My Story

First, a brief history. I’ve been sickly for much of my life (I’m 53). The worst of it has been the past 9 years, when my fatigue became overwhelming, making me bed bound for more than half the day after being active.

I spent most of my life underweight. Two years ago, I finally managed to figure out how to put on weight (by supporting methylation). The photo on the left shows how I looked for most of my life. — I supported methylation by taking lecithin (for choline), and I was also helped by high dose vitamin c. This was before I started thiamine. I suspect it was high homocysteine that was keeping me thin.

My Symptoms

• Chronic tachycardia
• Arrhythmia
• Inability to maintain electrolytes
• Swollen ankles
• Orthostatic hypotension
• Chronically low Blood Pressure
• Diagnosed with dysautonomia, and tried on several medications, all of which made me worse.

Improving My Health

I knew to expect a paradoxical response, per Drs. Lonsdale and Marrs. Increasing co-factors like magnesium and potassium helped, as did going very slowly.

I started out with 10 mg thiamine hcl and reacted to even that small amount. I eventually added a b complex and b12 drops.

I take thiamine hcl. For many weeks I took allithiamine, too, but I stopped tolerating it. I now take 310 mg thiamin hcl daily.

Health Gains in 3.5 Months

• Increased energy in general
• Increased exercise tolerance
• Raised BP by roughly 20 systolic points: huge gain for me. (I spent decades blacking out upon standing). I am now regularly around 110/70. If I get exhausted by physical activity and/or stress, it drops again.
• Heart rate normalized
• Arrhythmia almost non-existent
• No more heart palpitations after eating
• Got rid of the constant awareness of my heart
• Now able to walk rapidly
• Ankles rarely swollen now (used to be swollen everyday, particularly if I was active that day)
• Able to maintain mental clarity even after active or stressful events (until very recently, I could not think clearly after a day of teaching — used to have to ask my husband to speak slowly and break down complex ideas into simple ones after I taught, because my fatigue affected my cognition. That’s gone now.)
• Very rarely get costochondritis — it used to be a regular, painful complaint of mine. I was astonished to learn that costochondritis is caused by thiamine deficiency, especially since costochondritis is a common complaint in those who suffer connective tissue disorders (and they/we are led to believe it’s caused by genetically faulty connective tissue).
• I sleep through the night now, even if I was active that day. Until recently, if I was active — and in my limited-energy world, active might mean as little as attending a party — I would have great trouble falling asleep, and then I would awaken in the night after 4 hours of sleep and be awake at least 1 to 2 hours. That’s gone, and good riddance.
• No more debilitating menstrual periods. I suffered great pain with my period for over 35 years.
• No more stuffy nose at night when I’m exhausted.
• Remembering my dreams again for the first time in about 5 years.
• I wake up singing. I report this not as an indication of mood so much as an indication of energy — I simply never possessed the energy required to sing, especially not in the morning.
• I wake up early now. Completely new and no more “jelly legs”
• I’m probably forgetting other gains — if I remember more, I’ll add them.
• One thing that hasn’t gotten better yet is bad abdominal bloating. Hoping that improves if I keep titrating thiamine. I have low stomach acid — any ideas how to increase that are welcome.
• And I still tire far easier than a “normal” person, but it’s only been 3.5 months — I’m elated at the gains so far.
• Thank you to everyone in this great group for your help and knowledge.

Summary

In short, I showed signs of beriberi, but it was not recognized by doctors. I figured it out thanks to this group.

Because I was so deficient, starting thiamine was difficult for me.

The post Lynne’s Unrecognised Beriberi for Decades appeared first on Understanding B1 Deficiency.