I keep running into people who have recently found out that they were deficient in Vitamin B12 (VB12). I have personally experienced a severe VB12 deficiency and a Vitamin D deficiency.

I suspect that many of you might be experiencing one or both of these, so I have put together some resources for you. There are MANY more out there on the Internet, far more than when I had my VB12 def.

The newest studies show how detrimental a Vit. D deficiency is. It not only exacerbates AIs (autoimmune diseases), but has now shown to affect antibody production! In other words, not enough Vit. D, too many antibodies!

Ahem, Mike, have you had your Vit. D checked?

Vitamin B12

It can be a very insidious deficiency, though not if you're running on fumes.

I personally had extreme fatigue, feeling of faintness, cognitive dysfunction (and probably early dementia), periodic severe headaches, numbness and tingling in my hands, feet and face, a hypersensitive nerve feeling that made me want to rip my feet off, lower back pain, and so many other lovely symptoms. It felt like the life force was being sucked out of me.

My B12 level was 101, well below the "normal" range. But a deficiency can begin at higher levels. The liver can store about 6 years of B12. Once you're showing a deficient number, your liver stores are basically gone.

When you are tested for B12, you need to LOOK at the labs!!! Even if the range is, for example, 200 - 800, you have to look at the level in combination with any symptoms you're having. A B12 deficiency can begin at higher levels! My mom had numbness and tingling in her hands and feet and she tested in the 300's. It went away after taking a B12 supplement.

If you do have a B12 deficiency, your doctor should figure out the CAUSE of it! Mine was from achlorhydria/no stomach acid. One of the newest causes is those damn antacids or acid blockers/inhibitors! We need stomach acid.

The symptoms of not enough and too much acid are very similar. Most people do NOT have too much stomach acid. For an MGer, the peristalsis (how food moves through the GI tract, beginning at the mouth) might be slower and that is why acid feels like it is moving upward. That doesn't mean you have too much of it.

If you don't digest your food well enough, you can have all sorts of problems, including increased infections, a leaky gut, rampant inflammation, etc. It's bad for the immune system to not have enough stomach acid!

If you have a deficiency, doctors often prescribe cyanocobalamin in the form of injections/shots. It is absolutely not necessary! Cyano B12 is formed as the result of using cyanide in the "purification" procedures. I wouldn't want to be shot up with that regularly! My B12 levels were not going up very much at all on shots. Because of this, I still have damage from my deficiency.

The longer you have a B12 deficiency, the longer it takes to heal the tissues and peripheral nerves. It's crucial to get it diagnosed and treated as soon as possible. Unfortunately, many doctors see that "normal" range and say that you, and your B12 levels, are "okay." Not true.

Methylcobalamin is the superior form of B12 anyway. And you can readily obtain it online or in stores. Depending upon what caused your deficiency, you could either take a tablet form (NOT in a multivitamin but singularly as B12 only) or sublingual methylcobalamin. Mrs D and I differ on this a bit. Because I had no stomach acid, I wasn't getting my B12 from food very well. Also, I wasn't breaking down tablets either! So I use the sublingual B12.

That's also why I use Mestinon syrup, because it digests far more easily than the tablets for me. Also, it goes to work faster than tablets (for those of you who use Mestinon tablets under your tongue like nitroglycerin).

I take two 5 mg. sublingual B12 tabs every day, mainly due to my nerve damage. I will be taking it forever. For me, there's too great a risk of having a def. again. It comes in 1 mg. form as well.

There are a lot of brands out there, but I have found the Jarrow Formula to work best for me. You can't get too much B12, unless you have a "kink" in the B12 metabolic pathway, which is very rare.

With a B12 deficiency, your homocysteine and/or methylmalonic acid can be elevated. My homocysteine was. A buildup of homocysteine is detrimental to your heart, for example.

SAMe also works synergistically with B12 (see article below).

The bottom line is that a B12 deficiency is VERY common, your body can't produce it, and you need to get it from your food or supplements. Rose, a former forum member, did extensive research as I did and found out that our food sources (for some unknown reason, possibly antibiotics given to animals) do not contain enough B12. I have not been able to find the woman's name or the book she wrote about this topic since originally getting it from Rose.

I should also add that B12 will help heal any nerve damage, such as after a thymectomy or other surgery like a C-section. It helps shorten the time someone has Bells Palsy, for example. Ditto on shingles. Any condition that involves the peripheral nerves will benefit from daily B12. Most of the studies on Bells, for example, had patients taking a high dosage of it (10,000 -20,000 mg).

BTW, 1 mg = 1000 mcg. and 5 mg. = 5000 mcg.

If you still don't think B12 is extremely important, did you know that it helps to fight cancer? Mayo did a study years ago that showed radionuclide B12 went straight to where cancer was. While their goal was to find a way to quickly pinpoint a cancer's location, what it also showed was that B12 goes in to fight cancer.

So for those of you who are immunosuppressed, this might help you reduce your risk of cancer. It sure couldn't hurt!

If you have any symptoms of a B12 deficiency, ask your primary doctor to test you for it!!!


Vitamin D

I have probably had a D deficiency for a very long time. My endocrinologist was the one who tested for it, though any doctor can—if they think to do it! I had been having muscular aches and pains, not related to MG. Now that my levels are inching up, I feel better.

The thing with deficiencies like VD is that you might not even have symptoms, but that doesn't mean it isn't doing damage to your body! And even if you don't notice any change while taking it, ditto. The body, and especially the immune system, needs Vitamin D!

D3 is the best form of D. I take my D3 three times a day. Spreading vitamins out like that helps the body to better utilize them. I do that with multivitamins too (children's doses).

There are many different brands and sources for D3. Jarrow's source is from the lanolin from sheep. I always ask a company what the source(s) of their vitamin supplement is! If you have allergies, it's a good thing to know.

If you have anything to add, please do! This is an important topic that many doctors overlook. And some of them do not have all of the detailed info, especially on a B12 deficiency. There are other deficiencies but these are the two most common ones.

I hope this information helps.

Annie



Viamin B12 Articles

http://www.nytimes.com/2011/11/29/he...ging.html?_r=0

http://www.aafp.org/afp/2003/0301/p979.html (It's an older article but useful.)

http://www.health.harvard.edu/blog/v...l-201301105780

http://articles.mercola.com/sites/ar...of-adults.aspx

SAMe

http://www.mayoclinic.org/drugs-supp...d/hrb-20059935

Vitamin D Articles

http://www.medscape.com/viewarticle/747623

http://www.telegraph.co.uk/health/10...-diseases.html

http://www.nih.gov/researchmatters/f...02032014ms.htm

http://healthresearchreport.me/2014/...omment-page-1/

http://www.bostonmagazine.com/health...ichael-holick/


Chart of deficiencies, symptoms and food sources.

http://www.nal.usda.gov/wicworks/Top...rientChart.pdf

http://www.spectracell.com/media/upl...ient-chart.pdf

Thanks Annie!

When my B12 levels were checked my Dr told me I was OK. I knew that wasn't the case as I had the classic numb hands and feet. I had constant pins and needles and it drove me to distraction.

I asked the doctors surgery for a print out for the results of all my blood tests, not something they commonly do in the UK. They tried to charge me for them also. I refused to pay for them, we argued for a bit and then it was decided I could have them for free.

When I got my results back the hematologist had marked my B12 result as abnormal. It came in at 178, they only treat at 180 in the UK. Those in the medical profession that exclusively treat B12 deficiency in the UK treat patients whose levels are 400 or below. I was very deficient! My gp argued that I didn't need to be treated, I asked home to contact the hematologist as the hematologist had marked my lab reports with the comment "treat if symptomatic" - my gp got a very snotty letter back from the hematologist telling him to treat me!

It shouldn't have been a fight, it should have been clear cut. However due to me having the label somatiform disorder in my file - which has never actually been proven by a psychiatrist - just my neurologist who said there was nothing wrong with me and I was managing to give myself ptosis for attention! All medical help was being withdrawn!

So the moral of the story is do get the lab reports as you maybe told you are fine but actually be deficient.

A good site to visit regarding B12 deficiency is B12d.org its run by a leading Dr in the UK who is campaigning to get B12 deficiency treated properly.

Thanks Annie, great post as always!

Rach x

Thanks, Rach. I wonder how long you went undiagnosed! That was a very good point about getting all of your test results. It's almost funny how doctors don't tell their patients everything. I've had that happen one too many times.

And, no, treatment for a very real illness—as a deficiency is—should not be withheld. What were those doctors taught in medical school? First, do not help?

Perhaps you guys are thinking that I'm going over old ground. But there are lurkers here that might benefit from this information, too.

Unless you've had a severe deficiency, I realize that it's hard to relate. Just like it's hard for someone without MG to relate to that.

What's even more dangerous are the deficiencies that "smolder," aren't as obvious as what I had, and do more damage. Like a gluten sensitivity, without having an outright positive CD antibody test.

Annie

I have many signs of B12 deficiency as well - neuro stuff, and bleeding tongue too ugh... They just tested it this week, so we will see what it shows.. however, I did just buy some methyl B12 sublingual I plan on taking.. It's amazing to me how these things can be overlooked.. however I was B6 toxic when my symptoms first started over twice the upper limit of normal.. So, I will not be taking any B6 supplements!

I think I need to get mine checked as well. I have been having new symptoms of numb and painful fingers and toes, and have lost a lot of sensation in my fingertips. Thanks for the reminder, Annie.

Annie,
I had the numbness in my hands on and off for years. All the doctors I saw said it was carpal tunnel syndrome. It actually got to the point where they were sending me to see a surgeon. All this without even checking my vitamin B12 levels. It makes me wonder how many people have had surgery without needing it? Surely it should be checked before someone is sent to a surgeon?

Frightening.

Rach x

Annie, so GLAD you posted this!! I assumed you took drops -- like you do with Mestinon. I may have told you that I had my mom on the liquid -- had to be refrigerated -- HARD to get the drops counted under her tongue unless she was looking in a mirror.

I will get the sublingual tablets -- thanks!!!

Rach, what happened to you is CRIMINAL!! My aunt saw a PT whose father is still in the UK. He is in his 70's and, until recently, hiked and did mountain climbing...UNTIL he developed neuropathy in his feet. The PT feels sure it is a disc -- but, NHS will ONLY do tests (blood work) for diabetes. MRIs, they say, are "reserved" for the young. I think the PT said the MRIs are rationed or something like that?

Annie, are the LOZENGES the same as sublingual? If so, do you need to put the lozenges UNDER the tongue or just suck on them (like a cough lozenge) til dissolved??

Many thanks!!

One does NOT need to do under the tongue....that is old historical nonsense. Studies show today, that oral works fine, as long as you swallow it on an empty stomach and don't follow with food for about an your.

Here is our B12 thread, with all you need to know and some very interesting links (medical) as well.

Methylcolbalamin is the preferred type to use now, as we know that up to 40% of adults may have the MTHFR mutation and be unable to methylate (activate) the old synthetic cyanocobalamin type. Methylcobalamin is now in some stores, WalGreen's and Costco. And online at iherb.com, Amazon and some discount outlets.

http://neurotalk.psychcentral.com/thread85103.html

Hi Jana,

They aren't supposed to ration healthcare due to your age, but they do. My husbands mother is in her seventies and was diagnosed with multiple myeloma in 2012. They told her they would treat her symptoms and her life expectancy would be 2-3 years. They kicked up a stink and she's now getting treatment and is doing exceptionally well on it.

The thing with any healthcare provider is not to accept NO for an answer. The gentleman you spoke about should be having his B12 checked but many doctors don't think to check it unless you specifically ask.

B12 should also be checked in those with mental health conditions as low B12 can be the cause, along with thyroid issues. It seems that only a few doctors are cottoning on to this. Its a crying shame as so much money is being wasted when there is in fact a quick fix.

Rach x