Hi Chris

Ok, background again, was dx in 07 with MS, but was not told I had a B12 of 362. It continued to drop. 08 it was 331, was not recorded in 09, and in 10 in was 151. Dr. was released from duty at the clinic, new dr. found the issue and began reasessing MS. Has all but ruled it out. Has me on B12 shots, they are the cyancocbalamin, 1ml, did 1 a day for a wk, then 1 a wk for a mo, just finished, and will go to monthly depending on my count next week. My count after the daily and one of the weekly was 475. I am ok for all the other areas you recommended. All of them. I had them checked. I won’t try to type them all, my hands are numb. They are worse than when I started. My feet are numb and worse as well. The numbness in my hands is simillar to tuning forks, a reverberating feeling. I fall down, have no reflexes left when they are tested, none in my knees, elbows etc, no reaction when the bottom of my foot is scraped. I cannot heel toe, etc. Blurry vision, crossed eyes to the far left or right, nystamus in left eye and eye muscle twitching when tired. Both of my eyelids had to be done to control drooping last year. Also, I do have a midbrain tumor, a glioma, which is very slow growing, near the aquaduct, that the first Dr. told me had disappeared. It has not. Needless to say, I am very upset. I have constant ringing in my ears. For the past five or six years. The lumbar punch was full of protein. The nerve conduction test, evoked potential, showed very little abnormality. I am having panic attacks. I see the Dr. next week, the neurologist. I was going to turn this over to my family dr., but I have decided to keep with the neurologist since this started there, I have the tumor to contend with and the brain surgeon is on the same floor and they confer and my family doctor has so much to catch up on and this is so complicated.

With all this info, and all my other numbers are in line, and also, I have a colonoscopy and endoscopy scheduled for next week, (I have taken prevacid for years, I have bad gastro issues), to see if there are any problems there that may have caused this B12 thing to begin with. I have spent two hosp. stays of ten days each passing only blood, once was ischemic colitis, and the other undertimed.

So, is there anything else that I should be doing? Folate, all of that is good. All the things that you say to check were, it made me feel very good that my dr. had checked them, she is on top of this.

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Elisabeth May 18, 2011 at 5:31 pm

Please Jan, did you ever check your vitamin D3…if you did not, you must. It is really essential

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Jan May 18, 2011 at 8:41 pm

Hi

I will ask her to add it to the panel she is running next week if she has not tested for it but before I do, if she has not already tested for it, what is the importance of this in conjunction to my issue?

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Jan May 18, 2011 at 8:42 pm

Oh, and I forgot to add that she is adding copper and some other metals to my tests to see if there are issues with that trying to pinpoint my numbness.

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Jan May 24, 2011 at 9:20 pm

Chris
Ok, I went to the doc today. After doing IM shots of B12, once a day for a week, then just finishing weekly for four weeks, (half way through the weekly my level was 475, up from 151 at start), and today my level was 418. All my numbers are normal, my intrinsic value is fine, folate, liver, the Methyl thing, all the numbers for all the things you have said to check are great. My CBC is perfect except for a slightly elevated chloride. My neurologist has never had this happen. She is sending me to a hematologist. Please, any comments. I think that some of the feeling is returning to my feet and hands, it could be wishful thinking, but I think so. She said one thing that was very upsetting to me, that because I had psychiatric issues, depression and upset from a cheating spouse, I may be making things worse in my head. I told her that I was offended and rejected that. Who would not be affected by a life trauma, but I am not exaggerating that I have NO reflexes anywhere in my body, have vertigo, fall down, have a terrible gait, blurry vision and a brain tumor in my midbrain. What would you recommend now please. I just want to vomit, which by the way I do quite often. I am having a colonoscopy and endocopic procedure at the same time next week as I do have a history of gastric issues, ischemic and regular colits, and due to the vomiting they are doing the endoscopy. What else? I am lost. Please respond. I know that you are busy. But I do not know where to turn. I am doing everthng that I know. The test for copper has not come back yet. lumbar punch was very high for protein, like 200 maybe? brain tumor.

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Jean June 9, 2011 at 1:20 pm

Any suggestions or recommendations for those who don’t seem to tolerate supplemental B12 even when there is a known deficiency? I am very deficient in B12, but any attempts at supplementing (methyl and hydroxycobalamin) have caused extreme fatigue.

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Chris Kresser June 9, 2011 at 1:33 pm

Have you tried injections with the same result?

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tee June 22, 2011 at 4:36 am

my troubles started 2 years ago i was first dx with PA then vit d deficient then told i had a stroke,then cfs/fibro i feel worse and worse but im convinced its developed into MS but since having the PA and fibro dx thats all the gps blame it on and wont do any more for me the only thing that helps me get out of bed in the mornings is hydroxo, i get it from here http://www.b12-hydroxo.co.uk/
Gp will only give it me every 3 mths so i use it weekly, do you know or think an infusion would help me?

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Elaine Garcia July 1, 2011 at 8:56 am

I just received my first b12 injection yesterday. I have been suffering from symptoms of b12 deficiency for about 10 years, going to the Doctor (s) and coming out never feeling better with any treatment they provide. I read the book “Could It Be b12, an epidemic of Misdiagnoses” and so many lights went off in my head. At this point I had severe breathing problems (that is how I found out about b12 deficiency, by doing a search for “difficulty breathing.” I ordered the book online and read it cover to cover the day it came. The book mentioned that radiation treatment for cancer could cause b12 deficiency. I had cancer in 1989 and have 4 months of daily radiation treatment.Blood work was done weekly. After I was finished my GP had me coming in for b12 shots, eventually they were monthly. He didn’t call them b12 shots so I didn’t know what they were. I never asked, I trusted this old country type of doctor with all my heart. It devestated me when he had a stroke and had to retire quickly from his practice. He sent to me a doctor that he really liked, but, sadly, he wasn’t on my Insurance plan. I felt great and figured whatever that shot was, I felt so good I didn’t need it. After being away from the b12 shots my health went rapidly down the tubes. When my doctor would see me they had that look, “oh, not her again, I really don’t know what to do anymore, look on his face. After reading about b12 I asked him about b12 injections and he said i watch too much TV. I still didn’t have any connection between the shots I received after Radiation treatment and the b12 shot I thought I might need now. Memory was one big issure with me and kept getting worse. About a week later I sat straight up in bed and said to myself, “What was that shot Dr. C was giving me…one time he charged me only for the shot because the insurance was getting fussy. That shot only cost 5.00 in 1995. I knew it was b12. I looked on the internet and found his number (it had been 15 years since I spoke with him. We talked for over an hour, what a great Doctor. He was so shocked and upset that I hadn’t been getting the shot and that not one doctor I ever saw (especially with the Cancer and Radiaiton history) never, ever thought to give me a very inexpensive b12 test. He wanted me to have my Doctor call him that instant and get me back on b12 right away! My doctor was out of town for 2 weeks. The longest two weeks of my life. When she arrived back I say her right away and I was a nervous wreck, what is she, like the other doctor, just ignored the b12 issue. Well, she didn’t. She gave me a blood test and that very same day a shot of b12. That was yesterday 6/20/11. She is going to the doctor that gave me the b12 injections and converse wtih him. I couldnt’ believe it, the nightmare was over. 10 years of suffering very poor health to the point where I would go to bed and wish I would not wake up. Yes, a simple blood test would have given an insight into what was really wrong. I do recall that in the book, Could It Be b12, the author suggests that when a Doctor sees a patient with mulptiply symptoms that can’t be resolved they should check right away for b12 deficiency. I suggest, when not check a new patient right away and check routinely after that. So much suffering could be avoided. This is day 1 and I know it will take time (10 years is a long time) but I now have hope, hope I would like to pass on to others. I wouldn’t even want my worst enemy to suffer what I have suffered these past 10 years. I will never get those years back again.

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Jan July 1, 2011 at 2:26 pm

Hello all,

My B12 is up to 1513! And I have CIDP, they are running some extra blood work and I will be starting IVIG treatments when it all comes back torule out lupus, etc. I am looking forward to getting the use of my arms and legs back. I have been through EMG testing and my nerves and muscles are attacked but the myelin only is affected at this stage. I am so excited to get the treatments and get better. I will take my B12 shots monthly and keep checking it.

Jan

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Elaine Garcia July 10, 2011 at 11:14 pm

Chris Kresser May 16, 2011 at 5:39 pm

I prefer sublingual methylcobalamin.
Chris, I am the person above that was so thrilled to find out that b12 deficiency was my problem. I had so many symptoms and I could not resolve. I was taking sublingaul b12, methylcobalamin for about 2-3 weeks before I got my first injection of b12. I went home, fell asleep, actually I more like went into a nod.
Then I would fall asleep sitting up talking to my daughter. In the middle of typing an email. This happened 2x and lasted for a few days. This was the shot of cyanocobalamin. I felt so much better taking the b12 methyclobalamin sublingual. I am taking those again, but I would like to know if you would know why that happened with the cyanocobalamin? I read on message boards that this happened to other people.

Thanks
Elaine

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Janet July 20, 2011 at 11:10 pm

Hi! I was just diagnosed as having a B12 deficiency and looked around online and saw that one of the symptoms is “breathing difficutly”. I have had breathing trouble since the 1st of July and it is now the 21st of July. Doctors have found nothing wrong with my lungs and im getting 100% oxygen, my heart rate is normal, and my blood pressure is perfect. I just have this feeling of not being able to get enough oxygen. Its almost like someone is holding a thick blanket over my mouth and im struggling to breathe in hot humid air at all times, and on top of it, i have a permanent lump in my throat. So what my question is, would these type of breathing problems be included into the B12 deficiency symptoms?

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