I would like to begin sharing my story, hoping to help others. My journey is from a nurse’s perspective. I recently learned I am thiamine deficient and likely have been for years. Thiamine deficiency affects the mitochondria, causing a disease process known as beriberi. Beriberi mimics many other illnesses, making it very difficult to diagnose. Let me begin by giving you a background about the woman I was before thiamine deficiency depleted my entire being.
I have always been highly driven. I am perfectionist to a fault. I was an honor student in high school, an active- athlete, a cheerleader for four years. I loved swimming, ice skating, rollerblading, skiing, and all sports. I led many extracurricular activities throughout high school and college. As the oldest of 5 siblings, I was the family leader and caregiver as well. I was always strong mentally and physically. I had survived spinal meningitis at age 5 years, after receiving my last rites while hospitalized in isolation several months. I lost my father shortly thereafter, but I survived.
I was a successful RN for nearly thirty years; a gynecological oncology nurse the first 20 years, and a postpartum nurse caring for mothers and their newborns the last ten years. I was married and had two children and even though I worked full-time, I was an avid volunteer, for activities involving both daughters through their elementary and high school years. I was the first and only woman president of my neighborhood association, organizing many monthly events throughout the year. I cared for my mother through ten years of Alzheimer’s. No family member was hospitalized without me as their private duty nurse advocating. I cared for my father in-law through colon cancer, then moved my mother-in-law in with us for 15 years after he died. I watched over her into her 90’s. Then I suffered loss upon loss: my mother, my father-in-law, several aunts, and two beloved family pets, followed by an awful divorce from my high school sweetheart.
Looking back, I understand why my marriage fell apart, I became a woman I barely recognized. I was in pain all the time. I was tired unable to be the “active fun loving Jane,” I had once been.
In 2006, I developed degenerative disc disease (DDD) in my neck, which ultimately led to a cervical fusion. Nevertheless, I returned to hospital nursing 8 weeks later and worked until I could no longer get through the nonstop days without pain. My nursing manager talked me into management after 28 years as a bedside nurse, which I loved. Then, I suffered a lower back injury that, together with my neck issues, incapacitated me from my nursing career. After losing my career, my marriage, and my home, I moved away from the home town which I loved. Multiple losses, stressors, and what I now believe was thiamine deficiency had me suicidal.
I tell you this, because the thiamine deficiency was insidious. It accrued over time. I was performing and had more energy than most… until one day, I didn’t.
My Silent Demise: Unrecognized Thiamine Deficiency
As I mentioned above, I developed DDD in 2006, and as result, I have suffered for years with intermittent nerve pain and muscle weakness. Over the years, the pain and weakness progressed to the point where by 2019, I could no longer walk or function. I had great fatigue, insomnia, depression, anxiety, and lack of energy. This was in addition to GI distress and signs/symptoms of IBS irritable bowel syndrome. I also had serious bladder issues of great urgency, leaking and even incontinence at times. Over time, I developed significant brain fog and cognitive difficulties. This included a “loss of words,” an inability to read and retain information or eventually, to write; all of which I had always loved doing. I began having memory issues and my nervous system seemed to be shutting down.
Looking back on my history, I had been hospitalized for chest pain 3-4 times ruling out pulmonary embolism or heart attacks. I have had a vitamin D deficiency for over 10 years despite supplementation and good diet and plenty of sunshine. My platelets ran high on and off for years. A hematologist ruled out many disease processes through lots of blood work. He even did a hip bone marrow aspiration and never found answers.
My blood pressure at one point was 200/100. I had tachycardia documented on EKG and on my own nursing checks. Heart palpitations were common. I sought the care of a few cardiologists over the years and had a number of cardiac tests all with no answers. I was frequently dizzy, seeing stars, and nearly passing out on many occasions. Five years ago, I was severely depressed and suicidal. I had lost so much weight, and looked anorexic at 108 pounds. Looking back, I have no idea how or why I had such rapid weight loss. Then the weight issue shifted.
By the end of last year, I had difficulty walking. I gained weight and have now been walking that fine pre-diabetic stage. I seem to be insulin resistant now. Added life stressors, once again caring for my sick and aging 81 year old aunt with multiple medical issues, has led to self-neglect. I became short of breath on exertion, weak and faint. I began losing my hair. Thankfully, I once had a thick full head and so the hair loss was not immediately noticeable. Even so, I noticed, and I begged my doctor to help me learn why my hair was falling out and thinning so much but my concerns were made light of.
I pleaded with many doctors, asking to learn the cause of my multi-organ system’s failings. I suspected they were medication effect or vitamin deficiency related but several good doctors rolled their eyes when I begged to be tested.
I grew weaker and weaker, sicker and sicker as 2019 came to an end.
The Laundry List of Tests and Doctors Conclude: It’s All in My Head
An MRI in January 2020 showed cervical myelopathy but not significant enough to warrant more surgery (THANK GOD). The orthopedic surgeon and his nurse practitioner, offered Gabapentin (as did 5 other doctors) and physical therapy (PT). I refused the gabapentin because it had made me incoherent in the past. I agreed to try PT but was frustrated, since I had tried physical therapy more times than I can tell over the past ten years. This last time, in February, just the PT evaluation magnified all my symptoms and I barely walked back to my car. Returning to my vehicle, I felt like I was on fire with burning nerve/muscle pain all over.
Again, I adamantly refused meds without learning the cause.
I was sent to have an EMG (nerve-muscle functioning testing). The EMG showed multi-nerve damage, or “multiple peripheral neuropathies.” That was in March of this year. I had been twice before to this same physiatrist having EMG’s years prior due to ongoing “nerve pain.” Like many other doctors, he never suspected thiamine deficiency and implied that it was “all in my head.”
I was sent to another consult, a Brown University rheumatologist, who basically told me the same thing that my pain was “in my head,” as most docs do seeing history of “depression and chronic pain.” On exam, I actually jumped when he touched my outer thighs and various areas on my body. I was super “nerve sensitive,” which he was attributing to “my mind.” Outer thigh pain/ sensitivity was a symptom of thiamine deficiency I’d later learn. After my RN daughter, acting as my advocate, spoke on my behalf asking for nutritional deficiency testing to rule out causes, he tried ordering labs but had little knowledge of what to order and “could not find the transketolase test or a simple Vitamin B1 test on my screen,” he replied. To appease me, he ordered multiple other labs and sent me on my way with no diagnosis and no return appointment.
For the multitude of GI symptoms, I was sent to a caring gastroenterologist who performed a colonoscopy and endoscopy with insignificant results and biopsies all normal. He too was empathetically puzzled, urging me to request a thoracic MRI due to my history of degenerative disc disease. Upon exam, this doctor was alarmed at my sensitivity at my breastbone area when touched. It was painful and clearly inflamed.
I had all the symptoms of multiple sclerosis (MS) too, so I had a brain MRI with and without contrast that I asked for after researching my symptoms, wanting to rule out MS too. The MRI showed: “a single small focus of flair hyper-intensity within the frontal lobe white matter, nonspecific and could not rule out demyelinating disease or MS…”
They ruled out “pinched nerves” in a thoracic MRI, recommended by the GI doc after not finding answers to my GI symptoms. I had repeated X-rays and a lumbar MRI having a lengthy history of lower back pain too.
The lumbar MRI incidentally found gallstones which sent me to a surgeon who recommended gallbladder removal. In this COVID environment, I have minimized symptoms with better diet and supplements thus far.
Discovering My Thiamine Deficiency: A Bit of Research and a Bit of Serendipity
In February 2020, I had begun reading the book “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition,” written by Dr.’s Lonsdale and Marrs. From the case studies and the research, I knew that I had thiamine deficiency. The trick now was to get someone to believe me. I brought the book to an upcoming neurologist appointment. Although, with each of the 7 previous consults, blood work was done, it was this last consult, with an astute neurologist, that I found out why. He knew after examining me and listening to me that I was deficient in thiamine. He took the time to research my history and found that I’d been diagnosed as thiamine deficient 5 years ago, but sadly, no one told me. In 2015, lab tests showed that my thiamine was 6 nmo/L , below the lab’s reference range of 8-30 nmol/L. I was still deficient in thiamine in February 2020 with a result of 7 nmol/L. He explained that I “needed to take 100mg thiamine daily, starting immediately and that it would likely take 6-12 months to hopefully reverse symptoms.” He also indicated that I would need supplementation for life now. As I have continued to research and read about thiamine deficiency, I learned that I would likely need much higher doses of thiamine, in the form of something called TTFD. TTFD is a synthetic thiamine that crosses the blood brain barrier getting into the cells better.
A Possible Family History of Latent Thiamine Issues
I continued reading, researching, and learning from case studies and groups. Thiamine deficiency is much more common than thought today. It can be passed on at birth in an unknowing deficient mother. Looking back, I fully believe my mother was deficient given her history of problems in school, high anxiety, and severe depression on and off for years. Her symptoms worsened with divorce when she was still pregnant with her fifth child. Each of her children were born only 12 – 13 months apart! I recall her getting dizzy, feeling faint often. She suffered with leg pain for years.
I am most concerned over the genetic factors influencing me and my family. The first stages of thiamine deficiency see thyroid issues, which my mother, sister, and aunt all had/have. Diabetes runs in my family: my grandmother, aunts, sister, and I’m now at the pre-diabetic stage. Cardiac issues are often seen: my grandmother, mother, aunt, and I have had them. GI issues also are noted in multiple family members. The most worrisome disease is Alzheimer’s disease, which is often seen in late stages of thiamine deficiency according to research. My grandmother, mother, many of her sisters (now deceased) all had Alzheimer’s disease. I am currently seeing early Alzheimer’s and short-term memory loss in my 80 year old aunt and her 75 year old youngest brother.
I have been monitoring my aunt who could not tolerate the Alzheimer’s medications that she was given. I began using thiamine with her in March 2020. We began with a good B-Complex having 100mg thiamine mononitrate and then added 50 mg Allithiamine in mi- July when she got very sick with what I believe was Covid-19. I kept her on this dose through August and then upped it to 100mg in September. I am now seeing improvements. Her energy has improved greatly. Although still forgetful, her memory is improving. She recovered after three weeks with the virus, yet suffered with extreme fatigue many weeks to follow. I will write about her story in a subsequent post.
The Path to Recovery
As a nurse, journaling my symptoms, diet, supplements, and vital signs, etc., I have watched my symptoms, rated on a scale of 1-10 with 10 being worse, go from 7-8s down to 3-4s over the last 6 months, after beginning thiamine replacement. I have been thoughtfully self-experimenting, slowly increasing my TTFD, using the brands called Allithiamine and Thiamax along with magnesium and potassium for proper absorption. Since rebalancing thiamine often brings out other deficiencies, I alternate a good multivitamin/mineral supplement and B-Complex and take probiotics for good gut health and better absorption. Over the last 6 months:
- My neuropathies, which were tested pre-thiamine in February 2020 and again in June 2020 after a little over 5 months into thiamine treatment, are reversing.
- I am off all pain meds, antidepressants, and other scripts (weaned under supervision SLOWLY).
- I am happier, calmer, healthier overall.
- I am most impressed with my renewed desire and ability to read, write, and research and retain information learned!
I’m now so hopeful for a good recovery by next spring. I understand I will need thiamine supplementation for life now, hopefully in lower doses eventually. Time will tell.
Drugs Don’t Solve Vitamin Deficiencies
With this experience, I have learned that there is no one easy answer for all as far as dosing goes. Replenishing thiamine requires careful rebalancing of other vitamins and minerals, as most people have multiple nutritional deficiencies. Prior to supplementing with TTFD, my labs showed Vitamin D deficiency for over ten years and low thiamine since 2015. If not for the COVID environment, I would have been hospitalized for IV thiamine treatment and looking back now, probably should have been.
I hope my story here can in turn help others find answers which sadly so many Western doctors seem to miss. Nutritional knowledge is barely taught in medical school. I hope that changes, as malnutrition is often the root cause of many diseases. I know all too well how frustrating it can be to go from doctor after good doctor who only know what they are taught: “treat symptoms with drugs.” Sometimes, it takes one’s own persistence, research, and being proactive to regain wellness. Of course, wellness means cleaning up the diet by avoiding processed foods, carbs, and sugar. Recovery takes eating clean, whole organic foods mainly. It means balancing exercise, sunshine and good mental health. It takes looking at your environmental toxin exposures. It means DE-stressing and cutting back on EMF’s. It takes changing your lifestyle but most importantly, listening to your body and allowing rest and recovery and above all, a well-balanced life.
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