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B12 supplement

chloe2124 profile image
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What's the best b12 supplement? I know methylcobalamin is best as there is cyneid in the other one. All the levels look so high though and gives like 10,000% of daily amount which seems crazy! What's the lowest dose you can get? My b12 is 214 but dr won't treat me so trying to help myself.

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clivealive profile image
clivealiveForum Support

Hi chloe2124 I am not medically qualified but I'm disgusted that your doctor won't give you B12 injections with a level of 214. What symptoms are you presenting? Do you know why your B12 is so low? Do you know if your Folate level is low too?

I think you really should go back to your doctor armed with as much information as you can and insist on treatment before you do any self medication.

Please look at the lists below and note if you can "identify" yourself among them and make a note of them.

On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

On page 11 in the book "Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. under the heading "Types of tests for B12 Deficiency" talking about the Serum Vitamin B12 Test it says:-

However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml). We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml.

The book is well worth while the purchase as is Martyn Cooper's "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" both available via Amazon - and no, I'm not on commission :)

Oh and by the way cyanocobalamin is the one containing cyanide and I've been having injections of that for over 44 years and I'm still "clivealive" at coming up to 75 next week. I think there's more in a cigarette than in my monthly injections

Gambit62 profile image
Gambit62Administrator

It is difficult to say which is the best form of B12 as there are so many factors that control the way B12 is metabolised by individuals and different people find different forms work differently for them. Some people (myself included) find that methyl does very little or even nothing for them.

The cyanide molecule in cyano cobalamin is so tightly bound that it isn't an issue unless you have a specific condition - leber's - that gives you a specific sensitivity to the cyanide molecule - you would also be advised not to smoke as there are small trace amounts of cyanide (from the tabacco processing) in tabacco so unless you are aware of this as a factor in your family that isn't a problem.

Hydroxocobalamin is used to treat cyanide poisoning because it binds really strongly with the cyanide molecule to form cyanocobalamin so, except for the condition mentioned above, cyanocobalamin certainly isn't dangerous.

There are no risk of overdosing from B12 and if you have an absorption problem 100% times would be the smallest amount that you would need to be taking daily in order for the recommended daily amount to get by passive absorption (1% is absorbed outside the ileum) in order to make sure enough stood a chance of getting through. - you would probably need a lot more than that to be sure - so 10,000% really isn't that high in that context - actually it is the right ballpark.

Do you know what your folate levels were? - very easy for these to get depleted when you are treating a B12 deficiency and without folate the body can't process and use B12.

With clivealive on going back to your doctor - take

A. a list of symptoms

bcshguidelines.com/document...

B. this alert from UKNEQAS on the dangers of just assessing B12 deficiency on the basis of test results

ukneqas-haematinics.org.uk/...

C. and, particularly if you are based in the UK, draw your GPs attention to the BCSH guidelines - summary on treating regardless of range if clinical position shows neurological symptoms - and also the treatment regimes on p8

bcshguidelines.com/document...

fbirder profile image
fbirder in reply to Gambit62

The cyanide moiety isn't irreversibly bound to cobalamin, otherwise cyanocobalamin couldn't be converted to active forms. A cyanide molecule is produced in this conversion.

fbirder profile image
fbirder

Probably the best for injection is hydroxocobalamin. The vast majority of people can easily convert this to the active forms. It is also very stable.

Cyanocobalamin is also easily converted. It is true that this can conversion produces cyanide, however the amount produced is insignificant - about the same as in one-tenth of a glass of prune juice.

If your B12 is low because of an absorption problem then you need much more than the normal dose. If you're talking oral supplements it's thought that less than 1% will actually get absorbed.

chloe2124 profile image
chloe2124

Thanks everyone. I will answer all your questions here. I've had the GPC test and that came back normal, don't have any of the other causes but I am epileptic and take drugs for that which are known to reduce folate. I went to the dr with numbness and tingling in my feet so she ordered blood test. My folate was 3.6 (in the same test my b12 was 241) so was put on 5mg supplement but nothing for b12 as that was normal. 2 weeks after starting that I felt so tired that I could hardly sit up, was off work (even though I work from home!) as I just couldn't function. I was super anxious, numbness worse etc so she repeated the test and then folate was 24 and b12 214 to which they said it's all fine now so can't be b12 related. I googled what else could cause numbness and found magnesium so started spraying oil which appears to have helped the tingling but it's still there. I've had nerve conduction tests in my feet and they have come back normal so need to go back and say "what now?"

Jkay2418 profile image
Jkay2418

i have had great success with methylcobalamin sublingual 5000 mcg 2x daily, made by solgar. i find it works best if i take one early in the day and the second one around 1:00 in the afternoon. i used to get injections, but i feel much better using just the supplements. my doctor originally thought it wouldn't work, but so far all good and i feel really great. i have absorption type pernicious anemia so this is for life, and have been very hapy with results. i know some people like the jarrow but i prefer solgar. i hope this helps. there can be a lot of trial and error until you find the level that works best for you. try not to get too frustrated and trust your instincts!

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