# Thiamin Deficiency - Dysautonomia, Neurodegeneration, SAD



## Beggiatoa (Dec 25, 2004)

** I'm sorry this post is so long. I know this might discourage some from reading it, but i tried to unite a lot of the commong symptoms and problems we have into one single causative agent. I believe this to be a Thiamin Deficiency.

I understand that MVP itself is asymptomatic and that the symptoms of fatigue, exercise intolerance, low blood pressure, dizziness, vertigo, depression and anxiety are really due to Dysautonomia.

http://ezinearticles.com/?Mitral-Valve- ... id=1233521

http://ezinearticles.com/?Dysautonomia- ... id=1200367

This is the first time I read that Dysautonomia is linked to a deficiency of something. Most diseases like Marfan syndrome have a genetic predisposition. But based on the good work of Sandy Simmons (http://www.ctds.info/mvp1.html), I now understand that the *manifestation* of symptoms of any disease, are due to a nutritional factor. This is why many conditions can share similar symptomatology, for instance, Marfan syndrome, Ehlers Danlos, and homocysteinuria.

For MVP, we know this to be magnesium. http://www.ctds.info/mvp1.html

For Dysautonomia, I believe it is thiamin (vitamin B1). - http://ecam.oxfordjournals.org/cgi/content/full/nem064

This belief comes from the fact that Dysautonomia is shared by many other conditions other than MVP, most notably beri-beri which is caused by a frank dietary deficiency of thiamin.

Thiamin deficiency as a cause of dysautonomia, through mechanisms I don't fully understand, can also explain why some MVPers like myself, suffer from hypoglicemia and hypotonia (low muscle tone).

There is a pure form of Autonomic failure called Familial Dysautonomia. This has both a genetic and a dietary component.

http://en.wikipedia.org/wiki/Familial_dysautonomia

So, if changes in your diet or supplementation can help FD, it should help us as well.

Things that work for FD:

Tocotrienols (a type of vitamin E) - http://findarticles.com/p/articles/mi_h ... _n18473585

EGCG (green tea extract) - 
http://www.ncbi.nlm.nih.gov/pubmed/1452 ... d_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/1796 ... d_RVDocSum

Thiamin/Benfotiamin
http://www.ncbi.nlm.nih.gov/pubmed/2307 ... d_RVDocSum

http://ecam.oxfordjournals.org/cgi/content/full/nem064

You can read about this information in the following links and you can make up your own minds.

From the links, I believe the tocotrienols and EGCG target the genetic defect directly while thiamin works to correct all the symptoms.

http://jpet.aspetjournals.org/cgi/conte ... /217/3/537 - This says that a lack of thiamin causes problems with choline. This explains why we have mental foginess, memory problems, etc.

You can read more here

http://lpi.oregonstate.edu/infocenter/vitamins/thiamin/

http://en.wikipedia.org/wiki/Thiamin

Thiamin deficiency causes neurodegeneration. This can explain why the central nervous system is so badly affected in Dysautonomia. This is true even in animals. Ruminants that are fed exclusively on grains, can develop a thiamin deficiency.

http://en.wikipedia.org/wiki/Polioencephalomalasia

http://en.wikipedia.org/wiki/Thiamin#Ce ... _ruminants

In animals, thiamin deficiency causes cerebrocortical necrosis. This is a fancy way of saying that the neurons in the cerebral cortex (your big fat brain) are dying out. To avoid harm to humans, most experiments are done with animals. So, to some degree, what happens in animals can also happen to us.

Get THIS now - Decreased activity in the mesocortical pathway of the brain causes *social widthdrawaal, loss of motivation and loss of display of emotions.*

From wiki, "The mesocortical pathway is a neural pathway that connects the ventral tegmentum to the cerebral cortex, particularly the frontal lobes. It is one of the four major dopamine pathways in the brain. It is essential to the normal cognitive function of the dorsolateral prefrontal cortex (part of the frontal lobe), and is thought to be involved in motivation and emotional response.

This pathway may be the brain system that is abnormal or functioning abnormally in psychoses, such as schizophrenia[1]. It is thought to be associated with the negative symptoms of schizophrenia which include avolition (general lack of desire, drive, or motivation to pursue meaningful goals), alogia (poverty of speech) and flat affect (a lack of emotional reactivity on the part of an individual, or always tense and serious). The pathway is closely associated with the mesolimbic pathway, also known as the reward pathway (problems here can cause Anhedonia, or basically, nothing brings you pleasure. The mesolimbic pathway is thought to be involved in producing pleasurable feeling, and is often associated with feelings of reward and desire)."

@#$%, I lost my train of thought...give me a minute.

Ok, I got it. The mesocortical and mesolimbic pathways are all connected to the cerebral cortex. So, if there is a neurodegeneration caused by a lack of thiamin (and possibly fish oil, see http://www.ajcn.org/cgi/content/ful...INDEX=0&sortspec=relevance&resourcetype=HWCIT) and the connections to these two systems are disrupted, this can be a cause of *social anxiety!* **like the guiness commercials say, BRILLIANT!**

It is also believed that thiamin deficiency causes neuropathy in diabetes patients.

For some persons, the problems is not a deficiency but by a problem with thiamin metabolism so absorption is impaired. One can have a thiamin deficiency or a disturbance in thiamine metabolism. Magnesium is needed as a co-enzyme for thiamin deficiency. Maybe correcting a mag def in these people can allow proper thiamin metabolism.

"Thiamin. Mg deficiency interferes with responsiveness to thiamin in rats (Itokawa et al., 1974; Zieve et al, 1968). Correction of the Mg deficit has restored thiamin responsiveness in alcoholics with encephalopathy (Stendig-Lindberg, 1972). The Mg-dependence of thiamin utilization is a consequence of the role of Mg as a cofactor in enzymes requiring thiamin (Vallee, 1960). Additionally, evidence has been presented that Mg plays a role in binding thiamin with tissue protein (Itokawa et al, 1974). Thiamin deficiency also inhibits Mg utilization. It may be clinically important that Mg deficient rats with normal thiamin intake had lower plasma and tissue Mg levels than did those with double deficiency. (Figure 5, Itokawa, 1972)." http://www.mgwater.com/aging.shtml

Thiamin deficiency and neurodegeneration

Thiamin deficiency also causes lactic Acidosis. Lactic acid is what builds in your muscles during a workout that causes the burning sensation.

Some symptoms of LA:

Increased minute ventilation
Decreased diaphragm contractility
*Decreased catecholamine responsiveness (which causes higher release, e.g. epinephrine)*

Increased heart rate and contractility at pH >7.2
Increased cerebral blood flow
*Decreased cerebral metabolism*
*Altered mental status*
*Increase sympathetic catecholamine discharge* - would cause more anxiety

Decreased renal and hepatic perfusion
Increased metabolic rate
*Increased protein catabolism* - in my case, this explains why I can workout like a maniac but if I take a week or two off, I lose tons of muscle mass even with adequate protein.

A thiamin deficiency in animals is called *Polioencephalomalacia* (PEM), is the most common thiamin deficiency disorder in young ruminant and nonruminant animals. Symptoms of PEM include a profuse, but transient diarrhea, listlessness, circling movements, star gazing or opisthotonus (head drawn back over neck), and muscle tremors.

Bacteria in our gut can produce thiamin to some degree. If you have a candida overgrowth, this can be affected. How do we get candida? A diet high in grains and simple sugars is a cause. In animals, they found that,

"PEM sometimes occurs on high grain diets, and diets that include plants high on thiaminases and sulfur. Thiaminases are enzymes found in a few plants, such as bracken fern, and the raw flesh and viscera of certain fish and shellfish. When ingested these enzymes split thiamin (Vitamin B1), an important compound in energy metabolism, and render it inactive. Normally ruminants are fairly resistant to thiamin deficiency since rumen microbes provide the animal with sufficient amounts of thiamin. However, the ingestion of thiaminases will lead to deficiency. Additionally, young growing ruminants, especially cattle and sheep, fed high-grain diets are especially susceptible. *Diets high in grains can encourage the growth of certain thiaminase-producing bacteria in the rumen. These bacteria, including Clostridium sporogenes and a few species of Bascillus can produce enough thiaminases to induce thiamin deficiency*.

We all eat diets high in grains and sugar. Maybe the growth of this type of bacteria is causing a thiamin deficiency in us. Also, this bacteria can possibly create and environment not suitable for "friendly bacteria" and maybe this can cause a candida overgrowth? I know, this sounds like a weak association...but what the heck!

"A thiamine-analogue is also produced within the rumen if there is excess sulfur, which may replace thiamine in important metabolic reactions in the brain. When thiamine is deficient, key tissues that require large amounts of thiamine, such as the brain and heart, are the first to show lesions." Oops!

From here, http://en.wikipedia.org/wiki/Polioencephalomalacia
"The lesion is associated with thiamine deficiency or a disturbance in thiamine metabolism. Ruminants are supplied with thiamine by synthetic activity of ruminal bacteria. PEM most commonly develops in cattle fed carbohydrate-rich and roughage-poor rations, which leads to subclinical lactic acidosis and hence an alteration in ruminal microflora."

--So a thiamin deficiency leads to lactic acidosis ---> disruption of Flora ---> even less thiamin produced & CANDIDA!?

--so maybe TOO much MSM is not good for us if we're not getting enough thiamin.

It is thought that many people with diabetes have a deficiency of thiamin and that this may be linked to some of the complications that can occur like pain and burning in the legs and feet (peripheral Neuropathy).

Interestingly enough, this is similar to what patients with fibromyalgia complain of. There's also a link b/w thiamin def.and fibromyalgia. There's also a link b/w fibromyalgia and magnesium def. Maybe the two are connected.

http://www.jacn.org/cgi/content/full/17/3/300

"A number of similarities exist between Fibromyalgia (FM) and thiamin deficiency. They include *irritability, frequent headaches, unusual fatigue, muscle tenderness upon pressure palpitation, muscular weakness, irritable bowel syndrome, and sleep disturbances *[1-3]. Studies published in JACN have demonstrated abnormalities of thiamin metabolism in FM [4,5]. Thiamin deficiency, in developed society, stems mostly from excessive alcohol intake. It is suggested that studies be done to look at both alcohol consumption and thiamin status in patients diagnosed with FM. The literature currently lacks this type of investigation in FM. "

Another thing to note: Thiamin is just vitamin B1 and is dirt cheap to obtain. For the reasons listed above, they suggest ingesting 500 mg or above to see therapeutic effects. I guess this should be safe because B1 is water soluble and your body will flush out the rest. (like that yellow urine you see when you take a B-complex).

It would be interesting to see if anyone here saw any benefits from simply adding some thiamin and magnesium to your supplement regimen.

http://www.mdheal.org/magnesiu.htm

The author of this site says that MVP, dysautonomia and some autoimmune problems are not caused by one another, but rather, are the result of a common affliction. Maybe this is caused by a thiamine deficiency.

A deficiency of thiamin is also seen in patients with an AV block. I am one.
Thiamin deficiency and 2nd degree AV block - http://ajplegacy.physiology.org/cgi/pdf ... /144/3/404

Interaction with Thiamine Metabolism 
It is possible that functional vitamin B12 deficiency blocks resorption, transport and biological activity of thiamine. In particular, methylcobalamin deficiency could induce reduction of the intestinal alkaline phosphatase level, blocking intestinal resorption and possibly alsobiological activation of thiamin. Deficiency of biological active thiamine in the brains is connected with a range of neurological diseases, as is known from brain research in chronic alcoholics.

http://www.orthomolecular.org/library/j ... shtmlearch

http://www.umm.edu/altmed/articles/vita ... 000333.htm

Similar to some other B complex vitamins, thiamine is considered an "anti-stress" vitamin because it is believed to enhance the activity of the immune system and improve the body's ability to withstand stressful conditions. We could all use a little anti-stress, right?

This study here says that thiamin induces cholinergic activity in the body.



> Evidence for a central cholinergic effect of high-dose thiamine.
> 
> Meador KJ, Nichols ME, Franke P, Durkin MW, Oberzan RL, Moore EE, Loring DW.
> 
> ...


Another reason for a thiamin deficiency: This info I got from a newsletter online somewhere, I can't remember the source.

Genetic beriberi. An inherited medical condition in which the body cannot absorb thiamine from food. Example of genetic beriberi may include subacute necrotizing encephalopathy (SNE), maple syrup urine disease and lactic acidosis.

Genetic beriberi is fairly rare, so I'll explain it. It is genetic condition in which the person gradually loses the ability to absorb vitamin B1 (thiamin) through the stomach lining. The effect of B1 starvation is very much like a systemic, slow-moving MS because when the body goes into B1 starvation, it harvests B1 from the myelin coating of the nerves. According to medical studies, beriberi is "not supposed to occur" in North America, so it was 15 years after I first began experiencing moderate pain/symptoms that I finally got diagnosed. The treatment is very simple - liquid B1 is injected and absorbed via the muscles. Remyelination takes time, but is possible.

I wanted to let you all know about an underdiagnosed condition called genetic vitamin B1 deficiency, or "genetic beriberi". The Singhalese phrase "beri beri" translates literally into "I can't, I can't", an apt description of the debilitating effects that vitamin B1 deficiency has on a person. It has symptoms that are very similar to the pain and fatigue that people who have MS and/or Fibromyalgia experience, so if you have wondered if you have MS or Fibromyalgia, have been diagnosed with MS or Fibromyalgia, or know someone who has MS or Fibromyalgia, please read the info under the cut, it could save lives. Please note that I do recognise the existence of Fibromyalgia, I am just concerned about misdiagnosis because the symptoms can be so similar.

Comprehensive info & symptom list behind the cut . . .

Genetic vitamin B1 deficiency is supposed to be rare, but I believe it is more underdiagnosed than rare based on one doctor's finding four people who have it once she started testing for it. I believe that the four people were discovered over a period of a few years. That's a lot for just one doctor testing.

Genetic beriberi arises from a yet unknown/unmapped genetic instruction that tells the body to lessen and eventually stop its digestion of vitamin B1 (also called thiamin or thiamine). This is similar to the lessening of absorbtion of vitamin B12 that some people experience as they grow older, a condition for which people were seldom tested decades ago but which is commonly looked for now.

Genetic beriberi CAN BE FATAL. It can cause irreparable lesions in the brain. It causes fatigue at the mitochondrial level of the cell because the mitochondria cannot produce energy efficiently without vitamin B1. It can cause brain stem changes. It strips myelin from the nerves, including the nerves of the brain. It is also incredibly easily treatable, and it appears that a great deal of the muscular damage/disability and some of the cognitive problems it causes can be reversed.

In North America and Europe, doctors on the whole DO NOT test for vitamin B1 deficiency/beriberi unless the person is suffering from overall malnutrition, or unless the person is a chronic alcohol abuser who does not take much vitamin B1 in through their diet. A person with genetic vitamin B1 deficiency can be in serious vitamin B1 starvation without appearing malnourished, without ever touching a drop of alcohol, and while taking in ample vitamin B1 through their diet. The problem with the genetic variant of beriberi is that no matter how much vitamin B1 the person is eating or taking orally in the form of vitamins, the body's mechanism to break it down in the intestines is malfunctioning and therefore B1 passes unutilized through the system and is excreted intact. MOST DOCTORS DO NOT KNOW THAT A GENETIC FORM OF BERIBERI EXISTS, THEREFORE THEY DO NOT LOOK FOR IT EVEN IF THE PERSON DISPLAYS SEVERE SYMPTOMS OF IT. The National Institute of Health (U.S.A.) http://www.nlm.nih.gov/medlineplus/ency ... 000339.htm does now recognise that genetic beriberi exists, but only because I wrote them citing my doctor's research into it after she diagnosed me with it and asked them to please look into it and post information about it on their beriberi page. Genetic beriberi is only on the very edge of medical recognition at this time, so people need to spread awareness of it to those who may have it. It can be found by a simple blood test - merely finding out the level of B1 present in a person's blood. It is treatable by the person injecting vitamin B1 (for life) since though the stomach can no longer break the B1 down, the muscle tissues still can.

The symptoms of genetic beriberi can vary widely from person to person. There is a possibility that the lessening of B1 absorbtion can happen quickly or over decades (no one is sure what dictates the time frame for absorbtion shutdown). When the body goes into B1 starvation, it harvests B1 from the myelin sheath covering the nerves as this is the body's best source of "backup" vitamin B1. Loss of myelin results in symptoms that are similar to MS and Fibromyalgia

The symptoms can include but are not limited to:
Increasing tingling and loss of sensation, beginning with the extremities and working toward the torso. Tingling may or may not be present and can be present in some extremities but not others.
Loss or lessening of ability to taste food or smell odors. Can be mistaken for a similar side effect of depression.
Loss of hair on the backs of fingers, hands, feet, and toes
Loss of hair on arms 
Thinning of hair on the head 
Increasingly poor vision
Increasingly poor hearing
Trouble thinking/cognitive fogginess
Memory problems, long or short-term or both
Unexplained fatigue
Unexplained pain, pain that is non-responsive or barely resposive to pain medication
Unexplained muscle stiffness, stiffness that is non-responsive or barely responsive to muscle relaxants
Difficulty writing or holding a pencil, much like that seen in Carpal Tunnel Syndrome, may be misdiagnosed as Carpal Tunnel Syndrome despite additional numbness of other parts of the body
Irritability
Depression
Pain that has been diagnosed as "psychosomatic"
Pitting edema in warm extremities
Increasing problems with muscle coordination
Increasingly frequent falls
Change in gait
Increasing problems with balance
Trouble with word recall and speech syntax
Increasing problems with muscular coordination of speech/slurring words
Unexplained muscle weakness
Insomnia or sleep disturbances
Sudden Cardiac Failure
Headaches
Anger over & above the norm for situations
Poor or heightened appetite
Crying jags (my experience, I don't know about anyone else)
Antidepressants or mood stabilizers have little to no effect on mood
Swelling at base of neck despite thyroid levels being normal
Eyes pronounced/slightly bulging despite thyroid levels being normal (my experience)
Self-mutilation or binding of extremities as a way of coping with tingling and lack of sensation (especially if the individual has limited or no means of verbal expression), can be mistaken for suicide attempts
Rocking, listening to loud music, banging head/causing pain or injury to oneself, frequent or constant swiveling in swivel chair, or other means of heightening sensory input since touch, taste, hearing, and smell are dulled
A label of "Overdependence" on others as cognitive function wanes, ability to process emotions wanes, and pain wears the person down
Change in handwriting (my experience)
Inability to comprehend, plan, or carry out activities that once presented no difficulty
Difficulty focusing/concentrating
Loss of interest in sex/can't feel much physical sensation sexually/unable to achieve orgasm because the person cannot get enough stimulation to do so despite what should be adequate or more than adequate stimulation
"Dwelling" on problems -- cognitive and emotional processing are lessened, so person makes repeated unsuccessful attempts to cope with stress
Increasing muscle tics or spasms (my experience)
An official/medical/psychological characterization of the person as being unwilling to face their problems/overcome their challenges when people who know the person well know the person is making every effort to address the problem (this just seems to be a trend in those diagnosed)
Neurological deterioration
Deterioration of heart, brain, and peripheral nervous system

Healing from beriberi is painful as the myelin rebuilds and nerves regain feeling, but the pain does abate and the muscles can again become functional to a great degree (too small a sample size so far to say how much). Though I referred to Ruth Ryan, M.D.'s (along with Suzanne T.V.P. Sundheim, M.D. and Bronwen Magraw, M.D.) paper "Beriberi Unexpected", I take all responsibility for the above content and any unintentional misinformation it may contain. Persons with genetic beriberi may need to boost their intake of other B and water-soluble vitamins while the system's B1 level is restored. Consumption of fermented teas and fish may interfere with absorbtion of B1.

Thanks for your time and take care


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## Wellington (Dec 29, 2007)

Long editing session there bud :clap I actually have alot of those symptoms. I might go get tested just for the hell of it.


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## proximo20 (Nov 25, 2006)

This is a great work. I also think that thiamin is essential and maybe the cause of all these problems, but I can find in HCL form. I have noticed that supps in this form hurt my stomach. Do you know any pure thiamin supplement?

Also in some cases, insulin requirements are reduced with thiamine therapy.
[Neufeld et al 1997].

So this may also help for my hyperinsulemia problem.

The thing is thiamin is also necessary to produce stomach acid, so a deficiency would cause indigestion of food and cause lots of mineral and vitamin deficiencies.

My sister who is a pharmacist always says you have to digest food properly otherwise how are you going to interact with outside when you are busy inside

I think she has a point.


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## Beggiatoa (Dec 25, 2004)

Twinlabs has a mononitrate form. Source naturals sells a co-enzymated form for those with absorption issues. There's also benfotiamine. For you, it would offer a triple punch. First, it increases TPP (an activated form of thiamin in the body, it reduces AGEs cause by high blood sugar and it can reduce diabetic neuropathy if any.


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## proximo20 (Nov 25, 2006)

You know when I read two years ago about thiamin, I was thinking wouw this probably is going to solve my problems. *But with this supp I think timing is crucial.*

Because either insulin resistance or candida you have you got there sugar cravings which is a sign of hypoglycemia.

*So I remember now that I took thiamin hcl on empty stomach. But the proper way would be to take it just before a meal or with meal. *

I am ordering both benfothiamin and twinlab's thiamin.

"Ruminants and young non-ruminants" this made me remember what I wrote to you a while ago. In nature animals with strong digestive systems are courageous. I believe that both candida or other deficiencies or problems are directly and strongly related to our digestive system.

But before ordering those you probably tried thiamine. How is your experience so far?


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## Beggiatoa (Dec 25, 2004)

proximo20 said:


> You know when I read two years ago about thiamin, I was thinking wow this probably is going to solve my problems.


--Shame on you for not sharing! :lol



proximo20 said:


> But before ordering those you probably tried thiamine. How is your experience so far?


--I ordered 3 kinds. Right now I'm taking the twinlabs and the coenzymated form. I'm saving the benfotiamine for last. Honestly, do I feel anything? It's hard to say. I think the effect is very subtle. But as of the last few days, I find that I drink less water, I have less dizzy spells especially while riding in a car, and I don't get as dizzy when I stand from a squatting position. Also, the first few days I started taking it, I felt like crap. This is what the research said would happen. I'm hopefull but I think the effect will be felt over the weeks and not right away like with magnesium. Also, my insomnia is better and I find that I'm getting tired at a reasonable time instead of the usual 3 or 4 AM.

Also, Maybe I should try taking the thiamin by itself. Right now, I'm taking supplements for excess estrogen, undermethylation, berry extracts, stuff for ADD, plus minerals, taurine, EFAs, chlorella, spirulina, magnesium, stuff for candida..you get the picture. I think I'm going bankrupt :rofl

I think I'll do that. For the next week, I'll take nothing but thiamin to judge the effects better.


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## mikeybarn7 (Apr 4, 2014)

*Amazing Post Thank you Thank you!!*

Wow, what a great post. Thank you so much for sharing. All too often people only come on to forums when trying to discover whats wrong with them. Very rarely people come back and share what they have discovered, so thank you for that.

I have discovered I have a thiamin deficiency from test I have had 5 years ago and then another test in the last 12 months. I had been supplementing B1 in these 5 years so obviously not absorbing. I have pretty much all the signs and symptoms described here and it had been getting worse. My dad, wether he admits is also has alot of these symptoms too and there is a inability to handle stress like I see in nobody else. Highly irritable for no reason (is not a drinker)along with alot of other symptoms. He actually benefits from benfotiamine.

I come from an Iranian background and so my diet has contained alot of white rice which i know interferes with Thiamin absorption. I have only just recently come across Thiaminase from fish which doesnt help. Does anyone know if fish oils contain Thiaminase? I know certain fish like cod do not have this enzyme.

Im from the Uk and wanted to know if anyone can tell me how I can get IV B1. I know there isa cream called TTFD which goes in transdermally.

Anyway thanks for sharing - this could actually be one of those pivotable moments for me where I have more of an understanding of whats going on which has to be more than half the battle.


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## GotAnxiety (Oct 14, 2011)

Interesting.


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