Just received (via mail) my new B12 results. Went from 300 to 1880 in about 6-8 months. Took 5 mg sublingual methyl daily (semi faithfully).
Gosh - now I hope it isn't too high. don't see the dr. for anther month. Considering taking it less frequently.
Is 1880 too high?
Sydney

Glenn's answer to your same question asked on a different thread is right on. It is safe and positive to have a very strong B12 level.

rose

Hi Rose- I just want to double check with you as I know you are expert on this. I had very low B12 and neurosymptoms (dizzyness, parasthesias, decreased left hand function very min cognitive change) dxd in fall 2004. I had frequent B12 injections until recovery (no more dizzyness, very mild parasthesias). Then we went to 1,000 micrograms via shot 1x per month. Last fall I had a very slight increase in symptoms and my doc upped this to 1,00 micrograms 2x per month. The doc is worried this may be "too much" and I am worried that if we reduce it my myelination may decrease/symptoms may return. Do you know if there is any research about the effects of a high dose of B12 given over time and long term impact?

Ill look forward to your advice. I hope you are well.

Sincerely, Rachel Hitch

Hi Rachel,

Until Rose gets here.... here are some references I have in regard to B12 treatment. Most of the information I have has come through Rose .

You might want to talk to your doctor about trying oral supplementation (1000-2000mcg DAILY). Some people have reported that they have symptoms or slumps between the shots whereas the daily oral supplementation actually worked better for them...a more steady supply of B12. I would worry about whether you are getting enough B12. I would not worry about too much. Rose may have more to add when she sees this.


On dosage, from:
Vitamin B12 Deficiency
ROBERT C. OH, CPT, MC, USA, U.S. Army Health Clinic, Darmstadt, Germany
DAVID L. BROWN, MAJ, MC, USA,Madigan Army Medical Center, Fort Lewis,Washington

"Contrary to prevailing medical practice, studies show that supplementation with oral vitamin B12 is a safe and effective treatment for the B12 deficiency state. Even when intrinsic factor is not present to aid in the absorption of vitamin B12 (pernicious anemia) or in other diseases that affect the usual absorption sites in the terminal ileum, oral therapy remains effective.

"Although the daily requirement of vitamin B12 is approximately 2 mcg, the initial oral replacement dosage consists of a single daily dose of 1,000 to 2,000 mcg (Table 4). This high dose is required because of the variable absorption of oral vitamin B12 in doses of 500 mcg or less.19 This regimen has been shown to be safe, cost effective, and well tolerated by patients."


Regarding oral B12:
Goldman: Cecil medical textbook --- Saunders 2000
COBALAMIN DEFICIENCY.
"One option is intramuscular or subcutaneous administration of cyanocobalamin. . . . Oral cobalamin therapy in a dose of 1000 to 2000 mug/day has recently been shown to be as effective and possibly superior to the standard parenteral regimen. Both regimens give prompt and equivalent hematologic and neurologic responses, but post-treatment serum cobalamin levels are significantly higher and post-treatment methylmalonic acid levels are significantly lower with the oral regimen. Oral cobalamin, 1000 to 2000 mug [mcg]/day, is the treatment of choice for most patients."

Is Oral Vitamin B12 as Effective as Intramuscular Injection?
http://www.aafp.org/afp/20060101/cochrane.html#c2

On Oral Dosing
Comparing costs of intramuscular and oral vitamin B12 administration in primary care: A cost-minimization analysis. 2006

Oral vitamin B12 versus intramuscular vitamin B12 for vitamin B12 deficiency: a systematic review of randomized controlled trials. PMID: 16585128 June 2006

Oral cyanocobalamin supplementation in older people with vitamin B12 deficiency: a dose-finding trial. PMID: 15911731 May 2005


Hope this helps!

Cara

Rachel,

Cara's information is very good. She has taken what I did and run with it way beyond the goal posts.

There has been sooooo much research for so many decades that even a particularly good mainstream textbook has had no qualms for many years about saying B12 is safe in very large repetitive doses. And the B12 the textbook refers to is the cheapest in lowest in quality. If any were to cause a problem it would be the cyanocobalamin type.

In fact, in recent decades much research has shown that huge (daily injections, even in a person who cannot discard B12 with the urine) doses of methylcobalamin are safe.

If I were you, I would prefer to take at least 1000 mcg methylcobalamin, either in addition to or instead of the shots.

rose

Hi Everyone!

Hope all are well.

I just came from Neuro visit on Friday, I've been receiving b12 shots weekly since May. 1000mcgs.

Doc is shocked that all year my levels remained at 700, then increased this month to 821.........says by all accounts it should be in the "tens of thousands".

Still having nasty attacks/flares and being tested for a wealth of other vitamins to see what else I could be lacking.

Do you think he's right in saying my b12 levels should be sky high?

thanks,
lah

Finaly some else who has Subacute Combined Degeneration, I no longer feel all alone.
Mines is the worst my MD has ever seen, tell me do you suffer from short term paralysis of your arms and legs, or am I the only one?

Hi Dorvad,
How are you doing?

Short term paralysis? Sorry, no I can not say that I have that...........but it seems that I have EVERYTHING else that you can imagine.

How long for you to get dx'd from first symptom?
How low was your b12 levels?
How much b12 do you take?
What form?
Do you have any other health issues that may be involved?

My neuro thinks that the Medullary Sponge Kidney Disease that I have may have something to do with this.

Retesting me for some sort of mitochondrial thingie.

What are your symptoms?
Do they come and go regularly?
Do they sneak up on you in an "attack" or "flare up"
tell me tell me!!!!

thanks
lah

ps: with regard to the levels,
I read on the back of my GNS Gold Standard vitamins that my DH gave me for Christmas,
(and that may or may not -doc thinks not-have boosted my 700 level to 821--but did not prevent another nasty attack)
-any way on the back of the bottle it says
150 mcgs = 2500% of the RDA
so
no wonder he was flabberghasted at the 1000mcgs weekly for 8 months leaving me still with such low levels........
he just couldn't stop saying over and over "1000 mcgs!!!"
we even stopped at his collegues desk to chat about it on the way to the nurses station with my chart.
He tells the other doc and that guy says, "Gee, there's a real problem there"
no kiddin'

No need to feel alone. My damage is long untreated SCD also.

The kidneys can have an effect on how you use B12.

150 mcg is nothing for someone who malabsorbs severely, and it sounds like you do. We who malabsorb severely need the 1000 mcg or more, because only about 1% gets through by default.

rose

O Rose,
Yes, I guess the 150mcgs would be sort of a stretch, huh?

If you'd be so kind,
please point me in a direction of the kidney relation to b12.

Dr's looking at my 9 amino acids that are low, (most listed as rare defieciencies (whew sp!)
ordered another test (urine) to see whats being "dumped".

He's testing my b1, b6, E, Seleinum, L-Carnitine, L-Acetyleblah blah blah....
among other, pyruvic, lactic and ammonia levels........

Put off my mri/brain and spinal till JUne, yippee.....the last spinal was a real bummer.......

I, as always, so appreciate all your help.

And, is a neuro the doc to pull this all together, a metobolic doc? what would that be called?

thanks
lah