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STICKY - The Vitamin B12 Thread:
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 |
Oral vs injectable:
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: Quote:
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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. |
Who should take B12? What doses?
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. |
Cyano vs methyl forms of B12:
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 ;) |
Mrs. D.
I read ALL of your posts. Much appreciated. Mel |
Fasiculations and B12??
[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! |
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. |
Thanks Ms. D. We all need all the information we can get in order to "corner" this problem, and posts like yours truly make "gathering" a lot easier.
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Brand names
Hello Friends,
I have been told that taking just "any old" vitamin supplement, and even more important the vitamin B's should be cautioned, due to the synthetic vitamin pills do not absorb properly, and don't really truly even add to your health. So, my question is this, if allowed can you tell me what possible brand names of B12 I should purchase, that have been proven to work properly. I know that you would not be trying to push any particular name brand, just passing on information for health purposes. Also, I would preferably like to take a approved FDA vitamin, do you think they are safer? Thanks so much, I did read through all these past posts, but did not find the answer, or if it was mentioned did not fully understand still, what type, or brand that I should take. Patty:winky: |
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Hi PattY; Over two years ago, I went to iherb.com and bought the JARROWS Methyl B-12 5000. Been taking it every day since without a hitch. Best thing I ever did for my body. I did try a cheaper one (not that this one is expensive because it's not), but I did not get the same results. So, for me, the Jarrows is the way to go. Best of luck Melody |
There has been some evidence that folic acid supplements work better than food.
Here is a recent article about vitamins vs food: http://www.healthnewswebsite.com/nut...pplements.html Quote:
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How long should you wait to eat after taking B12 in the morning on a empty stomach?
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At least 1/2 hr , but 1 hr is better.
The micrograms of B12 can be lost in food. Microgram dosing of drugs has been found to be severely impacted by presence of food. Esp fiber foods that breakfast often has. Micrograms is a very very tiny amount of anything. Because I know this from my training...I push the empty stomach factor. I have not seen any of the OTC websites picking this fact up for B12...and it has been over 5 yrs now since it was known for drugs. That just illustrates how medical info can get walled into little niches and not applied to other situations! I had a patient in a clinic once whose doctor kept raising her thyroid dose. She was at .225mg which is really high.. and getting no response. Turns out she was taking it with Oatmeal! She was a young woman with an intact thyroid...no Hashimoto's either. She ended up well, finally at .1mg where she belonged, after I intervened. |
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Hi Mrs. D. You probably saved that woman's life. I take the Methyl B-12 as soon as I get up in the morning. Under my tongue. Around 8:15 a.m. By the time I take my walk to my local little breakfast nook where I have my one egg (or egg white), with my sliced tomatoes ( I bring a cup of my sprouts), and sprinkle on top). Well, it's about one hour after I do the Methyl B-12 that I have my breakfast. For me, it works just fine. I take 5000 each and every day. So far, no side effects, just good energy and no pins and needles and tingling. Oh, on an interesting note, last night Alan said "my feet don't burn, they just tingle". I said "what do you mean your feet don't burn, I thought that's what they've been doing for 18 years because your neuro diagnosed you with small fiber (I think large fiber too, but I'm not sure). He said 'what exactly do you mean when you say BURNING". So I said "well, in my case when the weather is not cooperating, my whole foot burns for two seconds. NOTHING COMPARED to what it did when I was first diagnosed with Diabetic Neuropathy two years ago. I immediately went on the Methyl B-12 and the rest is history. He tried it but nothing happened. So I do get very few episodes of slight burning, but it's NOTHING. Maybe they are healing? Who knows. I certainly can live with it because I dont' get the zipping zapping, etc. Alan, on the other hand explained that what I thought was BURNING in his case, turned out to be EXTREME TINGLING. So when Alan says to me "My feet are doing a dance", now I know he means TINGLING and not burning. God only knows, I would have spent the next 18 years thinking this guy's feet were on fire, and they were REALLY TINGLING LIKE CRAZY. Neuropathy is a very weird disorder. Melody |
Very Good Information
Thank you for being such a help!
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Something new is coming!
This company is releasing a new B12 oral delivery system:
http://www.emisphere.com/eligen.html A new way to deliver B12 orally, using lower doses. http://www.businesswire.com/portal/s...23&newsLang=en http://www.emisphere.com/eligen_library.html This company is trialing a 5mg dose form... http://www.emisphere.com/oral_vitamin_b12.html Quote:
I expect this will raise costs, to those who take B12, but it appears to be an improvement in absorption. |
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Mrs. D. I clicked on the emisphere link and read the info. How exactly is the DELIVERY of this oral B-12 different than what I am doing presently. Taking the Jarrow 5000 sublingually each morning. Thanks much Melody |
The new system is vague...they don't want to reveal their patent IMO.
One of the links shows how their additive enables large molecules to cross membranes in the GI tract. Up until now, if you have no intrinsic factor working, high dose B12 is only passively absorbed in the intestine. This is why high doses are needed, to push a little bit (less than 10%) into the blood stream. This is why empty stomach is important now with the oral as it exists today. It appears this technology is going to be applied to insulin and other large molecules that cannot be given orally at this time due to stomach acid and poor absorption. It appears that the B12 is the first application for this. I guess it will generate some income to support the research for the other uses. I just hope it is not priced so high as to be out of many peoples' reach. And I couldn't find what type of B12 they are doing either. I hope it is methylB12. I think those questions will resolve soon, as it will be out soon. |
Carrot Juice??
I know carrot juice provides lots of vitamin A, but do not know if its B complex vitamins have the B-12.
Does anyone know? Thanks PS: Couldn't live without my juicer!! |
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but I agree. I love my juicer also. I just juice for my husband. Melody |
B12 cannot come from veggies. It has to come from animal sources. Veggies have other B vitamins.
You can check your food choices for nutrition content here: www.nutritiondata.com They don't have fresh carrot juice...but there is this one: http://www.nutritiondata.com/facts/v...roducts/2757/2 |
Should I take B12
I have been diagnosed with mild depression and have been prescribed a low dosage of prozac. My symptoms are not feeling sad, angry, etc but more tired, sluggish, lack of motivation, etc. I have read online that taking B12 could help. Is this something I should do? If so, what kind do I take? I have looked online and there are so many. It looks like some have b-6 and folic acid as well. Thanks in advance for your help.
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Folate has been shown to be low in people with depression.
Same with DHA (a long chain fatty acid found in fish and fish oils). The newest data also shows low Vit D leads to depression. Low B12 actually damages nerves, the myelin that insulates them is maintained by B12 and other nutrients. Myelin damage also shows up as numbness/tingling and peripheral nerve pain. Certainly B12 helps with neurological problems, but it is not the only player in nerve maintenance. So you would have to pay attention to several things. You can be tested, for Vit D and B12. I'd get that done to see if you need them. Many people with simple low energy complaints, do well on a simple high potency B-complex. A B-50 type or something similar once a day in the morning often makes people "feel better". That is where I would start. Many people have posted on boards that this brand was very good and useful for them: http://www.iherb.com/B-Right-100-Capsules/110?at=0 After testing you will see if you need more B12 than this product offers. |
Burning feet even when B12 level tested high.... Confused!
I've had tingling in my hands/feet for almost two months now and my feet started burning on the bottoms about a week ago. I went to the GP doctor and they tested my blood.
Two days later, they called me and said my B12 level was way too high (+2000) and that I should stop taking the B-complex vitamin supplement I was taking. The burning in my feet is still there, but has decreased somewhat. I've also been exercising every day and doing some lite yoga. My acupuncturist put me on some herbs, so I can't tell at this point if stopping the B-complex vitamin, taking the herbs, exercise, or a combination of the three is helping my feet. The "night tingling" in my hands and feet have also decreased. My experience and the advice of my doctor seems to contradict what has been presented here regarding high levels of B-12, which has left me a bit confused. I won't see the nero doctor until next month and have no official DX yet, but plan to consult my acupuncturist next week regarding taking the B-complex and my unexplained high levels of B-12 in the blood test results. I would appreciate any comments/observations/suggestions from the group. Thanks.....! :) |
Welcome to NT....
You are free to Google B12 anytime, and find reputable links to satisfy your doctor. I have some on this thread in fact. You can follow your doctor's advice, and see if you get worse, or no better, and then decide 1) find another doctor, or 2) take control of your body yourself. When it comes to B12, this supplement is very safe to deal with yourself. This is not true for everything in life however. We would like to think in a perfect world, our doctors know everything that will help us and make us better. But the truth of the matter is that they do not. In a decision like this, you need to consider if doctor's advice is better than your body's needs. Do this-- make your doctor prove to YOU that a serum level of B12 at 2000 is harmful. I'd like to see what he/she comes up with! In fact lab ranges are arbitrary. They are taken from volunteers who appear healthy, and averaged. They are not based on people who are supplementing anything. Extremely high B12 in a person who IS NOT supplementing, may point to some rare conditions. That is all they mean. And furthermore, what is very lame about the US, is that the LOWER end of the range is out of date, compared to other countries. Normal is considered 150-200 here and in Japan anything below 500 is abnormal. |
Hi Starglow:
Sorry to hear that you are having tingling and burning. My last B-12 level was 2000 and I explained why this was so to my primary care physician. He listened and said "melody, keep doing what you are doing". See, I also take a B-Complex once a day. And I take 5000 of the Jarrows formula of the Methyl B-12. What exactly is in your B-Complex? Does it say Cyano or Methyl B-12. there are various kinds. And I completely agree with Mrs. Doubtfire (that's how I learned what I learned.....I LISTEN TO MRS. DOUBTFIRE. I don't think I'd be where I am today if I didn't LISTEN TO MRS. DOUBTFIRE. So, do as she suggests. Also list what other supplements you are taking. Everything (sometimes, doesn't go together). Are you diabetic? Melody |
could it be possible that you were getting too much B6 in your B multi vitamin and since you stopped your B6 level has decreased and thus you are feeling better. High B6 can cause PN and also make it worse if you already have it. Did you have your B6 levels tested also?
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EXCELLENT question. Melody |
aw shucks, thanks.
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Hi again....
I am not a diabetic as far as I know and my blood sugar levels were normal. Here's the B Complex info: Members Mark (Sam's Club brand) Thiamin B1 50mg Riboflavin B2 50mg Niacin 50mg Vitamin B6 50mg Folic Acid 400mcg Vitamin B12 50mcg - Doesn't specify specific type of B12 Biotin 50mcg Pantothentic Acid 50mg Other Supplements: Glucosamine - 1500 mg Omega -3 Fish Oil - 1700 mg Flaxseed Oil – 200 mg Vitamin C w/Rose Hips - 1000 mg Vitamin E – 1000 I.U. Co Q10 – 400 mg Ginko Biloba – 60mg Green Foods – Complex Niacinamide – 500 mg Alpha Lipoic Acid 600mg - Just started taking this today Cholestar K-27 Caps, 2caps/3xday for reducing Cholesterol Contents: Chromium - 50 mcg Inositol Hexanicotinate - 375 mg Red Rice Yeast extract - 175 mg Garlic extract – 100 mg Pantethine – 50 mg Although I have no problems exercising which includes riding a stationary Lifecycle for 12 minuts, today I had problems driving for the first time since my feet started burning last week. I can drive for a bit, but then it becomes hard to press the pedals with my right leg because it becomes weak and my toes cramp up, especially in heavy traffic. I had to put my car in park at traffic lights to rest my leg/foot, but even then it was hard to get back home. |
I think it is unlikely that 50mcg a day of B12 would put you so high.
Echos has a point however, about your B6 intake. The only way to isolate this problem is to discontinue the Complex and only use the B12 separately. Red Yeast rice works like statins. It contains statin-like chemicals, and we know statins can cause PN. Each of these supplements varies in how much statin-like actions are present, depending on the quality of extract used by each manufacturer. Riding bicycles move the ankle alot. If you have any tarsal tunnel entrapement issues or arthritis, you can aggravate the nerves with this form of exercise. I have scar tissue from a surgery on my left instep, and the bikes always aggravated pain in that foot for me. Your foot burning can be due to many things, in other words. |
Could it be possible that my B12 levels are high because the body isn't absorbing B12 for some reason? If so, what could possibly cause that to happen? Is there a specific test that can be done to check B12 absorption rate?
I'll stop the B-complex and just take B12 as suggested and see what happens. The burning in my feet seems to be less now, but my right leg is still weaker than the left. Thanks for all your help and support! 8-) |
B12 levels cannot become high, if you are not absorbing.
They can become high if your kidneys are not excreting it. So some studies show high B12 levels when no supplements are taken, as kidney related. High levels of B12 with no supplements, may occur with some leukemias, or some intestinal dysbioses (infections with certain B12 forming organisms). These are pretty uncommon and not usually found with a B12 screen. |
I am a new poster on this board. I am a 45 year old female living with a undiagnosed neurological disease for five years. I have a severe B12 deficiency with such symptoms as numb hands and feet, lancinating pain into my fingertips, memory loss, cold fingers and toes, lack of energy ect. The disturbing part of my disease is that I have an abnormal EEG with silent temporal seizures and now have developed a slight tremor in my right side. Many times my right side feels dead and not attached to my body. The most annoying symptom is a deep body vibration that seems to come out of the center of my chest and radiated down my arms and legs. I have had many MRI's and SSEP's and blood work without any answers. All were negative for placques or abnormalities. Only the EEG was abnormal. No one thinks I have MS which mimics all of these symptoms. I am a self employed chiropractor and am aware of long term effects of B12 deficiency. I have been doing intramuscular shots intermittently for five years. Is there anyone out there who has anything like this, and has anyone gotten worse while administering shots. I am at a loss and refuse to be tested anymore since I spent $18,000 out of pocket last year and got no answers. Any feedback would be greatly appreciated.
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The first question I'd like to ask you is what form of B12 were you getting by injection? Cyano or hydroxycobalamin? (some people do get compounded methyl B12 --did you?) Injections only show blood levels for 72 hrs (according to my pharmacology reference). The body does not like bolus vitamins and I think injections are not really the way to go. Most of the high B12 might be excreted. Daily use, is more biologically similar and that is why oral works well too. Cyano is hard on some people. If they cannot activate it properly to methyl, then response would be poor. Hydroxy form does not carry that problem. I'd give up the shots and do 5mg oral of methylcobalamin daily--on an empty stomach--- for several months. Then get retested. That seems like alot of money for correcting something that could be much less expensive. You might want to get a MMA test too. And Vit D. People with chronic pain, often do better pain wise if they correct a low serum Vit D level. |
Thank you for the quick response. The reason that the costs were so prohibitive was that both my sister and my first cousin have MS. The neuro's here were so convinced that I had MS that no stone was left unturned in the testing. Which by the way was all inconclusive. The MS clinic in Rochester NY thought I might be one of the 1% of patients who do not show MRI signs but still have relapsing remitting MS. I have had neuro consults, ortho, GI/GU, acupuncture, chiropractic, massage, Reiki, blood work and detoxification. All I know is the past five years have been very stressful and frustrating.I have been using cyano 1000 mcg 1x week for one year, then once/two weeks and finally once per month. I read and researched all I can on the B12, cyano vs methyl vs hydroxy and the abilities of the body to absorb each of them. I am taking No Shot Methylcobalamin but according to what you have said, not enough. I am also upping my folic acid, not folate but folic acid sold by Metagenics to bring down my homocysteine levels. It is all so complicated. If you take too much folic acid it actually reacts and raises the level of homocysteine which is bad. It is all a balance I guess. My MMA was within the normal range, I think less than 1. When I stop the shots, I end up where I am now with the ugly symptoms that are misunderstood, misdiagnosed and inconvenient to say the least. I have not in the past found methyl in the injectible form. Also when I have the B12 serum levels tested, they are within the normal range, although the symptoms are intermittent, sometimes completely gone and other times like right now that they are pretty intense. To add to it all, my 46 year old sister is dying of cancer. I have learned to never say it can't happen to me.......................
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You can have methyl compounded into injections. The autism community does that. Use a compounding pharmacy.
But I don't think injections are the way to go long term. The body does not handle bolus vitamins well. It wants to excrete them. B12 is carried into the CSF and is also stored in the liver also. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC488275/ For about 100 dollars you can have a DNA MTHFR test to show if you have trouble methylating folic acid and B12. There is a special folate called l-methylfolate that bypasses this genetic error which occurs in about 1 in 10 people. It is in the RX vitamin Metanx and also OTC as MetaFolin by Solgar in 800mcg dose. There is a discussion right now on our forum here about it and the failure of a new product posing as an equivalent generic. I have more details there. http://neurotalk.psychcentral.com/thread114302.html It is also available RX in a very very high dose of 7.5mg as Deplin for mental depression. Regular folic acid has to be methylated in the body before it becomes useful and active. If one has the gene polymorphism failure, regular folic acid does nothing. On that thread I discuss the problems of TOO MUCH folate as well. Many of us here do very well with once a day oral B12. The trick is to take enough, and to take on an empty stomach. |
mrsD:
Thanks for the valuable information and links on this subject. I have started 5000 mcg orally of methylcobalamin daily, upped my calcium and magnesium, seperated the folate from the B12 and also doubled my Vit D3. I have suffered from severe anxiety related to the B12 deficiency and may be one of the rare cases that actually had a psychotic episode that has no other explanation than the B12. It is very scary and so completely out of character for me, it almost sent me over the edge, literally. The only possible reason for the mental dysfunction that we can come up with is the B12 issue. And it came out of no where. Although I am under much stress with my sister dying, it was not any more than usual. I cannot find literature that discusses the symptoms of someone like myself that has been treated for five years for this disease, but still has flare ups and depletions along the way accompanied with physical and psychological impairments. Is anyone else having similar things happening to them? I was under the impression (wrong of course) that once you started treatment, the symptoms would disappear and the neurological and psychological damages that have been done would be repaired. Or at least I would not get worse. I have read many studies about the irrational and psychotic behaviors of subjects low in B12 that are fully rectified with treatments. I am very interested in meeting with my local health care providers and giving them a presentation concerning my case. I am lucky enough that I have professional relationships with them and they really will listen to my story. There is certainly enough information out there, it is just not getting into the right hands and the right minds. I appreciate all the information and help and will continue to pass on any information I find on the subject. |
I love it when people pass information on to others, esp doctors.
Since they won't learn this for themselves, I guess the patients have to teach them? :rolleyes: There was an episode on the Discovery Show Mystery Diagnosis, about a poor woman who had terrible symptoms for 10 yrs, including poor balance, vision changes, panic attacks, etc, which totally changed her personality. (they didn't go into "psychotic" but it could be possible I think). She saw a show with a rheumatologist on it, and in desperation went to her, and was quickly diagonosed with B12 deficiency. (her level was around 200). None of the many doctors she consulted for TEN YEARS found this cause! You will probably need B12 for life. Don't be tempted to stop it when your levels get better-- some people do and as a result they relapse. I'm glad you are feeling positive now, and I hope you continue to spread the word and improve! |
mrsD:
None of the B12 symptoms have really scared me yet, the tingling, tremors, mind fog, pins and needles everywhere, but this anxiety and terrible mind games that I am going through are really scary. I don't know how long I can hold out without help of some kind. I have had it twice since November. My therapist is aware and so is my family and they hope I make a complete recovery. My doc wants me to take an SSRI (LEXAPRO) for the anxiety. I don't know what to do anymore. I think the high levels of B12 can also make you jittery and nervous. I am holding on by just a small thread. Any help would be appreciated. Thanks so much from someone who really understands. |
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