How I Found My Long-Lost Energy

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As a 24-year veteran fibromyalgia patient, I became accustomed to not having much energy.  For many years the fatigue was so bad, most days it was a struggle just to get out of bed.  Then a few years ago, I began taking Ubiquinol (CoQ10) and NADH.  They helped quite a bit, increasing my energy levels enough that I was able to continue supporting myself by working from home on a computer.  But doing that work took up just about every ounce of energy I had gained.  There was very little left over to do much else. 

Then a little over a month ago, a new fibromyalgia study caught my eye – “High-dose thiamine improves the symptoms of fibromyalgia.”  It was a very small study conducted by a group of reachers in Italy.  In fact, the study was so small – only three FM patients – that I normally wouldn't give it much weight.  But the dramatic improvement in fatigue and pain levels experienced by all three participants piqued my interest. 

Below are the results for each patient following 20 days of high-dose thiamine therapy:

  • Patient 1: 71.3% reduction in fatigue; 80% reduction in pain.

  • Patient 2: 37% reduction in fatigue; 50% reduction in pain.

  • Patient 3: 60.7% reduction in fatigue; 60% reduction in pain.

Wanting to know more, I contacted the lead author, Dr. Antonio Costantini.  I learned that in addition to the fibromyalgia study, the same group of researchers had also been studying the use of high-dose thiamine (also known as vitamin B-1) for several other diseases in which fatigue was a significant factor (including ME/CFS) – all with similarly impressive results. 

The Story Behind the Research

In June 2010, Dr. Costantini and his associates noticed that the fatigue and related disorders in patients with ulcerative colitis improved after therapy with high doses of thiamine. From that they formulated an hypothesis: “Chronic fatigue that accompanies inflammatory and autoimmune diseases could be the clinical manifestation of a mild thiamine deficiency, probably due to a dysfunction of the intracellular transport or due to enzymatic abnormalities, and responds favourably to high doses of thiamine.”
 
The study authors stated, “From that moment, we systematically searched for and treated with high doses of thiamine chronic fatigue, when present, in any type of disease.” Not surprisingly, one of the diseases they decided to test this therapy on was fibromyalgia, since fatigue is a major symptom for most people with FM.
 
While researching the scientific literature on thiamine and FM, they came across a 1998 study that stated, “A number of similarities exist between Fibromyalgia and thiamine deficiency. They include irritability, frequent headaches, unusual fatigue, muscle tenderness upon pressure palpitation, muscular weakness, irritable bowel syndrome and sleep disturbance. Studies published in JACN [Journal of the American College of Nutrition] have demonstrated abnormalities of thiamine metabolism in FM.”

Learning More About Thiamine

By the time I finished reading through several of the high-dose thiamine studies Dr. Costantini sent me, I knew I wanted to try it out for myself.  But since the dose was so high, I wanted to be sure it was safe.  After all, thiamine is not a nutrient we typically hear much about.  In fact, until reading these studies, I knew nothing about thiamine except that it existed and was usually included in multivitamins as part of the B-complex. 

So I began doing some research and here's what I learned about thiamine:

  • Thiamine is another name for vitamin B-1.

  • It can be spelled as thiamine or thiamin.  The final “e” is optional.

  • Thiamine is an essential nutrient, meaning our bodies do not make it so we must get it from the foods we eat and/or supplementation.

  • Dietary sources of thiamine include legumes, beef and pork, Brewer's yeast, whole-grain breads and cereals, oatmeal, rice bran and wheat germ, milk, nuts, seeds and oranges.  When it comes to grains, it's important to eat whole grains because thiamine is found mostly in the outer layers of the grain and in the germ, both of which are removed during the refining process.

  • Thiamine is important for a variety of bodily functions, including nervous system and muscle functioning, carbohydrate metabolism, healthy digestion and more.

  • A severe thiamine deficiency results in a condition known as beriberi, which can be fatal if left untreated.

  • Up until now, thiamine deficiency was thought to occur most often in alcoholics, the elderly, people with malabsorption syndromes and people on kidney dialysis.  However, newer studies are beginning to show that a mild thiamine deficiency may be more prevalent than once thought.

  • Thiamine is considered safe and nontoxic, even at high doses.  Few side effects have been reported.  Although no side effects were seen in the fibromyalgia study, a few people in other high-dose thiamine studies did report side effects like insomnia and tachycardia.

Interestingly, when given a blood test, many of the people in these studies had normal blood concentrations of thiamine, yet they experienced significant symptom improvement when taking high doses of thiamine.  The study authors speculate that this “may indicate a dysfunction of intracellular thiamine transport or structural enzymatic abnormalities.”

My Personal Experiment with High-Dose Thiamine

Once I was convinced that thiamine would be relatively safe for me to try, I decided to follow the basic protocol used in the fibromyalgia study.  Those patients started at 600 mg/day and increased the dosage by 300 mg every three days until they reached a therapeutic dose.  (It can take up to 48 hours to experience the effects from an increased dose of thiamine.)

The first patient reported dramatic improvement at 600 mg.  The other two did not experience any changes until they reached a dose of 1500 mg.  The final therapeutic dose for both was 1800 mg, at which time they reported an abrupt improvement.

Since I couldn't find thiamine in 300 mg tablets, I worked in 500 mg increments.  Within 24 hours of taking my first 1500 mg dose, I noticed a huge increase in my energy level.  I then tried taking 2000 mg to see if it made even more of a difference, but I actually felt a little worse, so I dropped back to 1500 mg/day and have remained there ever since. 

I can honestly say that my energy level now is much, much better than it has been in 24 years! 

By the third day after starting the 1500 mg dose, I almost bounced from one activity to another and kept thinking, “I feel so good!  What can I do next?” 

While I can't say I've also experienced the same reduction in pain as the study participants, I'm hopeful that will come in time.  But even if it doesn't, I'm thrilled with my increased energy!  It's a lot easier to cope with pain when you have the energy to move around and be more active. 

Need-To-Know Information About Thiamine

Following are a few additional pieces of information that are important to know about thiamine deficiency and supplementation:

  • Thiamine is water-soluble and can be taken with or without food.

  • Drugs, such as antacids, barbiturates, diuretics, alcohol and tobacco may decrease the body's ability to absorb thiamine properly.

  • Betel nuts and horsetail supplements cause a chemical interaction with thiamine that can damage its ability to work.

  • Eating raw seafood or drinking large amounts of coffee and tea can destroy thiamine's effectiveness.

  • If you are pregnant, may become pregnant, or are breastfeeding, consult your health care professional before taking thiamine supplements.

  • Diabetics are typically deficient in thiamine.  However, Dr. Costantini cautions that diabetics should keep a close eye on their blood glucose levels while taking high doses of thiamine because he has seen a couple of people whose glucose levels have gone up.  Benfotiamine is a synthetic form of thiamine that seems to be particularly effective for diabetes.

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