I lived by the 1mg of Hydroxocobalamin every other day until no further improvement for 2 years with some success.
I then questioned why only 1mg every other day. Very glad I did.
This is my evaluation of where the 1mg every other day came from: The powers to be in the UK banned all injections of B12 and took steps to take away a particular GPs licence to practice. The patients that were suffering wrote the powers to be and the BNF current standards were created which included the 1mg. The science of the GP was reviewed.
I have never reviewed that science and find it unlikely that the GP in his practice did not come to understand that some people needed more B12. I would not be surprised if the science of the GP includes some people need more B12. I would not be surprised if that is why the GP was prevented from prescribing B12 injections when the rest of the UK could resume.
This is conjecture and I am not a conspiracy theorist by any means. I am thoughtful.
So this leads me to a concept that is not intuitive. Without a test to determine how much B12 is most effective the only way to logically approach it is to take an amount until it has no effect and then reduce to see if that has an effect. Not desirable but may be more desirable than taking too little.
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WIZARD6787
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My doctor told me that 1mg took 48 hours to be absorbed so anything more was a waste because I could not absorb it any faster. (I don't know where he got this information)
I don't know enough to comment on the GP you mention or the B12 treatment regime in the UK as I am from NZ.
But I absolutely agree that a B12 deficiency should be treated on symptoms (take an amount until it has no effect and then reduce to see if that has an effect. )
My doctor has seen my improvement over the last 5 years and has never told me to stop what I am doing, But I do not think he will change his mind on "every other day until no improvement" because -
a) He has guidelines to follow (and at least he's doing that, a lot of doctors ignore them and won't go past 3 monthly injections no matter what the patient says)
b) He probably suspects my need to have daily injections is in my mind (I'm ok with that because, even if they are in my mind, it is working)
WIZARD6787 The GP you mentioned was suspended locally when his high usage of B12 was noted but was then reinstated. He was suspended again a few years later for something different which was deemed by those reviewing it to be experimenting on patients.
the logic for every other day is that the rate at which B12 is removed is highest when serum B12 levels are high. On average 50% of the dose is removed in the first 48 hours, so, in theory, injecting more frequently means more waste rather than more available B12.
There are a number of things that aren't fully covered in the argument that could mean that as a rule of thumb it doesn't work for everyone. Serum B12 can be bound to proteins that make it inaccessible and this may affect some people more than others.
rogergee excess B12 in blood, unbound to either a transport protein or a storage protein, is removed from the blood eg by the kidneys and excreted in urine.
Posted a while ago - dates back at least to this clinical trial, dating from 1965 "Comparison of hydroxocobalamin and cyanocobalamin in the treatment of pernicious anaemia" doi.org/10.1016/s0140-6736(... .... All based on hitting a 200 ug/ml target rather than any symptoms. Small sample size.
"The effect of a single intramuscular injection of 1000 µg hydroxocobalamin or cyanocobalamin was studied in 16 patients with pernicious anaemia in relapse, the end point being the time at which serum vitamin B12 fell below 200 µg per ml. In the 8 patients given hydroxocobalamin that time ranged from 4 to 10 weeks, mean 7.2, and in the 8 given cyanocobalamin from 1 to 6 weeks, mean 3.2. No significant difference was found in rise of Hb and packed cell volume.
A crossover trial was then made with monthly injections of the 2 cobalamins, each for 3 months, the dose being reduced to 500 µg after 6 months and to 250 µg after 6 months more and finally raised to 1000 µg every 2 months; 12 patients completed the course. Analysis of variance revealed highly significant differences between patients, doses and types of cobalamin. The last was the greatest, hydroxocobalamin giving higher values for serum vitamin B12 than cyanocobalamin.
In another trial 5 patients were given a single injection of 4000 µg hydroxocobalamin and 5 were given cyanocobalamin. The time before serum vitamin B12 fell to below 200 µg per ml was from 4 to 12 weeks, mean 8, in those given cyanocobalamin. One of those given hydroxocobalamin had a value of 680 µg per ml 19 months after injection; the time of fall in the 4 others was from 12 to over 82 weeks, mean 21.
The superiority of hydroxocobalamin over cyanocobalamin in maintaining normal serum vitamin B12 values leads to the conclusion that the former should be the standard preparation for treatment of pernicious anaemia; 4 initial injections of 1000 µg on alternate days, followed by maintenance injections of 1000 µg every 2 months, are suggested"
(posted an non-accessible abstract link, so here's the long version)
Thanks, that was interesting. The article was published in 1965, so for well over 50 years it's been known how greatly the effect of injections differ between individual patients. Still many doctors only care about the average, not the distribution around the mean.
I found an old book from the 1930s about blood disorders. Pernicious anemia was a big thing in those days and the first cure had recently been found and rewarded with the Nobel prize. They didn't even know what b12 was in those days. My impression when reading the text was that doctors then seemed much more observant of patients and aware of individual differences. Today many doctors seem to apply root learning and memorise cut of values and standard treatment like every three months and never go beyond that.
100%! When was the last time anyone had a physical exam where they actually looked at you. Remember those? Checking reflexes, thumping around various organs, looking at the tongue. And i was born in the 70s & i remember them! Blood tests seem to trump everything now. I have a GI doc that still does all that.
As was mentioned, "All based on hitting a 200 ug/ml target rather than any symptoms."
As mentioned in the article "The Many Faces of Cobalamin (Vitamin B12) Deficiency", "many generations of doctors have been
educated with the view that vitamin B12 deficiency exclusively presents itself with this type of anemia. ... The reason why some patients mainly present with megaloblastic anemia and others with neurologic symptoms remains unknown."
Presumably, focus in 1965, at the time of this article, was entirely on the population of patients with B12 deficiency with hematologic symptoms, which are known to clear with minimal treatment of B12 injections, and with no focus on the other population, which is to say, patients with neurological symptoms, which is a much tougher nut to crack.
Unanswered so far is the question, Where did the recommendation of two injections per week for patients with neurological symptoms come from?
The answer is implied by the "Many Faces" article mentioned above, in the section, "How should treatment be given?":
"In case of neurologic symptoms or abnormalities, it is suggested to administer hydroxocobalamin, 1000 mg once or twice weekly for a period of up to 2 years, and the package insert for hydroxocobalamin has included these particular instructions for several decades. ... Clinical practice has shown that in a substantial number of patients seen in a tertiary care setting, injection frequency cannot be reduced after the initial loading regimen."
The implication seems to be twofold: 1) there are no published studies indicating efficacy of this treatment practice, because this population has never been the focus of treatment research; and 2) clinicians (who DO pay attention to effects of treatment on symptoms) have noticed that much more intensive treatment is necessary for people in the neurological-symptom population.
Thank you all for your comments. It was helpful to me. I am going to continue to inject the amounts I inject. Considering trying a trial of four times a day.
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