B 12 results, Huge improvement. too much?
 

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

No, it is not too high
 

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 beglobal,

I can offer a few articles about B12 deficiency, and what sort of symptoms may accompany it~ The symptoms can be wide ranging and include neurological, neuromuscular, cognitive and other problems.

B12 isn't any sort of cure all, but in those who have underlying B12 deficiency, it can literally be life saving. B12 deficiency is often missed because doctors don't think to test for it, and because lab ranges are set too low.

Hope this helps!

Cara




eMedicine link on vitamin B12 associated neurological diseases:

AAFP on Vitamin B12 Deficiency

Subacute combined degeneration: clinical, electrophysiological, and magnetic resonance imaging findings JNNP

Emedicine on Pernicious Anemia

PDRHealth on Vitamin B12

Life Extensions magazine article on B12

And here is a list of symptoms that Rose has frequently posted for us, but no list is complete:

Quote:

Goldman: Cecil medical textbook --- Saunders 2000 page 865 TABLE 163-4 -- NEUROPSYCHIATRIC ABNORMALITIES * THAT MAY BE CAUSED BY COBALAMIN DEFICIENCY Paresthesia Depression Impaired vibration sense Paranoia Impaired position sense Listlessness Impaired touch or pain perception Acute confusional state Ataxia Hallucinations Abnormal gait Delusions Fatigue Insomnia Memory loss Apprehensiveness Disorientation Psychosis Obtundation Slow mentation Decreased reflexes Paraphrenia Weakness Mania Decreased muscle strength Panic attacks Romberg's sign Personality change Increased reflexes Suicide Spasticity Babinski's sign Lhermitte's sign Urinary or fecal incontinence Urinary urgency or nocturia Impotence Abnormal smell or taste Decreased vision or optic atrophy "*These abnormalities may be present in any number or combination in a given patient. They are seen frequently with or without any of the hematologic or other abnormalities listed in Table 163-3."

Hello BeGlobal...
 

B12...well you basically cannot live without it.

You could say it is a "global" vitamin.;)

While it is not on the list provided by jcc, B12 has recently been found
to be necessary to prevent bone loss.
http://www.sciencedaily.com/releases...0421235233.htm

I am wondering as well, what those links are in your signature?
I typically don't click on hyperlinks, so I am interested. Do you use those products? Is that why they are there?

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

b12 levels
 

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?

hey fellow SCD'er!!!!!!!
 

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

kidneys how?
 

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

Kidneys and cobalamin (B12):

The information goes back decades, although researchers still are trying to better understand the connection between kidneys and cobalamin. This is one of the issues about which mostly questions remain.

http://www.metabolismjournal.com/art...00661/abstract

This is very interesting. Maybe one of our more brilliant members can shed some light.

From: Megalin is essential for renal proximal tubule reabsorption and accumulation of transcobalamin-B12


From: http://ndt.oxfordjournals.org/cgi/co...ull/17/11/1867

Sure is some fascinating newer stuff to read! I'm not saying any of this is your problem, just providing some of the interesting literature that has been coming out as a result of more attention being paid to the kidney/B12 connection.


rose

Kidneys and cobalamin (B12):

The information goes back decades, although researchers still are trying to better understand the connection between kidneys and cobalamin. This is one of the issues about which mostly questions remain.

http://www.metabolismjournal.com/art...00661/abstract

This is very interesting. Maybe one of our more brilliant members can shed some light.

From: Megalin is essential for renal proximal tubule reabsorption and accumulation of transcobalamin-B12

rose

The information here has been extremely helpful -- thanks to everyone.

Rose, on your website you say that "Hydroxocobalamin is generally preferred over cyanocobalamin" and that "Methylcobalamin has some advantages neither of the other types do."

I've had a lot of trouble with medications that have methyl compounds, so I'm particularly interested in the hydroxocobalamin. Can you say more about its advantages? And do you -- or anyone -- know how to find it in an oral form?

Also what would be the dosage of either of those alternatives that would be equivalent to 1000 mcg of cyanocobalamin?

I am continually amazed at how
 

uninformed doctors are.

They think that B12 is absorbed in the body orally like a "drug"?

250mcg is not likely to provide enough daily orally by passive absorption.
Usually only 1% is absorbed orally and that only it taken on an empty
stomach.

RDA means nothing when B12 is listed on a label.

The confusion also comes from the fact that IM injected B12 is 1000mcg/dose.
One cannot compare injectable and oral AT ALL... B12 is not like DRUGS...
which are mostly absorbed. If doctors would sharpen up and learn this,
much suffering could be ended! :confused:

well, actually
 

mrsd,
My neuro doc poo-poo'ed the idea that the 150mcgs in the oral vitamin was helping,
that was my brainiac idea.

but while he was repeatedly exclaiming about the amount I've injected, it wasn't until I read that vitamin label, and saw what is considered--
(by who? RDA folks? who ever in the world they are--maybe they are the same folks to come up with the range for the b12 blood test 200-1000???!!)
-- a lot of b12..........

then again, at my urging my PCP tested my b12 levels, and at 220 - pronounced them "normal".....and that REALLY ticks off my neuro (cause 5months passed in the process)..........so yes, I guess the docs have a bit of homework to do.

please.....bear with me, so because of the complexity of the b12 molecule, and all it's applications, and all the possible points of breakdown in the process..........is THAT why it's not absorbed "like a drug". It's got to bind to other available molecules?

Rose,
thanks once again for the info.
I'm going to research the cublin & megalin.
Funny how I wrote to my kidney doc and asked if he's treated anyone with SCD, and if there was a connection to the kidney.

He had no idea, and nicely put me off, saying he would be available if the other docs wanted to chat.

I am lucky to have this place to look for help. As it's so frustrating to expect help from the usual channels.

lah

The 150 mcg dose would be plenty and then some for a person who malabsorbs only moderately. For instance, if you lack sufficient acid to break B12 out of food, but still produce plenty of intrinsic factor, you would absorb from even a much smaller dose.

But when one lacks intrinsic factor, only about 1% of the 1000 mcg is absorbed, and 1% of 150 mcg would probably not even be absorbed, and if it were it would be so little as to be less than a drop in the bucket.

B12 must jump though lots of hoops to get through. And once it gets through, if it is not methylcobalamin it needs to be converted to it.

I know of at least one brand of 1000 mcg oral hydroxocobalamin. "Pure" brand. I think it is available through "health care providers" and at very specialized supplement and herb shops.

Most of the docs only need to catch up on about 50 years worth of homework. Unfortunately, even those who care to refer to a medical reference will get the same old bad information. Editors are the ones who should be drummed out of the business.

Yes, hydroxocobalamin is better than cyanocobalamin, and methylcobalamin is better than either of those.

rose