Thiamine Deficiency – Life Disrupted

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My hope in sharing this story is that others who have similar symptoms might be tested to discover if they’re dealing with the same deficiency. It’s been a life-changing experience! 

A chronic illness had pushed me out of my secure life and job, into a land of chaos… of doctors, specialists, tests, and hospitals. I had to make a choice, A) keep trying to drive to work, trying to function sick and exhausted, or B) just stop and take care of myself.  My body made the choice for me.

Dealing with a severe loss of coordination, chronic fatigue, muscle weakness, neuropathy, random eye movements and double vision (ya, that was sooo freaky), and a long list of other symptoms, I was forced into not working and extreme self-care.  At first it was with a fair measure of resistance.  Throughout the experience, I kicked and screamed at the Universe, shouting inwardly, (and sometimes outwardly)  “NO, no way, you’re not stopping me!”  I did what I had to in order to try to keep going.  I stopped all social activities, ate dinner after returning home from the office and went to bed by 8:00, slept long hours, took naps at lunch time, changed my diet to all clean, fresh foods.  I cut back office hours, tried working from home occasionally, took more sick days… nothing worked.

Surprisingly, on paper my physical system was healthier because of lifestyle changes, however I still suffered with strange, chronic, debilitating symptoms, and my doctors were baffled.  I was now using a cane for walking, a shower chair to shower, and I had stopped driving, so family was having to take me for appointments and tests.  My body said no more.  When I realized that resistance was futile (stolen phrase from Darth), I decided to surrender to whatever lay before me (very Yoda like), and to just trust the process.  I kept a sense of humor through all of this despite the circumstances.  It has been my coping mechanism.

After the long line of doctors and specialists, hospitals and tests, I was referred to another specialist.  This time a neurologist.  He discovered that I have been suffering with a rare deficiency that does not typically appear in the U.S.  I am deficient in thiamine, or B1, which has been the cause for the chronic physical symptoms (referred to as BeriBeri disease in the tropics).  Most U.S. cases appear as a result of alcohol abuse (I don’t drink alcohol), or gastric bypass patients (nope, I haven’t had this surgery).  For an as yet undiscovered reason, my body stopped absorbing the vitamin from food, and started declining in its functional abilities.  The recommended daily allowance typically obtained through food is 1.1 mg in the U.S.  Treatment for me is 100 mg. per day.  this is high dose that I may take for the rest of my life.  Time will tell.

It could be worse.  Advanced thiamine deficiency in those individuals who do not partake of spirits manifests as a disease called “Non-Alcoholic Wernike’s  Encephalopathy.”  Scary stuff!  If this very wise neurologist hadn’t discovered the deficiency, I would have further declined, with loss of memory, hallucinations, and finally coma or death.  (Whew! I am one fortunate soul!)  After three months of treatment, I am seeing improvement in symptoms and am very slowly returning to living a more normal life.  I am told that in six to twelve months, I will see even greater improvement in physical health and abilities, and perhaps a full recovery.

I’ve read a couple of firsthand accounts of individuals in the U.K. who had developed the more severe symptoms as a result of advanced thiamine deficiency.  In some cases they were wheelchair bound with symptoms so severe they were not able to participate in active daily living.  With many trips to a variety of specialists, they too were fortunate enough to come across the wise doctors who found this rare deficiency, and started treatment, literally saving their lives.  It’s become clear that the test for this deficiency is not common.  It does make me wonder how many other people out there suffer with thiamine deficiency, have the symptoms and have not been tested.

I’m interested in hearing from others who live with this deficiency and are receiving treatment.  Please share your story.

 

 

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4 responses »

  1. The symptoms sound really scary and given the huge impairment they create I’m totally flabbergasted you managed to keep your sense of humor. I honestly think I would have lost it. Not just the humor, I mean.
    I had a B12 deficiency accompanying my burn-out, which wasn’t half as bad as what you are going though, but certainly bad enough to have an idea about the never-ending fatigue and exhaustion.
    You do sound like have found a very healthy way to deal with it. And with healthy I mean physically as well as mentally. I hope that you will recover as fast as humanely possible. And I kind of feel like you probably will enjoy life ten times more after that than before.

    • In the very midst of it (August) I was a hot mess, that’s for sure. The recovery is pretty slow, but it’s happening and for that I’m incredibly grateful. Just being able to walk without a cane feels fabulous! I have a new-found appreciation for health and living doing things I enjoy. Thriving instead of surviving.

      • I can imagine, yes, I share your new-found appreciation for health. I also have developed a much more respectful relationship with my body. For that I am very grateful, too.

  2. Glad to hear you are making headway!

    Also – do you still keep in touch with anyone from COD? I am looking for an introduction to someone in the culinary area. We are exploring some options here for the Sisters Dining Room and I would like to work with their students and chefs. Any help would be much appreciated.

    Mary Krystinak
    Director Our Lady of the Angels
    And Sisters Healthy Living Services
    Wheaton Franciscans
    630-909-6630
    mkrystinak@wfsisters.org

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