What do all of these chronic 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 illnesses like depression, anxiety, bipolar disorder, and psychosis
- Cardiovascular disease
- Learning or developmental disorders in kids
- Autism spectrum disorder
- Autoimmune disease and immune dysregulation
- Cancer
- Male and female infertility
Answer: Their signs and symptoms can all be mimicked by a vitamin 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, the condition is far more common than most healthcare practitioners and the general public realize. Data from a Tufts University study suggests 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. Nine percent had an outright nutrient 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. (1)
That said, this type of deficiency has been estimated to affect about 40 percent 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, and decreased mobility—are at least in part caused by a deficiency.
Why Is It Underdiagnosed?
This is why most studies underestimate true levels of deficiency. Many 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 vitamin deficiency symptoms. (2) Experts who specialize in the diagnosis and treatment of a deficiency, like Sally Pacholok, R.N., and Jeffrey Stuart, D.O., suggest treating all patients that are symptomatic and have B12 levels less than 450 pg/mL. (3) They also recommend treating patients who show normal B12 levels but also have elevated urinary methylmalonic acid (MMA), homocysteine, or holotranscobalamin, which are other markers of a deficiency in vitamin B12.
B12 deficiency can mimic the signs of Alzheimer’s, dementia, multiple sclerosis, and several mental illnesses. Find out what this vitamin does and learn how to treat a deficiency. #B12 #B12deficiency #cognitivedecline
In Japan and Europe, the lower limit for B12 is between 500 and 550 pg/mL. Those levels are associated with psychological and behavioral symptoms, such as:
- Cognitive decline
- Dementia
- Memory loss (4)
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 the vitamin) 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 a deficiency. Long before anemia sets in, deficient patients will experience several other problems, including fatigue, lethargy, weakness, memory loss, and neurological and psychiatric problems.
The Stages of a Deficiency
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, macrocytic anemia (stage IV). (5)
Common B12 Deficiency Symptoms
The signs can look like the symptoms of several other serious disorders, and the neurological effects of low B12 can be especially troubling.
Here are some of the most common vitamin B12 deficiency symptoms:
- Tingling or numbness in the hands and feet
- Brain fog, confusion, and memory problems
- Depression
- Premature aging
- Cognitive decline
- Anemia
- Weakness
- Fatigue
- Reduced appetite and weight loss
- Constipation
- Trouble balancing (6)
Children can also show symptoms, including developmental issues and learning disabilities if their B12 levels are too low.
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Why Is It So Common?
The absorption of B12 is complex and involves several steps—any of which can go wrong. Any of the following can cause B12 malabsorption:
- Intestinal dysbiosis
- Leaky gut and gut inflammation
- Atrophic gastritis or hypochlorhydria, or low stomach acid
- Pernicious anemia
- Medications, especially proton pump inhibitors (PPIs) and other acid-suppressing drugs
- Alcohol
- Exposure to nitrous oxide, during either surgery or recreational use
This explains why a 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 two or three times daily.
Who Is at Risk for a Deficiency?
In general, the following groups are at greatest risk for a 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
You cannot get B12 from plant-based sources. This vitamin is only found in animal products. That’s why vegetarians and vegans need to know the signs of deficiency—and the steps necessary to fix the problem.
A common myth among vegetarians and vegans is that it’s possible to get B12 from plant sources like:
- Fermented soy
- Spirulina
- Brewers yeast
However, plant foods said to contain B12 actually contain B12 analogs called cobamides that block the intake of and increase the need for true B12. (7) That explains why studies consistently demonstrate that up to 50 percent of long-term vegetarians and 80 percent of vegans are deficient in B12. (8, 9)
Seaweed is another commonly cited plant source of B12, but this idea is controversial. Research indicates that there may be important differences in dried versus raw purple nori; namely, raw nori may be a good source of B12, while dried nori may not be. One study indicated that the drying process used for seaweed creates B12 analogs, making it a poor source of the vitamin, while animal research suggests that dried nori can correct a B12 deficiency. (10, 11) Seaweed may provide B12, but it’s not clear if those benefits are negated when that seaweed is dried. I recommend caution for that reason.
The Impact of a Deficiency on Children
The effects of B12 deficiency on kids are especially alarming. Studies have shown that kids raised until age six 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 an association between a child’s B12 status and their performance on testing measuring:
- Spatial ability
- Fluid intelligence
- Short-term memory
Researchers found that formerly vegan children scored lower than their omnivorous counterparts in each area. (12)
The deficit in fluid intelligence is particularly troubling, the researchers said, because this area impacts a child’s ability to reason, work through complex problems, learn, and engage in abstract thinking. Defects in any of these areas could have long-term consequences for kids.
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. If you’re not willing to take a dietary supplement, it may be time to think twice about your vegetarian or vegan diet.
How to Treat a Deficiency
One of the greatest tragedies of the B12 epidemic is that diagnosis and treatment are relatively easy and cheap—especially when compared to the treatment patients will need if they’re in a late stage of deficiency. A B12 test can be performed by any laboratory, and it should be covered by insurance. If you don’t have insurance, you can order it yourself from a lab like DirectLabs.com.
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 or high-dose oral cobalamin indefinitely. This may also be true for those with a severe deficiency that’s causing neurological symptoms.
Typically in the past, most B12 experts recommended injections over high-dose oral cobalamin for people with pernicious anemia and an advanced deficiency involving neurological symptoms. However, recent studies have suggested that high-dose oral or nasal administration may be as effective as injections for those with B12 malabsorption problems. (13, 14)
Try Supplementing
Japanese studies indicate that methylcobalamin is even more effective in treating neurological symptoms and that it may be better absorbed because it bypasses several potential problems in the B12 absorption cycle. (15, 16) On top of that, methylcobalamin provides the body with methyl groups that play a role in various biological processes important to overall health.
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Change Your Diet
Nourishing your body through whole food is the best way to get the vitamins and nutrients you need. If you’re low on B12, try eating some vitamin-rich foods like:
- Liver
- Shellfish
- Clams
- Oysters
- Organ Meats
Eating other kinds of seafood, like octopus, fish eggs, lobster, and crab, can also help you attain normal B12 levels. If you’re seafood-averse, you can also get this vitamin from:
- Lamb
- Beef
- Eggs
- Cheese
It’s important to note, though, that the amount of B12 in these foods is nowhere near as high as the levels in shellfish and organ meats.
What to Do if You’re Experiencing Vitamin B12 Deficiency Symptoms
If you suspect you have a 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. You’ll probably need help from a medical practitioner for this part. 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.

I have a couple questions:
Has anyone had experiences with headaches after starting B12 (injections)?
And what about testing B12 levels going forward? I had my MMA tested in 2011 and was diagnosed with pernicious anemia based on that and other information by a naturopath, but no B12 tests since (other blood work annually). Just curious what people are doing going forward with that part. Is there anyone else who specializes in this area that can work at a distance if needed?
I have been doing one injection a week at home of methyl B12, which has really helped my energy levels, and was told I’d likely need to stay on them for life, but am curious now after reading all this.
And Greg, thanks so much for all the helpful information!!
Hi Felicia,
I get headaches (and a scratchy throat) if my folate is low. I take a methylfolate supplement along with the B12. I’ve been taking a sublingual B12 daily for a month now and it’s helping tremendously… it’s certainly boosting my levels. I hate getting shots.
Amber,
Thanks for the information — very helpful. I get the throat thing too, wasn’t sure what that is about. May I ask what supplement you like for methylfolate and what you use sublingually? And did you test your levels with any follow up testing at a later date? Thanks so much.
Felicia,
I use Solgar Metafolin 800mcg, divided doses thru the day (and up the dosage as needed, per my symptoms), and Enzymatic Therapy B12 1000mcg (I hold this in my upper lip so it dissolves slowly). I’m careful to avoid folic acid which exacerbates my low folate symptoms. Maybe I’m unable to process folic acid into the active form, but apparently this is common.
On this protocol, low potassium can be a problem, so I pay attention to any muscle cramps or malaise which low potassium can cause. It’s a lot to keep track of 🙂 I’m becoming much more body aware these days! I have a 99 mg potassium supplement I take as needed (forget which brand, don’t think it matters).
I just got my B12 level checked 2 days ago and am waiting for the results. I wish I’d been tested before starting B12, but the doc couldn’t get me in for a month, and I was really suffering, so didn’t want to wait.
By the way… Fredd never mentions it but if you are potassium deficient then you are surely magnesium deficient. They go hand in hand. Muscle tension or problem are almost always solved by magnesium for me. Also, taking potassium if your indeed magnesium deficient will highlight magnesium deficiency symptoms and bring them to the forefront. I would look up magnesium deficiency symptoms and see if you are experiencing any.
Thanks Finndian,
It helps me sleep well if I take Magnesium and zinc right before bed. If I forget, then after about 2 hours of tossing and turning while my husband snores away, I finally remember, and go take it! I get the restless legs symptom at times (very annoying sensation), so now I know it’s probably low magnesium. I’m hoping as my gut heals, I won’t need so many supplements. But for now, they help.
Definitely helps restless legs issue for me too. My sure sign of magnesium deficiency is muscle pain and stiffness across my shoulders and up my neck. Oddly, enough I start grimacing a lot as well. Like getting out of my car or some other odd physical motion or ever remembering a forgotten appointment… I’ll screw up my face. Odd thing is that I’ve read a couple studies that say magnesium helps Tourette’s syndrome sufferers. Always wondered if my grimacing has anything to do with that.
Once my gut condition improved my magnesium needs have plummeted. Good luck. Don’t forget L-glutamine, meticlear plus and high dose BCAA’s… thats the combination that finally cured what I assume was Leaky Gut syndrome.
Finndian,
Could you speak more about what you did to heal your gut? I take L-glutamine. What is meticlear and BCAA’s? I am really struggling. I changed my diet, I am doing the methylation supplements but everyone says that is pointless until you fix your gut.
Amber,
Thanks for the info, and very interesting about the folate. I was taking a Thorne supplement with both B12 and folate in it (one bottle a couple months ago) per my naturopath and then a Pure Encapsulations methyl B12 and folate (800 mcg) after that but wasn’t tracking the headaches then so that would be interesting if the headaches are more related to that than too much B12 (because I was also doing 1-2x a week injections then).
May I ask what test you did to test your levels? Serum B12, MMA and Hcy or something else? I’d love to hear the results if you don’t mind sharing, and I can give you my email if that’s easier.
In a perfect world, where doctors actually listen to patients, I would’ve done a B12 serum, urinary MMA, and homocysteine. With my doctor, he refused to test MMA and homocysteine, unless B12 results come back low. Which is a mistake, since B12 serum level can be high, but there can still be a functional deficiency (I don’t understand the mechanism behind this). He ordered some other lab tests, I think for thyroid.
He was more interested in prescribing drugs than listening to me. I won’t go back to him…but it’s very hard finding a decent doctor in my area.
When I get my results back, I’ll let you know what my level is!
Thanks for the info, and for sharing your results when you find out. Very helpful.
Hi Amber, It is actually very important that you get your MMA and Hcy levels tested. From my reading, one of the reasons that they don’t routinely test it is because the tests are very expensive. Another reason is that most doctors do not really know much about deficiency and how it affects Hcy and MMA and what the consequences are. If you only get your B12 levels tested be aware that the US lower limit of normal is for clinical deficiency, such as you would expect if you were anemic. This level is way too low. There are many papers that show that Hcy and MMA start to increase when your levels drop below 300 pmol/Lm or 406 pg/ml. Elevated MMA leads to gradual demylination of your neurones, whilst elevated Hcy leads to lots of cardiovascular events, so it is quite important that you keep them low all the time.
Amber,
Just following up to see if you have had any additional feedback about your lab tests and B12+ levels. I just tested my B12, MMA, Hcy and Folate levels and am waiting to see my practitioner to go over them. My B12 was >2000 and I have been doing injections (weekly until now, and twice weekly before that) for a couple of years, so we shall see. If I end up staying on B12 supplements I would sure like to use the sublingual ones going forward. I love the energy levels I’ve had since starting the injections but to be honest, I really do not like them. So we shall see, and I’ve love to hear more about your results if you feel like sharing.
Hi Felicia, I just picked up my results a couple days ago. I was quite surprised by them! The good news…for the first time ever my hematacrit (blood count), has gone up a little compared to what it was 4 months ago! This has never happened before…I’ve been anemic all my life, so I’m thrilled to finally see something helping with that. I knew I have less brain fog, and better days lately of being able to function, but it’s good to see it on paper.
The weird stuff now….I’m really regretting not insisting I have the Hcy and MMA tests done, coz it could’ve clarified things: My B12 is 708 pg/ml, and my folic acid level is >24 ng/ml which is “Excessive”. To me, this really points to a problem with my processing folic acid into its active form, so it accumulates in the blood, unused. And not enough active folate, of course means the B12, which is used in the same metabolic pathway, is also not being utilized, hence my B12 deficiency symptoms. That’s my theory anyway….I’ve sent out a 23andMe test and am awaiting the results to see if I have the MTHFR gene defect (I strongly suspect I do). In the meantime I’m continuing Freddds protocol, but I tend to still get headaches very easily if I don’t take enough methylfolate…I might need a much higher dosage than what I’m currently taking. I’m looking around for a higher dose methylfolate, so far I found one but it’s very expensive.
Do share your own results if you don’t mind, I’d be very interested.
I don’t know what it is with the B12 and the throat. When I was at my worst I actually got a paralyzed vocal cord and couldn’t speak for 3 months. Injecting B12 every week brought the cord back to life but it was scary. Now I know I need extra B12 when I get hoarse for no apparent reason because I know that the feeling is of the vocal cords getting weak and the irritation is them not vibrating properly.
Finndian,
Wow, I had no idea those could be connected, thanks for the information.
Amber,
I didn’t see a reply button under your post so am replying to one down, hope it works.
Great to hear you got your results and are finding some improvements. Was your hematocrit really low? If you feel like sharing that level that might be helpful too. And hopefully you’ll get some responses about your other concerns — I’m not familiar enough with this issue to be able to respond, but it really helps to hear your story. Did you say you are also working with a practitioner?
My levels were B12 >2000 pg/mL (and I unfortunately never tested it before this)
Folate 17.4 ng/mL (first time I tested)
Hcy 5.53 umol/L (first time I tested)
MMA (serum) .14 nmol/mL (I only did serum because that’s what I did once before)
and my HCT was 41.7
I was diagnosed with pernicious anemia (by a naturopath) two years ago based on blood work and symptoms and that’s why I started the injections (weekly up to now), but now I am revisiting it all to see what will be the best path forward. I also have an autoimmune condition (psoriasis) and have been off gluten for 10 years and most dairy for about a year. So it’s been really helpful to hear what people are doing and Chris’ responses, since I had no idea this affected so many people.
Btw Amber, my practitioner responded today already about the test results and said the high levels of serum B12 were not a concern but the low level of MMA is, perhaps a sign that the pernicious anemia is acting up, so I will see her this week. So glad I got these tests done so I can follow up for now, so I will be staying on weekly injections for now until I learn more.
A headache after stating b12, and orthwer symtoms too, two entire groups of symptoms can often appear. They are hoifger up on this page. They usually are low potassium wich can be dangerous. People start helaing and and on the 3 or after day potassium can go low as cells get made. Somewhere between 1200 and 3000mg of additional potassium can be helpful. The other set of symptoms are often folate insufficiency. Often people get so much healing started that other deficiencies are induced and folat l-methyfolate deficiency often is the one.
Fredd, is there a certain brand of potassium you prefer?
Freddd,
So can you use serum potassium levels as a guide in this process? Just curious. I know my levels have been borderline before, and I drink mineral water with potassium in it, which seems to help overall too.
HI Felicia,
I just had my first B12 injection and I’ve been getting headaches ever since. I’m assuming it’s from the injection. Right now I am getting monthly and they will do a follow up blood test in 3 months. How were you able to get the at home injection. I inquired about that today and they told me that you would have to have a nurse come into the home to administer. My concern going forward is the expense of the injection. I would definitely call your doctor and have them do follow up bloodwork on your B12 to see if your count has gone up or down.
My husband does my injections. My doc wanted me to have it done in the office for a while and then she wrote me an Rx for the B12 and another for the needles.
Lisa,
Thanks for the information, and sorry to hear about the headaches — hope that gets better. I am able to do home injections because my naturopath (in Colorado) gets the B12 through a compounding pharmacy and I buy it from her, and then she taught me how to do them myself in my thigh (she gave me the first two injections). Was challenging at first and now very simple. They sell the syringes or you can get them online. And the B12 (methyl) is $30 a vial and lasts me a long time — more than a month for sure (and I do injections once a week). And thanks for the suggestion about follow up testing — good to know that’s confirmed by many people here.
Hi Felicia,
I and many others find a subcutaneous injection somewhat lager than the IM as it is a time release that way, is more effective. Also much less of an ordeal. I just have a problem doing an IM to myself. Using a 5/16″ inch 31 gauge needle is a breeze. Also, I wrap the vial in foil, except for the seal, and never expose it to light. I also wrap the syring in foil before drawing. I have perfomed a series of trials and found out that a total of ten minutes exposure in a vial or 1 minute in a syring is enough to make a qualitative difference of not working on neurological issues at all since the light breaks down MeCbl to HyCbl and AquoCbl, very quickly. Some people react with acne to that. Good luck and Good health
Freddd,
Thanks for the info. I didn’t know about the vials and light, but did notice they come in dark glass containers so that makes sense. My next step is to get tested and then see if I’m taking the right amount of B12 weekly — since they told me it’s for life it makes sense to do a follow up test (since I only had the MMA tested and never B12 serum or homostyceine) — waiting to hear back from my practitioner and will go from there. Amazing what a difference it has made in my energy levels too.
Hi Kristina,
If you a good methylcobalamin 1,000mcg, Enzymatic Therapy B12 infusion is the best I know of, and take 1 every day for 45-120 minutes under your upper lip, you will do far better than injections of HyCbl every now and then, even better than daily injections. It is just more effecftive. Taking a methylfolate brand can help you retain more of the b12. For instance, Metafolin by any brand is the same and the are other brands of l-mehtylfolate. Then there is AdoCbl, the other half of the active b12 duo.
Hi,
I have just been diagnosed with B12 deficiency today and have to have (hydroxocobalamin) injections once a week for three weeks then once a month for three months. I take Metformin which I read can be a cause of low B12, if this is true and I continue my Metformin will my B12 levels ever become normal?
Hi Kristina,
One of the most common side-effects of taking Metformin for your diabetes is that it mucks up your VB12 metabolism. For some reason doctors diagnosing the Metformin often do not tell their patients that they are likely to become VB12 deficient.
Now there are two active forms of the VB12 vitamin in the body, one is adenosylcobalamin, which is involved in energy production from some amino acids and some fats. The other is methylcobalamin, which is involved in DNA synthesis as well as red blood cells. Unfortunately by the time you have become anemic, you can have other much more serious complications of VB12 deficiency, which you will notice in the various discussions on the blog.
Firstly, the Adenosylcobalamin deficiency will cause you to feel tired and you will muscle fatigue early. More importantly a by-product of the adenosylcobalamin deficiency is an accumulation of another molecule called MMA. Now this is really bad because it can upset the myelin sheaf on your nerves, and can cause a whole lot of nerve damage related symptoms.
The adenosycobalamin deficiency can cause an increase in homocyeteine levels, which has been associated with an increased risk of cardiovascular disease.
It is important that if you are getting VB12 injections that you get your levels of MMA and Hcy checked. Only when these levels return to “normal” are you getting enough VB12.
As long as you are taking metformin, and assorted other drugs for your diabetes, you will need the VB12 shots.
If you exercise enough and control your sugar intake you MAY be able to go off metformin if you can get your blood sugar levels down far enough. A lot of work, for some people, BUT if you look at all the nasty side effects of diabetes as far as dementia, peripheral neuropathy, and macular degeneration in the eye, you may think it is worth it. My mother decided not to listen and she now has late stage dementia, can barely see, has lost most of her teeth which rotted out, and spends most of her life sitting in a chair not knowing where she is, or what is going on. If it was me….
I can help you with alternatives to injectable VB12, but I cannot do the hard yards for you. Best of luck.
Hi Lan, Common symptoms of b12/folate deficiency could be some collection of common non-specific symptoms. Fatigue and tiredness, depression, lots of mysterious aches and pains, excema, dandruff, MCS, allergies, asthma, IBS, sore mouth, sore tongue, canker sores, sores at the corners of mouth, muscle pain. I’ve run across the “moons” on fingernails site. The woman writing it had very serious b12/folate deficiencies. She is sincere. I just don’t know. Those might be the only b12 deficiency symptoms I never had. Out of 400 or so possible symptoms most people never have more than 1/3 to 1/2 of them. Just starting out there is always a first handful of symtpoms. One of the things that distinguishes b12 deficiencies is the dozens of symptoms the doctors are all willing to ignore and tell you they mean nothing. There are at least 5 subdeficiencies involved and what symptoms a person has depends upon which combination of subdeficiencies they have. The very best way to tell is to the supplements. The one thing I am reasonably sure of is that people without deficiency symptoms have no responses. If one puts an Enzymatic Therapy B12 infusion (MeCbl) under a lip for 1-2 hours, 75% of those with a deficiency will have a response before the two hours. If one use a combination of 1 Enzy, and an Anbol Dibencoplex (AdoCbl) capsule emptied between lower lip and gum and at same time as MeCbl under upper lip and retains it the same 2 hours, 85% of thosw with deficiency will likely respond. If an L-methylfolate 800mcg is swallowed 30 minutes before the other two items, approaximately 90% with deficiency will have a response within 2 hours. If a 125mg or larger l-carnitine fumarate is taken on empty stomach with the Metafolin (L-methylfolate) only if a person doesn’t have anxiety,, the repsonse rate for deficiency goes up to 95%. Skin problems, behavoral and emotional and neurological symptoms, sleep disorders, all show up before fatigue which shows up only after a severe worsening of symtpoms. Fatigue is a late arrival. Longitudinal ridges in the nails can be casued by methylation and cell reproduction turning on and off and can happen with stree and illness that put a big demand on the body. My partner developed deep ridges in her big toe toenails from a 2 week international trip that exhausted her and nearly fainted during a performance.
Hi Fredd, i have found ur articles on B12 very informing and helpful i have 3 monthly injections of B12 I do not know my levels as i have never asked, i was recently put on Folic acid tablet, which i have always thought were given to woman trying to conceive or pregnant, i also take vitamin D with calcuim. I still feel very tired to the point where i cud go back to bed after only getting up from bed although i never stay asleep all night . I feel at the moment i am in pain all the time my legs and back and sometimes i cant even dry my hair properly and my arm hurt holding the hairdryer . I also suffer with dizzy spel.s I also have IBS which ive had for years i am due to go back to my doctor I have two sons one has diagnoised autism he is 20 the other one has adhd can u please give me any suggestions that i cud give to my doctor as i feel im just not feeling any better
So what are the common signs of B12 deficiency?
I’m NOT in any of the high-risk groups listed in the article. I don’t consume alcohol other than the occasional sip of wine or beer. I’ve never had surgery. I’ve never been a vegetarian or vegan.
At 30, I’m generally healthy and haven’t got sick for a few years, even though our family has moved from one country to the next with a young child. I stay at home and work hard from morning to midnight taking care of my child, homeschooling her, making homemade food (we eat pretty much the WAPF way), reading up on various health and education topics, and working on an online certificate medicine-related program. What I mean is that I’m in general good health and don’t lack energy an my mind works pretty well. I also don’t have chronic depression.
The only thing that makes me suspect I may be deficient in B12 is my *slightly* ridged fingernails and the fact that only 5 out of my 10 fingers have “moons” on them. I came across a whole website when someone with experience in B12 deficiency said that those are signs. He also said that blood tests are sometimes inaccurate.
So what should I do? I suspect that if I were indeed B12 deficient, it is something genetic, since my mom, dad and younger brother don’t have those moons on all of their fingers as well. My mom and dad’s fingernails are also a bit ridged. My husband, in contrast, has perfect moons on all of his fingers. My 3YO daughter is like me, and that worries me, but her naturopath told me one of the first signs of B12 deficiency would be lack of energy, and that’s NO WAY true in her case.
Any thoughts or advice would be very much appreciated!
Thanks, again, Fredd. I apologize is this is a stupid question but why would/should I supplement if my levels are already high?
Because youy have symptoms indicating such I would presume. The reasons that brought you to posting at a place like this. In studies on treating peripheral neuropathy with MeCbl the averagle person receiving treatment started witjh over 700pg/ml and the highest persons receiving effective treatment started at over 1500pg/ml. More than 60% of those receiving benefit from treatment would not have qualified by any test results. They were all admitted by symptoms. As much research says, the only definative test is a trial of the b12.
Thanks for the input, Fredd! You got a little too technical for me at the end though 🙂
My level was 1359 so I guess it wasn’t THAT high. Boy, I thought I had been doing the right thing, supplementing with brewer’s yeast – that is, until I found this website/podcast.
I have a return appt. with the doc coming up so I’ll ask her to repeat my labs. Is there anything else I should ask her to test? Labs in the past have been pretty good although my white blood count, iron, Vit D and thyroid tests tend to run on the low normal side.
Thanks again!
Hi Jessie,
No need to repeat the tests. A simple trial will tell you if these things can help you. After 6 months on the b12s and stuff then the tests cou;d be run again to see differnces but you don;t need any b12 tests as you will be fully adequate and they won’t tell you anything. They are expensive. Some docs actutally say stop taking it at 900 pg/ml but there is no “too high” if you are supplementing. That would stop healing. Good luck.
Here is a place to order: http://www.pureformulas.com (put in coupon code DB15 for an extra 15% off Doctor’s Best or NEXT10 for extra 10% off your order. You get free shipping automatic)
Best L-Carnitine Fumarate 12.50
855 mg 60 Veggie Capsules
Best Alpha-Lipoic Acid 25.00
600 180 Veggie Capsules
B-Complex Plus (with 30.90
Metafolin L-5-MTHF) 120
Vegetable Capsules
Enjoy!
My latest bloodtests revealed a very HIGH level of B12. I’ve been a vegetarian (I do eat lots of egg whites) for nearly 20 years, although I did try eating meat for 1 year recently. I figured the high level was due to brewer’s yeast supplementation (I love that stuff!) and the eggs. Is there a danger w/having levels TOO high?
Hi Jessie, How high is high? Nrmally somebody in your situation would have a b12 serum level under 500pg/ml. A person effectively taking a 1mg sublingual could have an average serum level of over 2000pg/ml. Without supplemntation anythng above 1200pg/ml or so looks supicious. If yours is a 5000pg/ml for instance, that could indicate liver damage. When the liver is damaged it leaks a lot of b12 into serum. It is something to check out with a doctor. As the liver collects all the cobalamin it can that isn’t excreted by the kidneys, it injudes plant cobalamins, post detox cobalamins (which can contain detoxed metals that would normally exit via the bile) rather than useful cobalamins. A daily average level with 10mg of sublingual daily, might be 6000pg/ml. Brewers yeast has no useful cobalamins. Sometimes it is spiked with CyCbl which if absorbed every day mighrt succeed in keeping your serum level above 300pg/ml. If taking a suitable mix of AdoCbl and MeCbl barring CNS provlems, 15,000pg/ml more or less might be a level without any significant b12 insufficiency symptoms. Good luck.
I just found this site and Thank You. MY B12 levels have always been 200-220. Very Low Normal. Doc put me on 1ml shots bi monthly. Group Health Insurance paid for twice a year testing. Now, that I am 65 and on Medicare and a great supplement, doctor ordered a B12 serum test at Quest and Medicare would not pay for B12 testing. BUMMER! Now, Quest Labs want the $115.00 they charge for this test. They will not work with me on paying them the amount that Medicare would of paid them had it been allowed. (discounted price) So, is there anyone on this forum that is in the same/similar boat and knows where I can get B12 testing cheaper than Quest Laboratories. I am a Cardiac patient plus have malabsorbtion syndrome and need these testings. I hate being on Medicare because they call the shots what is allowed and what is not. (This is why many doctors are not taking Medicare Patients any longer) Very scary. Thank You.
@Fred
Hi Fred !
i have a question regarding Adb12, since i have started taking Mb12 and Metafolin about 3 weeks now and i just added Adb12 i am wondering:
– I keep hearing about people feeling really energetic, is that how it’s supposed to feel like cause i took one pill 8,6 mg of Source Naturals Dibencozide and don’t really feel anything drastic.
– Does that man i need to take larger doses or it could get dangerous ?
– I have been taking 10 mg of Mb12 i have changed to Enzymatic Fusion for about a week, before that i was taking the same amount of Jarrow however i got very strong tingling sensation on the Jarrow brand, however i don’t really feel that with Enzymatic Fusion, could it be that my body has gotten used to the dose and i can raise it? since i don’t feel any Neurological improvement (the numbness is very much present and uncomfortable at all times)
– I have bought a bottle of Potassium Citrate, is it the right kind and should i start taking it ?
– And i JUST realized that my Magnesium is Magnesium Lactate which isn’t absorbed well. Do i still need to take Magnesium supplement ? (so i order them asap)
Thank you and sorry for bothering you so much
Hi Jasmine, The cofactor of AdoCbl that can stop almost everything from happening when deficient is L-carnitne fumarate (Jarrow, Drs Best both made by Sigma Tau). For the Anabol capsule I empty out along my lower lip and gum and hold it for 2 hours there. I use a 1/4-1/3 capsule worth at a time for best absorbtion. For neurological healing AMOUNT is critical. You may have been getting much better penetration of the tissues with the higher amount. Also the Jarrow disolved more slowly. You might have been absorbing as much as 3mg from 10mg. Try more and hold as long as pissible. Right now the most effective mix I have found is DOSE-1 as 10mg of Enzymatic Therapy AND 3mg of Anabol Dibenvoplex held for 2 hours together. DOSE-2 as 10mg of enzymatic Therapy. DOSE 3 as 5mg of Enzymatic Therapy and 40mg of Kirtland. That gives me an adequate push of b12 o9nto the CSF/CNS to heal the spinal nerves. The effect you mention, difference in 10mg and 1mg, appears to indicate spinal fluid is being better penetrated. I take at least 4000mcg of Metafolin before each b12 dose as it aids retention in the body and possibly transport. Timing can make all the difference in the world. Also, the carnitine. If these don’t get things going, there is another layer of supplements that might kick it off. I get an email when you respond so try try try. I had to do all sorts of titration trials to optimize things for me. Follow the clues, whatever increases the tingling and brightening of mood and energixed. I suggest startinbg the carnitone with half a 125mg cap or going with the liquid. If you have anxiety as a chronic symptoms get the Jarrow liquid l-carnitine and do a microtitration starting at 100mcg. Just ask how.
Hi Fred !
unfortunately i haven’t been able to buy L-carnitne yet but i am definitely going to do it asap (obviously i am missing out some things without it). I binged on a lot of chocolate everyday since last summer and as my numbness got worse my habit got worse as well and i read Homocysteine levels can raise that way.
Since i started the protocol i can use my left hand (i couldn’t even pick up my plates with the left hand) a bit more without the awful nerve pain. However the horrible numbness/paresthesias that has covered all of my body is very much present. based on your recommendation about the “paradoxial folate deficiency” so far i have raised my metafolin to 2400 mcg and i get slightly more tingilng than before. i only kept the Mb12 for an hour but for 2 days i am doing my best to make it last 2 hrs and i get a strong headache at the end of it which i’m putting it as a good sign.
– The fact that my numbness isn’t improving or my tinglings are very limited, is it because i haven’t reached the equilibrium stage ?
so far what i take per day goes like: Source Naturals Dibencozide (8.6 mg), Enzymatic infusion B12 (15 mg), Potssium Citrate (99 mg), Source natural Zinc (50 mg), Omega 3 (2400 mg), Biocare B-Plex (1 tablet), Vitamin D
-i tried to take Vitamin E as it was one of the basic vitamins to take but it made me really nauseous and sick so i wasn’t sure if i should continue taking it, how do i know if i really need to take Vitamin E ? I’m also not so sure about Zinc either, it doesn’t make me feel sick but i read people talking about it’s relation with Copper and it freaked me out.
– I never took any supplements with Folic/ Folonic acid, would it be possible that i have “paradoxial folate deficiency” even though i never took anything with Folic acid? my diet was and still is very high in vegetables, do i need to limit them ?
– And what is “Anabol Dibenvoplex” ? is it a different form of B12?
Hi Jasmine,
Anabol Dibencoplex is a brand of AdoCbl,(Some say more effective, some say similar to Source Natural Dibencozide) the other half of the b12 equation. They are both 10mg. Don’t let that bizarre 8.6mg becasue of masss of Cyanocobalamin, be your measure, They are each 10mg of AdoCbl. It is for energy and healing. Vit E is one of those essential vitamins. Most of the vitamins need to be taken with a meal or they cause stomach upset. You may bneed a lot more potassium. Many people need 20-30 tablets a day when healing has an intense startup. Stomach ache can be a symprtom of an induce deficiency of potassium.or of metafolin. See the listing of the symptkms above .A multimineral is a good idea so you get all the little things like copper. Selenium 200mcg helps deal with mercury by combining with it. Folate insufficiency can can occur from 200mcg of Metafolin which isn’t enoiugh to keep all the healing going that it starts. Vegetable folate can cause the paradoxical folate deficiencies in some peo[le. Don’t worry about it. If you do have it, it will become appraent as you continue. GOod luck.
HI Jasmine,
Using sublingually 5mg sublingual can easily equal a 1mg injection, the typical size. However Greg makes agood point. More can help bring up up to a satisfactory level more quickly. However, the purpose is to get healing going and a more balanced approach with the other 3 essentials and awareness of the induced deficiencies that will happen. So do it intelligently, not like a party drug.
Freddd
Hi Fred,
– Does taking Metafolin raise Serum Folic Acid levels by any chance? Since i’ve started the protocol it seems like that my Folic Acid levels have increased! Should i be concerned about that?
– My startup effects have been very minor and i’m worried about that, i get a slight tingling here and there, got headaches when i started to keep the Adb12 and Mb12 for 2 hrs, and muscle spasms. However now it feels like i’m not even getting that much effect from my 10mg Enzymatic, 10mg Adb12, 400mg Potassium and 1600-3200 MCG Metafolin (+ all essential vitamins).
Seems like i’ve hit a plateau and i’m absolutely clueless how to get thinks start working again 🙁
Thank You
The headaches can be from not enough potassium. I have needed potassium between 1200 and 3000mg at various stages of healing. 400 4 times a day may get rid headches and muscle spasms. When you get these corrected then we can see what is next. My first clues are muscle spasms in my thight or occasionally calf or foot, screamingly intense in the middle of the night when relaxed. After all these thing get balanced out then we look at what isn’t being affected and take the next steps. A lot of healing happens over about a year and can continue for 5 or more years. It’s a matter of finding what else is needed. After the headaches amn spasms get taken care of then more healing can happen. Be In Good Health.
Hi Fredd,
I see ! thank you for the explanation,
could you please let me know what you think about the increased blood folic acid level?
Does it affect the B12 absorption?
Hi Jasmine, the energy boost that most people have is really following VB12 shots. In Europe and many parts of S. America they shoot up Adenosylcobalamin as an energy boost, almost like a party drug. The reason that you probably are not getting this is because oral tablets only get a tiny amount of VB12 across at any one time, so it is not enough to raise your serum levels by any significant amount once you are vitamin B12 deficient. They are OK if you have normal uptake to maintain levels but our calculations show that they are not enough to significantly raise your levels and certainly not enough to give you the energy boost. For that reason we have developed a rub-on lotion containing vitamin B12 in it. We have received wonderful responses from the few people that have tried it, who report getting the energy boost. The advantage with the rub-on lotion is that once the material has penetrated into the skin it persists for hours and hours and allows your body to start loading up on the vitamin B12. Preferably you should still keep applying the material daily until your levels reach normal (which should be above 300 pmol/L).
You can find out further about deficiency states on a complementary web-site to that of Chris’ at
http://www.mentorconsulting.net/VB12Home.htm
I have worked on the uptake of VB12 for many many years, and our data definitely suggests that whilst you can maintain levels with oral supplements it is almost impossible to restore your levels to normal with them. Your situation with metformin makes it even harder. It is one of the diabolical problems with metformin use that is generally not told to patients who start taking the drug. There are so many serious problems with long term vitamin B12 deficiency that you should get it sorted out ASAP.
I was diagnosed over 5 years ago, to this day I have to give myself the weekly injections 1mg of Cyanocobalamin B12 along with a daily supplement of sublingual 1000 to 5000 mg of methylcobalamin with folate, an supplement Iron, and a good multivitamin.
Just a few months ago my these are current results.
Component My Value Standard Range Units
VITAMIN B12 630 254 – 1320 pg/mL
METHYLMALONIC ACID: 138 87 – 318 nmol/L
I am still, knock on wood, thanking God and for the most wonderful nurse in the world for giving me my life BACK!
I have come along way and wish more people might consider, “Thinking Outside the Box”. Not the answer for all, might help many. A link to my story below, no seen in all of the US and over 76 Country’s.
http://www.youtube.com/watch?v=CH-N3ktF25g
Hello Chris,
I have Crohns Disease (Ileal Terminal). I had some blood tests and my gastro told me I was iron deficient. I’m not suprised.
I pushed a bit to have my B12 tested. She prescribed a blood test for B12 and Folate, but obviously without testing homocysteine. Does it make sense to do the blodd test for B12 only ?
Thanks a lot
Current age: 48
Cholecystectomy @ age 24 while 6 months pregnant with first child
Total Hysterectomy @ age 29
Hypo thyroid diagnosis 21 years ago (oddly after a very significant and quick weight loss)
Hashimotos diagnosis 10 years ago
Multi modular goiter, thyroid cancer & total thyroidectomy (2 parathyroids lost as well) 3.5 years ago
B12 deficient:
req’d injection weekly for past 3 years, I did not respond or absorb well sublingual or “pills” level finally “up” just inside of normal. Insurance will now not cover injections….
Vit D deficient for past year. 2,000 units a day
Numbness tingling right side ruling out MS…right now not sure what or why possibly due to the herniations both neck and lower back, disc degenerative disease (going on 12 years now). (2 serious car accidents 1995 & 1999)
Hospitalized Dec 2011 13 days with double pneumo Took me better part of 2012 to recover.
TSH/T3/T4 levels still failing to level….either extreme hypo or hyper. Doc wants me in “hyper” range due to cancer (?). Bloodwork every 90 days. Meds adjusted to levels and symptoms. Synthroid 175 with cytomel 5 every other day. Exhausted but can’t sleep.
Borderline “pre diabetic” tho #’s better since coming off all the prednisone, inhalers etc.
(Hospitalized) Diverticulitis 2008 & 2010 – “IBS” diagnosis for as long as I can remember
Eat this don’t eat that…..take this don’t take that…
My body, my system is so significantly out of whack…… Trying to find balance or some way to help myself.
Lack of energy despite “hyper” attempted state, digestive upset, insomnia, skin, nails, hair dry dry dry.
Excessive pain…muscle/joints
Burning, tingling, numb sensation that seems to come and go
Also seem to pick up every bug my 5 kids (and friends) walk into the house with.
Is this, could this, be all related?
Sincerely,
Lost, tired and bewildered
Hi Christine,
Yes, these can all be related to the complex of vitamins, the Deadlock Quartet. These are four fundamental nutrients deficiencies that together can cause symptoms in every system of the body of the type you describe, ALL of them and then another few hundred.
Use the correct brands of the MeCbl, AdoCbl, L-carnitine fumarate and L-methylfolate (and potassium), with the usual A, D, C, E , magnesium, omega3 oils etc and you would have a good chance to be substantially healed in a year. Read my posts to Jasmine above yours to see the details. Good luck
I wanted to make one comment, SOme people still in the active phase of Hashimotot’s thyroiditits havehad it stabilize or reverse with these nutrients. Howver, they also mistake the startup of methylation and of ATP as increased thyroid activity. The b12./folate changes happen fast on startup. Thyroid hormone levels change slowly. Trying to “even it out” on a daily basis doesn’t work and just confuses your body.
Hi Freddd
I find it very difficult to comprehend large amounts of information at once. I’m very interested in following your protocol and have attempted to sign up to Phoenix Rising. Would you please help me? I don’t seem to have permission to post or do anything.
Hi Jayjay,
You have to get a name and password account. Then you can post. The first handful of posts go through a moderation process making sure you are not a spammer and can take a day or two to appear. Also, if you click on a persons name, instead of taking you to messaging it tells you that you are not authorized to edit that page (the persons profile). I hope that helps. Tell your story one place or another that looks appropriate. And then wait for the moderators get to it.m Good luck.
Hello!
I really think i need some outside opinion on my case, so please bare with me.
Starting last last year around this time i got numb tips of fingers within few months it became my pinkies and the side of my arms which led to numb big toes. apparently in May 2011 i was diagnosed with Low b12 based only on Serum test (however no one mentioned the importance to me and was left untreated). I have suffered from fatigue for as long as i remember, and had nerve pain in my left arm which hasn’t appeared for about a month now, my skin looks yellowish and doesn’t have a healthy glow, have a hard time functioning with my left hand, struggle with depression and anxiety.
On October 2012 my numbness started spreading much faster than before…i can say most of my body has decreased touch sensation (i can however feel pain and temperature just fine).
few days ago the stronger numbness reached my toes to buttocks, and most of my arm as well as most of my face is quite numb. i do feel weaker however apparently my power hasn’t been affected. the blood test i did on Oct 2012 showed very low vitamin D it was 22 nmol/L , i’ve been border line Iron deficient but my B12 seemed fine…which i started questioning after researching online.
I have upped my Mb12 to 10 mg per day so far i take Metafolin as well as Vit D3, E, Omega 3, Zinc, and Bio Care B-plex. I have avoided animal products, specially red meat for the most part for the past 5 years or so, i also suffer from IBS and the low B12 only showed up when i was at my worst.
My numbness didn’t stop spreading after taking the Mb12 which i started about 2 weeks ago which is freaking me out. However i do get tinglings all over as well as muscle spasms everywhere.
My MRI came out clean and my douchy neurologist told me that what i have will get better on it’s own, but it’s not and it’s getting worse by the day.
My question is have you guys seen someone who had progressive numbness caused by B12 deficiency ? The reason is that all the cases I’ve read about has been about numbness only in hands or feet, or just patchy areas that didn’t progress. This is really worrying me and i would like to know if i should see more neurologists?
and if it is B12 deficiency that has caused this, does it take some time before the numbness stops spreading?
sorry about the long post
thanks a lot in advance
Jasmine,
Did you get a chance to watch the video in the post one or two posts above yours? I think they had people with progressive numbness in it. I would watch it. Also, I have IBS and I have found great relief following a paleo diet.
i see…no i had missed it, i will defiantly watch it though !!
honestly for the past few months i have felt like an insane person, my neurologist told me don’t worry you are not paralyzed yet, and my GP said everything MIGHT BE low vitamin D.
But i know it has to be more to it than that and i’m assuming that my Low B12 from 2011 and perhaps maybe even before that was never treated considering i don’t consume that much animal products and never supplemented either.
just knowing that the progressive numbness is a Vitamin B12 deficiency it would give me hope and maybe i will stop feeling absolutely insane thanks to my doctors and people around me.
Jasmine, if you are still having problems with IBS after starting b12 treatment then maybe you would do well to have your stomach acid level checked – You will see mention of this in the video. If you have low stomach acid or no stomach acid (hypochlorhydria) then you cannot absorb many things properly, calcium and b12 being just two. The test in the UK is a salivary test (I don’t know where you are) by Acumen Labs and it’s called the VEGF. You also tend to find people with low stomach acid also have a problem converting D3.
Kaytee is absolutely right. I have low stomach acid and I sometimes take HCL. I have been diagnosed with malabsorption. I highly recommend reading Practical Paleo – even if you don’t want to follow the paleo diet, the first 150 pages or so is all about digestion, leaky gut and absorption and is a good read to learn about all this. My vitamin D was 11 and my B12 was 222 when I was diagnosed. I now take 10000IU vitamin D liquid (D3! not D2) daily and get B12 shots biweekly. If you want to chat privately about all this I would be happy to.
I too do B12 shots biweekly — do you give them to yourself? And I was wondering if you monitor your B12 levels once you are on the shots — I haven’t had my levels tested since I started a year ago, and was wondering if it’s a good idea (although since mine seems to be pernicious anemia, I might be on them for a very long time……). Shots make a huge difference for me (methyl B) and my D is way better than when I started (started at 40, now in the 70s). I too have numbness in my left pinky and fingers, but was never sure if it was the B12 or something in my neck…..still figuring that out, but good to know it might be a B12 issue too.
Hi Felicia,
No, my husband gives them to me. I could probably give them to myself in the thigh I guess but DH is a great shot-giver. Where do you get your methyl shots? So far I cannot find a compounding pharmacy and I have been using cyano. I get my levels drawn once every three months. I too seem to have pernicious anemia. My diagnosis was at 222, I took shots once a week for a month, then once every other week for a month and I was up in the 600s, but then she put me at once a month and I went down, so now I just do every other week as a sort of compromise. I cannot seem to get my D above the 50s though. UGH. What brand are you taking?
Mary, I get the methyl through my naturopath, who orders it from a pharmacy in Washington State (I’m in CO). And I do them in my thighs, which took awhile to get used to, but are easy now. Do you go to a naturopath or another practitioner? They didn’t actually test my actual B12 levels but other levels in my blood — and so based on that I started a trial of B12 and haven’t stopped because the results have been so great (energy mostly). Not sure what helped the D — maybe because I was taking fish oil too, but I know I was taking D as well (not as much now). It took awhile for the levels to get up there. I currently take Carlsons drops but I was taking something more potent before.
I live in Sweden, Actually *knock on wood* my IBS issues have subsided for a while now (my B12 showed up low on the serum test when i was at my worst) since a while back i went on an intense Candida diet which i don’t follow anymore. However the numbness is the symptom that is bothering me the most and the fact that it has started spreading so fast concerns me.
I’ve done a lot of research online and somehow hasn’t find a case that mentions progressive numbness. knowing that i’m not alone would give me some reassurance that i’m on the right path.
Well, even if the numbness wasn’t related, which it surely IS, you have to get those b12 and vitamin D numbers addressed.
Sorry if my question seems very obvious but i’m geniuinly wondering, It probably has taken me a long time to get to this stage (the initial numbness started around spring 2012).
Am i being unrealistic to expect a change anytime soon ? Or should i give it a few months on high doses of Vitamin B12?
(how can i reach you since you mentioned chatting?)
Hi Jasmine,
My case was both peripheral neuropathy and the central form, Subacute combined degeneration. I have regained a lot of neurological function, can feel most of my feet, have decent balance. At one point I was falling and close to a wheel chair. That is why tjhe BRANDs mentioned are so critical. They are the only ones that so far are predictable at this present time. Good luck. You may have to order from the USA.
Jasmine,
You sound like you have paradoxical folate deficiency. Perhaps there is folic acid or folinic acid in the bioplex b-complex or some other supplement(s). You need to be on the 5 star MeCbl, Enzymatic Therapy B12 infusion. and hold it for 2 hours under your lip. You need as much absorbtion as possible. 10mg of ENZY could produce 3mg absorbed in 2 hours, having a superior effect to most injections of that size. Also, you may need to titrate the L-methylfolate until the folate deficiency symptoms go away. Also, for full effectivenss you will need AdoCbl (the mitochondria b12 , allows tissues to be made and makes ATP for energy) and L-carntine fumarate, with microtitration if you have anxiety. Those 4, the Deadlock Quartet, turn on multiple levels of healing with very great success. Potassium needs to be titrated by effect and it may trade back and forth between potassium and l-methylfolate until an equilibrium is reached with all the needs for bboth satisfied. The combination of the 5 star AdoCbl and MeCbl, the other two of the Quartet, potassium, zinc, D etc, also needs 2000mg of active components Omega3 oils.
Also, folic acid, folinic acid, glutathione, NAC and Whey need to be avoided. They can cause problems such that the nerves will be further damaged instead of healing.
Hi Fred !!
i have been following your protocol and so far i’m waiting for my Adb12 and Potassium package to arrive. I would however like to ask you some things that has made me confused.
-so far i was taking 10mg of Jarrow just because i couldn’t return them but now that i am switching to Enzymatic Therapy B12 do i still need to go up to 50 mg per day?
-how do you know that you have reached equilibrium? is it when you don’t have any unpleasant symptoms anymore?
-is there a limit for both Potassium and Metafolin that would make it dangerous (i’m assuming it’s the same as l-methylfolat?) ?
Thank you so much…all this info means a world to me
Hi Jasmine,
Unfortunately the Jarrow ceased being effective at some batch change point about a year ago. Unfortunately for me it wasn’t fully apparant till I had a relapse in August. At 5mg a day after you add the AdoCbl and titrate the potassium as needed with the Metafolin, and sometims the potassium and Metafolin alternate for a few rounds of adjustments. Then the l-carnitine fumarate needs to be added in. With Omega3 oils etc a lot of healing can happen on 5 levels and maybe 6. The 6th is the CSF/CNS level and if there is a problem getting enough into your CNS for healing, then a 50mg continuous dose of ENZY over 4 hours or so will be a real eye-opener. Each time you notice an effect in the CNS from that you are not yet at equilibrium. A 50mg dose of AdoCbl can also be tried. Because that lasts ever so much longer in the mitochondria you may find that you only need to repeat that one once a month to maintain CNS AdoCbl equilibrium. As long as a 50mg does causes a noticable change, you are not maintaining equilibrium. Some people need that dose once and some need it 3 times a day for healing, less for maitenance. Typical levels of Metafolin for adequacy (no folate insufficiency symptoms) are 800-2400mcg for those with no paradoxical folate deficiency, 6000-8000mcg for folic acid only paradoxical folate deficiency, and 12,000-30,000 mcg of Metafolin (Deplin at 15mg) for folinic acid-vegetable folate paradoxical folate deficiency. The ammount of supplemental potassium is achieved by titrating to effect, usually 2000-3000mg above dietary intake daily for somebody with widespread healing. Equilibrium is reached when the 50mg doses doesn’ty repeat immediate effects and the nerves heal 24 hrs per day. Body equilibrium is reached when a 5mg larger dose makes no noticable difference. MeCbl and HyCbl each have their own body equilibrium and their own CNS equilibrium, 4 possibilities in all.
wow…thank you so much, that helps a lot and clears up so many of my questions!
i have been reading a lot of posts on Phoenix Rising and one thing i’m not so sure of is
– what kind of signs or symptoms should i be looking out for while titrating Metafolin and Potassium? i’m imagining it can’t be too subtle?
– is there a specific l-carnitine fumarate brand that you would recommend or any of them work just fine?
Hi Jasmine,
L-carnitine fumarate, Jarrow or Drs Best. Both are made by Sigma Tau in Italy. I would expect other brands of Sigma Tau would work. Also the Jarrow liquid freebase carnitine works well. The capsules are fine for most with a titration starting at 62.5mg (1/4 of a 250mg capsule. If you have anxiety, “Tolerance withdrawal” from benzos, panic attacks, go with the liquid form and microtitrate. Start at 100mcg. That is put 1 drop into a small container. Add 100 drops of water (there is a conversion to CC or teaspoon) and take 1 drop of the diluted solution 3 times a day on empty stomach. Keep in refrigerator until after third dose of day then discard. Increase by 1 drop a day until it becomes too stimulating which converts easily to anxiety and worse for some people who tend to anxiety. It’s how the brain is wired and affected. After you get up to 3 drops 3x per day you can drop to 33 drops to 1 and mover back down to 1 drop. Again, you can keep increasing by 1 drop per day. It’s proportional. When you get to drops per dose, you can increase by 1/3 to 1/6 per day usually with no noticable effect until you reach a threshold of effectivess, then slow down. Each drop from the stock bottle is 3.3mg, 3300mcg. Eventually you work up to the 66mg or so daily dose you can switch to capsule powder. At that point 1 dose a day is usually sufficient without problems.
The effects of low potassium and Metafolin ARE NOT SUBTLE. I will post those in a separate post coming up.
1 – Low potassium, almost everybody when healing starts. – often called “detox”
2 – Low folate symptoms even with small doses of Metafolin – often called “detox”
3 – Nervous system activation, everything is perceived as more intense – often called “detox”
4 – ATP activation, everything is more energetic and intense – often called “detox”
Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with cyanocobalamin it is very common with methylb12 and adensosylb12 and less so with hydroxycobalamin..
IBS – Steady constipation , Nausea, Vomiting, Paralyzed Ileum, Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness, Abnormal heart rhythms (dysrhythmias), Increased pulse rate, Increased blood pressure, Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.
Group 2a – Both
IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Group 2b – Either or both
Headache, Increased malaise, Fatigue
Group 3 – Induced and/or Paradoxical Folate deficiency or insufficiency
IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract, increased hypersensitive responses , Skin rashes, Increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips, Angular Cheilitis, Canker sores, Coated tongue, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, Increase irritability, Loss of reflexes, Fevers, Old symptoms returning, Heart palpitations, Bleeding easily.
Group 4 – Hydroxycbl onset, degraded methylcbl onset, methylcbl after photolytic breakdown onset.
Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
Wow !!! yeah i would say that is not subtle at all
i could be over thinking all this but:
– you mentioned that “At 5mg a day after you add the AdoCbl and titrate the potassium as needed with the Metafolin” does that mean after i added those two then i start raising the Mb12 slowly until i reach 50 mg per day, then raise metafolin and potassium after i’m at 50mg of Mb12 ?
– Since the Enzymatic Therapy B12 only comes in the form of 1mg pills do i need to take 50 a day? Or is there any other brand that i could add to the mix since Enzymatic Therapy has only 30 pills in a bottle?
– considering how my case sounds like “paradoxical folate deficiency” (if i understood correctly) i would need 12,000-30,000 mcg of Metafolin, did i get it right?
Once again hank you so much for your help and sorry that i keep coming up with random questions
Hi Jasmine,
Most folks reach body equilibrium of MeCbl with 5-15 mg daily sublingual dose (1-3mg injected). Most folks, reach body equilibrium of AdoCbl at 2.5mg daily to 2.5mg once a week. On one occasion, as a test, try 50 of the Enzymatic Therapy. These are extensively validated in use by thousands. I am trialing a new brands that might be quite satisfactory. Right now I am doing a month long qualitative test of it. In a month frpm now there may be a 5mg dose in a brand I can suggest. It is important to know if you have a CNS problem that takes more B12 to penetrate into the CSF. Another brand that isn’t as effective could cause a false negative response. In some people folic acid can’t be converted to L-methylfolate. In some people neither folic acid nor natural veggie folate can be converted to L-methylfolate. These unconverted oxidized folates can block 10 to 20 times as much methylfolate from being effective. In the Deplin studies (prescription strength Metafolin) 15 and 30 mg were the most effective doses for depression which is a folate and B12 deficiency symptom. Things like IBS and angular cheilitis, canker sores, acne type lesions in adults and things like that as well as mood and other problems are often indicators of paradoxical folate deficiency. Basically you can measure “high” but with ineffective folates that compete with and block l-methyfolate. However, until titrating up you don’t know if you have folate insufficiency which can happen with even pure l-methylfolate, just not enough, or folic acid paradoxical folate deficiency or folic/folinic acid paradoxical folate deficiency. That will only define as you progress.
Hi Fred !
(i didn’t have the reply option anymore so i had to make a new conversation)
I see…it does make sense how it’s different for everyone to need different levels and i have a feeling i’m one of those who need high doses.
If by any chance i would want to raise it up more than 15mg, is it wise to take all of it at once ? since i keep hearing about the empty stomach thing.
if i spread them throughout the day my stomach will not be empty, does that mean the Mb12 won’t be absorbed as well ?
Thank you once again
Hi Jasmine,
As the MeCb;l; and AdoCbl are absorbed through the oral mucosa what is in your stomach desn’t make any difference. I take 4000mcg of l-methylfolate on rising, 4000mcg with each of 2 meals and 4000mcg at bedtime. It takes divided doses to work well. Only the l-carnitine (and thyroid meds, SAM-e and a few others) needs to be taken on an empty stomach or else it is digested and gone. The l-methylfolate is well absorbed with and without food. It needs to compete with the folic acid (white flour foods, and maybe vegetable folates) while being digested and ansorbed. Two doses per day might cause a need for twice as much. I get by on 16mg a day with timing. 30mg would probably be needed for twice a day dosing. Timing can be critical and save quite a bit of money.
Hello! Is there an optimal goal for B12 levels? Is there a point that you would not want to exceed? We take a supplement called Cardio B (B6 50mg, Folic Acid 5mg, B12 1mg per capsule once per day) and also a multi with B. My level is 958 and my husband’s is 1295 (results are eight months old). Thank you very much for any guidance you can provide, maryann
New video about b12 deficiency. Please put it anywhere you can think of. Hope you don’t mind Chris?
Thank you Kaytee! I’m sharing this on FB.
I have a question in response to this thread about the sublingual B12 vs. injections — what about the other ingredients in sublinguals? The Enzymatic Therapy B12 infusion mentioned here has both fructose and mannitol added to it, so can that also be an issue for people who are sensitive? I do methyl injections twice a week for now (for pernicious anemia), they seem to work great (did them daily when I started with this), and I get the B12 through my naturopath and a compounding pharmacy (and also I worked closely with her through the process). My energy and blood work have been significantly better with the addition of injections, but I’m always open to other avenues. I also have blood sugar issues and can be very sensitive to flavorings, so that’s why I’m asking about the sublinguals.
Felicia,
THe situation is this. A GOOD methylb12 injection is great. The problem I had was that there was just as much variability of the injectable MeCbl as there were between brands of tablets. Further MeCbl upon very little exposure to light breaks down to HyCbl which gives me and a lot of people acne type lesions on scalp and face and ceases being neurologically effective. I had to inject 10mg 3x per day to maintain my CNS, to keep it from the degeneration of Subacute combined degeneration. I had to wrap the vial in foil and never expose the MeCbl to light. I also wrapped each syringe in foil. It was costing me $400/month for injections that aq lot of the time were worthless for my CNS problems. Not everybody has CNS problems and may not be sensitive to the differences between various batches of MeCbl. The addittion to your program that I would expect will bring your energy all the way up and make it so you don’t feel each injection would be the Anabol Dibencoplex (AdoCbl), the other active b12 for the mitochondria and other purposes. It has no flavoring or sweetening. It is in a capsule of bland filler. For best absorbtion I use about 1/3 capsule at a time under my lower lip. The other two items that complete the Deadlock Quartet are L-methylfolate and l-carnitine fumararte. These 4 have a 4 way interdependency and with all 4 a person can start all 6 layers of healing. Then potassium is needed. These things are about healing ALL the symptoms of these deficiencies, about 400 in all, generally have not just bringing serum level up and correcting red cell size.
Good luck
Thanks, Fredd, I appreciate the response. For me, I have done well on injections for now, along with diet and other factors, so I imagine there is a spectrum of need and responses depending on where someone is health-wise. I appreciate all your research and sharing of information that you have discovered!
I was told, once you start taking the injections, you have to take them for rest of your life. Your body only absorbs what it needs when taken in pill form.The shots affect a feedback mechanism that will prevent you from absorbing and make you deficient.
Carolyn, To borrow a phrase from PULP FICTION, “THEY say too much”. Not a single thing you say is correct, all mythology. A more correct statement is thgat when swallowed or chewed and swallowed, IF a person’s entire actove absorbtion system were working correctly, one can absorb about 10mcg via the active system at a meal or oral dose plus about 1% of total amount as passive absorbtion. So a 1000mcg oral tablet swallowed will provide about 10-30mcg absorbed depending upon the details of the person’s system. When 1000mcg is used sublingually, in the tested 5 star brands of methylb12 and adenosylb12, (MeCbl, AdoCbl) when tested, absorbtion is about 15-25% when held for 45-120 minutes (range 10%-33%). So 5mg of 5 star MeCbl results in 750-1250mcg typically absorbed which is fully equivalent to 1000mcg of MeCbl or AdoCbl as a subcutaneous injection as regards serum levels and effectiveness. It takes about 100mcg absorbed to “turn on healing” in the right circumstances, for almost everybody who is deficent. Oral doses of any kind and injections of CyCbl and HyCbl do not turn on healing except very rarely becasue they are not active and the body can only convert a little under the best of circumstances. Its complicated enough without the mythology. Right now Enzymatic Therapy b12 infusion methylb12 and Anabol Dibencoplex (AdoCbl) are the only two 5 star b12s I know of.
“They” is a Biochemist that stated , once you start taking the injections, you have to take them for rest of your life. Your body only absorbs what it needs when taken in pill form.The shots affect a feedback mechanism that will prevent you from absorbing and make you deficient. I have been searching to see if that was true.
I don’t care if it is a biochemist or anything else. He is WRONG. I have used a mix of injections of MeCbl when I can find any of sufficient quality, which isn’t easy. I have used injecttions for 7 of the past 10 years. Chances are he is also speaking of HyCbl or Cycblo which is the automatic unspecified “b12”. In any case he is wrong and you can easily demonstrate it to yourself if you are response to b12. Now, being able to use b12 at all is dependent upon BOTH forms of b12 being avalable, and L-methylfolate AND L-carnitine fumarate. These 4 make up the deadlock quartet, and without all 4 of them in the body, one or two or three of the others don’t work or not fully. Further for CyCblo, HyCbl, folic acid and folinic acid to even have a chance of being converted to active forms requires the presence of all 4 of the deadlock quartet. I have cured myself of FMS and CFS and manage to hold Subacute Combined Degeneration in check. The thing that is FMS and CFS are both part of a disease group in which people having it for some reason have CNS b12 deficiencies even when the body doesn’t. It takes a much higher serum level to penetrate the CNS. A 30-50mg sublingual dose of a 5 star MeCbl is just as effective as a 7.5mg-12.5mg injection of 5 star MeCbl injected subcutanseously. Injected IM the peak of serum level passes too quickly to be well absorbed into the CNS/CSF so an SC injection can take all day to come into serum and acts as a time release mechanism while maintaining serum level over 100,000pg/ml for a high gradiant diffusion into the CSF/CNS. I have seen these same results replicated over and over. It is highly sensitive to quantity and quality of the b12 but makes no difference how the equivalent dose is prrovided; sublingual or SC injection. There is nothing but the specific pharmacodynamics of the cobalamins at work here. The mechanism you attribute to him doesn’t exist or doesn’t work that way. I’ve spent more than 20,000 hours studying all this in the past 11 years and have it down as a working demonstrable system.
Chris,
You may wish to add that B-12 deficiency is also commonly found in people with Primary Immune deficiencies. As I have a PIDD and my immunologist told me it is common for people with Primary Immunce Deficiencies to have low B-12. I have been receiving it in monthly injections for several years now.
thanks
Fredd- do you know possibly from your own experience or from being active in a number of boards if clorella supplementation could worsen a folate deficiency? would you advise against supplementing with clorella if s/o is doing well with it but has multiple MTHFR mutations?
Michal, I really don’t know. If it has folic acid added to it or folinic acid (veggie folate) it could cause paradoxical folate deficiency in susceptable persons. “Green drinks” can do that. I get in trouble eating too many veggies. I have to be really careful and resist the temptation of “everything from the garden” feasts. I used to be vegetarian and had a 15,000 square foot organic garden before I got too sick (from both those things) to keep it up. Now I have about about 150 linear feet of 3 foot wide raised bed organic garden and have to be very carefull how much I eat from it.
The unexpected items that can cause an induced folate deficiency is whey, NAC and/or glutathione. That includes Cerefolin-NAC.
It is my contention that the entire set of test results concerning b12 and folate is corrupted since the endemic deficiencies of these items now control the range of results considered “normal” and the test reslts no exist to maintain the deficiencies in place because the deficiencies now define the ranges and have become “normal”. I believe that the MTHR polymorphisms do exist but that their meaning is misunderstood becasue of the corruption of all tests having to do with results from folate and b12.