sensorineural hearing loss

Familial Beriberi: Discovering Lifelong, Genetic, Thiamine Deficiency

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In 2017, at the age of 52, I had an unexpected call from my new doctor informing me “I know what’s wrong with you! Come to my office now!” Lifelong increasing chronic fatigue and untreatable Hashimoto’s thyroiditis were my chief complaints.

Past doctors prescribed high dose thyroid medication, which made me feel worse. An autoimmune diet kept me trim but provided no energy. I read adenosine triphosphate (ATP) is required for thyroid production, though ATP isn’t discussed in treatment. Baggage from Effexor and an adverse childhood were also contributors to my health.

Desperate, every relevant supplement and thyroid medication on the market, I tried. Only two were effective. GABA relaxed me, and d-ribose cured my depression 100%. I became bubbly. My personality changed, but after four weeks they both stopped working. Amour thyroid lifted my brain fog for a week. Then, I had side effects. Eventually, I would learn that I, and many members of my family, across several generations, had beriberi or thiamine deficiency. In my case, I had a defect in a key thiamine transporter that made getting sufficient thiamine from diet all but impossible. Unfortunately, I did not learn this crucial information, until I was in my fifties, after years of illness and suffering.

Women’s Issues and Unrelated Problems Begin

While my problems began decades earlier, they seemed to hit a crescendo as I hit menopause. The HRT patch relieved hot flashes, only to fuel a fruit-sized fibroid that split in half with one part covering my rectum. A GP prescribed colon therapy causing severe leg cramps and constipation. A fibroid ablation enabled normal bowel function. Afterward, ozone baths caused my bowel function to stop and I developed air hunger. An ENT said, “you don’t have sleep apnea, there’s another system in your body that is causing air hunger.” He recommends a university clinic over going to different specialists.  I pursued genetics.

Starting to connect my cognitive decline, prediabetes, and depression in my grandparents to myself, I went to the MTHFR expert that wrote the report.  Her extensive 15-page genetic/supplement report offered no results. After failed treatments from endocrinologists, functional doctors, and big-name clinics like Mercola, I took a chance on Orthomolecular Medicine.

Discovering a Familial History of Beriberi

On the day I was diagnosed with thyroid treatment failure, I found a nutrient interaction article and had a light bulb moment, I’m missing a nutrient for thyroid production. I went to the author, the late Dr. Richard Kunin, San Francisco’s legendary go-to doctor for solving mystery illnesses through nutrients. He was a pioneer in antioxidant therapies, utilizing diet, nutrient and genetic testing since the seventies.  His orthomolecular research was the first to verify the use of a mineral therapy in a drug-induced disease.

When his door flung open, I saw wisdom. A rare commodity. Here was this brilliant doctor and a poster of his early collaborator Linus Pauling, staring down at me. Dr. Pauling coined the term orthomolecular meaning “the right molecule in the right amounts.” A doctor like this comes once in a lifetime and I handed him my three-inch binder.

A true scientist, he was able to assess my biochemical individuality, in two sessions.

In the doctor’s intake, the first clue is asking what my parents ate. They ate both Chinese and Western foods, which seemed like no big deal. After lab results, he searches through 300 genes, to find the biggest picture, the gene. Instead of trying to treat multiple gene defects with a supplement. He addresses the root cause first.

He announces, “You’re deficient in thiamine,” and gives me the SNP, called Transporter 2 (SLC19A3) which provides instructions for making a protein called the thiamine transporter, which moves thiamine into cells. Over time, the transporter dissolves.

I had thiamine and asparagine deficiency and riboflavin and glutathione borderline deficiency. The thiamine or vitamin B1 deficiency caused the other deficiencies, but he stays on point and discusses thiamine and only thiamine. He prefaces the session with a history of beriberi and birds fed white rice.  Looking back, it’s rudimentary B1 history, but as a patient stuck in the Hashimoto’s/Adrenal Fatigue paradigm for so long, my mind went blank. I remained silent, I didn’t know if I could die from it.

To make matters more confusing. I had stopped taking thiamine after an OATS showed B1 adequacy.

When he told me I can’t convert energy from food, I thought how absurd. He reminded me “the bottom line is how well you absorb the thiamine; not how much I tell you to take”. A Meyer’s Cocktail IV is an initial part of treatment. The next step is collecting data to prove the relevance of thiamine as an essential nutrient required to make energy.

When I Added Thiamine, My Body Began To Recharge

For the first time, I saw a difference in labs and body function. At 300 mg of HCL, my increasing A1C levels fell below the prediabetes range. I almost took metformin at one point, recommended by an integrative doctor. I felt the effects of B1 utilizing B6, through a lucid dream. Treating methylation since 2006, he says “B1 is the gateway to methylation.”  With before and after data, he points out B1 upregulating the folate cycling. My energy was increasing. Muscular problems resolved, elevated branched chain aminos were absorbing and TMJ and bruxism disappeared. This was just the beginning. familial beriberi - thiamine deficiency

I found the thiamine experts, Dr. Derrick Lonsdale and Dr. Chandler Marrs during my titration period. Nuances of thiamine used as a drug to make ATP are available with a detailed overview of beriberi, throughout Hormones Matter. Post to post, the doctors’ addressed every missing piece to my complex puzzle and more. They prompted me to take a closer look inside my dad’s past, one he rarely spoke of, and connections were made.

While titrating up, I had a short bout of diarrhea in the middle of the night. When I decreased the dose, I developed POTS for the first time, the room would spin 24/7 whenever I stood up. My GP referred me to the ER. I was unaware that I was having a paradox reaction. I just upped the thiamine, POTS, and diarrhea resolved.

Chronic TD is called beriberi means “I can’t, I can’t” in Singhalese. The problem is Chinese typically under 80, have never heard of beriberi, and in the US, beriberi is known but assigned as a disease that does not exist anymore or a condition only seen in alcoholics and bariatric patients. Genetic beriberi is passed through families, causing the inability to absorb thiamine from foods.

Beriberi In Two Families Going Back Three Generations

My family history revealed apparent genetics expressing as neuropsychiatric disorders and other conditions that appeared unrelated. Thiamine deficiency (TD) is not easily identified, due to its polysymptomatic nature. Besides the brain, the heart, muscle skeletal, digestive system, and autonomic nervous systems (ANS) need thiamine to function.

My maternal side lived in prosperity and ate a traditional Chinese diet and tropical delicacies. There were 7 members, including my grandfather that had Alzheimer’s (AD) and one family member had Parkinson’s. My grandmother had TD from kidney dialysis. There was TD in AIDS. Untreated hyperthyroidism resulted in cardiac failure mortality at 58. An alcoholic uncle had deficits, anxiety, cancer, and AD. An anorexic cousin refuses whole meals, develops a damaged digestive tract, severe IBS-C, chemical sensitivities, and major depressive disorder.

My paternal side lived in poverty. White rice was a diet staple. There was an aunt that died from child mortality in China from starvation.

After migrating to the US, food scarcity persisted. My grandfather had obesity and type 2 diabetes. My grandmother had sadness after her husband sold their daughter’s papers in China, never to see them again. At 61, my 4’10” grandmother fell over and died from beriberi.

Her wake was the first time my dad went to a restaurant at age 16. He often licked food and preserved it for later. Falsely accused of stealing, the detention center fed him regular meals. Five siblings had short stature and high IQs. His Chinese brother pictured right, was saved by the U.S. Army from malnutrition and assigned to be the radar instructor. There was bullying, anger, and irritation in the three boys. One, a bar owner exhibited extreme behavior like bringing a gun over a trivial conflict that would leave in-laws aghast.

Ocular diseases, restless leg syndrome, circadian rhythm disorder, cancer, some OCD and hypermobility, and osteoporosis appear. There was TD from chemotherapy. Two aunts left behind in China lived to be centurions and a daughter has fibromyalgia, depression, and other deficits.

Connect the lineage with a pregnancy gone wrong.

Genetics and a Traumatic Pregnancy Sets the Stage for Life

Pregnancy, a hypermetabolic state, requires sufficient thiamine for the development of a healthy child. My mom, a robust woman, was overmedicated and bedridden for a month post-pregnancy. She recovered but my brother was permanently disabled. My brother was born with uncontrollable hyperactivity and oppositional disorder. Our theory was his oxygen supply was cut off to his brain, but it was thiamine deficiency.

Two years later I was born. As a young child, I was hypoactive and didn’t move much. In grade school hearing loss was detected. Early memories included some clumsiness and not having the strength to swing on monkey bars like other children. My first feelings of frustration were over homework, especially math. My overall health waxed and waned and would not draw attention until high school when tiredness, poor memory and learning disabilities appeared. I was bullied by my older brother.

Nine years later my younger brother was born, bruxism as a baby, was his first sign of thiamine deficiency.

The next generation, symptoms of thiamine deficiency show in a gifted child.

Neurological deficits ranging from severe to minor were a sign of impaired methylation since birth.
My mom’s prenatal diet was traditional and American, and we were bottle-fed. This was in the ’60s when women were weaned off breastfeeding.

Now connect the genetics, the pregnancy and untreated thiamine deficiency in a parent and sibling.

A Genius Mind Uses More Energy and Requires More Thiamine

My dad invented the on-line TV guide in the eighties. In a constant state of fight-or-flight, working through the middle of the night on patents, sugary snacks were comfort foods to compensate for early years of food deprivation. The “night owl” term we used was circadian rhythm dysfunction. Thiamine is an overlooked nutrient required for sleep and the breakdown of cortisol.

When my brother’s hyperactivity was unmanageable, breaking things, beating the ADD out of my brother was habitual. A dysfunctional limbic system causes knee-jerk reactions to uncontrollable rage. I just learned that my seemingly nice uncle, an alcoholic, frequently tried to beat the homosexuality out of his young child.

A psychologist thought violence only happens in alcoholics. I think this limited view needs to be updated to include excess processed food intake. I remember “children should be seen and not heard” commercials as a child when hitting and spanking was more accepted.

In 1983, Dr. Kunin cited Dr. Lonsdale’s research that describes the B vitamin link with violence in Mega Nutrition for Women, “patients whose violent behavior was inexplicable by conventional medical diagnosis were found to be deficient in one or more B vitamins, notably B1, B3, and B6”.

During the Covid-19 shutdown, I thought of TD when incidences of abuse spiked, homelessness and random violence spread, and middle-class families now become dependent on food banks.

Poor Health After Antibiotics

As a young teen, I lost my glow, I looked tired, and my skin had a jaundiced yellow-greenish tint. In high school, after a round of tetracycline for transient acne, I was never the same. My metabolism stopped and I gained 40 lbs. I also have leptin deficiency and so I am always hungry. Napping after school was an everyday event. My limited thyroid test given showed normal thyroid-stimulating hormone (TSH). I was also constipated but didn’t know it until middle-aged after I was diagnosed with Hashimoto’s. In my 20’s I took antibiotics for chronic strep throat. Uninterested in nutrient dense foods, I subscribed to carb loading and high-intensity aerobic activity, the trend of the day.

Changes in My 30’s and the Promise of Modern Medicine

When my dad had side effects from sleep medication, he did his research, bought supplements for every system in the body, and stopped going to doctors. He got the family off of rice and put us on B vitamins. Uneducated in vitamins, I gave up on them too soon. I wasn’t taking enough! My mom’s acupuncturist treated my ADD, but I strayed when a well-meaning friend steered me towards pharmacology, and I took Effexor. The damage showed up over the next decade when increased nervous system and mitochondrial dysfunction begin.

Loud bar music in the back of my unit initiated chronic insomnia in my forties. I had open mouth breathing. Elevated cortisol and night sweats woke me at least 8 times a night. If I was mad, I’d have an instant hot flash and sizzle like a red bull. I lost my sex drive. After quitting Effexor, elevated thyroid TBO antibodies appeared. Later diagnosed with sensorineural hearing loss, the psychiatrist prescribed sound therapy but the condition isn’t curable.

Musculature problems began, I had an unrelenting frozen shoulder from a gym accident, and at one point, I had ataxia and couldn’t walk straight. After a trip, while in Hurricane Ivan, I was unable to walk for a month with ataxia. I once met an advanced multiple sclerosis patient, that experienced the exact same symptom from Ivan. The cause was thiamine deficiency in the cerebellum, the part of the brain that controls movement and walking.

For work, I illustrated 300 skylines from around the world and market them on Etsy. My fine motor skills and artistry remain superior, but my spatial organization was nonexistent. I was very messy. Taking GABA hampered work stress, but I couldn’t cycle it from thiamine deficiency. Managing inventory and college students wore me out. One told me “You can’t retain what I tell you”.  Finding my car in large parking lots was often challenging. The hippocampus circuitry requires thiamine for short-term memory function.

Orthomolecular psychiatry has proven to treat and manage these types of disorders with nutrients and diet, as the first line of defense. There was no need for antidepressants.

After My Diagnosis, I Learned My Parents Were Already Taking Thiamine

When I told my dad about my thiamine deficiency, he pulled out a bottle of thiamine labeled anti-beriberi. He was taking B1 for cardiac support. The heart and brain consume a vast amount of energy and require thiamine to meet the demand. My mom took benfotiamine successfully for shingles, a neuropathic pain.

When I told my original acupuncturist, about my diagnosis he said, “I already know you have beriberi, just take B vitamins and lots of them. You don’t need my herbs.” He had been treating me for dysautonomia, twenty years before I developed POTS. I detested the point because his needling pressure hurt. No questions asked; he needles points by observation and pulse, Western characterization in diseases have no significance.

Part of the treatment for dysautonomia is a needle to the center of the philtrum, this point prevents fainting. Another needle is inserted into the center of the forehead and one on top of the head for balance. Traditional Chinese Medicine (TCM) healers identify liver and lung channels weakness two decades before western medicine.

The New Doctor Damaged My Health In Only Eight Months

Twenty nineteen was a bad year. Dr. Kunin sees Vitamin C deficiency and signs of anemia and then retired. I stopped getting IVs. I would still nap after taking them. My trusted acupuncturist, also a nutritionist moved. I began dry coughing a lot, which later I learned was a sign of TD. Then I met the worst doctor ever.

I showed her, Thiamine Deficiency, Dysautonomia, and High Calorie Malnutrition and she handed it back to me and said “Oh, another patient brought this in the office.” I interviewed another doctor and told him I have TD and he replied with, “what’s your point!” and referred me to a doctor out of state.

I settled on the first doctor, and everything started wrong. She put me on a high-dose thyroid medication without titrating, and Low Dose Naltrexone (LDN), which gave me a stomachache. She wanted me back on LDN after I told her I had side effects. She recommends NAD instead of Meyer’s Cocktails which includes thiamine.

By the time I realized I was in a hyperthyroid state, the damage had begun. A cascade of beriberi symptoms begins. When one symptom would go away, another would begin. The neuropathy was more long-term. I had resting tachycardia, lactic acidosis after five days of yoga stretch that caused feet neuropathy and then trigger finger. All the doctor could say was “I had candida overgrowth”.  The cause of candida was that I had a weakened immune system from TD. I watched videos on lactic acidosis to explain it to her.

When I saw an eleven year old’s homework on glycolysis it made me wonder how much doctors remember from medical school.” I tested the doctor and asked her “What does pyruvate convert to?” She answered incorrectly.

I was developing non-alcoholic Wernicke’s encephalopathy (WE), acute short-term memory loss. I almost walked out of a restaurant thinking I paid the bill. I couldn’t remember putting a credit card back in my wallet and arguing with the clerk after she had handed it back to me. Once I read, “if you think you’re deficient in thiamine, get an IV right away.” After a series of Myers Cocktails with phosphatidylcholine, the progression stopped.

Another doctor got me off the thyroid meds, yet wet and dry beriberi symptoms continued. My left-hand lost circulation and turned hard and purple. The back of my neck hardened and my backside turned into butter. I had unintentional weight loss and my hand reflexes slowed. My minerals were becoming unbalanced. I contacted a refeeding syndrome clinic, for a consult, but was turned away because I wasn’t anorexic. A few months later I traveled to Hawaii and made a mistake.

Orthomolecular Medicine Rescues Me Again

Accidentally packing thiamine HCL instead of TTFD, the HCL initiated my paradox reaction and I had diarrhea several times the first night. Every day I napped from the sun’s UV rays. Excruciating muscle cramps sent me to Dr. Pritam Tapryal, Honolulu’s IV doctor specializing in chronic fatigue syndrome. Thiamine handouts, a stockpile of capsules and vials of B1 were waiting for me.

He calculates that I needed 600 mg of IV thiamine based on the length of time I had been feeling unwell. With an iron load before the second IV, I felt a surge of energy – I got ATP! My vagus nerve stimulated peristalsis and excess fermentation stuck in my body for three months finally released. Elevated liver enzyme activity and low blood pressure normalized.  Afterward, I found a doctor willing to provide high dose thiamine therapy at home.

I went back to the doctor that said “what’s your point” when I told him I had thiamine deficiency and requested 600 mg of parenteral B1 instead of 100 mg. A bit taken back, he shows compassion and custom orders 500 mg of B1 in a Myers Cocktail, after I explained my recent experience. The IV manager thought I was an ICU patient, but I wasn’t. It was the dose I felt best on.

High Dose IV Thiamine Therapy: From  A Patient’s Perspective

A series of high-dose thiamine (HDT) IV treatments, turned into an epigenetic treatment going on two years and two months. I’ve taken 100,000 mg of parental thiamine to this date. Infusions continued to sustain therapeutic effects and increased thyroid production. Unknown cause of malabsorption required ongoing infusions. Resolved through extensive pre-and post-labs.

I self-directed my treatment and gauged myself. I found thiamine articles from all over the world, but high-dose thiamine information was limited to WE treatment only. I received no medical advice on thiamine therapy from allopathic doctors that had clinical nutrition education, or from a young orthomolecular doctor or GP. Familial beriberi - thiamine deficiency

I had two to three IVs per week the first year that included 500 mg of thiamine. The longest time without an IV was three weeks at the beginning of 2020 and eleven days at the end of 2021. Below is a 12-month summary, from a 55-year-old woman with unrecognized lifelong thiamine deficiency from a SLC19A3 gene defect.

Journal From Long Term, IV, High Dose Thiamine Therapy

My high-dose thiamine regimen began 11/21/2019. This is the Meyers Cocktail titration period:

  • 2 infusions of 200 mg of thiamine in 2 weeks in end of Nov. to Dec.
  • 5 infusions 300 mg of thiamine in 2.5 weeks Dec. to Mid Dec
  • 2 infusions 400 mg of thiamine in 2 weeks Mid Dec. to January.
  • 500 mg of thiamine 2 to 3 times a week were taken in the middle of January.

11/2019 Concerned about anaphylaxis. Only a few teeny bumps around lips developed and disappeared after the first day. Visual clarity is the first sign of improvement.

12/2020 – Foot neuropathy and trigger finger for 4 months, resolved with 7 IV’s spread out over 4.5 weeks. The IV thiamine doses were 300 mg or 200 mg. Dexa scan shows osteopenia in lower back and femur and only 3 lbs. of lean muscle mass, muscle wasting, a hallmark symptom of beriberi.

OATS test taken a day after HDT infusion – tested B1 borderline deficient. Borderline and deficient in minerals and vitamins except manganese, doctor thought something was wrong with lab.

1/2020 – Right mucosal lining was demyelinating and slightly bleeding for a month, saw glitter. Zonulin levels over 800, the doctor told me not to be concerned, but I was. Slight rectal bleeding.

An unintentional fast in cold weather caused syncope. Broke out in an intense sweat, became faint and lost appetite. Leaned against buildings every few feet to get home, no thiamine in am. Sitting on bench resolved symptoms. MCV increases to 100, normal range is up to 95.

Tested negative for panel of inborn errors of metabolism. Autoimmune panel negative except – Arthritis – equivocal, Thyroiditis- out of range, Epstein Barr – negative.

2/2020 – New formulation of phosphatidylcholine, with small amount of dextrose without B1 was a mistake.

On three-week break, nighttime driving vision had decreased. Resumed Meyer’s Cocktail after break, fatigued, fell asleep in IV chair after IV. Reduced thyroid medication from I grain a week, increased after break to 3.5 grains a week. A1C 4.8 increased to 5.2 after break.

Right quadrant of my upper teeth dropped down. Oral surgeon said “not pathogenic of disease”.

Last visit with Dr. Kunin. Concerned I looked just as depressed as when we first met. I was happy to see him, unable to express it. Continue a more DIY approach and TCM, “the Chinese have found ways to treat that western medicine has not figured out, and one day technology will be so advanced doctors won’t be necessary”.  He handed me the keys and said, “Figure it out on your own.”

3/2020 – Introduced high fat diet. Lost 3 lbs.in a week. Severe leg cramps from foot to shin. During an IV, felt leg cramping. Normal cholesterol increased from 260 to 400. Stopped diet. No B1 in fat.

4/2020 – Lowered stress from semi-retirement and resting. IBS starts to resolve for the first time at 55. Felt extreme chill one day.  Took injectables at another doctor’s office due to shut down. I took 100 mg B1 in a B complex in intramuscular (IM) with B12 to ease B1 ‘pinch’, plus IM biotin for a month.  Not as effective as HDT infusions.  Combination of B1 with complex and biotin had best results.

5/2020 – Meyer’s Cocktail and 350 mg of NAD back-to-back infusions lifted brain fog profoundly.  Able to do tasks I couldn’t perform prior. I cried with joy, my cells were not permanently damaged from past use of Effexor and antibiotics. Unable to replicate treatment. Oral Inositol reduced elevated triglycerides dramatically, then stopped working. IBS came back off and on.

6/2020 – Tested borderline low on calcium, choline, magnesium, B5, B12, Vit C, K2, zinc on a three month average. GI lab shows mal-digestion, metabolic imbalance, and dysbiosis. Stomach pain from psyllium and flax, phytobezoar build up, rash on neck since 2019 getting worse, insomnia resolved.

7/2020 – Severe anemia showing and severe muscle weakness. I couldn’t lift a 5 lb. weight. Acute memory loss, almost walked out of lab before taking the lab.  Waking up early in am in summer at 8:00.  Hemoglobin normal and then drops frequently, IV doctor sees bleeding. Ophthalmologist finds arcus build up from high cholesterol, strong arteries, and recommends latanoprost for glaucoma after field test.

8/2020 – Decreased parenteral 500 mg B1 to 300 mg to test if high dose thiamine is depleting B12. Began coughing after 7 days. Post NAD IV lab tested  B12 deficiency, causing hemoglobin and T3 deficiency.  Acupuncture treatment creates switch sensations throughout body allowing oxygen flow, heart channel under arm point pulsated – oxygen and lung channels communicate. Leg bruising – Vitamin C deficiency.  Insomnia came back when B1 parental dose decreased, never resolved fully after increasing B1.

9/2020 – ANS dysfunction – uncontrollable body flipping in bed two nights in a row, movements like a fish out of water.  Resumed 500 mg of prenatal B1 after two weeks at 300 mg. Ophthalmologist said “you look more alert”, compared to two months ago. Started IM Mic-B and hydroxocobalamin, 5 days a week. IBS-C decreased with B12 IM. Coughing on Lipothiamine, switched permanently to Allithiamine, cough resolved. Normal zonulin levels return, reduced gut inflammation. GI didn’t order endoscopy after I told him something hit my stomach when walking and had rectal bleeding. He wrote IBS on notes. Stopped EDTA IVs for cadmium after a few treatments, when urine began foaming.

10/2020 – Latent deficiencies appear: B12, CoQ10 malabsorption. B1 not absorbing. Vitamin C deficiency appears, lifelong subclinical scurvy, bleeding gums, gingivitis, pilaris keratosis, bruising, poor iron absorption, rectal bleeding, low tyrosine.  Sick people are low in B vitamins and Vitamin C.  Repeated thiamine depletions cause heavy Vitamin C deficiency in lung, kidney, thymus, and liver.

Tested positive for Intrinsic Factor AB, Pernicious Anemia (PA).  Hematologist defensive when I asked him if TD can cause anemia, cancelled next appt., told me to see a GI. Doctors booked from Covid-19 delays.

Oral surgeon cleared teeth shifting. Orthodontist ordered aligners, short teeth roots in scan.

Trialed compounded thiamine cream from Lee Silsby pharmacy and replaced TTFD.

11/2020 – Stomach pain increasing after meal. Twelve days in, I thought I was going blind. The thiamine cream wasn’t absorbing. Indoor and night vision blurry. Back to TTFD and Myers Cocktail together. My vision came back, but not as clear before getting blurry. Mild paradox reaction, a bowel movement in the middle of the night.

12/2020 – Endoscopy shows chronic gastritis, h. pylori and peptic ulcers. A combination of a lack of nutrients cause ulcers, including B1.  Refused triple therapy (antibiotics and PPI). Treated with cabbage, herbals, mastic gum.  ION Panel indicated GSH and potassium deficiency, lactic acidosis (TD), ketosis, oxidative stress, transmitter deficiencies and metabolic syndrome.

Elliot Overton of EO Nutrition interprets mitochondria in battleship mode, suspects mold toxicity. Unseen mold or water damage. Incontinence and frequent urination. Second ophthalmologist told me don’t take latanoprost. MCV high still high with regular IM B12, since 10/20. With small veins and bursting arteries, it’s difficult to maintain IV’s.

In 2020, my health was like my dad’s. My hearing and vision deteriorated, I was unable to hear people speak with masks on and had difficulties focusing on conversation in noisy rooms. Gingivitis developed into periodontal disease; teeth aligners require lifetime use. My dad is deaf in one ear, and now going blind in the second eye and had the periodontal disease the same year and wears dentures.

Observations at 43,500 mg IV Thiamine After 13 Months

Intravenous therapy can target issues in ways oral thiamine cannot reach.

Improved thyroid production, A1C, insomnia, IBS and CFS, overall energy level partially improved.  Foot neuropathy and trigger finger resolved.  Cocktails with phosphatidylcholine, iron, and NAD, had increased effects, latent deficiencies appear, no nutrient depletions from high-dose thiamine.

Infection, gastritis, ulcers during treatment caused malabsorption. Reducing thiamine caused insomnia to reoccur and acute vision reduction, increased ANS dysfunction caused temporary uncontrollable body movements.  Increased dose of 300 mg to 500 mg of B1 resolved uncontrollable body movements and regained vision.

I saw one patient vomit, and a patient have nausea during 300 mg B1 Meyers Cocktail.

ROS from unknown cause extends treatment into 2021.

High Dose Thiamine IV Therapy, Toxins, Diet, Labs, and Gigong

In 2021, I tapered to two IVs a week and increased the 500 mg to 600 mg mid-year. Hot flashes returned after 5 years of remission causing a three-month setback. Insomnia made me delirious and had to take naps. PEMF bio-mat calms the nervous system to assist in sleep, without it I’ll wake up a few times during the night. For over 10 years, I wake up and urinate once a night. My eyes became blurry and I walked slowly like an old lady for a short period. Daily clear phlegm wants to come out since 2020 when I eat.

In spring my bloodwork showed Stachybotrys and Aspergillus mold. I found growth on papers in a storage box against a wall with the laundry room on another side. Condensation went through the wall.

With my gut healing and IV therapy, my TBO antibodies levels reduced significantly. The increased T3 raised my steroid hormones. Reducing thyroid medication again was a real possibility. IBS-C was resolved by mega-dosing powder magnesium with fiber, B1 and B12. I once had an offer to see the world authority on IBS-C, though all I needed was a good form of high-dose magnesium. I was feeling better until I experienced unexpected setbacks.

Everything Changed With Two Major Endocrine Disruptors

Microscopic brick debris during construction flew under my windows. Debris flew inside over 50 ft. and landed everywhere, never thought my eyes and lungs could clear it. Due to an HLA-DQB1 gene defect, I’m unable to break down mycotoxins (mold).  Mold is an anti-thiamine factor and it oxidizes B1 and B12.

When inflammation started to calm down, my hallway went under remodeling, and material debris and paint fumes went under my door. The chemicals shut down my thyroid. Antibodies rose from 180 to 535. Inflammatory markers that were improving became elevated and deficient. My killer cell function, HNK1 (CD57) level was 50 and now 18.  The doctor thinks I have Lyme. I’m testing for MARCoNS, a staph infection that resides deep in the nasal passage, due to sinus inflammation from the biotoxins.

After trialing Cholestyramine for mold binding, it made me constipated. My acupuncturist gave me a two-hour treatment to undo the damage. To detox, I use an FIR infrared sauna on the mat. I’m getting an ERMI test kit to test other rooms, an air test hardly detected mold.

HDT Isn’t a Standalone Treatment

With the amount of IVs I took, I tested questionable foods. A few small gluten-free snacks put me into a comatose within 20 minutes. Less than two ounces of coffee initiated leg/foot cramping. I never had this problem a few years ago.  Removal of processed carbs is the only way I can maintain my thiamine storage.

Staying in mild ketosis, on a paleo diet is optimal for me. When I tried high-fat and vegan diets, they caused deficiencies. I have a nonfunctional gene cluster FADS1/FADS2, that requires the consumption of EPA and DHA found in seafood. Drinking concoctions of vegetables and minerals activate B vitamins throughout the day.  TD causes nitric oxide deficiency and I replete myself with nitric oxide greens.  My one kryptonite food is liver, it elevates my copper.  Using food as medicine supports my overall immune function as I recover from Chronic Inflammatory Response Syndrome.

My hydrochloric acid is deficient from TD, and I have low gastrin. I’ve taken 13,000 mg of Pepsin Betaine and feel no sensation. Apple cider vinegar doesn’t seem to work. My amino supplements aren’t absorbing.  I also have oxalates, Elliot recommends more B6 and I’ve increased molybdenum to meet my sulfur intake.

I take a blend of B1 that includes: 900 mg Allithiamine, 300 mg benfotiamine and 500 mg thiamine HCL. Over 900 mg Allithiamine and sulfur come up. Before a Meyers Cocktail, I’ll soak in magnesium salts. I’ve increased all the B’s and take them with other essential nutrients throughout the day in moderate to high doses. I require biotin intramuscularly every few weeks, otherwise my nails chip, this started last year. My transporter may be dissolving.

Utilizing Biomarkers and Managing Nutrients

Every six weeks I rotate biochem panels and adjust diet and supplements. My weaknesses this year have been lipids, omegas, aminos, and inflammatory markers. My B12 continues to pool due to suboptimal thiamine levels unable to utilize B12, so I stopped testing. I inject 35 mg of hydroxocobalamin a week, plus sublingual, and hemoglobin is always on the lowest end of normal after I had pernicious anemia. Mold is the suspect cause. I may also have scar tissue from ulcers and scurvy of the colon. The GI doctor recommends an endoscopy once every three years when there’s been a problem.

I’ve found nutrient panels reliable when B1 is extremely deficient. On two occasions my lactate tested normal. Then I had beriberi symptoms after I took the labs on the same day. This was from eating beans and walking in sun, which forced me to sleep. My citric acid markers were normal on an ION panel and I was in ketosis, but the clinician didn’t know I had POTS on the morning of the lab. This was from a three-day fast suggested by a doctor. Thiamine deficiency can worsen on a dime.

Diagnosed with TD on a SpectraCell micronutrient panel, I had long-term B1 deficiency. Normal B1 levels are misleading on my labs once there’s been intake. The Vibrant America panel showed B1 malabsorption at 35,000 mg of parenteral B1.  I’ll continue with this panel and monitor nutrients connected to B1.

My doctor’s friend offered me the two-part transketolase lab for research, but my doctor forgot to arrange the sampling. I was upset at the time, but it doesn’t matter now. I manage myself by how I feel. With Excel journaling, the more elements I add, the more clarity I receive. Observing physical changes are equally valuable to the labs.

A Revisit to Energy Medicine That Compliments Nutritional Balancing

I recently discovered group Primordial Qigong. I haven’t found any other modality that has the same restorative benefits that give energy instead of using energy. Movements connect the body, mind, and soul with the focus on living in the present. Gentle stimulation of systems and body parts creates rejuvenation from within. Who doesn’t want that?

Dysautonomia, the fainting prevention point, is taught in practice. The bank of hands faced together inverted pushed downwards from the forehead over the philtrum encourages balance. Made for masses with no resources, it only requires continuity. This is a welcoming alternative compared to the nutrient-depleting therapies, recommended by for-profit western doctors that made my health worse when they didn’t know what they were dealing with.

At 100,000 mg Of IV Thiamine – It Feels Like I’m on a Train I Can’t Get Off

Overall, the quality of my life has improved. I no longer need to lie down and sleep during the day, even if I feel tired. I’m more active in mind and body. I can sit up and read, wake up earlier, and exercise. My processing speed and speech are faster. The left side of my brain is strengthened. I did audits on my condo association to trace missing dues and one over BlueCross when many claims were unpaid. My brain fog had been too severe to do this previously.

Neuropsychiatric issues appear in less frequency. I still experience forgetfulness and minor learning impairments. Irritation is manageable. I believe some brain function is permanently damaged along with hearing loss. Considering my long-standing history, I’m pleased with the results even though it is only a partial recovery.

Since my body called out for a high dose, there’s a chance I can regress. At 11 days off the IVs, I was deficient in Co2. I don’t know if the thiamine coenzymes can function without high-dose therapy because of my genetic liability. I’m patiently waiting to see how my body changes after the toxins are eliminated and figure out how to taper down from the IVs.

Final Thoughts

Thanks to Dr. Marrs and writers on HM for elucidating thiamine awareness, I learned how to use thiamine as a drug at a time when I needed it most.

Through luck, I found nutritional clinicians that made a significant difference in my health. Educated in Dr. Lonsdale’s thiamine research, they applied his nutrient-based knowledge into their practices. Understanding that beriberi still exists today and is not an ancient scourge from yesterday, is critical.

By assimilating the genetic impact of beriberi and orthomolecular dosing, I’m regaining health in my late fifties. However, no patient should have to spend a lifetime finding a treatment based on luck. There’s no reason to it’s all here: Thiamine Deficiency, Dysautonomia and High Calorie Malnutrition, Derrick Lonsdale and Chandler Marrs; www.orthomolecularmedicine.org

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This article was published originally on February 14, 2022. 

Endometriosis, Lupron, and Fluoroquinolones: A Recipe for Autonomic Disintegration

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I am sharing my health story in the hopes that someone can offer assistance. I had stage 4 endometriosis for years before it was diagnosed. On top of that, I have had reactions in antibiotics, including fluoroquinolones and was given Lupron. Each drug destroyed more of my health. I am currently bedridden, in pain and unable to function. I have lost hearing in my right ear, have Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency, hypokalemia, electrolyte imbalances, IBS, MCS, Ocular migraines and recently, have been diagnosed with dysautonomia. My body feels like it is disintegrating. We believe that everything is related, that I have mitochondrial issues at the root of these illnesses, but to date, no one has been able to put the pieces together. With the help of my husband, I have put together my health history. We are looking for input.

Early Warning Signs

1985: late summer, I was hit by car while riding bicycle. I was banged up really bad and definitely had head injury.

1998: started feeling off, not sure yet at this point still very young

2001: birth of my first daughter. I developed severe preeclampsia and had an emergency C-section three days later. My daughter was 6 weeks early and spent two weeks in the intensive care unit.

2002-2003: I felt off at times and did go to GP on several occasions. I had pain shot to my back. I am not sure what it was but it took the pain away. I also kept saying just didn’t feel well. I felt off but nothing was found.

2005: the birth of our son and second C-section. I was on bed rest last three months of the pregnancy. I was given an antibiotic for some reason. I do not remember. I had a reaction to it and turned orange. The doctor gave me something else to counter the effects of the antibiotic and my color returned to normal. It was a normal birth.

2006-2007: I was still in pain. The pain moved to the abdominal area. I developed bowel issues, had and ovarian cyst. I saw gastrointestinal physician who did scans and found a thickening of the lining of uterus. He referred us back to the gynecologist who did D&C in 2007 and said I had very minuscule amount of endometriosis.

2008- 2009: still seeing OB for pelvic pain, also seeing multiple other doctors including a neurologist, internist, and surgeon. Everyone kept saying same thing: ‘Your fine. It’s in your head.” They wanted to put me on mood enhancers. I tried lorazepam and felt terrible on it, so I stopped after two weeks.

The Lupron Disaster

September 2009: I started doing Lupron injections from gynecologist. She was very forceful with me and stated “if you don’t do these injections I can’t help you.” She said it was the only way they could know if the pain was below the belly or above. I agreed reluctantly, but at that time still thought my doctors had their best interests in me. After the first injection, my doctor called at home on a Saturday to see how I was feeling. I responded I was already in pain, but it has now quadrupled and I feel like an old person. Every bone in my body hurt.  I couldn’t believe the amount of pain I was in. She said I had to get all 6 injections if it were to be able to help me.

At that time, my husband because of work only went to a few of my appointments. I soon began to have him go with me because I felt I was getting the run around.

Hearing Loss Post-Lupron: Let’s Add Fluoroquinolones and Steroids to the Mix

2010: the last injection was in February. I began to lose my hair. I had memory loss, stabbing and taser sensations in head. I was still getting pains in abdomen area. In September, I went in for ear pain. The ENT said it looked like a scratch, so he gave me fluoroquinolone drops. I had also taken other fluoroquinolone antibiotics for yeast infections earlier in the year. In October, I had sudden sensorineural hearing loss in the right ear. Within an hour, I called my husband told him my hearing was acting weird. I went totally deaf in my right ear, 8 months after my last injection of Lupron. My local ENT immediately gave me a shot of cortisone (I was able to still walk and drive). It all went crazy when my ENT put me on a large dose of oral prednisone for 14 days. Everything in my body went nuts. I was rolling out of bed, holding on to the walls to help me walk. I totally lost my balance. The oral prednisone really did a number on my head.  I had done genetic testing through 23andMe and our doctor upload the report to a reader called Opus23. It said that I should never take prednisone.

I went to Stanford Medical and saw top ENT and received three cortisone injections into the right ear drum. Had a 50/50 chance for recovery and for me it didn’t work. I left Stanford with them telling me they still don’t have all the answers yet when it comes to sudden hearing loss. They thought it was some sort of viral infection that attacked the ear drum and deafened the ear. After the hearing loss. I had three ER visits. This is when I first started having low potassium. I felt like I was about to pass out. I was still driving at this time, I didn’t know what to think.

2011 -2012: I began seeing a naturopathic physician. I also did a trip down to LA to the House Ear clinic to see some specialist regarding her hearing loss. They couldn’t help either. I left my current OB and started seeing the physician who was filling in. I ended up doing a partial hysterectomy with her after finding a growth at one of my numerous ER visits that year. I was still working and a full-time mommy, while dealing with massive pain in my lower abdomen and now starting to deal with multiple autoimmune diseases including: Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency. In addition, a lot of my minerals and vitamins were off at that time. I suspect this was beginning of my dysautonomia. I also began seeing an endometriosis specialist at Stanford.

Was it Endometriosis All Along?

2013: On January 31st, I had laparoscopic surgery to clear the endometriosis. I had stage 4 endometriosis which took my appendix. The physician said my body was littered with endometriosis. He even checked up in my heart cavity to make sure no endometriosis had made its way up to the heart. Before the surgery, I was talking with the anesthesiologist and telling him about my hearing loss and my low potassium. That is when he stopped the surgery and I had to take a stress test. We left and went to Palo Alto heart center and did a stress test I fasted for 24 hours and then they had me go do a stress test on a treadmill on an empty stomach. I did it no problem and went back to the surgery center. That is when they did the laparoscopic surgery and found stage 4 endometriosis.

Also, I want to point out that we didn’t find out until much later that during the course of the endometriosis surgery, they had left surgical clips and suturing material in me. We discovered this at one of our many ER visits. The OR report from our doctor says nothing about these things being left inside of me. I believe this is an additional pain I have on top of the other complications in my abdomen area. Nothing like having a wad of surgical clips throughout my abdomen and suturing material left inside my already struggling body. We are trying to get these removed, but no surgeon will take my case.

Mitochondrial Damage and Autonomic Disintegration

April that year, I had another ER visit. I lost all bodily functions. My potassium was severely low. I would go to the ER in 2013 many more times.

2014: I had to stop working totally this year. I tried to come back and assist a friend of mine just being her loan officer assistant but the neurological pains and crazy foggy brain I was experiencing was just too much. Something that was so easy for me years earlier, I was now having trouble just doing basic loan officer task at this point. Strange neurological pains were becoming a normal. I stopped driving this year also. It was just getting to scary for me to continue. I continued to go to ER for multiple visits

2014- 2017: I went to the ER over 50 times for various reasons: heart pains, chest pains, shooting stabbing pains throughout my entire body. I almost always had low potassium. Over these years, we spent our life savings and pulled out a $100,000 from my husband’s 401k, which we spent on various treatment plans. We have traveled as far away to Philadelphia looking for answers. We even gutted our house when we were told at one time it must be mold that is killing me. We lived in a borrowed 5th wheel while my husband put our house back together. There have been numerous days where I felt I couldn’t go on one more minute. I felt like death was right around the corner.

In 2015 one of our doctors after reading my genetic report thought he found a breakthrough with a patient that had hypokalemia and Sjogren’s syndrome. He provided me a copy of the study they did on a girl with very similar symptoms to mine. He had our local compounding pharmacy mix a solution called Shohl’s. I took the solution after my doctor assured me I would be ok. Well, I tried it almost within in minutes I was convulsing and went into tachycardia. My husband called 911 ambulance took me to the ER. In route to hospital paramedic gave me nitroglycerin. I was monitored for several hours and eventually went home. During this time had been staying at my mother-in-law’s house for about 6 months because we weren’t sure at this point if something in our house was making me so sick. This was a very stressful time for me at this point we have no idea what’s going on and what’s causing this.

We did have some relief in 2017 when our local naturopathic doctor was able to get a new treatment called UBL or ultraviolet blood irradiation. I had about 6 months where I was feeling off, but having somewhat good days where I could semi-function. My viral count has been very high during these years, EBV, CMV, HHV6, etc., and possibly Lyme. If I push myself, I will crash for hours sometimes days until I start to get any strength back just to walk to the restroom.

Next, I went in for a completely different treatment called prolotherapy. I got one injection into my shoulder, and just like that my body reverted back to like I was before the UBL treatments. I was worse again. It was very strange my body reacted like that.

2016: I was diagnosed with dysautonomia by another specialist, an electrophysiologist cardiologist. I have several of the sub symptoms of dysautonomia including: postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope (NCS), dizziness, vertigo, fainting, fast, slow or irregular heartbeat, chest pain, low blood pressure, problems with gastrointestinal system, nausea, disturbances in visual field, weakness, breathing difficulties, mood swings, anxiety, fatigue and intolerance to exercise, migraines, disrupted sleep patterns, temperature regulation problems, concentration and memory problem, poor appetite and overactive sense, especially when exposed to noise and light. We also met with a dozen or so other specialists. None were able to help.

I have multiple tears in both hips worse on right side. Multiple torn areas in the pelvic floor also.  Surgery is out of pocket and we have not been able to fly back and have surgery to repair those tears and hips yet as of 2019.

2018- 2019: I went to the ER only three times in 2018 and so far only three times in 2019. We try not to go because we know they never find much. I only go to be reassured that my vitals are still strong when I’m feeling at my worst. I have been denied disability. I had a neurocardiogenic seizure in the courtroom with judge and she still denied me. I have one last appeal that I am waiting on. I am not very hopeful that will go through. At this point, the dysautonomia, fibromyalgia/ chronic neurological pain and the low potassium are what are the hardest things for me to deal with. As of right now, we are concentrating on rebuilding my mitochondrial cells in hoping I can reverse some or most of the damage I think was a direct cause from the Lupron injections.

I was also on bio-identical progesterone creme from around 2012 to 2018. Then, in middle of 2018, my ND wanted me to try the bio-identical that went off the lunar moon cycle. It was a separate estrogen and progesterone creme in a plastic push-up type applicator. She said she was looking into it and thought it might help. Well, I tried it and had terrible side effects, I think most likely from the adding in the estrogen. After second month, I was having terrible stomach pains. I looked four months pregnant and was begging my husband to take me to the ER. The pain was worst at the part of the cycle where I took the estrogen only. I felt like she was going to die. In the past, I was always high in estrogen. I am not sure, but as soon as I introduced in that estrogen, it threw me out of whack terribly. I stopped that in November of 2018.

This is where I am now: in pain, unable to work or care for my children. My husband is my full-time caregiver. He takes care of our kids, shops cooks, does everything I used to do plus works his full-time job. I couldn’t do this without him. The doctors have run out answers. I believe it was the endometriosis all along, made infinitely worse by Lupron and the various rounds of antibiotics, including fluoroquinolones. The only way I can maintain my potassium levels is through huge daily doses. Otherwise, I slide into hypokalemia. We have a standing order at our local hospital to measure my potassium whenever I suspect it is low. We have sought treatment from dozens of specialists and spent our entire life savings and I am no better than I was 10 years ago. In fact, I am worse. Over the last 8 years, we have been supplementing with vitamins and minerals to try and repair the damage done to my mitochondria by the Lupron and the fluoroquinolones. Some things help and others do not. We are at wits end and do not know where to turn for help. Below is a list of supplements that I currently take.

Supplement List

Upon waking:

  • 600mg potassium,
  • 1 1/4 grain Naturethroid

Breakfast:

  • 3 200mg potassium. Daily total 1200mg
  • 1 Chewable Hydroxo B-12
  • 1 COQ10 100MG
  • 1 Biotin 10,000mcg chewable
  • 1 Chromium picolinate 200mcg chewable
  • 1 Desiccated adrenal from Standard process
  • 1 magnesium malate 100mg
  • 1 Thiamin 50mg
  • 1 Mitocore – it is like a multiple vitamin
  • 5 grams vitamin C, mixed with juice, plus I add Lugol’s iodine, colloidal silver, lymph drain and trace mineral mix.

Mid-morning:

  • 3 200mg potassium again – daily total 1800mg
  • B12 shot, a 100iu syringe

Lunch:

  • 3 200mg potassium, daily total 2400mg
  • 1 vitamin A 10.000iu
  • 1 vitamin K 90mcg
  • 1 Lugol’s iodine plus
  • 1 nettle leaf cap 400mg
  • 1 Monolaurin 600mg
  • 2 L-lysine 1000mg
  • 1 thiamin 50mg
  • 1 magnesium malate 100mg
  • 1 more Hydroxo B12

Diner:

  • 3 200mg potassium, daily total 3000mg
  • 1 thiamin 50mg
  • 1 milk thistle 150mg
  • 2 L-lysine 1000mg
  • 1 DHEA 25mg
  • 1 magnolia bark 450mg
  • 1 Digestive enzymes
  • 1 Dr. Berg Hair formula.
  • 1 L-carnitine 250mg

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Image: Maximum Speed of Raphael’s Madonna, Salvador Dali, 1954.

Posted originally on Aug 20, 2019.

Sick, Deaf, and Uninsured: The Nightmare of American Healthcare

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Lifelong Hearing Loss

At the age of nine years old, I was diagnosed with progressive sensorineural hearing loss. At that time, I already had a 60% loss in the high tones. No one knew I was deaf because I had adapted and learned to lipread. I suspect most people I encounter these days don’t realize how deaf I am. I have had hearing examinations where the audiologist thought something was wrong with their equipment because I am so deaf I don’t hear most of the tones. My speech comprehension goes down about 50% when the audiologist covers their face with a piece of paper. I was recently tested and my loss has progressed from the “Moderate to Severe” category to “Severe to Profound”. Without hearing aids the world is a very quiet place.

Unprepared to be Uninsured

For the whole of my adult life, healthcare and insurance were not things I worried about. My first husband was in the military, so on those rare occasions I needed a doctor, I saw whoever was on shift at the base clinic. When I was pregnant with both my children, an Ob/Gyn was assigned to me and then I saw whoever was on shift when it was time to give birth at a military hospital. When I went to work for a city government, I had health insurance and doctors were assigned to me sort of magically. For much of the time I had health insurance, I didn’t even make the deductible. I was completely ill-prepared to join the legions of the uninsured in 2010 when I had to take an early retirement from my civil service job.

Phone Impaired in the Age of Smart Phones

I was last able to use the telephone on a limited basis in 2009. Even though I had a special amplified handset on my work phone, I sometimes would get a call and be unable to understand anything the caller was saying. I had to hand the phone to a co-worker when that happened.

Now that I don’t have an amplified land line, I cannot use the phone at all. What calls get made, my husband has to make or take them for me. He has auditory processing disorder and is likely high functioning autistic as well as ADHD. So phone calls take a lot of energy on his part and I don’t ask him to make them unless it is absolutely necessary.

One of the things I think many people may not be aware of is that many, if not most, healthcare practices do not accept uninsured patients. This is especially true of specialist like GI and endocrinologists. I don’t blame them, I cannot pay medical bills unless they are given to me in a manner that I can plan for and afford while still paying upfront for ongoing health care, medications, and supplements. Not being able to use the telephone to call multiple practices to inquire about their patient acceptance practices and to get cost information upfront makes it nearly impossible for me to get services I need even if I have funds to pay for them.

The High Cost of Not Knowing

After retiring early without health insurance, I managed to get by for three years without any healthcare.  When I started having chronic diarrhea, I looked around online to find help that I could afford. That information was not obtainable without a phone, so I wound up in the local university hospital ER with a blood pressure of 240/130. We owed no one when we walked in the hospital doors and now we had debt more than a small house would have cost. I remember lying in bed in a haze and crying because I felt I would never again own a home of my own.

Ironically, the event that I believe triggered my hypertension was related to an unscheduled “invasion” of our duplex by appraisers. One of the reasons I need a home of my own is that I don’t feel entirely safe in a rented home. It is a subjective thing and I have been at loss to explain it until I started learning about autism.

During the four day hospital stay, I filled out an application for financial assistance, but since I still had money in a retirement savings account, my application was denied. I did not feel I should take the money out of that account because I was saving to buy new hearing aids. The ones I was wearing were over 10 years old.

I considered trying to pay the hospital $20 or $30 dollars a month to preserve my tattered credit rating, but I received about a dozen bills, none I could afford. One was for $47,000 (that was already discounted 60%) from the hospital. Several were for $2,000-to 3,000 and numerous in the hundreds from various entities like labs, catering, and doctors. There were even separate bills for the emergency room. There was no way I could pay all of them even at $10 a month. We were living payday to payday with little remaining. Since I could not pay all of them, I did not pay any of them. I was used to paying my bills on time and so consciously deciding not to pay these bills caused me a lot of distress. I still had undiagnosed and complicated health problems that needed ongoing care. I had no idea how I was going to pay for that.

Hostage to the System

I was referred to a local health clinic and I paid for that out of my income tax refund, which I had decided to park in a savings account to pay each years’ ongoing medical expenses. When I was referred to a rural GI practice, my husband’s mother gave us several thousand dollars to help pay for it. This experience was another nightmare. The rural GI was treating thousands of low-income patients and he had, at most, 15 minutes of time with us. He spent most of that time entering data into a computer. This was a problem for me because I need people to face me in order to be able to lipread. I explained that repeatedly, but he either forgot or ignored my request.

I was having ongoing diarrhea, digestive issues, and malnutrition when I was referred to the GI. I did not feel it was safe to protest or be overly assertive with this doctor, as I desperately needed his services.  His lack of accommodation for my deafness was only part of what made this experience so upsetting. He seemed to have no understanding or concern for our financial issues. Even though we explained our financial situation, he ordered a litany of expensive tests. I could not get anyone at the clinic to tell me how much things would cost upfront. Even his office visits were a problem. I asked about cost and explained I was uninsured at the time of the first office visit. I paid the $179 they requested up front, but then they would send me additional bills for $79 with no explanation. The total of all the tests including endoscopy and colonoscopy, CT scan, etc. was somewhere around $8,000-9,000. I think we paid 4 or 5 thousand up front from money my mother-in-law gave us. Again I didn’t get one billing entity, but a 1/2 dozen or so different bills. So that was yet another hit to my already miserable credit rating.

I continued to suffer digestive issues even on the prescription enzymes and PPI.  Since the doctor declined to address several of my health concerns that he didn’t feel were GI related, I was disinclined to go see him again. It was only when we finally got two incomes that we were able to afford an allergist. I was diagnosed with 44 food allergies as well as multiple environmental ones.  The allergies were the cause of the  digestive problems that the GI refused to evaluate. That was another three years of my life needlessly lost to digestion related malnutrition.

New Type of Primary Care

I recently changed from the local corporate clinic to a new type of family practice two hours away. The family practice seemed like a good deal as they had lower costs for lab work and a monthly fee with $20 an office visit charge. They also had a patient portal which seemed ideal for me since I could write about my problems instead of trying to relay them via my husband over the phone. After two visits at $180 a piece, I had problems because they didn’t seem to want to hear about any of the problems other than the type 2 diabetes. When I managed to get them to understand the full range of my health problems, they unceremoniously dumped me via email. They referred me to a nutritionist who strung me along two weeks before declining to take me as a patient because I could not do consultations on the cell phone.

This dumping echoed a lot of childhood experiences of rejection so it was traumatic enough that it made me cry. It has been increasingly hard for me to put my trust in healthcare professionals since the death of my second husband to colon cancer. They were not the cause of his death but there was a lot of needless suffering along the way. This opened my eyes to problems in our healthcare system I was previously unaware of.

Fairly frequently in the past eight years, I have felt a sort of despair that is like being trapped in an emergency situation with no way to call out for help. Some of this stems from a lifetime trauma coping strategy of submission and some of it is due to poor communications skills on my part. I can never know how well I will be able to articulate the thoughts in my head. They seem so clear to me but somehow come out confused and garbled when I am stressed. I have to do a lot of meditation and exercise to calm down HPA activations just prior to a healthcare visits. I arrive at my appointments with as much written down as I can manage because stress causes me to lose even more communications abilities.

Direct Primary Care

I finally had a bit of luck when I found a Doctor of Internal Medicine who has a Direct Primary Care practice. I had almost disabling anxiety in the weeks up to my first visit because I was afraid if I told her too much about my problems she might refuse to take me as a patient. Fortunately, she was honest, blunt, and straightforward in a way that alleviated my anxiety. I focused on my official diagnosis and getting medications refilled on our first visit. On the second visit, I wanted to focus on the undiagnosed problems. Thanks to Chandler Marrs for editing and publishing my story here on Hormones Matter, I feel I have been heard and understood. As a result, I now have referrals to an endocrinologist, a GI, and a contact to get evaluated for High Functioning Autism (HFA).

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

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