The short answer to the last question is "Yes, unless they are knowledgeable." At the Scripps Center for Complementary Medicine, where my cardio is, the medical staff is very knowledgeable about nutrition.

I believe that the B-12 test tops out at 2000, so no, you cannot get a reading higher. I concur with others here that B-12 is harmless in amounts we are likely to take. In Japan injections of 30 mg./week (that's 30,000 mcg.!) were an effective and safe clinical treatment for PN. I don't know if they still do that in Japan, but the point is that's more per week than you take in many months.

Your liver stores between 2,000 and 5,000 mcg. of B-12 and doles it out as your body needs it, under 5 mcg. per day. Now that your stores are built up, 1 or 2 mg.(1,000-2,000 mcg.) per week, taken all at once (assuming you have no intrinsic factor to help absorption) should keep the level up to maximum.

I actually got a test back that read 4002 pg/mL last aug 2007

Mel, you are doing very well with all that weight loss and being so strict on your diet is just simply doing a fantastic job, well done ,
I use to find it very hard going out restaurants with friends, i try to keep away from anything white [ which i love ] but trying to keep my sugars down and keeping my weight down can be very hard at those times, especially when others say " why don't you have some chips [fries in US] or white bread/rolls, drink beer or other stuff, it won't kill you " you know the drill, i used to try to explain the reasons but give up now because they just don't get it or don't want to understand,, no matter how much you try, so i just laugh these days and tell them i don't eat/drink that rubbish, i like to only eat healthy stuff and it shuts them up straight away.
keep up the good work,
Brian

I was just wondering if anyone here has ever read the book written by Sally Pacholok, R.N., BSN and Jeffrey J Stuart, D.O. called "Could It Be B12?" They say very often your B12 level simply reflects the amount of B12 you are taking daily. They also say that once you start taking B12, when being tested for B12 levels, it will never be a true test again. Sally posts about B12 in the wrongdiagnosis.com forum.

My B12 level was never tested before I started taking B12. I could not get my doctors to listen to me, as is often the norm, especially with a celiac. So often, we get the run around when trying to get a diagnosis, I was hurting so much and finally I tried whatever I could to stop the hurting. B12 was one of the things I tried. When I finally got a doctor to test my B12 level, I was taking 1200mcg daily of B12 and my level came back at 1237, so my doctor told me my B12 is just fine, not to worry about it. So, now that Mel's came back 2000, and I take 3000mcg daily, I am betting mine would come back high too.

Do you feel there is any truth to their theory?

It stands to reason that if one supplements with B12 on a daily basis, one should have quite high serum B12 levels, as the body is being flooded with B12--but that's not an indication if one was deficient before starting that regimen, nor is it a good indication if it is being utilized on the cellular level.

This is why a low serum B12 level has more specificity than a high one does--a low level is almost definitely an indicator that someting is awry, while a high may or may not be.

People with "OK" B12 serum levels who have not started taking supplements are advised (by us at least, if not many doctors) to have the MMA and homocysteine tests to check for the metabolites of B12 utilization--these are better tests of B12 status (though even they are not perfectly sensitive and specific).

But, anyone who is suspected of having a gastrointestinal condition that involves malabsorption should have celiac panels, vitamin levels, mineral levels run (and probably mannitol tests for malabsorption as well). Trying to get doctors to connect the dots, though, is difficult.

I remember last year when I first went to Dr. Fred, and I don't know if this was WAY BEFORE I had begun to do the B-12 thing, I asked the guy who takes the blood, to test me for intrinsic factor. I remember asking him when I got the results "how is my intrinsic factor", and he replied 'just fine'.

Now I have no idea what their version of just fine is, but I can honestly say that if I eat onions, I burp all night long. So I don't eat onions.

This has something to do with stomach acid and absorption of food, right??

I have (in my youth), had stomach problems. I couldn't eat spices, or heavy stuff. Didn't stop me from loading up with chips and dips and ice cream and ding dongs, but I was not the type to order a huge Steak with potatoes and garlic bread. Now Alan, well he could have eaten a whole pizza by himself. Come to think of it, he sometimes did. Who the heck can eat a whole pizza??

I remember when we were first married, we went to Florida and they had a contest or something to the effect that you could eat all the spaghetti you could wolf down. (Look how stupid our brains were way back then?).

And while I was no hefty person when I married Alan, well, I wasn't slim.

Do you want to know how many bowls of spaghetti Alan wolfed down??? 7.

I had 3. It was great. I was raised on Spaghetti and meatballs. Alan was not.

So put a dish of spaghetti in front of him and his eyes blew up. He actually ate 7. He did not break the record. Some big guy came in and ate 8 bowls of spaghetti. Good God, what the brain allows one to do!!

I'm just curious about one thing.

How come I now can entertain, have chips on the table, with dip, with soda, with WHATEVER people like to eat, and when they go home, I vacuum seal the chips and put the dip back in the fridge and I wouldn't go near this if you paid me a million dollars.

How come I didn't think this way when I was 40? I mean, I got diabetes when I weighed 300 lbs, I was 40 years old, I developed osteoarthritis, my own mother kept saying "are you nuts, look at you", the doctor told me "get on the scale I want to vomit", but did that stop me from sitting down in front of the tv every night with my bag of dipsy doodles, big glass of (DIET SODA)??, and some cupcakes?? I mean, where the heck were my brains in those days.

It's like I'm a completely different human being. I have no idea why I look as food as fuel and where it goes and what it does to my body.

Why didn't I do this when I was 40? Might have had a better outcome, now, right?

But I guess I was a food addict. I have read that once you are an addict, you are always an addict, only the difference is that you are a recovering addict.

So what am I?? A recovering food addict???

And the people who we went out to the Japanese restaurant the other day, well the girl called me up and said "Melody, you know you can eat if you really wanted to, what's the big deal, a glass of wine, some potatoes, some white rice, I mean, it can't hurt, it's only one time".

I honestly didn't know what to say because you couldn't get me to eat that if you paid me. I simply said "Yeah, I know one time probably wouldn't do a darn thing except make my brain feel good, but honestly, my brain feels good when I put steamed veggies and broiled fish into it.

She didn't get it.

Actually I myself do not get it. I have literally been able to re-wire my brain. Alan did it too.

I believe that when one develops any kind of neuropathy, and you discover that if you eat certain foods, your sugar will go up, and your neuropathy MIGHT get more progressive.. well, I don't want to take that chance. That's the way I look at it. Maybe I'm wrong, but I'm not taking any chances.

Alan feels the same since he got his stent. I realize that not everybody can do this. But it took me until my mid 50's to make my brain realize this.

I'm just wondering why my brain didn't do this when I was 40??

I mean, I was 40, not 20. So how come it took 15 more years for me TO GET A BRAIN LESSON??

By the way, I'm doing the B-12 thing every other day since I found out my level is 2000.

And I'll only be purchasing Jarrows from now on, not the other cheaper brands.

Now I'm going to gently steam mop my floor and try and go for a walk.

It's funny, in that I'm 60, I think like I'm 20, I want to look like I did at 30 and after watching that Barbara Walters special on aging, I'll probably be the first one in line to try that reversatrol pill.

God, the vanity of women!!!! lol

Hello Deb,

I agree with the response from Glenn. I suggest that you read my posts on the following threads:

• Post # 14 on this thread
  
• Post # 9 on "Burning skin pain undiagnosed": http://neurotalk.psychcentral.com/thread42628.html

You have raised two issues in your message:

• Why test first?
• The meaning of a high B12 level

My previous attempts to explain these, on this thread and on others, have apparently failed to get the message across clearly. So, here I shall try to do a better job of it.

Serum vitamin B12 is a very poor indicator of vitamin B12 deficiency; it is neither sufficiently sensitive not sufficiently specific. This means that it often gives false negative results, thereby failing to detect the presence of an actual deficiency. There are also reports of it giving false positive results.

If you are interested in reading about the problems with using serum B12 for diagnosis of B12 deficiency, you are welcome to visit my web site (URL at end of this message). I suggest that you read all of the pages in the section Information and Advice for Patients. You will find that Sally's book is listed there as recommended reading, along with other references. I especially recommend that you also read reference BG1, on my References page.

These are the problems with using serum B12 for diagnosis of vitamin B12 deficiency:

• There is significant variation in results between labs, and sometimes within a lab - use of automated immunoassay kits encourages cost-cutting and sloppiness in calibration
• Serum B12 only represents body stores of vitamin B12 if it is in equilibrium with the body stores - it is affected by any recent supplements or injections
• Body stores do not indicate how much B12 is actually available to the cells - the proportion of B12 on transport proteins, active B12 (holotranscobalamin), falls as deficiency develops
• The amount of active B12 (holotranscobalamin) does not indicate the ability of the cells to utilize the B12

You can think of the above list as a series of opportunities for errors, so the serum B12 result says very little about cellular deficiency. For this reason, many experts advocate the use of the two metabolic markers, methylmalonic acid and homocysteine, for diagnosis of vitamin B12 deficiency.

Now, I shall consider the two issues that you raised.

1. Why Test First

You asked:

What Sally has said is entirely correct. I have explained this in a warning on my web site, on the General Advice page in the section Information and Advice for Patients. I have also copied the warning to the end of my messages in several threads, including post #14 on this one. In my reply to Eugene, in his thread "Burning skin pain undiagnosed", I said:

I must admit to feeling anger and frustration when I so often read here about patients who are driven, by the arrogance or apathy of their doctor, to taking treatment before having a proper diagnosis. By failing to test first, the doctor condemns the patient to the dilemma that I put in my warning:

Perhaps it might help if I explain the reasons in more detail.

Unlike many other nutrients, vitamin B12 is normally stored for a very long time in your body, the majority of it in your liver.

In a healthy person, your body supply of B12 is almost entirely recycled. The stored B12 is excreted in the bile, into your intestine, where it is re-absorbed; this is called enetro-hepatic recycling. According to some experts, your body store is sufficient to last for 20 years. You can read about this in detail in the article by Victor Herbert, my reference BH1. So, if a healthy person suddenly stops taking any B12 in their diet, by becoming a vegan, it can take decades for the B12 deficiency to develop.

If anything interferes with the recycling of your body store of B12, the store will eventually deplete and you will develop a cellular B12 deficiency.

If you develop a B12 deficiency for any reason, the time it takes to deplete your body stores will depend on the severity of the problem. For example, some experts quote a figure of 1 to 3 years before your stores become depleted, if you develop pernicious anaemia, where there is no recycling.

If your stores are depleted, and you commence taking supplements or have B12 injections, you will immediately start to fill your body stores. Even if you cannot absorb much or any B12 normally, for example because of atrophic gastritis or PA, you can still absorb some. This is possible because of a process called passive diffusion, which will allow you to absorb about 1% of any dose. About 200 to 300 doses, of 1000 µg each, will be sufficient to reach the 2 to 3 mg required. If you do not have total malabsorption, or if you take higher doses, your store will fill more quickly.

So, what happens if you suspect that you have a B12 deficiency and start treatment? If your body store of B12 was not depleted, the additional intake is excreted, so it makes no difference. If your store was depleted, you will add some B12 to it, increasing the amount of active B12 (holotranscobalamin) available to the cells. If your cells are able to utilize the additional B12, this will reduce your methylmalonic acid and homocysteine.

Once you have interfered with the body store of B12, by taking treatment, you cannot go back to the pre-treatment condition. You have no way of knowing how depleted the stores were, and no safe way to deplete them again.

It is not possible to simply monitor your serum B12 level in the hope of observing the onset of deficiency. You can develop irreversible neurological damage from B12 deficiency, even when your B12 levels do not fall to abnormally low levels.

This is not just theory. You are invited to read about my current Series 4 tests, on the Introduction page in the Continuing B12 Research section of my web site. I have not yet published the results, but they confirm my results from the first series. After ceasing supplements, the serum B12 level is not useful in detecting the developing cellular deficiency.

If you were to look at the serum B12 chart for my current test series, you would not realise that I have had a true cellular B12 deficiency since last August, and that it is now an overt deficiency, with rapidly rising methylmalonic acid levels, and worsening symptoms. As they say, "please do not try this at home".

2. The meaning of a high B12 level

In the previous answer, I said that serum B12 is not useful for diagnosis of vitamin B12 deficiency.

You can use serum B12 to assess the effectiveness of treatment, as distinct from diagnosis, to some extent. Your serum B12 level represents the body storage of B12, if they are in equilibrium. I shall explain what I mean by this.

If you are taking B12 supplements, then suddenly stop, the B12 in your serum decays exponentially. The rate of decay, called the half-life, is the time it would take for the amount of B12 to reduce to half the original. For serum vitamin B12, the half life has been found to be about 10 days. This means that, if you only had B12 in your blood, and none in body stores, it would take 10 days to fall from the initial level to half of that. Because you will have some body stores, the rate of fall is more complex than that.

An example of this is shown in Chart C10, which can be found in the Ceasing Oral B12 Treatment section on the My Story page of my web site. I have attached a copy to this message, as a PDF file.

This chart shows how my serum B12 increased from 100 pmol/L to 1232 pmol/L after taking two 1000 µg B12 for 100 days. The serum B12 level fell to 1099 pmol/L, possibly because of instability when it was no longer in equilibrium with body stores. After I ceased all treatment, my serum B12 level fell to 660 pmol/L in one week, to 601 pmol/L after two weeks, and to 323 pmol/L after a total of five weeks. My serum B12 level then gradually fell to 140 pmol/L over the next few months.

The initial serum B12 level, of 1099 pmol/L, was affected by recent absorption of the supplement, and did not truly represent body stores. It took five weeks for the serum B12 to come into equilibrium with what was in my liver.

Here is another point about the chart, also related to my first answer. At what point, on that chart, do you think that I became B12 deficient? The answer is that you cannot tell. According to my interpretation of MMA results, cellular deficiency commenced within three weeks of my B12 level falling to 323 pmol/L, at about Day #140. It is impossible to see that from the B12 chart.

So, you can use serum B12 as a guide to changes in your body stores, but not cellular deficiency, and only if you wait for several weeks after ceasing supplements.

I hope that I have made things a bit clearer for you.

Please let us know if you have any further questions. If you prefer a private discussion, you are welcome to send me an Email from the Contact page of my web site.

Paul

Attached Files

Chart C10.pdf (16.2 KB, 236 views)

Thank you Paul and Glenn, and this is so true: I didn't know to ask for a B12 test, that's why I was going to doctors! They failed me, I really don't feel I failed me. I started taking B12 to help myself because I felt no one else was helping. Now, I may never know if I have a true deficiency, although, being a celiac, and having been undiagnosed for so many years, there really is no doubt in my mind that I was deficient of many vitamins and minerals. I know the B12 has helped me. My regular doctor, doesn't doubt the fact that it is helping me, my neurologist I also, doesn't doubt it is helping me. He left the decision to stay with B12 pills or to have the shots, up to me. From here, I guess I stay with what I am doing.

your hyper links on the b12 betrayal page dont work for me

Hooray! Sounds like you are storing. It would be very unusual if you were not.

I would take a 5000 mcg once or twice a week to maintain. The brand I use is more cost effective in the 5000 mcg dose, and besides it tastes better.

MMA testing is probably not necessary, but usually as people are B12 deficient for a while they MMA goes up. Can't hurt to test MMA and Homocysteine, since together they will detect most need for B12, folate, and B6.

I wonder how many more decades will pass before most medical people have even a portion of the basics regarding B12.

Hi, all!

rose