• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

How long will B12 stay high? is it a problem?

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi all, i wondered if those who are more knowledgeable than me could take the time to explain about high b12 levels AFTER supplementation.

I had a borderline b12 deficiency and so did mb12 injections daily, for about a year. I had problems tolerating them at first, but gradually built up the dose. They helped with a lot of symptoms an i felt much better - especially fatigue. After a while they werent making any more difference, in fact my health took a big step back again, so i reduced them to a couple a week. I didnt notice any difference at this rate and the good effect had now worn off so it seemed pointless to keep on doing them (apart from using it up as it was expensive!)

I stopped altogether, then tried one again and agin had the bad reaction.
I now havent done any injections or any b12 supps for about 6 months, yet when i have blood tests my levels are consistently high (about 2,000)

What i wnat to know is, how long will it take for the b12 levels to drop? Why have they not dropped when we are told b12 is water soluble and you will excrete what you dont use? Is it dangerous for the levels to be this high? does it show that i am not utilising b12 - as all this time it has stayed high in every test. Would it be foolish to try the injections again to see if they help my overall health?

Also wondering if anyone knows anyhting about the relationship between b12 and anemia - i have persitent low iron and ferritin despite supplementation, my blood cells are too small, but i also have too many of them - des this have anyhting to do with b12 or is it completely seperate?

I do understand that blood levels do not necessarily reflect tissue levels, but am now wondering if my consistently high levels mean i may not actually be using it up.

Thanks for any help in understanding this.
all the best, Justy.
 

Shellbell

Senior Member
Messages
277
Hi Justy, I can't answer about the b12 as I haven't had luck in taking any at this point. But as far as anemia, I have been having issues with this as well. This is unusual for me. My tests the last year have been showing up that I am anemic. I eat a lot of meat, but I also have a very irritated gut and know that I am not processing my food adequately for nutrient absorption.

I started working with a new nutritionist last December. Long story short, we found out that I have h pylori. This can cause anemia. After talking with a couple of other people, who have been having anemic issues as well, despite supplementation, they turned out to have h pylori too.

Up to this point, I have been tested for h pylori 5 times, all test negative. My nutritionist said it is actually hard to detect depending on the lab that is being used.

Just thought I would throw this thought out there. He said that this infection is more common than reported. And if one has been chronically ill for some time, it is really common to have.

Good luck with everything!

Shellbell
 

SOC

Senior Member
Messages
7,849
What i wnat to know is, how long will it take for the b12 levels to drop? Why have they not dropped when we are told b12 is water soluble and you will excrete what you dont use? Is it dangerous for the levels to be this high? does it show that i am not utilising b12 - as all this time it has stayed high in every test. Would it be foolish to try the injections again to see if they help my overall health?
I have the same questions since I'm in the same boat.

I supplemented with all forms of B12 for a while without noticing much difference. In March 2012 my B12 level was recorded as ">1521 pg/ml", the test's highest measure. In June 2012, without more B12 supplementation it was still >1521. By December 2012, it was down to 1117 which is still above the the top limit of 914 pg/ml. So it looks like it will take a year or more to get from ">1521" down into the normal range for B12.

I was told by an ME/CFS doc some years ago that we just excrete excess B12 which may result in pink urine, so I could cut back my B12 if I peed pink. I never did have pink urine, so I never worried about excessive B12. Now I don't know what to think.



FWIW, I had H. pylori with ulcers about 25 years ago, but no sign of it since.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
SOC - yes i was also told we would excrete in urine what we dont need, but it seems to me this can't be happening if our levels can get so high.

My tests for H Pylori have been negative so far, although i do have gastritis and awaiting endoscopy.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
I've read that the B12 tests are not very accurate. They talked about this in the B12 documentary, somewhere on this forum...? I think they said methylmalonic acid and homocysteine were better to test, and would indicate how well B12 was being utilized.

IN my notes I found: homocysteine and methylmalonic acid both go way up, with low B12-----at 22:00 in the film

Ultimately though, it's best to do the methylations pathways panel, to see the whole picture. This has been my attempt these past few weeks. Maybe ONE DAY I will get there. :rolleyes:
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi all, i wondered if those who are more knowledgeable than me could take the time to explain about high b12 levels AFTER supplementation.

I had a borderline b12 deficiency and so did mb12 injections daily, for about a year. I had problems tolerating them at first, but gradually built up the dose. They helped with a lot of symptoms an i felt much better - especially fatigue. After a while they werent making any more difference, in fact my health took a big step back again, so i reduced them to a couple a week. I didnt notice any difference at this rate and the good effect had now worn off so it seemed pointless to keep on doing them (apart from using it up as it was expensive!)

I stopped altogether, then tried one again and agin had the bad reaction.
I now havent done any injections or any b12 supps for about 6 months, yet when i have blood tests my levels are consistently high (about 2,000)

What i wnat to know is, how long will it take for the b12 levels to drop? Why have they not dropped when we are told b12 is water soluble and you will excrete what you dont use? Is it dangerous for the levels to be this high? does it show that i am not utilising b12 - as all this time it has stayed high in every test. Would it be foolish to try the injections again to see if they help my overall health?

Also wondering if anyone knows anyhting about the relationship between b12 and anemia - i have persitent low iron and ferritin despite supplementation, my blood cells are too small, but i also have too many of them - des this have anyhting to do with b12 or is it completely seperate?

I do understand that blood levels do not necessarily reflect tissue levels, but am now wondering if my consistently high levels mean i may not actually be using it up.

Thanks for any help in understanding this.
all the best, Justy.

Hi Justy,

2000pg/ml for cobalamin level is only statistically high. It is an artifact of average cbl level in a chronically deficient state for much of the population. The kidney excretion allows levels of over an estimated 5000 pg/ml where it swirtcjhes to liver mostly in the bile. That 2000pg/ml represents a total of 10-20mcg in your, serum, TOTAL. When a person has an IM injection of 1mg of B12, serum level peaks 30 minutes later at approximately 100,000 to 150,000 pg/ml. A person who retains 1 or 2 mcg more than average every day could have a level like that. A single meal of liver or clams or oysters can do that too. There are plenty of studies showing that effectiveness of MeCbl and AdoCbl is unaffected by serum level like that. Levels at over 1500pg/ml at the start still has full effectiveness. It's the amoount NOT bound in that matter for turning healing on. For all you know this could largely be junk cobalamins from plants or detoxing a variety of toxins that destroy active b12s. Symptomks and a trial are the only way to know if MeCbl ANDOR AdoCbl. These vary from about 100x to 10,000x more effective depending how it is measured by my calculation, "radically" more effective at dealing with inflammation according to Carmen Wheatley (Large Gorilla ... Adenosylcobalamin ...".

The minimum level of serum cobalamin according to where healing starts up is at about 20,000 pg/ml estimated for a peak level as the dose is absorbed. I maintain mine at 50,000-200,000pg/ml estimated for CNS neurolgy healing.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
SOC - yes i was also told we would excrete in urine what we dont need, but it seems to me this can't be happening if our levels can get so high.

My tests for H Pylori have been negative so far, although i do have gastritis and awaiting endoscopy.

It does excrete in the urine, the amounts in excess of 10,000 pg/ml or so. The rest goes out through the recycling system and is excreted in the bile and largedly re-refined and re- absorbed with high efficiency in the small intestine. Your level is not high except compared to people who are deficient. What it means is hard to say. It's below the level needed to turn on healing.

When it is spontaneously over 5,000-10,000 pg/ml or so they look for liver damage meaning the liver isn't removing the cobalamins so it is exceptionaly high. However, for somebody suppleemnting with active b12s high levels are normal, much higher as needed for turning on healing, or at least having a chance to do so,
 

Shellbell

Senior Member
Messages
277
Hi Justy, my h. pylori tests over the last few years kept coming back negative, but I was having horrible gastric pains that no doctor I was seeing could explain other than to tell me I had leaky gut. Finally something came up positive!! I hope your tests reveal something to help solve your mystery.