PDA

View Full Version : What is an appropriate B12 level




Sydney
09-27-2006, 11:55 AM
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
Sydney




mrsD
09-27-2006, 12:26 PM
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?

Vowel Lady
09-27-2006, 05:07 PM
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.:)

Sydney
09-28-2006, 01:21 PM
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
Sydney

mrsD
09-28-2006, 03:17 PM
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.

rose
09-28-2006, 06:26 PM
Important to note that although I have improved consistently through the last several years, it often did not feel that way. It can seem that improvement has stopped, sometimes for many months at a time, and then something changes.

It is not at all like getting over the flu or healing a regular wound.

Very weird process when damage is severe.

rose

lahgarden
09-28-2006, 08:06 PM
"Raising B12 levels is important because spinal cord degeneration leads
to severe impairment and even death"

If you're dx with subacute combined systems disease aka combined degeneration and you're taking the b12 shots is that all you can do?

Will it be cured?
Am I gonna go through these crazy symptoms forever?

I understand if this really what I have, that I have to take b12 shots for the rest of my life.

thanks,
laura

Vowel Lady
09-28-2006, 08:19 PM
A poster here (Consider This) has some very good/helpful information on B12.
She recommended that I read this (hopefully link will work). Interesting stuff:
http://www.health-boundaries-bite.com/new_folder/550-B12-Level.html

Sydney
09-29-2006, 09:57 AM
I have both conditions: RSD and Fibromyalgia. I am on those forums constantly and have tried everything suggested. I am also on the chronic pain forum . I see 2 doctors who specialize in alternative therapy. I even have gone under a magnet for weeks at a time. I am desperate to get out of this pain. It is now widespread due to trauma each time in various locations(neck and arms from computer, etc.) feet,legs, knees, etc.-overdid it one day and now am suffering permanently. Now even in my teeth rom dental procdure. Terrible wrist and hand pain from an IV which triggered off the rsd there. Also epidural triggred off RSD and FM in my lower back. Constant lb pain as well as everywhere else. I once was very active and now am like a vegetable. Gained 70 pounds from meds that never worked.
I was just looking for any additional advice by going to this forum. Thanks to all for your help. I'll take any additional suggestions
Sydney

rose
09-29-2006, 02:56 PM
Because of many variables, a blood serum B12 result doesn't tell the story. What for one person is a severely disabling and nearly deadly 300 will be contrast to another's completely healthy and vigorous 200.

For great information, provided by someone who understands the B12 issue, go to Cara's site: http://jccglutenfree.googlepages.com/

Mine is under construction, but I will be happy to answer questions here.

rose

mrsD
09-29-2006, 04:27 PM
have you had a Vitamin D level measured?

Because more and more information is being released about low Vit D and pain...
here is an example:
http://www.findarticles.com/p/articles/mi_m0ISW/is_247-248/ai_113806995/pg_1

We have a Vitamin D thread here... please look at it too!

crytears
09-29-2006, 11:40 PM
Rose...this is awesome news about your website.
I hope the word gets out regarding this important vitamin.
Its been 3 years since our first contact.
I was in terrible shape...its a wonder I ever found BT and able to communicate with you then.
I beleive I was close to dying....I told my husband earlier that summer, that I didn't feel like I was going to make it this time.
I was having spinal symptoms by then...I couldn't put my chin down because it felt like lightening hot poker going down my spine...i forget what its called.
My b12 level was 232 and I was using a vitamin suppliment drink that was filled with Spirulina (loaded with b12).
Who knows what my true level was back then.
With the Methyl B12 my levels are now in the 800's:)
I still struggle with other problems such as the Fibromyalgia and Crohns disease....but thats nothing compaired to how I felt 3 years ago.
Thank you Rose...you saved my life back then!
Blessings, Cheryl

diamondheart
10-13-2006, 06:03 AM
I have both conditions: RSD and Fibromyalgia. I am on those forums constantly and have tried everything suggested. I am also on the chronic pain forum . I see 2 doctors who specialize in alternative therapy. I even have gone under a magnet for weeks at a time. I am desperate to get out of this pain. It is now widespread due to trauma each time in various locations(neck and arms from computer, etc.) feet,legs, knees, etc.-overdid it one day and now am suffering permanently. Now even in my teeth rom dental procdure. Terrible wrist and hand pain from an IV which triggered off the rsd there. Also epidural triggred off RSD and FM in my lower back. Constant lb pain as well as everywhere else. I once was very active and now am like a vegetable. Gained 70 pounds from meds that never worked.
I was just looking for any additional advice by going to this forum. Thanks to all for your help. I'll take any additional suggestions
Sydney


Hi Sydney, I'm wondering if you have looked into possible food sensitivity/allergy issues? Have you checked out the Gluten Sensitivity/Celiac Disease forum for the neurological connections to gluten sensitivity? I'm including this link to The Gluten File/Fibromyalgia (http://jccglutenfree.googlepages.com/fibromyalgiachronicfatiguesyndrome) page too for more resources.

Claire

jtozer06
05-26-2009, 08:46 PM
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?

mrsD
05-27-2009, 02:44 AM
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.

jccgf
05-27-2009, 05:54 PM
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 (http://jccglutenfree.googlepages.com/b12deficiencysymptoms)! 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.

jtozer06
05-27-2009, 08:52 PM
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!

jccgf
05-27-2009, 10:18 PM
Here are some great articles available online:

AAFP on Vitamin B12 Deficiency (http://www.aafp.org/afp/20030301/979.html)

ORAL SUPPLEMENTATION WORKS FOR MOST (http://www.aafp.org/afp/20060101/cochrane.html#c2) (AFP article)

eMedicine link on vitamin B12 associated neurological diseases (http://www.emedicine.com/neuro/topic439.htm):

eMedicine on Nutritional Neuropathy (http://www.emedicine.com/NEURO/topic278.htm)

Emedicine on Pernicious Anemia (http://www.emedicine.com/med/topic1799.htm)



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 (http://archinte.ama-assn.org/cgi/content/abstract/159/12/1289)
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 :eek:, 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:



From: Laboratory Diagnosis of Vitamin B12 and Folate Deficiency (http://archinte.ama-assn.org/cgi/content/abstract/159/12/1289)
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. "



From: AAFP on Vitamin B12 Deficiency (http://www.aafp.org/afp/20030301/979.html)
"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."



From:
Disorders of cobalamin (Vitamin B12) metabolism:Emerging concepts in pathophysiology, diagnosis and treatment (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16814909&query_hl=3&itool=pubmed_docsum) 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."



Vitamin B12 Deficiency (http://www.aafp.org/afp/20030301/979.pdf)
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."


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

mrsD
05-28-2009, 01:56 AM
Never accept "normal" for B12 as an answer unless you get
the numbers.

According to the AAFP (American Association of Family Physicians) other testing should be done on anyone below 400.

Your supplement is too low. You need at least 1mg (1000mcg) of oral B12 in tablet form for it to be absorbed properly. Take on an empty stomach.

Many lab ranges in US are abnormally low... a sad fact of life.

Cara has given you alot of information to copy and take to your doctor.

Take care.

jccgf
05-28-2009, 07:15 AM
Also, this is a good time to start requesting copies of all of your lab work. This is just a good general practice. Having the lab report that shows the low B12 may be useful in the future to confirm with any new doctors that you were indeed B12 deficient.

MysteryWhiteBoy
06-06-2009, 01:06 PM
very informative thread...

i recently had my B12 level checked after telling my new doc about my 3+ years of pain in upper back/neck and down my left arm (now it's affecting my right side. i'm a musician (guitar player) and haven't been able to play without symptoms (burning/numbness in hand usually within a few minutes) for over 3 years. needless to say, this has been devastating.

i've had numerous tests (NCV/EMG, MRI, etc.)...the MRI from 11/07 found a 3 disc bulge at C5-C6 (mild stenosis) and a 2mm bulge at C4-C5. the NCV found bilateral cubital tunnel syndrome.

my new doc doesn't think these are enough to explain my complex symptoms and decided to test my B12 level. i am at 318 (the normal range on my test is 211-911). so, yes, it looks low. my doc told me to start on 1000mcg, but after reading many things about B12, i am confused and concerned.

-seems that methylcobalamin is the preferred variant; however, i've read numerous articles about potential dangers of taking this if you have mercury amalgam (dental fillings), which i have several of...mostly from childhood. has anyone else read about or heard of this?

-cyanocobalamin appears to be much more readily available in vitamin stores. yet another wonderful thing i've been reading about is the concern over "cyanide toxicity" due to the dosage and the way cyanocobalamin metabolizes in the body. again, i'm curious to hear people's thoughts regarding this.

i'm trying to take this information with a grain of salt and truly understand (and separate) what is accurate vs. overhyped paranoia. which is why i'm here (among other places).

i am currently taking solgar B12 1000mcg sublingual (just says "cobalamin", no variant)...

MysteryWhiteBoy
06-06-2009, 01:30 PM
i couldn't find an edit message function on the board, so my apologies for the quick reply addition.

one important detail i left out is that i've been a vegetarian for over 10 years...but my diet does include dairy (esp. cheese) and eggs (my only known sources of B12 from food). thought it might be important to factor in with my original post.

mrsD
06-06-2009, 01:52 PM
Actually the methyl version is the preferred one for those suspected of mercury issue.

buck123
10-02-2009, 07:30 PM
Well, I don't know where to start. About a year ago I put my beloved Maggie Mae (Dog) down...it was the day after Thanksgiving. I thought I was feeling depressed and this was normal because of the death. It got much worse. I thought then it was winter blues. It got much worse...I was thinking of which way to end my life. Had a routine Doctors visit and found my B12 was 74!!! Did you read that? 74! It wasn't this low or even close to that the year before. So, I do home injections now, I did 1000 mc per day for a week then once a week for a monthe now I am once a month forever. Well, so I thought. Just did the repeat of the labs... 168. I am low on Iron as well, you know, HGB, HCV, I don't have the paper in front of me but there were like anout 8 things low and two high one of which was chloride. Any ideas on what or where to go from here? The Doctors aren't really as concerned as I am.

mrsD
10-02-2009, 11:07 PM
I think you should be on oral daily therapy.

You may not be converting cyanocobalamin properly either, so use
methylcobalamin orally 5mg a day on an empty stomach.

This product is available online from some discount suppliers.
It is less common in local stores. Most here use iherb.com

We have had members here test over 1000 after a few months on this, and some test over 2000!

This is an informational thread with links:
http://neurotalk.psychcentral.com/thread85103.html

I'd get tested for Vit D as well. Depression can improve if you are low in D and fix that.

buck123
10-03-2009, 07:33 AM
Thank you I will try this... anything to get out of this funk and my vitamin issue under control.

jccgf
10-07-2009, 02:50 PM
Buck,

Have you been tested for celiac disease/ gluten sensitivity?

Check out the link in my signature... and scan the right bar for the page on diagnostics (near the top) and iron deficiency (near the bottom). There are also some good overview articles linked at the bottom of the main page.

B12 deficiency, iron deficiency, and other nutritional deficiency are common in celiac disease/gluten sensitivity, as is depression.

So sorry about the loss of you beloved Maggie. It took me a long while to readjust after losing my dog, too.

Cara

Shelliet
06-05-2010, 06:36 PM
I went to the doctor for extreme dizziness and low blood pressure they diagnosed me with vertigo. Come to find out I have an extremely low B-12 level. I am wondering if I should do the shots or the sublingual drops.

Kitt
06-05-2010, 08:34 PM
I went to the doctor for extreme dizziness and low blood pressure they diagnosed me with vertigo. Come to find out I have an extremely low B-12 level. I am wondering if I should do the shots or the sublingual drops.

What does your doctor advise you to do?

glenntaj
06-06-2010, 07:09 AM
--with that low a level, I'd still do the daily megdosing, sublingual or otherwise, probably in the neighborhood of 3000-5000mcg daily to start, and methylcobalamin (rather than cyanocobalamin--and you'd want that in shots, as well). Easy enough to get on-line, and even in some stores now, and not expensive.