[Yolo]

Thank you so much for the above information on B12. I really appreciate your informed discussion I had no idea I should be taking my methyl B12 away from food for instance. I will do so from now on. Now wonder it never has seemed to make a difference whether I took it or not. I agree the methyl form is best--and why not take it rather than not? Meanwhile I have a problem taking methyl folate or at least so I think. Maybe if I take it by itself rather than in a methyl B pill it will be OK. Wiped me out for two days the two times I took it. Pretty scary! I could hardly move I felt so under it. My grandmother used to get B 12 shots and swore by them. My condition seems to be more complicated. I had 23 and me done and discovered yes I do have inherited B12 tendency towards deficiency as well as multiple methyl and immune system difficulties--including a tendency to have low blood pressure with runaway inflammation from stress from ACE and other mutations which often leads to migraines etc. etc. But that is another topic, eh? Or is it? Things could get a bit confused here. I am new to the forum so will need to find my way...

[Kitt]

Welcome Yolo.

[brainedout]

Originally Posted by mrsD

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.

This is an important point. Mean corpuscular volume (MCV) is a measurement of the average size of your red blood cells (RBCs). The MCV is elevated when your RBCs are larger than normal (macrocytic), for example in people with vitamin B12 deficiency. My MCV has been on the high side during my last three physicals and only the doctor during my last physical noticed this, retrospectively after seeing my very low B12 count. I'm not anaemic but I do have neurological issues - my consistently elevated MCV should have been a red flag given my neurological issues.

MCV is a test which is routinely done as part of your CBC (complete blood count) and if the number is too high or too low, it is an indication that further testing might be required. When the MCV is decreased, your RBCs are smaller than normal (microcytic) as is seen in iron deficiency anemia or thalassemias.

[veggie]

I found this post through searching the internet and have a couple of questions:

Can someone with a b 12 serum level of 550 experience symptoms?
I am a vegetarian and over the last year or two year I have been tired (kind of zoned out like my body is disconnected from my brain), muscle twitches, stiff neck and shoulders, vibrating/tingling in my hands, nervous easily)

In the beginning of November after a very stressful time in October I began to have stomach problems (nausea, burning stomach, burping, throat tightness). The doctor diagnosed me with gerd. I tried to explain that I had never had stomach problems in my life. He prescribed prilosec, but it did not do me any good. I was then tested for h. pylori but that came back negative. Additional blood work showed that I was not anemic or diabetic. My MCV is at 94 (I looked back at old blood work and it looks like my MCV is something that continues to go up). During this same time, I also began to have bad nightmares where I sit straight up and/or, breathing heavy, heart racing absolutely in a state of panic.

Out of desperation after coming across an article that mentioned GI problems with b12 def. I asked to be tested this month. I was told the 550 was normal. Now for my second question in regard to the test. Because my stomach has been so bad, my diet has changed drastically (starting in Nov). I began drinking more milk, eating chicken noodle soup 3 to 4 times a week (trying to avoid the chicken, but I know I am eating some of it), eating 3 or so slices of multi-grain bread fortified with b12 during the day because my stomach worse when it is empty.) Could this change in diet, have affected the blood test results since it does not reflect my state at the time when all of these symptoms developed?

Any insight would be greatly appreciated.

[MelodyL]

Originally Posted by veggie

I found this post through searching the internet and have a couple of questions:

Can someone with a b 12 serum level of 550 experience symptoms?
I am a vegetarian and over the last year or two year I have been tired (kind of zoned out like my body is disconnected from my brain), muscle twitches, stiff neck and shoulders, vibrating/tingling in my hands, nervous easily)

In the beginning of November after a very stressful time in October I began to have stomach problems (nausea, burning stomach, burping, throat tightness). The doctor diagnosed me with gerd. I tried to explain that I had never had stomach problems in my life. He prescribed prilosec, but it did not do me any good. I was then tested for h. pylori but that came back negative. Additional blood work showed that I was not anemic or diabetic. My MCV is at 94 (I looked back at old blood work and it looks like my MCV is something that continues to go up). During this same time, I also began to have bad nightmares where I sit straight up and/or, breathing heavy, heart racing absolutely in a state of panic.

Out of desperation after coming across an article that mentioned GI problems with b12 def. I asked to be tested this month. I was told the 550 was normal. Now for my second question in regard to the test. Because my stomach has been so bad, my diet has changed drastically (starting in Nov). I began drinking more milk, eating chicken noodle soup 3 to 4 times a week (trying to avoid the chicken, but I know I am eating some of it), eating 3 or so slices of multi-grain bread fortified with b12 during the day because my stomach worse when it is empty.) Could this change in diet, have affected the blood test results since it does not reflect my state at the time when all of these symptoms developed?

Any insight would be greatly appreciated.

Hi, My name is Melody. your B-12 level is TOO low. Mine is 2000. Doctors do not know anything about nutrition. They practice medicine.

I can only advise you on the one way of eating that benefited my life. I turned to sprouting. Go on the internet and google "benefit of sprouting".

You're a vegetarian so you are perfect for this food. It is GREAT for people with sensitive stomachs. I sprout broccoli (no gas by the way), alfalfa, fenugreek and radish sprouts).

I have zero gerd, stomach problems. I go to the bathroom every day. It's the best thing I ever did.

Stop with the chicken noodle soup. Stop with anything processed.

You want to put live, good stuff in your body.

That is however if you are SERIOUS about your health.

I was and I am.

Melody

[MAT52]

Originally Posted by 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.

Mrs D - I am very grateful to you for this thread.

However I'm too distracted and unfocused just now to take too much of it in. I did learn, when my small fiber neuropathy first became dominant, that the folic acid I took when on Methotrexate for my RA for two years might have skewed my serum B12 results - last taken a year ago. So about 18 months ago I got myself privately tested to try and work out whether B12 deficiency could be causing this symptom for me. I hope you might advise me if taking one Methyl B12 (Jarrow) 5000mcg is enough if I tell you my levels from these tests - although they are quite old now. They were all within normal lab range when done;

10/10/13. MMA was 0.16 (lab range <0.29). Homocysteine 9.25 (lab range less than 15).

29/01/14 Serum B12 382 (lab range 200-700)

I took the above sublingual Methyl B12 5000mcg for six months last year and it made no difference to my neuropathic symptoms. However these were the last tests I had taken as my GP refuses to check this now and going private is very expensive for me as there's no clinic in the area where I live so I have to travel a long way to get it done. I am also Hypothyroid and I take Levothyroxine 100mcg and AdCal D3 one chewable daily on NHS prescription.

I would be so grateful if you could let me know how much I should take to get the benefit and hopefully address my SFN. Best wishes, Mat

[mrsD]

Mat, just take 5mg of the methylcobalamin once a day on an empty stomach. That is enough for most people.

You did test below 400 which is concerning. 400 is the new low now. (not 200) It will take a few months to see much improvement, especially if you have been low for a long time.

[MAT52]

Originally Posted by mrsD

Mat, just take 5mg of the methylcobalamin once a day on an empty stomach. That is enough for most people.

You did test below 400 which is concerning. 400 is the new low now. (not 200) It will take a few months to see much improvement, especially if you have been low for a long time.

Many thanks Mrs D - I will do this and let you know how I get on. Mat

[skboren]

Originally Posted by mrsD

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.

There is great information about B12 in this thread. This bit, however, requires clarification. Serum B12 values that are elevated out of range are in fact associated with a number of cancers and other life-threatening conditions. That doesn't mean that if you supplement too much B12 you're putting yourself at risk of those conditions. But it does mean that if your serum B12 is excessively elevated, it may be a sign of a cancerous or other serious condition that requires treatment ASAP. (I had a link to a reference, but it won't allow me to post the link, sorry!)

[mrsD]

There is no upper limit on B12 medically. (not toxicity studies)

The out of range upper figure is only useful for those patients NOT taking any supplements before the testing. The ranges were
developed on people not using any supplements, currently or in the recent past.

So the upper readings out of range can imply some medical condition (kidney failure, some cancers, liver disease, etc) being present, that needs further evaluation.

Excess B12 that is not used, or stored by the liver is excreted by the kidneys.

However, some doctors react to high B12 readings with horror...and tell people to stop supplements. This indicates a poorly trained doctor who doesn't understand the test's meaning. I myself would find another doctor who can evaluate things more realistically.