View Full Version : Is this a low b12 result?
I had a b12 test done last week to rule out a b12 deficiency, because I'm about to be officially diagnosed with MS.
The b12 test that I had came back as 345. Is that a low result?? (the report said normal range was 130 - 770.
glenntaj
06-15-2007, 07:13 PM
Depending on what units that test is based on--but if it is the usual ng/ml, I would say that is too low. In fact, I would say the whole range is too low. (Most parts of Europe, and Japan, start the low end of the range at 500/550; and the best have no upper limit, as B12 has no known toxicity level.)
That level is suspect, and should probably lead to further testing of homocysteine and MMA (though many doctors are not aware of this).
Many of us here are convinced from the research that Rose and others have done that our serum B12 levels should be in the four digits, and that if one is having any sort of neurological symptoms, we should be taking doses of a minimum of 1000mcg of B12, preferably methylcobalmin, each day. (That particular form may be neuroprotective and has to jump through fewer metabolic hoops in order to be utilized than the standard cyanocobalamin.)
Take a look at Rose's site:
http://roseannster.googlepages.com/home
I'm glad Glenn gave you my website address. You do need to check it out. There is continuing research around the connections between MS and B12 deficiency: people with MS generally develop recognized B12 deficiency, and since most docs don't know how to properly diagnose B12 deficiency, it is possible that there is even a chicken and eggs situation.
Also, B12 deficiency that is allowed to progress beyond a certain point causes damage that can easily be mistaken for MS. This is why B12 deficiency is on the list of differentials, but since most docs don't know how to properly rule it out, it isn't ruled out as it should be.
Your B12 level may or may not indicate deficiency. The B12 test is not accurate. However, at that level you are within or near the [I]especially[I] suspect low "normal." It was found many years ago that even people without symptoms should be checked further or given B12 if under 350 using one unit of measure. It is rare for someone over 400 to be deficient, but it does happen, and has been documented well into the 700s.
rose
Depending on what units that test is based on--but if it is the usual ng/ml, I would say that is too low. In fact, I would say the whole range is too low. (Most parts of Europe, and Japan, start the low end of the range at 500/550; and the best have no upper limit, as B12 has no known toxicity level.)
That level is suspect, and should probably lead to further testing of homocysteine and MMA (though many doctors are not aware of this).
Many of us here are convinced from the research that Rose and others have done that our serum B12 levels should be in the four digits, and that if one is having any sort of neurological symptoms, we should be taking doses of a minimum of 1000mcg of B12, preferably methylcobalmin, each day. (That particular form may be neuroprotective and has to jump through fewer metabolic hoops in order to be utilized than the standard cyanocobalamin.)
Take a look at Rose's site:
http://roseannster.googlepages.com/home
I looked again, and it said pg/mL under Units. It also said normal range was 130 to 770
That is one of the many extremely out of date lab ranges. It's also worth noting that some of the better lab ranges do not have an upper number, since there is no danger from higher levels of B12 and any "High" would be arbitrary. Regarding the "700" as high, there have been proven cases of people who had levels as high as 700+ and were deficient. B12 does nothing in the blood. It must get to the tissues for storage and use.
This is from one of the better medical textbooks on the subject. I cite a textbook because they are conservative and it takes many years for information to become so established it appears in a textbook, Goldman: Cecil textbook of medicine, chapter 134. This wording has been in this especially good one for years:
Goldman: Cecil textbook of medicine, chapter 134
Serum cobalamin and folate levels therefore cannot be used alone to establish the diagnosis of cobalamin or folate deficiency unequivocally. The problem is compounded by the fact that not all patients with clinically confirmed cobalamin or folate deficiency (defined as those who have objective clinical responses to appropriate therapy) have low values for serum cobalamin or folate. The following distribution of serum cobalamin levels has been noted in clinically confirmed cobalamin-deficient patients: less than 100 pg/mL, approximately 50%; 100 to 200 pg/mL, approximately 40%; 200 to 350 pg/mL, approximately 10%; and higher than 350 pg/mL, approximately 0.1% to 1%.
I found this textbook chapter after many months of learning to distinguish between old, dangerous mainstream information and relatively up-to-date and helpful mainstream information.
And I can personally vouch for the tremendous damage to the central nervous system which occurs in some above that pitiful 130 pg/mL.
rose
Sorry, I just woke up and my brain is still asleep... Does that mean my B12 is low??
For someone with symptoms like yours, yes that is low. It is possible that B12 deficiency is your problem.
It is within the especially suspect "low normal." You should be tested further and/or treated.
The bottom line is: B12 deficiency has not been ruled out for you. And if you are deficient, the longer you go without getting lots of B12, the longer damage will continue.
http://roseannster.googlepages.com/home
rose
Sorry, I just woke up and my brain is still asleep... Does that mean my B12 is low??
Erin, my B12 deficiency was diagnosed with a level of 294 (150-1100). Luckily I had a neurologist who realized that this was too low despite falling within normal ranges. I had symptoms for 3-5 years and saw eight different specialists for various symptoms over those years. Finally, a neurologist thought to test my B12 level. I often wonder what my B12 level was when I STARTED having symptoms.
Here are the symptoms I had:
http://jccglutenfree.googlepages.com/b12deficiencysymptoms
A level of 345 is marginal at best. I would supplement to get it up to the high end or over the top with 1000-2000mcg of B12, preferably methylcobalamin, and see if you enjoy any improvements.
Cara
P.S. you may also wanted to be tested for gluten sensitivity/ celiac disease which can mimic MS. Check out the MS page (and the Diagnostic page) in The Gluten File for more info.
Erin, my B12 deficiency was diagnosed with a level of 294 (150-1100). Luckily I had a neurologist who realized that this was too low despite falling within normal ranges. I had symptoms for 3-5 years and saw eight different specialists for various symptoms over those years. Finally, a neurologist thought to test my B12 level. I often wonder what my B12 level was when I STARTED having symptoms.
Here are the symptoms I had:
http://jccglutenfree.googlepages.com/b12deficiencysymptoms
A level of 345 is marginal at best. I would supplement to get it up to the high end or over the top with 1000-2000mcg of B12, preferably methylcobalamin, and see if you enjoy any improvements.
Cara
P.S. you may also wanted to be tested for gluten sensitivity/ celiac disease which can mimic MS. Check out the MS page (and the Diagnostic page) in The Gluten File for more info.
I think I'll be checking with my regular doctor AND my neuro, and see what kind of vitamins I should take and what dosages. I have to go back to see my regular doctor in a few days (I'm on a prednisone taper right now) for a follow up for some problems that I've been having, and see if he can chat with my neuro and see if the two of them together can suggest what a good combination of vitamins would be good for me and my nerves.
I'm about to give up on trying to figure out if I have Lyme disease or MS... I think it's looking more and more like I have MS and not Lyme (darn...I was hoping for the easier treated disease) so I think now I'll start to concentrate on ways to not let the MS get too bad, and hopefully the MS drugs and some vitamins will help things from getting any worse anytime soon.
glenntaj
07-21-2007, 08:22 AM
--if your physicians don't have too much of an idea about what vitamin/mineral supplements might be useful for you. The lack of nutritional training for doctors is a scandal.
Also, I wish you not to be diagnosed with either Lyme or MS; they're both terribly recalcitrant, and the former is not necessarily easier to treat than the latter (and both are difficult to diagnose).
To emphasize what Glenn and Cara posted, most doctors do not know anything about nutrition. Most of them are unaware of even the information that has been in their (often outdated) reference materials.
I was allowed to deteriorate from dancing, remodeling, etc., to disability and near death before a very rare neurologist knew to check my B12 (and, miraculously, to check it correctly). A very rare doctor. Mine was by that time frankly low, but even at that most doctors would have looked at some lab ranges and said, "that's fine."
And even if you have MS, there is a clear but puzzling relationship between B12 and MS. Damage can be the same, deficiency becomes common even in those who have MS, and methylcobalamin has proven remarkably helpful to some. Some researchers are even exploring the possibility that MS is related somehow to the body not getting or using B12 properly and are exploring what we don't know that keeps it from being seen.
And Cara's gluten forum is an excellent resource for another problem that is sadly underdiagnosed.
http://roseannster.googlepages.com/home
rose
I'm on a steroid taper this week, thanks to my regular doctor trying to figure out what's causing my vertigo (he doesnt like to blame everything on the MS) and next week I go see my neuro for a regular appointment and to finally get started on one of the MS drugs.
I think I'll ask both doctors if they know anything about b12 or if they can refer me to someone, because even if I dont have a deficiency, I dont think it'll hurt to have someone who knows something about vitamins and MS to monitor me and give me supplements.
I think that if I can get someone to test me correctly, and give me the right types of vitamins, that it'll probably help me a lot more than just taking the MS drugs by themselves.
Plus, this steroid taper, while being a handy oral med, really really really sucks...I'm hoping I can find someone who can educate me on the right vitamins to take and hopefully none of the vitamins would have the annoying side effects that the steroids have. I think I'd rather have vitamins than the steroids
Unfortunately, unless you are extremely lucky, you could search for years before finding a doctor who knows much about B12. In fact, most still believe old debunked information or have other total misconceptions.
It's important to have a basic knowlege, so you can determine whether or not your being given bad information. Most of it will be.
rose
Would a nutritionist know anything about vitamins and B12?
Cry Tears
07-29-2007, 02:18 PM
Id been thru the ringer by the time I was able to find that I was severly B12 def but told my vit/min levels were well within normal ranges.
My b12 was 232, AND I was drinking a supplement loaded with B12!
But by then I had fatigue, modereate Peripheral Neuropathy, fatigue, loss of balance, muscle weakness and twitching, fatigue, burning lips, severe fatigue and fatigue....did I mention I had fatigue?
I also had spinal pain, when I put my chin to chest produced electrical shock down my spin even with slightest "nodd".
I understand this is one of the "last" symptoms before death...not sure, but I felt I was very close to dying and I was then welcoming that as a way out of my unending suffering.
100% bedridden with inhome care just to assist with basic grooming, otherwise I slept 24/7....was told it was "just" Fibromylagia, depression and if I just put on some lipstick, get out of my jammies perhaps I'd feel better!
Within days of taking the Methyl B12 sublingual after following Rose's advice back in 2002, I began to "LIVE" again and my fatigue began to lift almost majically.
How utterly incompetant all those specialist had reached their level of incompetantcy and dismissed me totally. Well DUH! I'm missing several feet of intestines after surgery for Crohns disease and an intestinal AVM (anuerism like mass) and is STANDARD PROTOCOL to give B12 to ANYONE having had bowel resections...did they? NEVER! Despite my asking if this could be vit or min defiency...they all said "NO!".
Sure glad I didn't take thier deadly advice and I had a laptop I could research with from my deathbed.
Doctors just don't want to deal with anyone outside the "box!" and if they do, they're not into vitamins and minerals....should be the first place they look for ANY disease or illness!
Blessings, cheryl
Cry Tears
07-29-2007, 02:23 PM
Would a nutritionist know anything about vitamins and B12?
Its been my experience because of having Crohns disease and mal absorbtion issues, I've been seen by the hospitals dietitions...but not a nutritionist.
Not a single one of them that I saw even suggested I look into this as a cause for my severe symptoms....and I have a family member who's got a PhD in nutrition!
It was like everyone I asked for help, were little help...as non suggested taking B12.
blessings, cheryl
Perhaps tho, I may be wrong here about there being a huge difference between a Nutritionist and a Dietitionist.
Unfortunately, even many nutrition specialists have the same old (outdated and dangerously incomplete, if not completely wrong) information. This is probably because so many medical resources are not updated as they should be.
So few medical people of all types are well informed, and that is why I provide the information I do. :(
http://roseannster.googlepages.com/home
rose
Ok... I guess I'll just start experimenting with the types of B12 that I've seen mentioned in the forum... Guess I'm going supplement shopping.
If you are in the United States, methylcobalamin is available to you. More stores are getting wise to it, but many go online to get a reputable brand. Still may be difficult to find at home, and it almost surely will be much more expensive.
I go out of my way to support local business, but in this case it doesn't make sense for me.
Don't fall for hype and end up with some expensive and less efficient "sublingual" cyanocobalamin. Methylcobalaman is the thing to look for.
If you are in a country where methylcobalamin is unavailable, take comfort in the fact that most people can convert cyanocobalamin.
rose
I'm going vitamin shopping tomorrow afternoon. I think I found a local place that sells the methylcobalamin.
If I'm taking methylcobalamin, should I add any other supplements to go with it??
Cry Tears
07-30-2007, 05:40 PM
I found a very good brand by Jarrrow of Methyl B12 from Whole Foods Market...they have chains of stores here in the Pac NW.
I've been using the cheaper brand hubby found, and even tho I've been taking faithfully, I'm back to being bedridden for weeks now.
I'd put them in my usual little bag in my bedside drawer.
I've been wondering why I'm so fatigued then remembered I've been taking the cheeper brand.
BUT....this could be my body doing some repairs as I was very deficient for a very long time.
I find it hard to beleive that a lesser brand is whats caused my fatigue.
I think our body only needs 3 mg of B12...and taking 1,000 mg day of even the cheaper brand shouldn't make that much of a difference.
But my body is very different and I'm very sensitive, so may not be the case in anyone else with which brand used.
When I first began this journey with B12 def, was back in Sept 2004.
My husband purchased my first bottle, Methyl B12 by Jarrow.
Within days my life began to turn around for the better and I was able to climb out of bed, first time in half a year! Wow!
I was so fatigued I needed help just with my basic grooming! That was scary and what is sad is I'd asked each and every single specialist IF this was a vit or min defiency...I was told NO!...but my b12 level was 232 AND I'd been using this vit/min supp drink loaded with Spirulina (loaded with b12), so it was in my blood and who knows how that threw the B12 level off.
Well DUH dummy docs....I'm missing 3 feet of small intestines...and Crohns has whats left of my small intestines very diseased and inflamed!
Is standard protocol to give those who've had such surgeries B12 shots...they failed me miserably!
Erin....I know what you mean about those nasty steriods! I take 10mg day of Prednisone. I love/hate it!
If I take 11 mg I notice a huge difference...on 20 mg I'm a nut case....60mg...watch out....100mg....I'm certifiably psycho!
But I'm usually in the hospital for the standard Crohns flare treatments! No fun! I've tried 3 times to get off steriods...anything less than 9 mg day and I'm bedridden and joints hurt too much.
So I'm destined to live with having to take them the rest of my days here on planet earth.
Blessings, cheryl
PS...anyone with sunshine...please send it our way...it was raining and cloudy all last week with only a few hours of sunshine later in the day...ug!
No wonder our suicide rate is the highest in the nation...is dark and dank most of the time...but finally have sunshine right now!
I just finished my taper today. Took my last 1/2 of a pill (1/2 of 20mg) of Prednisone this morning. I'm hoping that my MS-ish type symptoms dont all come rushing back in tomorrow morning...I go to the neuro tomorrow.
I just found out that my Lyme disease test results are back, but the testing company wouldnt tell me what it is, so I have to wait till my regular doctor's office gets around to calling me and telling me what it was. (I'm calling them tomorrow afternoon and hoping they know by then)
I'm almost positive now that I have MS, I'm just waiting for that Lyme test result and then depending on what that is, I'm either starting MS drugs, or I'm going to be popping antibiotics. I'll be really surprised if the Lyme test is positive.
At least now I think I know what I'll be doing...I'm going to be popping a good amount of B12 every day fairly soon no matter what other drug I'll either be popping or poking myself with.
I cant wait to see if the B12 helps me out. I'm betting out of whatever drug I'll be taking, the B12 will probably do me more good than all of them.
Supplementation is an individual thing, but I think it is a very good idea to take a B complex (at a different time of day than your B12-----B12 should be taken alone to get the most out of it). You want to eliminate the possibility that another nutrient is not available in appropriate amounts to allow the body to do the best it can if it attempts to repair due to the B12.
Also, you might at least consider a multi and a very good brand of fish oil.
It's worth spending some time reading past threads on this forum.
rose
I've got some pre-natal vitamins that my aunt (a nurse practitioner) suggested, so maybe I'll take that and the B12 (at different times of day).
Is magnesium the one to take if you've got muscle twitches? I cant remember...I just know that you cant take a certain type of magnesium because it causes diarreha...I think...
My intercostal muscles (muscles in the ribs) have been doing this annoying spasm that's actually kind of painful (it's called the "MS hug") and I've been taking a muscle relaxer for that, but it's not doing much, so I'm wondering which vitamin I could take that might help the spasms stop.
glenntaj
08-03-2007, 07:55 AM
--can certainlyhelp with muscle twitching and cramps, and you're right there are better froms of it for this purpose (and not the laxative purpose) than others. Magnesium oxide tends to be very poorly absorbed (and therefore used as a laxative, as it goes right through most people). Far better absorption can usually be found with magnesium citrate, acetate, or a chelated magnesium product.
You also might want to think about supplementing some of the B-vitamins at higher concentrations than are found in most prenatal vitamins. The one to be careful of there is B6--most people can tolerate up to 100mg/day or so of that, which is well in excess of the US government minimum daily requirement (though it may leave one feeling a little wired--but those with heavy MS fatigue may appreciate that), but HUGE doses of B6 (upwards of 200mg/day) can produce neuropathic symptoms in some people.
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