See what you think about this doctor and B12

[ConsiderThis]

Someone who emailed me recently was having cramps from vitamin C, in much, much smaller amounts than those I have been taking.

So I set out to read up on what might cause that... and found this completely lovely news article about a doctor in England... and his use of vitamin B12 with his patients...

see what you think:

http://www.health-boundaries-bite.com/Controversial-and-IMPRESSIVE.html

:)

[glenntaj]

And one worth testing for beyond the standard B12 serum testing--as Rose and Mrs. D have been pointing out for years, the serum measurement is just the grossest of tests, only revealing the amount of B12 currently in the bloodstream--not in the tissues where it is most needed. The homocysteine and MMA tests are better indicators of B12 deficiency--not perfect indicators, but better.

Two things should be mentioned, however--injections are not the only way to go, as there is substantial evidence that sublingual mass B12 dosing can help rebuild stores just as well, and is far cheaper. (The reason for the mass dosing, in amounts 1000mcg or higher, is to allow for the 1-2% passive absorption capable even in those with no intrinsic factor to break the vitamin out of foodstuffs.) Secondly, many of the injections out there are composed of the cyanocobalamin form of B12 (as are many commercial supplements), and while most can rebuild stores on that, some who have inherent errors pertaining to methylation biochemistry would do better on one of the other forms, such as methylcobalamin, which doesn't have to jump through as many metabolic hoops to be utilized.

[mrsD]

cramping and GI distress in doses as low as 1 gram a day, for some people.

Once you get into megadosing with it -- it becomes a DRUG.

It also changes the pH of the urine, and may affect excretion of other
drugs.. may prolong some in the body and decrease others.
It acidifies the urine, and can cause burning urinary symptoms in very high doses as well.

[ConsiderThis]

And one worth testing for beyond the standard B12 serum testing--as Rose and Mrs. D have been pointing out for years, the serum measurement is just the grossest of tests, only revealing the amount of B12 currently in the bloodstream--not in the tissues where it is most needed. The homocysteine and MMA tests are better indicators of B12 deficiency--not perfect indidctors, but better.

Two things should be mentioned, however--injections are not the only way to go, as tehre is substantial evidence that sublingual mass B12 dosing can help rebuild stores just as well, and is far cheaper. (The reason for the mass dosing, in amounts 1000mcg or higher, is to allow for the 1-2% passive absorption capable even in those with no intrinsic factor to break the vitamin out of foodstuffs.) Secondly, many of the injections out there are composed of the cyanocobalamin form of B12 (as are many commercial supplements), and while most can rebuild stores on that, some who have inherent errors pertaining to methylation biochemistry would do better on one of the other forms, such as methylcobalamin, which doesn't have to jump through as many metabolic hoops to be utilized.

The cyanacobalamin shots are extremely cheap when given by oneself with a doctor's prescription. I think my B12 is running about $6 or $7 for 30 shots from Wal*Mart. Needles are another 26 cents each.

I understand that there may be side effects from the cyano part of it, and that had me particularly worried when I had a brown spot in my field of vision which was quite large, it looked like an eigth or an inch or a quarter of an inch.

But I noticed yesterday that it was gone. :)

So it could be that the Milk Thistle I've begun taking has "cleansed" it out of my system.

The only problem I have with the sublinguals, from my experience, is that if you are very sick where it's hard to get up or be up for very long, then the sublinguals which are very sweet can be bad for your teeth. I think that in a small way, second to stress, they have contribued to tooth decay and dental related pain that I've been having.

I think that taking them at night is probably the worst thing I did.

But other than that, since Methylcobalamin is so readily available, I think it's a great opportunity for people.

[ConsiderThis]

cramping and GI distress in doses as low as 1 gram a day, for some people.

Once you get into megadosing with it -- it becomes a DRUG.

It also changes the pH of the urine, and may affect excretion of other
drugs.. may prolong some in the body and decrease others.
It acidifies the urine, and can cause burning urinary symptoms in very high doses as well.

Did you LOVE the story about the doctor in England? or what. I just loved it, and am still smiling from it.

I don't know... the megadosing thing seems more of a worry to people who aren't needing it. My doctor had me having a shot a day and that made a huge HUGE difference to my peripheral neuropathy. And the numbness in my thigh, too. It had been so painful.

I think the doctor I had been seeing who was very whole person oriented had given me a prescription for a shot a day, too. But she didn't explain and I have a bit of brain damage so I don't always work things out.

But that prescription lasted a long long time, many refills, so I think it was for a shot a day over some period of time, and I didn't realize what I was supposed to be doing.

I would love to be able to talk without so much difficulty again. So for me, I'm sticking with more than one shot a month, which is about the same as one of the 1,000mcg sublinguals a day.

From my experience I think that a 5mg methylcobalamin sublingual is minimal if someone has significant nerve problems. Or maybe it's nerve problems and stress that creates the need for so much more.

But thanks for your thoughts. :)

[rose]

It has been over 30 years since proven that about 1% of large doses of B12 (even the worst form) will be absorbed by those with the most severe malabsorption. Since then it has been shown (to the satisfaction of some very good medical textbooks) that daily oral doses of 1000 - 2000 mcg is as good or better for most with severe malabsorption.

One who is taking methylcobalamin will do even better. And, of course, in that case many times more can be taken with total safety.

Dissolve, chew, or swallow.

rose

[ConsiderThis]

It has been over 30 years since proven that about 1% of large doses of B12 (even the worst form) will be absorbed by those with the most severe malabsorption. Since then it has been shown (to the satisfaction of some very good medical textbooks) that daily oral doses of 1000 - 2000 mcg is as good or better for most with severe malabsorption.

One who is taking methylcobalamin will do even better. And, of course, in that case many times more can be taken with total safety.

Dissolve, chew, or swallow.

rose

In the case of people with pernicious anemia if either the common B12 or Methylcobalamin is swallowed rather than dissolved under the tongue, none will get into the system for want of intrinsic factor.

[ConsiderThis]

This article is so... eye opening.

Please read it.

It's about a doctor who thinks, as I do from experience, that B12 is too little prescribed and that the low for B12 is too low.

I also have an article about a study on the low for B12:
http://www.health-boundaries-bite.com/new_folder/550-B12-Level.html

it's worth reading. :)

Mrs. D, I wish you would read the article. I'm beginning to think you were only responding to my phrase about vitamin C... not the content of the article.

:Sigh:

[rose]

Well over 30 years ago it was proven that about 1% of a large dose of swallowed cyanocobalamin B12 will get through when intrinsic factor is not present.

In fact, even if the stomach is gone, about 1% of the 1000 mcg dose will get through whether swallowed, chewed or dissolved.

rose

[rose]

Good for Dr. Chandy (even though some information in the article is incorrect). If he is treating people with B12, he is helping a lot of people. Those who are not helped will not be hurt by the treatment.

The article you refer to in post #8 is incorrect on some very important points. Pernicious anemia is NOT a blood condition (megaloblastic or macrocytic anemia some people with B12 deficiency develop). Pernicious anemia is the lack of intrinsic factor.

Not only that, but many develop severe damage without any sign of megaloblastic anemia (what the article incorrectly refers to as "pernicious anemia").

And many are damaged severely while blood B12 remains at or well above 200.

rose

[ConsiderThis]

Good for Dr. Chandy (even though some information in the article is incorrect). If he is treating people with B12, he is helping a lot of people. Those who are not helped will not be hurt by the treatment.

The article you refer to in post #8 is incorrect on some very important points. Pernicious anemia is NOT a blood condition (megaloblastic or macrocytic anemia some people with B12 deficiency develop). Pernicious anemia is the lack of intrinsic factor.

Not only that, but many develop severe damage without any sign of megaloblastic anemia (what the article incorrectly refers to as "pernicious anemia").

And many are damaged severely while blood B12 remains at or well above 200.

rose

Some information was incorrect in the article about Dr. Chandy? What was that? I wonder if I noticed it. I just thought that overall 900 plus improved patients was a good sign. :)

The blood looks different when there is megloblastic anemia.

I'm glad you understand about intrinsic factor. Whew!

I don't think there's much to be gained by splitting hairs about the old and new names for diseases. my mother had "pernicious anemia" and it drastically affected her life.

What is really important about the link in post 8 is that it talks about how the level for B12 is too low if you look at the situation from the point of view of what happens at the 550 level, which is WAY above the level considered to be healthy by many labs.

I hope people read the article and keep in mind that when their doctor tells them that a level of 180 or 210 is perfectly healthy, there is reason to doubt that is true.

:)

[SBGUY]

:mad:

In the case of people with pernicious anemia if either the common B12 or Methylcobalamin is swallowed rather than dissolved under the tongue, none will get into the system for want of intrinsic factor.

I am at a complete loss to understand my so-called Doctor, a so-called neurologist, who after diagnosing me with PA (Pernicious Anemia), and saying he wanted to put me on injections of B12, later denied my request for those injections, after trying the pills for 4 months of no positive effect to any of my myriad symptoms.

This from the same person who also denied me a spinal tap to rule out MS, after saying that the MRI of the Brain orbit and the absence of plaque was sufficient to rule out MS.

I have seen from countless sources that the lack of intrinsic factor makes the likelihood of absorbing B12 via pills is so unlikely as to make that a last option, not the first, and especially in those whose life has been profoundly impacted, as mine has. I can merely state that what I have experienced is that my nerves are like electricity is passing through my body, with constant tingling, vibrations, spasms, visual blurring, double/triple vision, strabismus that worsens with the exacerbation of my neurological symptoms, as well as diarrhea 5-12 times each and every day for years.

To speak of the confusion, memory, and profound fatigue, is to get into the areas where every single physician so far has thrown up his hands with statements like, "well with the number of complaints you have, it makes it very difficult to focus on any single one. What would you say is your chief complaint?". If your symptoms are so vast a list, how can a person, and why would they single out any one symptom as being the "chief complaint"? To do so, seems to me to be a misleading process, by singling out arbitrarily any single symptom.

Is this what we as patients are tasked with, making life easier for our Doctors? Honestly, how lofty and callous can this field get? Professional detachment is to me, a four letter word, and an arrogant concept that is merely an emotional out for doctors to not ruminate over the difficult diagnoses of their patients. If I were a doctor, I would live for the tough cases. I would revel in the joy of helping someone in a real way, rather than sending them away with a stupid look on their face, such as to suggest, "what just happened? God he did it again, he didn't do anything for me!"

I find it so hard to believe people who praise their doctors because I seem to have gotten every callous and cavalier individual who has ever been produced out of this medical system. I am so jealous to hear of people who speak highly of their physicians.

What kind of Doctor would say things like, "If you want that, you're gonna have to get another Doctor"?

I am unable to work, but more than that, I find it nearly impossible to function even around the house.

Just how does one go about finding a Doctor who is not immediately dubious or incredulous when presented a patient who has numerous symptoms, that actually match a disease, or malady, for which the same patient has already been diagnosed?

There must be some site that lists doctors that are truely compassionate for the PA/MS sufferers. I appreciate in advance any direction anyone can provide.

It's unfortunate, very fortunate, great, and sad that I find you all here to help me at least live with this terribly plaguing, perplexing, vicious disease.
I pray that someone out there can at least help me find the one last caring physician in Northern California, or North America, Hell I'll travel to get real help with this.
:grouphug:

[rose]

It is very difficult for most to find a doctor who isn't decades behind regarding B12. There's a lot of support for people with MS, but unfortunately there is very little for people already damaged or being damaged by B12 deficiency, and when the damage is allowed to continue long enough it can be similar.

Fortunately, in almost every B12 case the damage can be stopped, and in the US and many other places the patient can cover the need for B12 without a doctor.

Even those who lack intrinsic factor can get enough B12 to build stores by taking at least 1000 - 2000 mcg at a time (NOT timed release or sustained release). It must be all at once in order to absorb by default due to the large dose. And if methylcobalamin is the type of B12 taken, the result may be even better.

Most of the literature is scandelously out of date, so that even though this was discovered about 40 years ago, and has since been shown to be even more effective for many in the long run, most doctors do not know it. http://bloodjournal.hematologylibrary.org/cgi/content/full/92/4/1191

Please do read my website (it isn't real long, and the basics are there). Then if you have questions I will be happy to help.

rose

[cat265]

If taking large doses all at once under the tongue can get enough b12 into ones system then why do jabs? And when using jabs why are the loading doses so high? Is it even possable to get the same loading dose effect from methly. under the tongue?

[rose]

The loading dose is high because only a portion of the B12 delivered will be converted and stored. And because the B12 is usually delivered only once per month in that dose.

The same amount will not get through orally as with a shot, but the daily dose received orally is even better for many in the long run. Remember that only a portion of the B12 delivered by shot will be converted and stored, and the B12 is not being delivered constantly with shots as it is in daily oral doses.

It is not even necessary to take the B12 under the tongue. Taking a minimum of 1000 - 2000 mcg even in the cyanocobalamin form swallowed will take care of all but the rarest cases of severe malabsorption (pernicious anemia) just fine.

They continue to do "jabs" because most doctors (and reference materials) are decades behind and do not know that large oral doses work.

And methylcobalamin is even better. And when taking the methylcobalamin form, a person can take way more if they like. There's no reason a person couldn't take 5000 or more mcg more than once a day, in fact.

However, all of that is usually not necessary.

It is the dose, and in some cases the form, that is important. I would choose daily oral B12 over shots. Remember that it should be a minimum of 1000 mcg at a time for anyone, just in case malabsorption is severe.

rose

[cat265]

Thanks Rose, that was a good explanation. I happen to be visting the Pernicious Anemia Society forum and alot of people there were saying the oral dose not work well enough for them. So I was getting a little confused. I know I feel better taking the oral form.

[rose]

I'm glad it helped.

I wonder if they may not be taking enough, or maybe not taking it alone.

rose

[mrsD]

This one has positive things to say about the oral version:
http://www.pernicious-anaemia-society.org/forum/viewtopic.php?t=1162&highlight=sublingual

However, I don't think the ones they are taking are methyl form.

Some folks are doing methyl... and the references to "other boards" sounds
familiar to me!
http://www.pernicious-anaemia-society.org/forum/viewtopic.php?t=2044&highlight=sublingual+methylcobalamin

If people cannot convert cyano properly, then oral may not work for them.
Same with taking with food. ALL oral B12 should be taken on an empty stomach with no food following for at least 2 hours.

[rose]

It would be a small minority, but certainly there are people in whom cyanocobalamin cannot be converted. For those people, the methylcobalamin form would be very important.

rose

[mountainpass]

Hi! I am new to this forum and I feel like I might've won the lottery. I have been ill for 2.5 years. In Oct. of 2005, my doc prescribed Tequin for my supposed Legionnaires Disease (didn't have it in hindsight). I have been on disability ever since. Pre-Tequin I was a physically active, career, family woman. Since I've taken this antbiotic I have never been the same since. However, I have been dx'd since then with low potassium (I was hospitalized for 5 days due to that), low sodium, low ferritin (results was 6), low thyroid, and now my Naturopath says I have low B12. I believe in my heart of hearts, this has been part of my problem for the last 2.5 years. For the first time my B12 was tested January 30, 2008 and my result was 507 (range 200-900), and then retested in March of 353. I have been battling Neurological symtoms since taking Tequin. I have had nerve twitches, extreme fatigue, very, very sensitive to noises, cold feet, irritability, personality change. I feel noises in my forehead and throughout my body. My reflexes are very, very strong (I almost kick myself lff of the table). It's like my nervous system is highly exciteable. Since January I have experienced tingling feet and tingling hands, that gloved feeling (like I'm touching something, but I'm not) and my feet look purple like they are not getting any circulation. I have had a headache for 2.5 years. I have mental fog, and my memory is terrible. I have lost muscle mass also, even though I weigh the same. My ND put on methyl-b12 1000 mcg. I took 1000 mcg for 2 weeks, and bumped it up to 2000 mcg for one week. I got this horrible, horrible worse headache. My methyl-b12 was not Jarrows. I then tried one day of taking 5 lozenges and my headache was worse, and it put me to sleep. I slept for 12 hours that night. Last week I tried a B12 injection, the cyanaxo type, and that gave me huge headache, but 2 days later, I feel a little better. My question is, I feel there is no doubt that I need to raise my B12 level, and it's contributing to my health problems, but I seem to be very sensitive to B12. Is this possible? I just bought Jarrow's, and I took 1000 mcg yesterday and one today. I would like to take more, but when I took more last time, it really made me sick, as well as the injection. My ND earlier this week, too my MMA and homocysteine test. I don't have the results from that yet. I really feel this is a missing piece of the puzzle, so that I can feel better again. I'm having trouble taking more than 1000 mcgs a day of methyl b-12. Has anyone else had difficulty with this? I want to get well, so I want to take a lot, but my body isn't letting me. Thanks, and I appreciate any advice.

[ConsiderThis]

Hi! I am new to this forum and I feel like I might've won the lottery. I have been ill for 2.5 years. In Oct. of 2005, my doc prescribed Tequin for my supposed Legionnaires Disease (didn't have it in hindsight). I have been on disability ever since. Pre-Tequin I was a physically active, career, family woman. Since I've taken this antbiotic I have never been the same since. However, I have been dx'd since then with low potassium (I was hospitalized for 5 days due to that), low sodium, low ferritin (results was 6), low thyroid, and now my Naturopath says I have low B12. I believe in my heart of hearts, this has been part of my problem for the last 2.5 years. For the first time my B12 was tested January 30, 2008 and my result was 507 (range 200-900), and then retested in March of 353. I have been battling Neurological symtoms since taking Tequin. I have had nerve twitches, extreme fatigue, very, very sensitive to noises, cold feet, irritability, personality change. I feel noises in my forehead and throughout my body. My reflexes are very, very strong (I almost kick myself lff of the table). It's like my nervous system is highly exciteable. Since January I have experienced tingling feet and tingling hands, that gloved feeling (like I'm touching something, but I'm not) and my feet look purple like they are not getting any circulation. I have had a headache for 2.5 years. I have mental fog, and my memory is terrible. I have lost muscle mass also, even though I weigh the same. My ND put on methyl-b12 1000 mcg. I took 1000 mcg for 2 weeks, and bumped it up to 2000 mcg for one week. I got this horrible, horrible worse headache. My methyl-b12 was not Jarrows. I then tried one day of taking 5 lozenges and my headache was worse, and it put me to sleep. I slept for 12 hours that night. Last week I tried a B12 injection, the cyanaxo type, and that gave me huge headache, but 2 days later, I feel a little better. My question is, I feel there is no doubt that I need to raise my B12 level, and it's contributing to my health problems, but I seem to be very sensitive to B12. Is this possible? I just bought Jarrow's, and I took 1000 mcg yesterday and one today. I would like to take more, but when I took more last time, it really made me sick, as well as the injection. My ND earlier this week, too my MMA and homocysteine test. I don't have the results from that yet. I really feel this is a missing piece of the puzzle, so that I can feel better again. I'm having trouble taking more than 1000 mcgs a day of methyl b-12. Has anyone else had difficulty with this? I want to get well, so I want to take a lot, but my body isn't letting me. Thanks, and I appreciate any advice.

I'm so sorry to hear of your experience with medical help that was more debilitating that healing.

If you have ridges on your fingernails or are losing your moons, it is a sign that you may be low in B12.

There are so many different ways that someone can become low in B12. One of the ways is overgrowth in the stomach that makes getting B12 out of food nearly impossible.

If you can't absorb B12, then you may be low in hydrochloric acid. That is a condition which also tends to have the effect of making supplements that you take make you feel sick.

It is really important to keep notes when you take new things to help yourself, just listening to the "experts" is not good on an individual level. What is right for one person may not be as good for another.

You need to put your own health and health experience first. Use what you learn and keep notes so that you know what is true for you.


* You remind me that getting magnesium out of food is nearly identically difficult as it is to get B12 out of food. Headaches are often a result of low magnesium. I take magnesium for headaches, and it works great.