Vitamin Deficiencies
 

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? :cool:

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? :eek:

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

And this is where you and I diverge, Mrs D! ;) And, yes, I've read the thread and studies.

I had been taking B12 and I was still deficient (before it was diagnosed). It was only until I began taking sublingual B12 that my numbers went up and my symptoms decreased.

Studies are great, but not all patients fit into an algorithm. And, in my opinion, that is one main reason why so many doctors fail.

Those same types of studies say that all MG patients should test positive on a SFEMG. Dangerous.

Studies say that if you're the third child, you won't be as successful. Nonsense. I'm a third child.

Studies said that the world was flat, that bloodletting got rid of a bad behavior, that mammograms don't reduce cancer deaths . . .

Should a patient with heart problems swallow a nitro tab for the best possible outcome? (I realize that the drug isn't meant to be swallowed, I'm only making a point.)

Some doctors in the UK apparently equate substandard medicine to optimum care. All patients deserve the best possible care.

The only thing a patient should be focused on is whether or not they have a disease state and what treatment modalities work for THEM, as an individual, and given their own unique set of physical circumstances.

Declaring an absolute doesn't really suit you, Mrs. D! :hug:

Annie

What are we talking about, Annie?

Are you saying methylcobalamin is not an improvement for people today? Or are you saying that sublingual works and oral doesn't?

There are many studies comparing all 3 modes of treatment, by the response of patients. And all three gave improvements that are very similar. When you do sublingual you dissolve the lozenge in saliva which is then swallowed. So if you do sublingual and that is your choice, you should do it on an empty stomach so any you swallow will also be absorbed.

It doesn't really matter how you take the methylB12, but it does matter that the methylB12 should be done.

The rate of absorption has been measured by blood tests in volunteers...and that link is on my thread. 1000mcg orally translated to 13mcg absorption into the blood.

I've spent years looking for confirmation that sublinguals really deliver, but never found it. Now that methyB12 is so inexpensive, and is still sold for those who want to do sublingual or who want to chew them up and swallow, there is no reason to continue looking.

For decades it was not understood that B12 can passively pass thru the intestinal walls without intrinsic factor. But now we know it can. That is why the massive dose... 1000 to 5000mcg to get 13 or a few more mcg into the body. Since only 2-4mcg are the RDA, that is still 3 times the amount needed for us.

It might interest readers here that from an injection 1000mcg, only 150mcg were found in the test study.

http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4

What is changing rapidly is the data regarding the MTHFR polymorphism genetic errors. At first it was suggested at 10%, but now I am seeing 40% as a possible higher figure. The last person on these boards was a doctor who specialized in this who posted about 3 yrs ago, that 30% was showing up in studies.

Also showing up is that about 40% in US are low in B12. This is because of chronic use of acid blocking drugs and the use of metformin for type II diabetes. Birth control pills, some antiretrovirals, and long term use of antibiotics also inhibit B12 absorption. So today this is a growing problem with many people.

Many people on our PN board use B12, and many are using methylB12 and swallowing it.

Because many companies still make it in that form you can choose to keep under the tongue, you can still choose to do it that way.
Just don't do it with food in your stomach, because you will swallow most of it. The success of oral use is in how you take it....it must be taken on an empty stomach with no food following for about an hour after.
Chemically B12 is a huge molecule, and huge water soluble molecules don't cross the membranes of the mouth easily or quickly.

I'm not saying either of those things.

If I pound on my chest harder, will it help the discussion?

I believe I made my point. And you have made yours.

Annie

For those of you unfortunate enough to have the MTHFR deficiency (genes), these are a couple of good articles about it.

http://doccarnahan.blogspot.com/2013...-big-deal.html

https://www.counsyl.com/diseases/mthfr-deficiency/

Annie

I am MTHFR homozygous C67tt (the apparent "Bad" one to be).. I had many miscarriages until I used aspirin and folic acid/b vitamin supplements

A broad statement cannot be made about the oral vitamin b12 being beneficial for everyone. I am missing the portion of my stomach that manufactures intrinsic factor, so I could take b12 rich food or oral b12 till the cows come home and still be deficient. There are also those who don't absorb it for other reasons. I was told by my gastric surgeon beforehand that I would have to take b12 sublingually or by injection for the rest of my life. Unfortunately methylcobalamin, the more bioavailable form is not always available to me where I live.
Oral b12 may help some but not all. We are not clones and all have individual systems that react differently to different factors.
I intend to ask my gastro to check my levels this week and also ask for injectable b12 to see if that makes a difference in my symptoms.

The link I gave has information about absorption of oral in pernicious anemia patients. They were tested too.

It works for them as for others. That is because some B12 can be absorbed PASSIVELY without intrinsic factor.

It is not common to have study subjects for vitamin research. Measuring blood levels, etc to show that passage of the nutrient does occur is costly and just not done. But today we have the data from this B12 study, and also one for magnesium.

The magnesium study showed very dramatically that OXIDE forms of magnesium remain in the bowel, and therefore now are being sold OTC as a result by Phillips company, as a laxative only.

Here is the link showing the table including the pernicious patients.
http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4

Look carefully at this table...The far right hand column represents the pernicious anemia and other malabsorption patients, and at 1000mcg they absorbed 12 mcg and the normals 13mcg.

Manufacturers of the various supplements rarely provide this type of data. (The data from RX drugs does provide absorption and also in more detail, which costs mega bucks ). There is one other example we at PN forum know about and that is the data on absorption of the r-lipoic acid solubilized (NaRALA) provided by that manufacturer compared to the old racemic form of alpha lipoic acid that has been around for 20+ yrs which is poorly soluble in the aqueous environment of the human GI tract. This example is only about 2 yrs old...and only a few manufacturers at this time are providing to consumers this new improved type.

So while one can still choose injections, it might be best to have the methylcobalamin in that option as well. This typically still is done at compounding pharmacies, and needs refrigeration in that form.

So I think we are quite lucky to have access to this one study by a doctor published to read and help in making decisions.

Be advised when you have your testing to stop all vitamins you take at least 5 days before the test. This is to avoid factitious elevations. Also the range still used by doctors and most labs still goes down to about 200pg/ml. The Continuing Ed sites for physicians suggests a minimum of 400pg/ml in neurological patients. (the AAFP site is one example) This was started by Dr. Christopher Snow, and I have a link to that AMA paper from the late '90's explaining why.
It is in the first post of my B12 thread on PN.
So it is best to get your numberical result and not just comments like "normal" or "okay". You may be below 400pg/ml in that case.

Another good source of B12 research information, is India. They have many products given by doctors orally now containing methylcobalamin. They seem to have huge numbers of people with marked low B12, including children, because of the vegan lifestyle and perhaps other cultural factors.

In fact one recent poster here asking for more information about supplemental treatments listed her products and one of them was an oral methylB12 product:
http://neurotalk.psychcentral.com/thread202374.html
Meganeuron OD Plus

I found interesting research papers over a decade ago coming from India.

Limpy,

I'm the same I do not absorb Vitamin B12 due to having intermittent gastroparesis ( paralysed stomach) . When I was most deficient I had a diet high in B12 lots of eggs, dairy etc but due to the gastroparesis I just wasn't absorbing it in high enough quantities to get my levels back up again.

I also have pernicious anaemia running in my family so my levels are checked once a year and if I am symptomatic more often.

I now take a sublingual form of B12 and that has helped raise my levels.

Deficiencies in B12 are common in patients with gastroparesis and should be checked in patients who are complaining of symptoms of gastroparesis.

Any of you that suffer migraines will also suffer from transient gastroparesis that just lasts while you have the migraine ( sorry to go off on a tangent) that's why when you get your warning sign of a migraine starting you need to take your medication straight away or you may not benefit from it at all. Just to share this tip!

So if you get a lot of migraines eg several a week it maybe worth getting g B12 levels checked. See there was a point to it! Lol!

Rach x

Rach, you are a GENIUS!!! I knew my stomach acted wonky when I had a migraine. I have even thrown up undigested food (through the nose, thanks to MG :eek:). I had the gastroparesis test when I was headache-free and was CLEARED! How come this migraine info is so HARD to find????

Hi Jana,

Its not everyday I get called a genius but I will take that lol!

I've known since the age of 15 about the stomach paralysis as I had a very good Gp when I started suffering from hemiplegic migraines ( I also get classic migraines) I only tend to vomit with my hemiplegic ones and as I tend to wake up in the night with them I get no warning. My current gp has given me suppositories now to use during an attack, anti sickness and two pain killers as I can't keep anything down. So maybe you could look into that Jana for your migraines?

Rach x

Great discussion, guys.

Limpy, When you mentioned the numbness and tingling, as did others, that's why I started this thread. So many people are B12 deficient and don't even know it. And it's uniquely important to MGers since we need B12 to make acetylcholine. I hope you will get tested, but, as Mrs D said, you need to be off of B12 for a while beforehand.

Yeah, Rach is a boffin from way back. ;) And her situation is an example of how much can go wrong when the autonomic nervous system is out of whack. She has POTS, and that can affect other systems in the body.

Jana, What is ironic is that both not enough and too much acetylcholine might trigger a migraine. I don't have migraines anymore. I took the triggers out of my diet (MSG, as in tomatoes which are a nightshade), stay away from bright lights, and now I have enough acetylcholine. Migraines run in my family and I honestly believe that they are related to some unknown genetic channelopathy. You could try taking some chewable calcium the next time you have a migraine. Benadryl might work, too, but not if you're sensitive to it, as some MGers are!!

The point I was trying to make is that in our little biochemical factory called the body, one little kink—no matter how seemingly insignificant—can throw the rest of the cogs off. This is how disease states begin.

Years ago, I did a bunch of research for a friend of mine with chronic migraines. Acetylcholine does play a role in them, as can other neurotransmitters. Why do you think they now recommend Botox for migraines? :cool:

This is a complex topic, because the biochemical processes in the body are all interrelated.

Below are some pearls that relate to MG and are interesting to contemplate. I don't have the energy right now to do a bunch of research. The thread I put up a while ago about this might still be here. Found it.

http://neurotalk.psychcentral.com/sh...d.php?t=182507

Migraines and neurotransmitters.

If you want to know more about migraines, simply google "migraines acetylcholine."

Scroll up to see the start of the chapter.

http://books.google.com/books?id=X4l...holine&f=false

The neurotransmitters and more.

http://www.moodocean.co.uk/html/neurotransmitters.html

http://umm.edu/health/medical/report...aine-headaches

Channelopathies

MG is a channelopathy.

http://www.bmj.com/rapid-response/20...hannelopathies

http://www.pps.org.pk/PJP/6-1/Amina.pdf

http://brain.oxfordjournals.org/content/125/6/1177.long

http://link.springer.com/article/10.....01.007#page-1

Paper based on studies about CFS being a neurological channelopathy.

http://phoenixrising.me/research-2/t...syndrome-mecfs

Antacids, acid blockers and acid inhibitors can be very destructive. They not only cause deficiencies in B12, iron, calcium and protein, but a host of other problems.

Food doesn't digest well enough.
Nutrients aren't absorbed into your small intestines as much.
Undigested food sits in the large intestines, putrefying and rotting.
That can lead to a leaky gut and loads of immune problems.
Bad bacteria builds up, overcrowding the good bacteria.
Infections (sinus, too) are easier to catch and harder to cure.
Immune complexes begin to multiply, attempting to fix you.
After that, you can have all sorts of problems, such as allergies, diseases, even more digestive problems, etc.

And inflammation. Inflammation can lead to infections can lead to cancer.

One thing leads to another. Get your B12 and D checked. ;)

Thank you Annie.

My nickname at university was boffin!

Its nice to be back on the forum its been a while!

Rach x

Ok.. so interesting day for me today, I had a colonoscopy/endoscopy - yay fun- for suspicion of crohns...I had bad GI symptoms with massive weight loss months before I ever had any neuro issues... (3 years ago).. was also breastfeeding through out this (not smart, I know now).. anyhow once the neuro symptoms started and I had IVIG my GI symptoms were also improved, but come back a bit when IVIG wears off.. until a couple of weeks ago things worsened, that with a family history of crohns made them think I might have that


ANyhow - on the topic of vitamin deficiencies- they ran a slew of lab tests - and they think I have malabsorption as I was very low in a few- Zinc, Folate, b1, B12, B6 and I think one more... My WBC was low (3.4), and my blood counts - which isn't suprising as I was having some bleeding - they have always been normal in the past.. Sounds like they are going to have me do B12 injections and sublinguals..

I had my b12 and mma drawn yesterday. I am hoping my loss of feeling in my hands is due to B12 and not some other malady. At least it can be treated.

Hi,
I found a great blog on vitamin B12 deficiency
www.b12deficiencyblog.WordPress.com
www.b12deficiency.info

Hope that address works let me know if it doesn't

Rach x