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/articl...113806995/pg_1

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

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

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 page too for more resources.

Claire

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.

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.

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!

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:

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

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.

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.