hi all, i've read alot here about b12,
my question is this.....my b12 level is 296, my doctor says this is normal and i need not to worry about anything. but on and off for the last year i've had periodic numbness in my hands and feets. now i have these electric shock feelings/head rushes that start from my upper back to the lower part of my brain. i have low ferritin 15.
the fact that my symptoms come and go, would this be something that would be b12 symptoms? or do b12 symptoms stay consistent with out a lot of good days? im not taking anything right now for the b12, just 300mg a day of iron to get my ferritin back up.

thanks for any advice!

jane

jane,

Unfortunately, your doctor is wrong. A level of 296 is suboptimal, and many labs have even begun to footnote that levels under 400 should be further investigated particularly when neurological problems are evident.

I had symptoms on and off for 3-5 years before they began to cascade seriously and relentlessly during the last six months before finally getting a dx. My level at the end was 294 (150-1100), and thankfully I had a neurologist who realized that was too low. I've always wondered how high my B12 level was when I first began showing symptoms.

My symptoms did come and go in the early years, often felt like flares that would worsen for days/weeks at a time and then subside. But... at the end... new symptoms and more serious symptoms just kept adding on and they were with me daily. I started having the balance problems and those were sporadic, lasting days at a time, and then maybe a week or two before another spell.

Do yourself a favor and either find a new doctor or better yet, educate your current doctor with some of the articles posted in the second link. I have another (full text) I could send you if you pm me with your email addy. But, you can also fix yourself by taking 1000-2000mcg of oral B12 daily of methylcobalamin (cyanocobalamin works for most people, but methylcoblalamin is the active form and thought to work even better). My guess based on personal experience is that those symptoms would begin to resolve within 3-6 months time. I had improvement within 3 weeks, but it also took years to be symptom free.

You should pursue WHY you are iron and B12 deficient, and probably be tested for other nutritional deficiencies. That is why it is worth educating your current doctor or finding a new one that already knows. You might try a neurologist... it was the only specialist I saw who thought of B12 deficiency. Might also see a gastroenterologist for testing for celiac disease, but be sure to do your homework on that, too, because there are pitfalls in the diagnostic testing.

Here is my story of B12 deficiency:
http://jccglutenfree.googlepages.com...ciencysymptoms
and some info on diagnostics and dosing for B12 deficiency:
http://jccglutenfree.googlepages.com/b12deficiency
And how I came to realize I had gluten sensitivity:
http://jccglutenfree.googlepages.com/thestory

Have you ever been screened for celiac disease/gluten sensitivity? B12 deficiency and especially iron deficiency warrant that testing, unless some other cause for your deficiencies has been determined. Diagnostic info can be found in The Gluten File link... scan the right bar for topics.

Thanks for answering!

Yes my doctor is not supportive. My ferritin was at 13, at which point she said that it was below normal and to take iron tablets, when I took them for 3 months and got retested it was up to 20 and she told me to stop the iron. Immediately I felt bad again but trusted what she had to say. 3 months later got retested and my ferritin dropped back to 15. I have heavy monthly bleeding. So I took it upon myself to take the iron again, even the 15 is supposedly in the "normal" range.
I was the one that asked to be tested for b12 because i had mentioned on and off numbness in my hands/feet and occasionally other place and now these electric/headrush pains, but she never acknowledged these symptoms. I guess I am worried that perhaps it is MS or some other nero condition, since everything I read was people with low b12 talking of constant symptoms and my just come and go depending on the day and conditions. My guess is my b12 is just newly dropped in the last few years for some reason.
Perhaps I need to talk with her further, but maybe in the mean time take oral supplements and see what happens.
Now my multi-vitamin has b12 in it, is it okay to take 1000 mg a day along with the b12 in the multivitamin?

thanks again for taking the time to respond

jane

second the thought on celiac/gluten testing....but doubt this doc will oblige...check out enterolab....the B12 in your multi is probably not being absorbed....and 1000 mcg a day is not much.....i would try at least 2 and maybe 3 times that....ON AN EMPTY STOMACHE.....you want the number to be over 500 when/if they retest....if you are of a certain age (perimenapausal) you may want to consider some surgery on that front....ablation maybe.....perhaps you are def. because it is being used too quickly....i cant remember the proper ferritin levels....but if you need to supplement to stay in the norm.....perhaps the reason needs to be addressed.
good luck

hi pabb,
thanks for the reply, im only 29, so the changes of life shouldn't be here yet. i do have heavy menstrual bleeding, which i believed caused the low ferritin, just don't know why my b12 is only 296. my doctor isn't a help and looks at me like im crazy whenever i tell her of my symptoms. so perhaps i should try the b12 oral supplements and see what happens. i know it's important to find an underlying factor, but i just don't know how to get through to her.

also can people have low b12 just do to the fact that they don't eat meat regularly? i know vegans have this problem sometimes. i do eat meat, but not that often, maybe 1-2 times a week, sometimes none.

thanks for the advice!

While a strict vegetarian diet can cause B12 deficiency, it takes very little meat to provide adequate levels of B12. The cause of B12 deficiency is not usually dietary (except possilby in strict vegetarians).

B12 deficiency can be caused by many things. The main cause is thought to be the autoimmune disease pernicious anemia, where one lacks the intrinsic factor to process B12. You could eat an entire cow (little exaggeration here ) and not get the B12 your body needed, because it cannot process it, if this is the case.

Other causes can be gluten sensitivity/ celiac disease (also autoimmune, the intestines are damaged and cannot absorb B12), over use of acid blockers which also block absorption of important vitamins, low stomach acid, h. pylori infection, inborn metabolic problem, tapeworm, some medications are thought to deplete B12, like metformin, birth control pills deplete B vitamins, nitrous oxide can deplete B12, and more.

Forgot to mention, the liver stores enough B12 to last for 5 years, so by the time someone shows a vitamin B12 deficiency... it usually means there is something of a long lasting nature going on to have gotten there. It is another reason why diet is rarely the cause except for very strict vegetarian, because one can typically rely on their 'stores' during periods in between eating dietary sources.

My symptoms definitely waxed and waned early on. I would think B12 deficiency first as the reason for your symptoms, although celiac disease, MS, lyme disease... all have similar symptoms. I've been reading forums for almost a decade now, and many, many people have had symptoms caused by B12 deficiency with levels in the 200-400's. You absolutely want a level above mid-range, preferably in the top quarter to over the top.

Do not worry about too much B12, but you should take it with a B-complex because B's need each other. 2000mcg daily of B12 would be a good amount, until you can determine you are top of range, and then you can probably cut back to 1000mcg daily as a maintenance dose. A multivitamin with a "B-50" level of B's would be a good idea.

While your low ferritin might be caused by heavy monthly bleeding, that is an assummption. Since you are low in both iron and B12, I'd consider looking for a malabsorption problem, as well.


You might find a doctor willing to look for other deficiencies, especially vitamin D, another one people are commonly deficient in... and associated with autoimmune diseases, cancers, bone disease, etc.

Do you have any other symptoms? Any GI symptoms? (You can have celiac disease without GI symptoms, but having any would be meaningful) Is there any family history of autoimmune disease? thyroid disease? RA? diabetes? MS?

Some 250 symptoms are associated with gluten sensitivity/celiac disease, most atypical (not GI). Symptoms can vary greatly... constipation or diarrhea or no GI problems whatsover. Here are two good overview articles on celiac disease:

Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD (AAFP)
http://www.aafp.org/afp/980301ap/pruessn.html

Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think by David A. Nelson, JR, MD, MS (AAFP)
http://www.aafp.org/afp/20021215/2259.html

btw... NONE of the eight different doctors I saw recognized any of my symptoms to be related to B12 deficiency... yet turns out they were all relatively common symptoms. The neurologist finally identified with the "buzzing" feeling I had in my legs, as he had remembered another patient with B12 deficiency complain of that sensation. That was an afterthought on my 3rd and final visit with him. so..I don't know why are doctors don't know to recognize symptoms, and don't know that low normal levels are a problem. In some other countries, lab lows are set at 500.


You need to pursue this all further, one way or another. There is much you can pursue on your own, but it would be best to find a doctor who took this all more seriously. You want to fix this now.... not later when things are even worse.

I don't know alot about ferritin/iron, but from what I've learned from those who do, 20 is a dismal level... bottom of range. I believe optimal is more like 40-60.

Now, high iron can be dangerous... but high is over 80.

Hi again!
Yes from what i read my ferritin is pretty low, and needs to be up dramatically, that's why I was surprised when I got my level up to 20 she told me to stop my supplements, the moment I did I went back to the fatigue, shortness of breath etc. So I told her I was going to continue taking them and that I would get my level tested every 3 months or so to make sure it was at a safe level.
I will make sure when I get my ferritin checked, she does my b12 as well.

Thanks again!

jane

thanks for all this great information!