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Old 09-27-2006, 11:55 AM #1
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Default What is an appropriate B12 level

My B12 level is 485. I take 5mg. sublingual b12 methyl type.
What should your B12 level B
I have Fibromyalgia and RSD (nerve condition) and am in pain constantly.
Thanks
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Old 09-27-2006, 12:26 PM #2
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Question you are borderline in USA...

In Japan, 550 is the cut off for "normal". They have higher standards than USA.

You should strive for 1000 or more since you have significant issues.

It takes time...and be sure to take that B12 on an empty stomach. There
should be nothing in your GI tract to interfere with absorption. Only a small
percentage is absorbed with each dose.

How long have you been using the B12 at 5mg range when you had your test?
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Old 09-27-2006, 05:07 PM #3
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Did you see my post? My level was 595 recently. I thought this was fine. However, I have lots of problems with fatigue. When I started taking the 1000 mcg of B12, there was improvement. I'LL TAKE IT! This stuff really intriques me.
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Old 05-26-2009, 08:46 PM #4
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Quote:
Originally Posted by mrsD View Post
In Japan, 550 is the cut off for "normal". They have higher standards than USA.

You should strive for 1000 or more since you have significant issues.

It takes time...and be sure to take that B12 on an empty stomach. There
should be nothing in your GI tract to interfere with absorption. Only a small
percentage is absorbed with each dose.

How long have you been using the B12 at 5mg range when you had your test?
So how low is too low? I've been searching online, but haven't really found a solid answer.
I'm 20 years old and went to the emergency room a few months ago with dizziness, fatigue, and pain and numbness in my hands and feet. After an MRI of my brain blood tests, I was told they didn't know what was going on and to see a neurologist if I was "that concerned." I went and they said according to my blood tests from the ER, my b12 levels are "lower than preferred." They were like 246.

They didn't really say anything, other than to take a vitamin. I haven't been taking it every day, but I feel like I should be doing more. I'm going to go back to a doctor soon and see what they think/ask for some b12 shots. Is that reasonable? Am I worrying too much?
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Old 05-27-2009, 02:44 AM #5
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Quote:
Originally Posted by jtozer06 View Post
So how low is too low? I've been searching online, but haven't really found a solid answer.
I'm 20 years old and went to the emergency room a few months ago with dizziness, fatigue, and pain and numbness in my hands and feet. After an MRI of my brain blood tests, I was told they didn't know what was going on and to see a neurologist if I was "that concerned." I went and they said according to my blood tests from the ER, my b12 levels are "lower than preferred." They were like 246.

They didn't really say anything, other than to take a vitamin. I haven't been taking it every day, but I feel like I should be doing more. I'm going to go back to a doctor soon and see what they think/ask for some b12 shots. Is that reasonable? Am I worrying too much?
Yes, your level is low and you should be concerned.
Here is a B12 information thread:
http://neurotalk.psychcentral.com/thread85103.html
Injections are not necessary, but you have to use the proper supplement and take it correctly orally.
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Old 05-27-2009, 08:52 PM #6
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Originally Posted by mrsD View Post
Yes, your level is low and you should be concerned.
Here is a B12 information thread:

Injections are not necessary, but you have to use the proper supplement and take it correctly orally.
Well I went to a new doctor today (I haven't had a regular doctor since I've been up at college. So 3 years...). She claims that my previous b12 level was normal, fine, nothing to worry about, etc. I'm getting blood work done tomorrow to make sure it's not lower or anything, but she's convinced that it's not the problem.

She wants to look into Vasculitus, Lupus, and Raynaud's. I'm definitely no doctor, but some of those just don't seem to fit.

I'm definitely going to keep taking the vitamin my mom got me (it's got 1333% daily need of b12 (as Cyanocobalamin))


Thanks for your help!
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Old 05-27-2009, 10:18 PM #7
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Here are some great articles available online:

AAFP on Vitamin B12 Deficiency

ORAL SUPPLEMENTATION WORKS FOR MOST (AFP article)

eMedicine link on vitamin B12 associated neurological diseases:

eMedicine on Nutritional Neuropathy

Emedicine on Pernicious Anemia



I also have a great article, not available online, but I could email to you if interested:
Laboratory Diagnosis of Vitamin B12 and Folate Deficiency
A Guide for the Primary Care Physician
Christopher F. Snow, MD

Any of these would be good to hand off to your doctor, but the Snow article is probably the best. It discusses the significance of low normal B12 level.

Lab lows are typically set around 150-200 depending upon the lab, but anything under 400 should be considered suspicious, especially when accompanied by neurologic symptoms.

It took me eight specialists and 3 years before a doctor thought to test me for B12 deficiency, but luckily the one who did realized that 294, although still in low NORMAL range... was too low.

You should actually be taking 1000mcg daily, which is 16,666% of RDA. I know it sounds hefty , but it is standard treatment for B12 deficiency.

I suspect your symptoms could all very well be related to the low B12... your level is lower than my level was... and I had a a very long laundry list of symptoms by the end... that all resolved over time with B12 supplements.

If you didn't improve in three months time, it wouldn't hurt to continue looking for other causes. Many things can cause neurologic symptoms, and often times several conditions can co-exist.

Your doctor, if s/he understood that your low B12 was in fact a problem, should start by considering what may be causing your low B12.

The most common cause is pernicious anemia, an autoimmune disease that causes a lack of intrinsic factor needed to process B12. There are antibody tests than can be run. (anti-parietal, anti-intrinsic factor)

Celiac disease, another autoimmune disease triggered by dietary gluten (wheat, barley, rye) can cause B12 and other nutritional deficiency, due to malabsorption. You can have gluten sensitivity without testing positive for celiac disease, something often not understood by our doctors. There are antibody tests that can be run (anti-tTG (shows celiac disease), antigliadin Iga,IgG (shows gluten sensitivity), total Iga (rules out IgA deficiency, a condition which can false negavive results on the other tests)

Over use of antacids or a strict vegetarian diet can cause B12 deficiency.

Achlorhydria, low stomach acid can cause B12 deficiency.

Tapeworms can cause B12 deficiency, and believe it or not, I've met two people via the Internet who had B12 deficiency caused by tapeworm!

Exposure to nitrous oxide can cause B12 deficiency.

And... there are yet other causes.

If your doctor is willing to keep looking, s/he might want to start by ruling out these things. Sometimes a B12 deficiency may be related to a temporary problem, like in the case of a tapeworm, but more often that not it is with you for life. Don't let any doctor tell you that you can stop with the supplements once your level comes up. Do you have any family history of autoimmune disease? That would make pernicious anemia or celiac disease more likely possibilities.

An elevation of methylmalonic acid or homocystein levels can indicate B12 deficiency despite normal B12 levels, but these can normalize quickly. If you've already been supplementing, I'm not sure these tests would be that useful anymore.

Also, I have some sources I can share on diagnosis and dosage:

Quote:

From: Laboratory Diagnosis of Vitamin B12 and Folate Deficiency
A Guide for the Primary Care Physician
Christopher F. Snow, MD
"As discussed above, patients with Cbl deficiency may have overt neurologic disease in the absence of hematologic findings. Patients with neurologic symptoms and signs and a normal complete blood cell count
require a modified diagnostic approach because of several considerations.

First, folate deficiency is an unlikely cause of neurologic disease. Second, the neurologic disease of Cbl deficiency may be irreversible if treatment is withheld or delayed; because Cbl therapy is non-toxic, the risk-benefit ratio favors treatment in questionable cases. "
Quote:
From: AAFP on Vitamin B12 Deficiency
"Diagnosis of vitamin B12 deficiency is typically based on measurement of serum vitamin B12 levels; however, about 50 percent of patients with subclinical disease have normal B12 levels."
Quote:
From:
Disorders of cobalamin (Vitamin B12) metabolism:Emerging concepts in pathophysiology, diagnosis and treatment Lawrence R. Solomon, 2006
"Since cobalamin, methylmalonic acid and homocysteine levels fluctuate and neither predict nor preclude responses to cobalamin, cobalamin therapy is suggested for symptomatic patients regardless of the results of these diagnostic tests."
Quote:
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, costeffective, and well tolerated by patients."
Quote:
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."
Hope this helps! It is important you understand all this, even if your doctor doesn't! B12 deficiency is nothing to mess with or take lightly!

Cara
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Old 05-27-2009, 05:54 PM #8
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Quote:
Originally Posted by jtozer06 View Post
So how low is too low? I've been searching online, but haven't really found a solid answer.
I'm 20 years old and went to the emergency room a few months ago with dizziness, fatigue, and pain and numbness in my hands and feet. After an MRI of my brain blood tests, I was told they didn't know what was going on and to see a neurologist if I was "that concerned." I went and they said according to my blood tests from the ER, my b12 levels are "lower than preferred." They were like 246.
Am I worrying too much?
Ya know... they need to do a better job impressing on patients what a signficant finding of a low B12 level really is. Mine was 294 after several years of symptoms. Thankfully, my neurologist thought to test for it as parting thought.. but not until after I'd seen many, many doctors over several years. I got a phone call saying I was a litte low and should take 1000mcg daily of B12. That dosage amount was stressed. But, I had no idea that B12 deficiency was the cause of ALL my symptoms! or that it could such serious damage.

You need to take at least 1000-2000mcg daily. Forever. Cyanocobalamin should work, but many of us feel the methylcobalamin type works better.
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Old 09-28-2006, 01:21 PM #9
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Default b 12 REPLY

i HAVE BEEN TAKING THE b12 for about a month or so daily faithfully. Prior to that was inonsostent taking in for about a year. Can't type muh - arms killimg me. the I was on mt feet too long and now have the FM there. A simple dental procedue (panorama x ray) where I just rested my top teet on a plastic tube for a minte - set off severe pain in about 6 of my top teeth. This condition is horriblw. It goes way beyond FM and RSD.
How long to get to 1,000 B12?No injections
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Old 09-28-2006, 03:17 PM #10
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Red face gosh...

Sounds like you are in terrible pain.

This forum is not a diagnosis forum, and we here cannot "treat" illnesses or
give you expectations beyond that which is on the net.

If you have RSD, that is another different issue. Full body RSD is not
common, and you should talk to the patients on that forum here.

Raising B12 levels is important because spinal cord degeneration leads
to severe impairment and even death.

We cannot separate out your various symptoms on an internet board.
All you can do is take what you know you are low in, and wait/hope that
improvements follow. Rose herself has waited years, but has had steady
improvements with her journey from very low B12 levels that were ignored
by doctors. (until a one day one doctor noticed it).

I am sorry that there is no quick solution for you, in this area.
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