Thiamine Thiamine Thiamine

I developed vitamin and mineral deficiencies before my diagnosis.  

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Thiamine deficiency made me have a voracious appetite at some times and at other times, I had no appetite at all.  Thiamine affects the satiety center in the brain that tells you to eat more or you've had enough.  

Thiamine deficiency also causes nausea.  I would wake up ravenous, but have nausea so bad I didn't want to eat.  Nausea sometimes occurred after eating.  My food just sat there and didn't seem to move.  Gastroparesis, where your food doesn't get squished through the intestines at a regular pace, can also be attributed to thiamine deficiency.   Later I developed non-stop diarrhea and gastrointestinal pain and cramping (Gastrointestinal Beriberi is caused by Thiamine deficiency).  

Thiamine deficiency causes anxiety.  My doctors threw a variety of antidepressants at me, but they didn't work and made things worse.  Many antidepressants (and other pharmaceuticals like PPIs) can inactivate thiamine so the body can't use it. 

Thiamine deficiency causes fatigue.  The fatigue I felt was awful and unrelenting.  

Thiamine deficiency affected my balance.  I waddled.  My hair started falling out by the handful.  My vision became more blurry.  I had painful migraines.  I began having ophthalmic migraines (thiamine deficiency affects the optic nerves).   I had menstrual problems.  I had cramps in my muscles.  I'd wake at night with Charlie horses.  I felt faint when standing or moving about and sometimes my heart raced too fast or skipped a beat (Postural Orthostatic Tachycardia Syndrome -POTS - another thiamine deficiency disorder).  I started stuttering, and then slurring my words.  My voice became hoarse and at times I could not speak at all.  I forgot things easily.  I got frustrated easily.  I had difficulty concentrating.  I had difficulty with regulating emotions.  I could not read and understand things.  I could not remember verbal instructions.  I could no longer read and knit lace from charted knitting patterns.  I became very despondent.  

But I remembered that half a dozen doctors had asked me if I drank.  I would respond no, alcohol makes me sick. The doctors would scratch their heads, shrug their shoulders, and walk off.  No answers.  But that question rang a bell somewhere amongst the cobwebs.  I had to dig out my notes from university....Thiamine deficiency is most commonly found in (postmortem) alcoholism.  And malabsorption disorders like Celiac Disease!  

I stumbled upon Dr. Derrick Lonsdale who has studied Thiamine Deficiency Disorders outside of alcoholism for years.  Thiamine deficiency presents differently outside of alcoholism.  Eventually, severe thiamine deficiency symptoms outside of alcoholism overlap with alcoholic thiamine deficiency symptoms.  Those doctors saw those same severe symptoms, but they didn't treat it because I didn't drink alcohol.  If it walks like a duck....

So, I started high dose thiamine as Dr. Lonsdale described.  I took over-the-counter Thiamine Hydrochloride and had improvement within an hour.  I added in Allithiamine (TTFD - Tetrahydrofurfuryl Disulfide), a form of Thiamine that can cross the blood brain barrier by itself.  My brain started working again!  

I had other vitamin deficiencies concurrently.  Malabsorption messes with all the nutrients.  Thiamine deficiency symptoms show up first because it runs out fastest.  I had Vitamin D deficiency, Pellagra, Scurvy, and anemia.  

I eat Paleo.  I found that eating healthy fats (Omega Threes) is key.  The satiety center in the brain signals that full feeling after eating sufficient fats.  Olive oil is great.  I ate small meals closer together while I healed.  

A diet that is high in carbohydrates would make me feel awful.  Eating a large amount of carbohydrates at a meal demands an increased amount of Thiamine.  Carbohydrates like white rice and processed foods don't contain sufficient thiamine to digest and convert them into energy.  

I took vitamins and mineral supplements in order to give my body the essential building blocks it needed to repair and recover.  I feel much better now.  I can knit again!

I hope this helps.

References:

Hiding in Plain Sight: Modern Thiamine Deficiency by Dr. Derrick Lonsdale and Dr. Chandler Marrs

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And...

Thiamine Deficiency: Appetite and Eating Disorders

http://www.hormonesmatter.com/thiamine-deficiency-causes-problems/

And...

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

And...

Omega-3 Fatty Acids And Inflammation – You Are What You Eat!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8846546/

And...

The importance of thiamine (vitamin B1) in humans

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10568373/