[mrsD]

I am starting this thread to include some of the most useful information on B12.

This subject is very popular now, and especially on these forums.

Having a spot to refer people to answer questions, saves time and effort, since repeating over and over the same information becomes difficult.

I am going to have this thread stickied at the top of the pages here so it can be found easily.

First off, here is a link to Rose's webpage. She has been the anchor for all of us here on this subject. I haven't seen her here lately, but I suspect she reads at least.

http://roseannster.googlepages.com/home

Rose put together a wonderful collection of information and has personal reasons for wanting others to learn about the TRUTH about B12 in the body. She herself suffered for a long time with very low levels and the terrible consquences of that.

I am going to add to this thread, some of the information I've used to answer questions here about how to test for B12 problems, and how to use it correctly.

I encourage all posters who come here to learn and ask questions to participate in this thread. We all learn from each other.

edit:
This is a link to the blood work study done on oral cobalamin and injectable done on patients. It gets buried in this long thread so I am adding it here:

http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4
and this is the full article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2532799/

and this is a link to Dr. C. Snow MD's link on new treatment protocols for B12 deficiency:

http://neurotalk.psychcentral.com/post698522-70.html
this link is post 70 in this thread.

These two additions are easier now to find in this first post.

{Edit 4-8-13:}
today 3-9-14
I had a very good video from YouTube on this portion of this post.... as of today... 3-9-14 it comes up as "private" only on YouTube. So I have removed the link. It was a great video...if it returns, I'll repost it.
edit to post link to the wonderful YouTube which is back there on B12 deficiency 9-21-14:

http://www.youtube.com/watch?v=BvEizypoyO0

1-27-15: With the increasing numbers of posters here getting the DNA testing for MTHFR mutations, here is a very good explanation about some of the polymorphisms that poster janieg has provided:

http://holisticprimarycare.net/topic...disease-puzzle

[mrsD]

This question comes up very frequently.

One has to understand that the research information about B12 has changed radically in the last 10 years. Not all doctors are aware of these changes.

This link, to a physician website, is one good one to start with:
http://www.aafp.org/afp/20030301/979.html
(it can be copied and taken to your own doctor)

It brings up the question of oral vs injectable. (and was put on the net in Mar. 03),

Oral can work well for most people. I should be taken on an empty stomach, because passive absorption is how the B12 is going to be absorbed in the intestine. Drugs given in microgram doses, cannot be absorbed reliably with food/fiber present. The amounts are so small they are lost in the food (like a sponge).
Digoxin and thyroid hormone also are in this category. So since B12 is a microgram nutrient, it should have the same recommendation.

For people with poor stomach acid levels (due to genetics or drugs used), it is estimated that about 10% or less of the B12 is actually absorbed. So the apparent high dose taken orally is not
something to be afraid of. Labels often show %RDA on them and those huge numbers for B12 often frighten patients unnecessarily. (example==66,000 % of RDA etc)

Here are two other research papers showing oral B12 is as effective as injectable:

Am Fam Physician. 2009 Feb 15;79(4):297-300.Links
Evidence for the use of intramuscular injections in outpatient practice.
Shatsky M.

Providence Medical Group, Portland, Oregon, USA. mlsdo2000@comcast.net

There are few studies comparing the outcomes of patients who are treated with oral versus intramuscular antibiotics, corticosteroids, nonsteroidal anti-inflammatory drugs, or vitamin B12. This may lead to confusion about when the intramuscular route is indicated. For example, intramuscular ceftriaxone for Neisseria gonorrhoeae infection and intramuscular penicillin G benzathine for Treponema pallidum infection are the treatments of choice. However, oral antibiotics are the treatment of choice for the outpatient treatment of pneumonia and most other outpatient bacterial infections. Oral corticosteroids are as effective as intramuscular corticosteroids and are well-tolerated by most patients. High daily doses of oral vitamin B12 with ongoing clinical surveillance appear to be as effective as intramuscular treatment. Few data support choosing intramuscular ketorolac over an oral nonsteroidal anti-inflammatory drug unless the patient is unable to tolerate an oral medication. For other indications, the intramuscular route should be considered only when the delivery of a medication must be confirmed, such as when a patient cannot tolerate an oral medication, or when compliance is uncertain.

PMID: 19235496 [PubMed - indexed for MEDLINE]

from http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

and

Fam Pract. 2006 Jun;23(3):279-85. Epub 2006 Apr 3.Click here to read Links
Oral vitamin B12 versus intramuscular vitamin B12 for vitamin B12 deficiency: a systematic review of randomized controlled trials.
Butler CC, Vidal-Alaball J, Cannings-John R, McCaddon A, Hood K, Papaioannou A, Mcdowell I, Goringe A.

Department of General Practice, Cardiff University, Wales, UK.

BACKGROUND: Vitamin B(12) deficiency is common, increasing with age. Most people are treated in primary care with intramuscular vitamin B(12). Several studies have reported equal efficacy of oral administration of vitamin B(12). OBJECTIVES: We set out to identify randomized controlled trial (RCT) evidence for the effectiveness of oral versus intramuscular vitamin B(12) to treat vitamin B(12) deficiency. METHODS: We conducted a systematic review searching databases for relevant RCTs. Outcomes included levels of serum vitamin B(12), total serum homocysteine and methylmalonic acid, haemoglobin and signs and symptoms of vitamin B(12) deficiency. RESULTS: Two RCTs comparing oral with intramuscular administration of vitamin B(12) met our inclusion criteria. The trials recruited a total of 108 participants and followed up 93 of these from 90 days to 4 months. In one of the studies, mean serum vitamin B(12) levels were significantly higher in the oral (643 +/- 328 pg/ml; n = 18) compared with the intramuscular group (306 +/- 118 pg/ml; n = 15) at 2 months (P < 0.001) and 4 months (1005 +/- 595 versus 325 +/- 165 pg/ml; P < 0.0005) and both groups had neurological responses. In the other study, serum vitamin B(12) levels increased significantly in those receiving oral vitamin B(12) and intramuscular vitamin B(12) (P < 0.001). CONCLUSIONS: The evidence derived from these limited studies suggests that 2000 microg doses of oral vitamin B(12) daily and 1000 microg doses initially daily and thereafter weekly and then monthly may be as effective as intramuscular administration in obtaining short-term haematological and neurological responses in vitamin B(12)-deficient patients.

PMID: 16585128 [PubMed - indexed for MEDLINE]

from http://www.ncbi.nlm.nih.gov/sites/en...&term=16585128

I personally don't think sublingual vs oral swallow is much of an issue. I don't believe that sublingual works very well. This form has historically been the favorite OTC version, but B12 is a huge molecule and water soluble and not likely to cross the small area under the tongue in reasonable amounts of time. What really happens is that the sublingual dissolves and the resultant saliva is swallowed. And what can happen is that the tablet kept under the tongue may irritate tissues over time, and cause inflammation in sensitive people or those reactive to flavors or sweeteners. If you want to dissolve your sublingual under the tongue fine, but I don't think you HAVE to.

[mrsD]

Well, if you are reading here and have a need great enough to
end up here looking for answers, logically you probably need
B12.

More and more people are turning up low in this nutrient.
Vegans, who eat a diet devoid of animal protein, need to supplement this. They like to claim that their own bacteria that live in their GI tract will make enough for them, but that often does not turn out to be true. These bacteria may be killed off with antibiotics.

Our liver stores up to 5 years of excess B12 that has been eaten.
And it follows that if you have liver damage, less of this can be relied upon.

Lifestyle today is critical when it comes to B12. The over the counter availability of acid blocking drugs, impairs the utilization of B12. Acid normally breaks up proteins, and makes the B12 available to intrinsic factor which grabs it and facilitates its absorption in the intestine. (nature has developed this strategy because B12 is normally only in foods in tiny microgram amounts.) Previously to the appearance of these drugs, B12 deficiencies were found in people with hereditary errors who cannot make intrinsic factor, or who had their stomach removed completely or partially, or who have autoimmune disease which damaged the cells making intrinsic factor, OR who are getting older and no longer making adequate stomach acid-- called achlorhydria.

Now babies are born deficient (if Mom was on a vegan diet and did not take vitamins) and many in the general population are deficient because they take Zantac or Prilosec daily for years.

Some other drugs also upset B12 levels. One common drug which is no longer available orally here in US is Vioform (clioquinol). This drug was taken off the market in Japan and US for causing blindness and neurological damage. It is still found in creams for treating fungal infections however. But its tragedy in Japan led to aggressive use of B12 in that country, and its more aggressive interpretation of adequate blood levels. So we see Japanese papers using B12 for MS in enormous doses, and we see a higher cut off for "normal" in blood testing there as well.

Other drugs that reduce B12 are:
colchicine
most antibiotics (long term use)
some retroviral drugs for HIV
metformin
birth control pills
acid reducing drugs

One misconception doctors still have is that anemia must be present to have a real deficiency. This has been shown in papers to not be the case. Sometimes one blood test will hint at low B12 before anemia becomes severe, and that is MCV.
But many people can be low and not anemic.

The link I gave in the first post here, suggests various testing
http://www.aafp.org/afp/20030301/979.html
It has a chart suggesting testing and treatment for those at 400 and below.

Testing for MMA, and homocysteine are still considered better indicators than serum B12 levels. Rose's website has far more detail on this subject.

Since B12 has no upper toxic limit set by researchers, one can be flexible in using oral supplements safely.
I think that people very low in testing, need to bring that level up as quickly as possible.
There are 5mg (5000mcg) tablets available orally for about 30 cents a day. Take one of these daily on an empty stomach for 2 to 3 months and get retested. If you show levels above 1000, that is a good start. You can continue with this if you want, and feel you need it. Or you can reduce to 1 or 2 mg a day, thereafter. Most test ranges are not kept up to date, and most labs have a ceiling test of 2000. They will report this as HIGH and some doctors --who are trained to fear anything HIGH-- think this is "bad". There is no evidence anywhere in the research that high serum levels of B12 are harmful in any way.
Should you become ill however, or develop some new symptom, it is best to contact your doctor for evaluation.

I personally think 1mg of B12 daily is enough for most people once they bring up their blood work to normal.

People with MS and Fibro may have to take larger doses for a longer period of time. Research has shown that the fluid called the CSF is low in B12 for these patients. Spinal taps are not routinely given, but for MS patients who have them as diagnostic tools, ask for the B12 measurement when the test is done. Others may be offered a spinal tap, especially in rapidly progressing or long lasting PNs. Ask for the B12 measurement if you have one.

The next post is going to discuss the differences in cyanocobalamin and methylcobalamin, as well as some others.

[mrsD]

Cyanocobalamin is the commercial synthetic form of B12 that was patented more than 40 yrs ago. For many years it was the only one. The body cannot utilize this form of B12 and has to
remove the Cyano portion (cyanide) and methylate it in order for the tissues to use it properly.

For many people cyano versions are adequate. It is the only version most doctors know about. It is in all their reference books, still.

But there are some people who:
1) do not have the genetic capability to methylate folic acid and B12 properly. These people will not improve with cyano version.

2) some people do not have the genetic ability to handle CYANIDE in any form. These patients may react to cyanocobalamin with worsening of symptoms (toxicity).

Luckily we have a very inexpensive oral version of methylcobalamin available without an RX (OTC) which can easily be used. But many doctors don't know it even exists.

1mg orally daily can cost patients about 9 cents a day.
Since it is easy to obtain and so inexpensive why take anything else? Many local stores do not have this yet, but it is very common online. Jarrow, Source Naturals and other reputable makers all have a version. Check out vitacost.com or iherb.com for examples.

There are alternate injectables too. When the cyano information started to become public, another form called hydroxycobalamin was marketed. Some doctors may use this, but it is more expensive. Methylcobalamin injections are available custom ordered at compounding pharmacies. This makes them the most expensive. This methyl version is being used in the Autism community.

Injections are invasive and more expensive, and really do not offer much incentive to ambulatory patients. They are still used for bedridden, or unconscious patients. But their days in the doctor's office are no longer necessary.

For people who really want to spend money on genetic testing, there are tests now that will tell if you are failing to methylate vitamins properly. These tests may not be covered by insurance (most likely not) and cost over $400. They are newly appearing in OTC outlets for less...more like $125. But since the methyl versions of the B12 and folate are available, it is not really absolutely necessary to test DNA at this time.

My observation after years on the net is that if people are having neurological symptoms severe enough and for long enough to appear here, they have some significant problems with their metabolic ability to handle some nutrients. Since these nutrients are now available in the activated forms for very little money, why use something that may not work? If methylcobalamin cost the same as RX cyano or more, I could see trying the cyano first. But the reverse is actually more true, so why bother with cyano at all?

There is another form of activated B12 called coenzymated.
It has another name dibencozide. This one is commonly available from Country Life. Its generic name is adenosylcobalamin and it is active also. But it tends to be more expensive. Some people like it better, and body builders tend to favor it for muscle building etc.
There is also an oral form of hydroxycobalamin. This has been suggested to be used to detoxify cyanide which can occur during acute smoke inhalation. This form is not as easy to find to purchase, is a bit more expensive, but is out there.

The actual chemistry of B12 and folic acid... and the entire methylation chemistry that they are involved with is really complex. I don't think going into it here is necessary for most people.

I can't find a Kegg module for B12... but here is the one for
methylation of folate:
http://www.genome.jp/kegg/pathway/map/map00670.html
Each box is one enzyme that can be affected by a genetic error/failure. The black arrows all come to folic acid to provide a carbon atom for it. Sort of like "all roads lead to Rome".
The methylation of B12 is complex too.
http://books.google.com/books?id=lZw...um=7#PPA122,M1
page 122 of this link gives some details for those who like this stuff

[MelodyL]

Mrs. D.

I read ALL of your posts.

Much appreciated.

Mel

[tinglytoes]

[QUOTE=mrsD;500230]Cyanocobalamin is the commercial synthetic form of B12 that was patented more than 40 yrs ago. For many years it was the only one. The body cannot utilize this form of B12 and has to
remove the Cyano portion (cyanide) and methylate it in order for the tissues to use it properly.


Hi again, GRATITUDE and appreciation for your links and incredible service on this site. I am working my way thru the links and slowly learning what I need to tackle the during next steps in discovery. Seeing local neurologist in couple weeks need a starting point for ruling out what is not happening.

My questions regard nerve fasciculations. Small, subtle, yet very rapid involuntary muscle contractions in my calf muscles. A sort of pulsing which is not painful but disturbing since it mimics larger movements which could happen if I was walking etc... Unable to rest as a result.

I could not find any references in the nutritional info. Or PN stuff. Is it lumped in with RSL and not a separate symptom? I have been diagnosed with CKD, CHF, HCV, Cryoglobulenemia which induced vasculitis, Stroke '03 Treated with interferon alpha a and rituxamab. Currently on 3 anti-hypertensives plus Toursemide, (learned of thiamine deficiency in regard to these). Get monthly b B12 shots for anemia. healthy diet.

Stroke was located in basil ganglia portion of brain, with severe RSL or Parkinsons like tremors as main symptoms. Along with left side partial paralysis. Overcome much of after affects thru sheer stubbornness and refusal to give up. Lately feeling more than a little sick of being my own medical treatment planner without any interest from 12 or more doctors.

What a nightmare. If not for meditation, I would appear as unhealthy as my list is long. Not sure if it is lucky or not actually, since many docs simply make an assessment that I must be crazy or psychosomatic since I look so normal. (Reverse health bigotry is what I call it). Additional challenges on top of everything else to be taken seriously. A common refrain I notice.

Would love some support in my journey a little shy and uncertain how to proceed. Suggestions welcome....

Thanks and happy Fourth to you and friends and family!

[mrsD]

Torsemide will also deplete magnesium.

Here is the list of nutrients that Torsemide affects negatively:

calcium
magnesium
potassium
sodium
Vitamin B1 (thiamine)
B6
Vit C
Zinc

If you are using an ACE inhibitor, you would have additive losses of zinc.

Anything that impairs the circulation in the extremities may create muscle symptoms. You can test this by using moist heat on the leg affected. If your electrolytes are normal, and your calicum/magnesium ratio is good, you might see some improvement with moist heat carefully used.
Soaking in epsom salts might help that feeling too.

You have some very serious medical problems which means you should clear any supplements with your doctor(s) before using.

I would also get a Vit D test done ASAP.
The new medical video that just came out explains why:
http://neurotalk.psychcentral.com/thread92116.html

Edit to add, it might be a good idea to get the DNA methylation testing to see if you have elevated homocysteine issues affecting the blood vessels. This is called MTHFR polymorphism test. Patients who do not methylate properly develop cardiovascular disorders commonly.

[mikotoe]

Hello MrsD,
I'm hoping you can offer a bit of insight...

About two years ago I was diagnosed with low platelets, and what I thought was a back injury, Though several mris did not find anything unusual, about 6 months later I started to get intense numbness in my legs. Several doctors later I was diagnosed with B12 deficiency by my neurologist, I was treated with Cyanocobalamin shots twice a week, then once a week, then once a month for about a year, my neurological symptoms improved from when I began treatment, but hasn't completely ceased and tents to come back towards the end of the month (before the next injection is administered). I was getting my monthly shots from my primary care dr. but when I became pregnant, by dr. wanted to check my level first, then referred me back to my neurologist.

My neurologist referred me to a gastroenterologist who diagnosed me with positive antipariatal cells and he told me I didn't have the intrinsic factor, I was also checked for celiacs disease, which was negative.
The Gastoentologist gave me an injection of cyanocobalamin but It had been about two months since I had a shot, and I was 7 weeks pregnant. At 9 weeks, I miscarried. I am now reading that B-12 deficiency can be linked to miscarriage. While at the dr. I asked about a prescription for methlycobalamin injections but he wasn't familiar with them and gave me a prescription for cyanocobalamin injections 1000mcg once a month.

Two months later, I am pregnant again, now 5 weeks, I have been taking the cyanocobalamin injections monthly, as well as 1000mcg sublingual b12 tablets daily. I had my injection a week and a half a go, and now my legs are already starting to feel numb again. I'm very concerned that I don't have the proper amount or type of b-12 to have myself or my baby be healthy. so my question is this:

What is the recommended dosage of B-12 injections for pregnant women who are unable to absorb the vitamin in their stomach?

Where can I acquire Methlycobalamin as an injection?

If I can't get the Methlycbalamin as an injection, will the methlycobalamin sublingual tablets be helpful to someone who cant absorb it via stomach?

Is it possible that although I have been on a treatment plan that I could still be deficient due to getting cyanocobalamin instead of methlycobalamin and do I need to make up for that?

Are there any doctors you would recommend in the NYC area who specialize in b-12 issues?

Thank you so much for all of your posts, already I realized I have been taking my sublinguals with food, when I should be taking them without!

I would appreciate your insight into these issues, I would love for my neurological issue to be resolved, as well as to have a healthy pregnancy.
Thank you!
Holly

[mrsD]

Welcome to NeuroTalk.

I think you should skip the doctors and injections...they are certainly not helping you properly.

Get your B12 level measured when you think the shot has worn off so you know what that level really is. Get the numbers and post here.
If in another country, post the nmol/L so I can convert them to US figures.

You CAN establish good blood levels easily with ORAL methylcobalamin, and taken every day on an empty stomach.
It WILL work even when you have no intrinsic factor.

Getting shots once a month with no testing to show if that is working for you is just sloppy, and makes assumptions that all people are alike.

There is a methylcobalamin injection, but they are compounded at compounding pharmacies and will cost more. I believe they have a short shelf life also, once made up.

Babies can be born to B12 deficient mothers, but do not do well and have neuro problems. I'd get the B12 test ASAP if I were you.

It is your decision to stick with doctors who are not treating you adequately, and take control yourself with oral. Many doctors do not believe that oral works...and they are wrong. Studies show it works. But you have to take a high dose like 5mg a day and only on an empty stomach for best results. Passive absorption takes place without intrinsic factor only in high doses.

[Msudawg89]

Originally Posted by mrsD

Cyanocobalamin is the commercial synthetic form of B12 that was patented more than 40 yrs ago. For many years it was the only one. The body cannot utilize this form of B12 and has to
remove the Cyano portion (cyanide) and methylate it in order for the tissues to use it properly.

For many people cyano versions are adequate. It is the only version most doctors know about. It is in all their reference books, still.

But there are some people who:
1) do not have the genetic capability to methylate folic acid and B12 properly. These people will not improve with cyano version.

2) some people do not have the genetic ability to handle CYANIDE in any form. These patients may react to cyanocobalamin with worsening of symptoms (toxicity).

Luckily we have a very inexpensive oral version of methylcobalamin available without an RX (OTC) which can easily be used. But many doctors don't know it even exists.

1mg orally daily can cost patients about 9 cents a day.
Since it is easy to obtain and so inexpensive why take anything else? Many local stores do not have this yet, but it is very common online. Jarrow, Source Naturals and other reputable makers all have a version. Check out vitacost.com or iherb.com for examples.

There are alternate injectables too. When the cyano information started to become public, another form called hydroxycobalamin was marketed. Some doctors may use this, but it is more expensive. Methylcobalamin injections are available custom ordered at compounding pharmacies. This makes them the most expensive. This methyl version is being used in the Autism community.

Injections are invasive and more expensive, and really do not offer much incentive to ambulatory patients. They are still used for bedridden, or unconscious patients. But their days in the doctor's office are no longer necessary.

For people who really want to spend money on genetic testing, there are tests now that will tell if you are failing to methylate vitamins properly. These tests may not be covered by insurance (most likely not) and cost over $400. They are newly appearing in OTC outlets for less...more like $125. But since the methyl versions of the B12 and folate are available, it is not really absolutely necessary to test DNA at this time.

My observation after years on the net is that if people are having neurological symptoms severe enough and for long enough to appear here, they have some significant problems with their metabolic ability to handle some nutrients. Since these nutrients are now available in the activated forms for very little money, why use something that may not work? If methylcobalamin cost the same as RX cyano or more, I could see trying the cyano first. But the reverse is actually more true, so why bother with cyano at all?

There is another form of activated B12 called coenzymated.
It has another name dibencozide. This one is commonly available from Country Life. Its generic name is adenosylcobalamin and it is active also. But it tends to be more expensive. Some people like it better, and body builders tend to favor it for muscle building etc.
There is also an oral form of hydroxycobalamin. This has been suggested to be used to detoxify cyanide which can occur during acute smoke inhalation. This form is not as easy to find to purchase, is a bit more expensive, but is out there.

The actual chemistry of B12 and folic acid... and the entire methylation chemistry that they are involved with is really complex. I don't think going into it here is necessary for most people.

I can't find a Kegg module for B12... but here is the one for
methylation of folate:
http://www.genome.jp/kegg/pathway/map/map00670.html
Each box is one enzyme that can be affected by a genetic error/failure. The black arrows all come to folic acid to provide a carbon atom for it. Sort of like "all roads lead to Rome".
The methylation of B12 is complex too.
http://books.google.com/books?id=lZw...um=7#PPA122,M1
page 122 of this link gives some details for those who like this stuff

You have great information. B12 deficiency usually goes along with folic acid deficiency. My doctor ordered the blood test and it was covered by insurance. I had other blood test at the same time. I have two defective genes that does not absorb B12 or folic acid. I am taking B12 shots twice a week and L-5- MTHF every day. I can't absorb or assimilate regular B12 or folic acid. I need it in these certain forms. Many doctors are unaware of the need or forms.