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

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Endometriosis, Lupron, Fluoroquinolones and Dysautonomia

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

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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.

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

Posted originally on Aug 20, 2019.

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Recovery From Alcohol Induced Gastric Beriberi and Dysautonomia

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alcoholic gastric beriberi dysautonomia

Early Alcoholism: A Precursor to Thiamine Deficiency and Dysautonomia

When I was in my 20’s, I was an alcoholic student in a Nordic country. I was a perpetual student enrolling every year, but getting very little done. I mostly read and drank. I stopped drinking in 2015 because it was too tiring to be drunk all the time. Stopping wasn’t difficult. I didn’t get any joy of alcohol anymore anyway. I became fit, resumed studies, and graduated in 2018. I went on a vegetable-based low carb diet and took B vitamins thinking I might need them after years of drinking. I felt fine. I was a little overweight but not too much. I also took a handful of basic vitamins and magnesium, in addition to the B complex. I had four years of a pretty healthy life before everything fell apart and I developed a variety of dysautonomia symptoms related to thiamine deficiency.

The Emergence of Dysautonomia

In February 2020, I became ill with a myriad of symptoms. I had costochondritis. (Defined as “an inflammation of the connective tissue where the ribs attach to the breastbone .Characterized by dull to sharp pain at the front of the chest wall that may radiate to the back or abdomen.”) I had constipation to the point of impaction, I couldn’t regulate my temperature, and kept shivering under several blankets. I wasn’t able to swallow properly because food got stuck in my throat.

In March the Covid-panic was at its worst and I sat tight at home, thinking I’d just need to weather it out rather than make an appointment with my doctor and risk getting Covid. During this time, I had constant vertigo and had to hug the walls of my house as I moved around. Vertigo made me motion sick.

In May things looked up, the panic had changed into hopeful masking. The state I lived in hadn’t gotten its first wave yet and so I made an appointment with my doctor. I left with motion sickness medicines and routine labs done, which showed nothing remarkable. I was able to recover from the costochondritis and constipation. I was using laxatives now regularly. It didn’t bother me after the agony of an impacted colon.

I was now having fulltime dysautonomia, with hypothermia and vertigo being the most prominent symptoms. I still had difficulty swallowing but it was something I decided was psychosomatic because of the stress. I just ate very carefully and avoided things that would make me choke.

Stumbling Onto Thiamine Deficiency

I ran into Hormones Matter blog after joining a reddit group r/dysautonomia. One poster kept repeatedly posting “thiamine deficiency” to people describing their symptoms and quoting parts of Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition by Lonsdale & Marrs. I bought the book and read it.

I went to see my doctor again, telling her that I wasn’t recovering. I asked to get whole blood B1 tested, she refused saying I don’t look like I had beriberi, with a chuckle. That hurt. Pictures of beriberi patients are invariably people who are emaciated to the point of starvation. I am still slightly overweight.

I began high dose thiamine in October 2020 on my own.

I started taking Allithiamine and later Thiamax. I tolerated the TTFD (thiamine tetrahydrofurfuryl disulfide, a thiamine derivative used in the formulations for Allithiamine and Thiamax) fabulously. I titrated the dose per symptoms until I felt fine. I was startled how high I needed to go. At times in December, I was at 400-500 mg TTFD per day + 300 mg of benfotiamine during the night. I would notice the effect wearing off in 4 hours and needed to re-dose because all the symptoms came back.

My Experience with Thiamine Supplementation

My experience with TTFD was head clarity and enormous sense of wellbeing. Benfotiamine made my temperature regulating issues go away and gave me good sleep. I was often having bouts of hypothermia when ill and shivering under blankets. Benfotiamine helped in this more than TTFD.

TTFD solved the constipation and swallowing issues, which would support the vagal lesion theory. Lonsdale describes gastroparesis and dysphagia as a “central lesion” in the GI tract affected by beriberi. I noticed the effect of feeling GI peristalsis kick start and make a sort of “chugging” motion after I took TTFD. If I ate steak, I made sure to take TTFD before because it made my swallowing effortless. Previously, I always had choking hazard because bits of meat would get stuck in my throat and I had to flush them down with water.

I took other B vitamins individually to supplement. The amounts were the same as most B complexes. I took 300 mg of magnesium taurate through the day and 1/2 teaspoon of potassium chloride in water through the day as well. I began taking 150 mcg of molybdenum and 200 mcg of selenium. I took one drop of iodine a day too. I listened to Elliot Overton’s talks about TTFD.

Titrating the Supplements Down After Recovery

Over the spring, I was able to reduce TTFD, going down about 50mg a month, most months. If I felt symptoms coming back – the coldness, vertigo – I decided I wasn’t ready for nipping more off and resumed the previous months’ dose where I felt fine. I have been off of TTFD now since June and completely symptom free from my dysautonomia, constipation, vertigo, swallowing difficulties, continuous nausea – all since April.

I’m still intolerant to many supplements, but I can take Thorne’s Basic B to keep covering the B’s. I still take magnesium and potassium with the B complex, occasionally molybdenum and selenium in small doses. Iodine, if I remember. I don’t know if they contributed any, but they may have.

I must mention that years past when I took Basic B, I felt nothing. Now, I feel a bit energized after taking it and I have a bowel movement. This is similar to my experience with TTFD. I believe that TTFD has enabled me to uptake the regular thiamine HCL, and that for some reason with my history of heavy drinking and bad nutrition, my early beriberi-affected system was not able to transport thiamine HCL that was in the B complex. However, now it feels like it does. I will try to get the other nutrients from food.

What I did not do:

  • megadose any other B vitamin
  • address any oxalate issue
  • make any dietary changes. I kept eating the same low carb I always ate
  • address any histamine issue

I did not do any of those because I was making progress with TTFD and B complex with the usual minerals.

My illness wasn’t long compared to others that I have read about. That may be also why recovery was swift. I also had a pretty good nutritional status to begin with, with magnesium and potassium on board – and probably no other vitamin deficiencies. This is my story. I am forever grateful for Drs. Lonsdale and Marrs for the book and this website.

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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Solving the Medically Unsolvable: Gene, Nutrient, and Diet Interactions With Dysautonomia

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HACL thiamine dysautonomia

Years of Pain, Fatigue, and Weird Symptoms

I have had chronic fatigue syndrome, excessive Non-REM (NREM) dreaming, mood issues and muscle pain 24/7 for as long as I can remember. I have been to more than 100 health practitioners of various flavors, from the conventional doctors and specialists, to herbalists, energy medicine doctors, hypnotists and acupuncturists as well as taking pretty much every test available. Most tests were frustratingly normal. I had deficiencies in iron and B12 at various times but that came right after being diagnosed with Celiac Disease and starting a strictly gluten free diet.

Still, the fatigue and 24/7 pain persisted, and with the start of menopause, new symptoms emerged. I experienced periods of vertigo, brain fog, unexplained cold sensations in my chest, and after taking bioidentical progesterone for a few days I experienced daily dizziness and eventually got diagnosed with postural hypotension when the cardiologist measured a drop in systolic blood pressure of more than 30 upon standing. This daily dizziness continued for more than three years.

I tried all of the usual dietary interventions as well as the low oxalate diet, the anti-candida diet, the Failsafe diet and other elimination diets. All failed to make a dent in symptoms. The only time I noticed an improvement was when, after several bouts of gastroenteritis, I was forced to subsist on dry gluten free bread, a whey protein based meal substitute drink and skinless chicken. People commented that my skin looked good and I had improved energy, however, over time I returned to my normal diet and the benefits gradually disappeared.

Resolving the Dizziness, Brain Fog, Dysautonomia / POTS with B Vitamins and Diet

For more than three years, I have had daily dizziness pretty much all day as a symptom of dysautonomia/postural hypotension. An OAT test showed low thiamine and I had high hopes that thiamine would be the magic ticket that would get me out of dizzy brain fog hell. Thiamine and a reduced sugar diet did help a lot with energy, mood and general well-being, but unfortunately the reductions in postural hypotension were minor.

I experimented with supplements and lifestyle changes. I increased my meditation time, and did gratitude journaling and worked on taking in the good and rewiring my brain. This helped me better manage the stress of chronic illness and reduced some of my symptoms of depression and agitation.

I also found improvements in taking thiamine and riboflavin (B2) 3-4x a day along with high doses of the other B vitamins once a day. But, again the daily dizziness and brain fog persisted.

My big breakthrough came when I discovered that I had been taking the wrong form of niacin. I had been taking niacin and inositol hexanicotinate for the last three years, but it wasn’t until I returned to taking niacinamide that the symptoms dysautonomia dialed down. I started with a 50mg dose and by the end of the day I noticed that I had been less dizzy. I gradually increased the dose to the full 500mg and the symptoms kept reducing. I also got my brain back! No longer was I feeling constantly brain fogged, sluggish and mentally confused. Now that the niacinamide had my blood circulating properly and fueled my biochemistry things started working. My thyroid numbers had always been on the cusp of hyperthyroidism, yet I had a sluggish metabolism. Within a week, I noticed that with no other dietary changes my post-menopausal muffin top had reduced, my energy increased, and my skin was looking better.

The Missing Pieces: HACL1 and Phytanic Acid

I had high hopes that I would be able to completely eliminate the symptoms of dysautonomia, however, there is still some lingering dizziness. Over the last few weeks, I have been experimenting and have noticed two interesting associations.

The first, is sugar intake. Additional fruit or anything high in sugar increases my symptoms of postural hypotension. This could be linked to thiamine or niacin.

The second, is a reaction to foods high in phytanic acid. I first learned about the HACL1 gene from the Hormones Matter blog and I quickly realized that this made sense of the fact that I reacted to both A1 and A2 cheeses and yogurts as well as butter, but am fine on whey protein. I also react to oily fish and red meats but I am fine with pork and chicken. I live in New Zealand where all of our lamb and beef are grass fed, so all of our dairy products and red meat are higher in phytanic acid than the same products from grain fed animals.

In the past, I had noticed that any of these foods that are high in phytanic acid trigger feelings of rage and anger. There seems to be a threshold, so I can do an elimination diet and reintroduce butter and be fine, but over time, I believe that they phytanic acid accumulates and then the symptoms appear. Once I reach the threshold, I “hulk out” within minutes of eating beef, lamb, fat containing dairy products and oily fish. I have also had similar reactions in the past when I ate sugar or drank alcohol. I had in the past noticed that my dysautonomia was worse with all of these things. It would appear that thiamine is required to process all of these things, either directly in the case of sugar and alcohol or through the HACL1 gene for the other foods. This suggests that my body struggles to maintain thiamine levels and get the thiamine to where it is needed.

 

HACL1 rs17485390 (C) TT
HACL1 rs6784844 (T) CT
HACL1 rs6797119 (T) CT
HACL1 rs7648958 (A) AG

Feeling confident after increasing my niacinamide to 1,000mg spaced throughout the day, I reintroduced foods high in phytanic acid and the dizziness increased fairly quickly. I am now sticking to a low phytanic acid with only occasional red meat, fish or butter. (Yogurt and cheese are gone for good and maybe the other foods will need to be completely eliminated too.)

I found an old test that showed that my urinary l-lysine was low. After more research, I discovered that lysine helps maintain tryptophan activity and reduces the draw on niacin in the body. My tryptophan levels were normal on both urinary and blood tests but perhaps a lysine deficiency was indirectly affecting my niacin levels. After an initial dose of lysine I felt almost euphoric. This effect quickly leveled off. I am wondering if, after decades of fatigue, my body likes homeostasis and is counteracting the effects of nutrients that I clearly need. This has happened in the past with medications. After a few doses, they are basically rendered useless. This applies to antihistamines, psychotropics, painkillers, and so on.

Possible Secondary Pellagra

Is it possible that I have secondary pellagra? I initially dismissed the idea of pellagra as the symptoms seemed more severe than mine. My dermatitis was minor compared to the pictures online, I had an explanation for the dizziness (diagnosis of dysautonomia), the diarrhea has been an issue on and off, so it didn’t seem significant, and my mental confusion didn’t seem enough to qualify as dementia and yet I can now see that I did have the 3 Ds of pellagra despite adequate niacin intake. I don’t eat corn and rarely eat grains and have a diet high in niacin but I had many of the symptoms of pellagra including sensitivity to light, dermatitis, diarrhea, dizziness, feeling cold all the time, brain fog and mental confusion, difficulty falling asleep and weakness.

Interestingly, some of these symptoms overlap with thiamine deficiency symptoms and I feel very sure that I have had severe thiamine deficiency because I have also had tingling sensations and muscle pain, as well as a history of high intake of sugar, carbs and alcohol and a very positive response to thiamine and benfotiamine.

Going Forward: More Questions

My plan is to continue with my supplements and a low sugar diet and low phytanic acid foods. I am hopeful that this will completely eliminate the dysautonomia and leave me free to work on my other symptoms. My brain function is good when the dizziness is kept at bay and I feel more optimistic and happy and have a small but noticeable uptick in energy and strength.

Although I have made huge strides in my health, I am left with some lingering questions:

  1. I have been on high doses of many B vitamins for years and yet it seems that my body still craves them. Could years of undiagnosed Celiac Disease have affected the enzymes that take vitamins and converts them to the active form and transports them into organs and tissues? Is it realistic for this to still be happening after eight years of being gluten free?
  2. The literature glosses over the conversion from niacin to niacinamide as something that the body can easily do, however, I have taken high doses of niacin and inositol hexanicotinate without benefit and eat a diet rich in niacin foods without getting the benefits that I got from small doses of niacinamide. Is it possible that some people have challenges converting niacin to niacinamide? I have yet to find any research to support this other than a study suggesting that niacinamide is twice as effective as niacin. However, I was taking triple the dose of niacin with no benefits. I believe that my body is inefficient at converting niacin to niacinamide. If anyone knows of a specific illness that may cause this I would be interested in learning more.
  3. Is my reaction to phytanic acid foods due to a deficiency in thiamine (despite taking very large doses for years) or is there another reason that my body appears not to tolerate phytanic acid foods?
  4. Are there still more vitamin or amino deficiencies that I am yet to discover? In the future I will probably do another OAT or Nutreval to see whether my levels have improved but for now I want to let my body get used to the lower phytanic acid levels and see if things settle.
  5. My body seems to like homeostasis. For the first couple of days that I took niacinamide I noticed that I felt very warm, but I have returned to feeling cold all of the time. The dizziness has improved and it had almost disappeared but then crept back in. Could this be due to more vitamin or amino deficiencies that I am yet to discover, problems with my enzymes or is there some sort of ANS wiring issue that is better addressed by neural retraining?
  6. Sleep is another big issue for me and until I consistently sleep well without excessive NREM dreaming it is possible that these other issues will not fully resolve, but progress is exciting and I am hopeful that the last puzzle pieces will fall into place.

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.

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Hope for Cyclic Vomiting Syndrome

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Two days ago, I helped my twelve year old daughter pack for two weeks of overnight camp. We followed the suggested packing list that the camp provided, and when we got near the bottom of the list I realized there was one important thing that was not there that she needed—her medication and supplements. My daughter has had cyclic vomiting syndrome (CVS) since she was two years old, a disease that causes her to have frequent episodes of severe nausea, vomiting, and abdominal pain.

She has bravely managed this debilitating disease for 10 years. She has been going to camp for four years already, and every year she has had a vomiting episode at camp—one year while she was out on a canoe trip, and one year starting early in the morning on the day she was supposed to leave. When she was younger she used to have episodes like clockwork every two months, and as she got older, her episodes became less predictable, and more responsive to events in her life such as stress, fatigue, or even excitement. She would sometimes have three episodes within one month, and other times go for as long as three months without an episode. On average she would have one to two episodes per month.

This year, for the first time, she has had only two episodes of vomiting in the last seven months. This dramatic change occurred after she started a new regimen of dietary supplements—L-carnitine and Coenzyme Q10. We decided to try using these supplements after learning about research that suggests that CVS may be caused partly or completely by mitochondrial dysfunction. More information about the connection between CVS and mitochondrial dysfunction can be found here. L-carnitine and Coenzyme Q10 assist the mitochondria with energy production and thus, help compensate for mitochondrial dysfunction and potentially improve symptoms in CVS patients. These supplements may also help improve symptoms in other disorders linked to mitochondrial dysfunction such as migraine, irritable bowel syndrome, fibromyalgia, and medication adverse reactions.

Results from small clinical studies on the use of these supplements for cyclic vomiting syndrome have been very promising. A retrospective chart review study found that using these two supplements, along with a dietary protocol of fasting avoidance (having three meals and three snacks per day), was able to decrease the occurrence of, or completely resolve, the CVS episodes in many patients. The supplements were also shown to be safe and well tolerated, with few side effects.

My daughter noticed an immediate improvement in her symptoms. She had almost daily morning nausea even when not having a vomiting episode, and this disappeared almost right away. She started asking for breakfast, when previously I’d always had to try to convince her to eat at least half a piece of toast. She now will often eat either three eggs and two pieces of toast, or a big plate of dinner leftovers for breakfast. She also has a better appetite throughout the day. I don’t think I ever heard her say the words “I’m hungry” until this past year, when she was 12 years old. Previously quite underweight, in the past 7 months she has literally gained as much weight as she gained in the previous 7 years.

The first 2 months on the supplements she had no vomiting episodes. Then she ran out of her supplements while my husband and I were away, and within 2 days she was having a vomiting episode. Then over the last 5 months she has had one more episode, after a period of extreme stress. This represents a huge decrease in episode frequency for her. When we got to packing her medications and supplements for camp, I packed her supplements with careful instructions for the doctor as to the dosage, and the fact that she has to take them every day to prevent episodes, as we saw earlier this year what happens when she stops them even briefly. I then started looking around the house for her Zofran pills (a strong prescription anti-emetic), which was what we would usually use to try to stop her vomiting when she was having an episode. I have always sent them to camp with the instructions that they are to be used if she starts vomiting. I couldn’t find the Zofran anywhere—it had been so long since we had needed it. I called the pharmacy, but they didn’t have any in stock. I found one emergency pill stashed in my purse and I packed that, but I have a feeling that this could be her first year enjoying camp with no interruptions due to illness.

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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.

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Postscript: This article was published originally in July of 2014. We are happy to report that after years of suffering from CVS, Philippa’s daughter remains largely episode free with relapses only when she misses her supplements or changes her routine. For more on cyclic vomiting syndrome search our archive. 

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Two New Cases of Beriberi-like Syndromes: Thiamine Deficiency in Modern Medicine

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As a result of my participation in Hormones Matter, I receive quite a few emails that record histories of patients who have often languished with inexplicable symptoms, sometimes for years. I am going to record two histories here without identifying any possibility of the involved patients being recognized.

Patient number 1: Cyclic Vomiting, Hyper-salivation, Sensory and Neurological Issues

This is the story of a boy who had what was described as “chronic cyclic vomiting from 11 months until 24 months of age, sometimes 3 to 4 times a day”. Food refusal with chronic vomiting and severe weight loss (failure to gain) was described. His diet was recorded as consisting basically of chicken/beef and vegetables. Frequent use of Paracetamol for ear infections with fever was described. As an infant he experienced hyper-salivation, bad enough for wearing a bib 24/7. Extreme sensory issues were mentioned but were not specified. Dilated pupils from a very young age***, neurological issues with confusion, memory problems, speech difficulty and heart racing/palpitations were mentioned together with eye tracking difficulties. A high concentration of arsenic had been found, presumably in urine, although this was not specified. Candida, a form of yeast, had evidently been a frequent infection. He was reported to have Hashimoto (a thyroid dysfunction) and a high blood glucose ***. He exhibited complete lack of coordination, always “appearing drunk”, talking gibberish and repetitive behavior.

Discussion of Symptoms: Patient 1

Cyclic Vomiting

Sometimes known as winter vomiting, the cause of this relatively common condition is said to be unknown. Recurrent vomiting is one of the symptoms recognized for centuries in the thiamine ( vitamin B1) deficiency disease, beriberi. I had several patients with cyclic vomiting, described in our book (Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition) that responded to thiamine treatment.

Food Refusal

Appetite is governed in the lower brain by several hormones, explaining why a voracious appetite and food refusal could both be a signature of thiamine deficiency, depending on severity and chronicity of the deficiency.

Weight Loss

Severe weight and stature increase (failure to thrive), is a signature finding in familial dysautonomia, a genetically determined disease. Thiamine deficiency also causes dysautonomia. I reported a patient with eosinophilic esophagitis whose dysautonomia resulted in failure to thrive. With thiamine treatment his weight and height increased dramatically (see: Eosinophilic Esophagitis May Be a Sugar Sensitive Disease).

Ear Infections

Extremely common in children, this and jaundice of the newborn are both now known to be the result of inefficient oxygen utilization. Thiamine deficiency is an outstanding cause.

Excessive Salivation

The salivary glands are under the control of the lower brain and this fits with thiamine deficiency.

Extreme Sensory Issues

This is the result of inefficient oxidative metabolism in brain and has been a well known problem in thiamine deficiency beriberi. It is interesting that diabetics are sometimes pulled over and accused of drinking because of erratic driving and subsequent “drunken” behavior. I strongly suspect that this is a thiamine deficiency affect, because thiamine metabolism has recently been found to be closely related to metabolism in diabetes.

Permanently Dilated Pupils ***

This is a cardinal sign of sympathetic nervous system overdrive, fitting in with the diagnosis of dysautonomia.

Neurological Issues: Confusion, Memory, Speech, and Eye Tracking Problems

All of this is the result of inefficient oxidative metabolism in brain.

Tachycardia

This is the term for a fast heart rhythm and is a cardinal sign of dysautonomic sympathetic nervous system overdrive.

Urinary Arsenic

Pressure-treated wood in the United States contains a significant amount of arsenic and is generally touted as being the source for children using playgrounds. This is much more significant than arsenic in drinking water. Arsenic damages oxidative metabolism and could be contributive to the effects of thiamine deficiency.

Candida Infections

Candida is a common form of yeast that infects humans. It dislikes oxygen: consequently this infection is much more likely to occur in people whose oxygen metabolism is inefficient.

High Blood Glucose***

Of course, this means that the patient has some form of diabetes. Both type I and type II diabetes are now known to have thiamine deficiency as part of the syndrome. Alzheimer’s disease may be diabetes type III. Thiamine is absolutely vital in glucose metabolism.

Pattern Suggests Pyruvate Dehydrogenase Complex Disease

Pyruvate dehydrogenase is an enzyme that demands thiamine and magnesium in order to function properly. I would be willing to bet that this boy would be responsive to high doses of Lipothiamine and should be studied in detail by a physician who understands the possibility of inborn errors of metabolism. Note the two starred items above. The observation of permanently dilated pupils indicates excessive activity of the sympathetic branch of the autonomic nervous system. The high blood glucose is a sure indicator that thiamine metabolism is involved, even if there is insulin deficiency.

Patient number 2: ROHHAD

This is a little girl, age not specified. She was described as a patient with ROHHAD. This stands for “rapid onset weight gain, hypothalamic dysfunction and autonomic dysregulation”. The parent described this as “a very rare syndrome and only 150 cases have been recorded worldwide”. Children with this diagnosis are said to have similar symptoms. Most of them have central and obstructive sleep apnea. Many depend on CPAP. This child requires it only during sleeping but many other kids have tracheostomy and all are living on CPAP day and night.

Symptoms of patient 2: Sweaty Palms, Cold Intolerance, Tachycardia and More

At my request, the parent observed that there was no family history of alcoholism or smoking. The mother had been thinking of thiamine deficiency because of the child’s autonomic dysfunction. I have noticed that alcoholism and sugar sensitivity appear to be closely related genetically.

She has palm sweating. Father has blepharospasm (spasm of the eyelids) frequently, lasting for weeks at a time. She also has tachycardia (fast heart rate), excessive vomiting, cold intolerance with persistent cold extremities, peripheral neuropathy, binocular diplopia, double vision, gastrointestinal dysmotility, mood swings, and low pain perception are all symptoms of dysautonomia, the commonest cause being thiamine deficiency. Fortunately the family is working with a physician who had started thiamine treatment for this child. The parent closed with the remarks that “since she started TTFD she is having a fast heart rate at 140 beats a minute and low oxygen saturation with restless sleep. I decreased TTFD from 250 mg to 50 mg but my opinion is that she became more stable with oxygen saturation and pulse rate”.

Discussion of Symptoms: Patient 2

ROHHAD

Rapid weight gain, hypothalamic dysfunction, dysautonomia and sleep apnea are all included in this syndrome. I must point out that the word “syndrome” is always used for a collection of symptoms whose cause is unknown. In fact, all can be caused by thiamine deficiency.

Palm Sweating

Sweating is a result of sympathetic nervous system overdrive. She also has tachycardia, excessive vomiting, cold intolerance, peripheral neuropathy and double vision. Various forms of peripheral neuropathy are cardinal symptom in thiamine deficiency.

Gastrointestinal Dysmotility

The intestine is innervated by the vagus nerve which originates in the brain. This nerve uses a neurotransmitter known as acetylcholine, highly dependent on energy metabolism and therefore also dependent on thiamine. Japanese physicians have used thiamine derivatives for years to treat postoperative intestinal paralysis.

Mood Swings

I learned the hard way about mood swings in children when I found that the dominant cause was poor diet resulting in thiamine deficiency.

Low Pain Perception

Decreases in pain perception are described in familial dysautonomia, a genetically determined condition. Thiamine deficiency results in dysautonomia and may well be responsible for low pain perception.

Points of Consideration: Polysymptomatic Disease and Thiamine Deficiency

Both these children have fallen into diagnostic cracks. It seems only to be the persistence of struggling parents that do their own research and persist in trying to find an adequate explanation that addresses the plight of these children. To me, the problem is obvious. Polysymptomatic disease that affects so many body systems can only be explained by some form of energy deficiency, dependent on oxidative metabolism. Thiamine deficiency, arising from both genetic and nutritional abnormalities is a common cause. It could be a simple thiamine deficiency from diet but this is unlikely in the case of these two children who may have a genetically determined condition that is responsive to megadose thiamine.

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It Wasn’t By Choice: Dysautonomia

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It was just another sunny Malibu, California day back in April of 2006. My daughter and I had finished visiting Grandpa, and were on the road in front of Pepperdine University, where the sea gulls float in the air amidst the robust sea breeze. The smell of salt water permeated everything, and one could almost hear the crash of the waves, over and over again. My father had Alzheimer’s disease, so we were “regulars” at the Home. It was about 10 miles away, and we were headed home. POOF! In less than an instant of time, my truck was facing oncoming traffic as I heard a huge CRUNCH! Behind me, another truck was totaled in one large SMASH!

No one stopped. Blank, faceless people drove their cars to avoid hitting us, swerving to avoid hitting us. It was 2 pm on a Tuesday; they had nowhere to go.

I panicked and did the one thing that you are not supposed to do: get out of your car. I had to check on my daughter, my 3-year old baby, who was strapped tightly to her car seat. I was obsessive about that. I tried to stop the faceless drivers then, to help me get off the road, but they all drove by, glazed eyes. They had nowhere to go.

Our baby was fine. The driver had leaned over to stop her Chinese food from falling off the passenger seat, and lost control of her car as she pressed the gas instead of the brakes. There were no skid marks on the ground, and I never hit my head. We were ‘centrifuged’ and my brain suffered a torsion spin injury. We didn’t learn that for years. I felt fine on the scene. I watched the tow trucks take the other two cars away, wondering why they weren’t taking mine away, too. The rear axle was broken. The lady had been driving at a speed of about 90 mph.

People often stop me here and ask, “Did you get any money? Did you sue her?” Perplexed, I still fail to see the reasoning. So what if I got $70,000. I couldn’t walk; I couldn’t talk. For most of the nine years thereafter, I was bedridden.

Dysautonomia Diagnosis

I was confined to a wheelchair and couldn’t fit down a restaurant aisle. I couldn’t look at the shelves of yarn or I would throw up. The doctors thought I was malingering, until a cardiologist performed the Tilt Table Test and diagnosed me with dysautonomia. I was imbalanced and ataxic, and self-diagnosed a vertebral artery dissection. I went to Neurorehabilitation for weeks, and getting out of bed felt like I was a tremendous rock with no inertia, trying to move. Later, with the traumatic brain injury (TBI), I developed and self-diagnosed diabetes insipidus (DI), before I died of kidney failure. Even in the hospitals, the doctors asked me if I wanted valium, told me I was “too young to be a drug addict,” and asked me if I had a “psychiatric history.” The nurses would tell me to “just be a patient,” and then tell me “it’s a good thing you’re a doctor” when they tried to give me a beta-blocker to slow down my heart rate. My heart rate goes down to 35 beats/min every night. Slowing it down even more could have killed me during my sleep.

I lived on an IV PICC line for almost 4 years. What an oxymoron for an anesthesiologist to be constantly changing her own IV at home. It was a hard time. I got myself off the IV, by going down from 60 ml/hr to 59 ml/hr and so on. Finally, we pulled it out. The doctors did not realize that it could not stay in forever or I would die of an infection.

What I Learned: Fighting for Myself, Educating Others

What is the bottom line that I learned from all of this, being a doctor myself? Arguing with other doctors and surgeons for years? This is it: Women have to be knowledgeable about their own health. I had to fight for my diagnoses, each one of them, even the dysautonomia. It didn’t matter that I was a physician, my symptoms were downplayed and often ignored. Medications were offered that would have killed me. I had to fight. I had to become the expert in my own health. This was not an easy task when I was gravely ill but the choice was clear: fight back or die.

Eventually, I reached a point where I could at least write. My Stanford, USC, and Perelman University of Pennsylvania School of Medicine brain overflowed with medical information.

I did think straight on paper and in my own time (despite the doctors best attempts to convince me otherwise). So, in my trapped-in form of disarray, I learned about menopause, hormone replacement therapy (HRT), and common women’s health issues. I made it my mission to educate girls and women. Recently, I completed my fifth book, Archives of the Vagina: A Journey through Time. It starts from a girls’ First Period, and continues with thoughts Aristotle had on menstruation, other men who contributed to women’s age of consent for sexual intercourse. I pass it on to you as my life’s work to help women worldwide. If you are ill now, keep fighting.

Become the expert in your own health. Find your voice and when you can, help others find theirs too.

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This post was published originally on Hormones Matter on March 9, 2015.

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Just Released: Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition

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Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition

Together with Dr. Lonsdale, I am proud to announce the release of our new book: Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.

If you have followed our blog, Hormones Matter, for any amount of time, you’ll know that we spend a lot time writing about mitochondrial distress. Mitochondria are the engines that fuel our cells and sit at the nexus of health and disease. Healthy mitochondria do much to stave off disease, allowing the body to survive all manner of modern stressors, from illness to toxicant exposures, and everything in between. Unhealthy mitochondria, on the other hand, can set into motion a series of reactions leading to complex, multisystem illnesses that modern medicine often has no earthly idea how to treat. This book is about those illnesses and the mitochondrial cascades that allow their existence.

We cover the chemistry of illness from the mitochondria upwards through the autonomic system, to the symptoms and back again. It is a chemistry that we seem to have forgotten in recent years, a chemistry we like to ignore when it contradicts our presumptions about pharmaceutical medicine and diet, and a chemistry that kicks us in the butt when we deny its importance. The chemistry is complicated on its surface, but a deeper dive reveals what Dr. Lonsdale refers to as ‘the exquisite simplicity‘ of health and disease. This book will teach you that chemistry and much more.

Why Thiamine? Why Now?

Thiamine takes center stage in this book, not because it is a magic vitamin that cures all, but because it sits atop the mitochondrial energy pathways. It is a gatekeeper of sorts, determining if or how other downstream mitochondrial functions proceed. For some inexplicable reason, amid all the research on the importance of other nutrients, we seem to have forgotten thiamine. Over and over again, we are presented with cases on Hormones Matter of overt thiamine deficiency, and yet, rarely do physicians consider it. More often than not, it is the patients or their caregivers that figure it out.

Why don’t we consider one of the most fundamental units of health? The short answer, if we are honest with ourselves, pharmacology and surgery are far sexier than nutrition. Unfortunately, however, disease processes do not develop because of drug deficiencies or a lack of surgical prowess. In the Western world, they develop in large part because of nutrient deficiencies within the context of high calorie malnutrition and in conjunction with other stressors. Understanding the chemistry that decides health or disease is critical to achieving health. A key component of that chemistry involves thiamine. This book details how to recognize, evaluate, treat, and understand thiamine deficiency. It is a complicated topic, but written for a broad audience.

Buy Now and Receive a Discount

For a limited time, the publisher is offering a 30% discount off of the list price and free shipping if the book is ordered from their site. Just click the link below enter the promotional code ATR30 at checkout.

Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition

The discount does not apply to Amazon orders.

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Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors

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Gait, tremors with adverse medication vaccine reactions

One of the things I most love about social media and health research is the opportunity to identify patterns of illness across different patient groups. Here is an example of finding research from one patient group, ThyroidChange, that likely spans many others (Gardasil injured, post Lupron Hashimoto’s, and Fluoroquinolone reactions – to name but a few) and offers clues to a perplexing array of symptoms. The research, is about a little known association between movement and balance disorders and Hashimoto’s thyroiditis: Ataxia associated with Hashimoto’s disease: progressive non-familial adult onset cerebellar degeneration with autoimmune thyroiditis.  Some background.

Hashimoto’s Disease

Hashimoto’s is the most common causes of hypothyroidism afflicting women at a rate of 10 to 1 compared to men. It is an autoimmune disorder in which antibodies attack the thyroid gland and destroy its ability to maintain normal thyroid hormone concentrations. The most common symptoms include: fatigue, muscle pain, weight gain, depression, cognitive difficulties, cold intolerance, leg swelling, constipation, dry skin. If left untreated, goiter – a swollen thyroid gland, appears. If left untreated for an extended period, cardiomyopathy (swelling of the heart muscle), pleural (lung) and pericardial (heart) effusion (fluid), coma and other dangerous conditions develop.

Hashimoto’s and Cerebellar Degeneration

A little known risk in Hashimoto’s is cerebellar degeneration. The cerebellum is the cauliflower looking section at the base of the brain that controls motor coordination – the ability to perform coordinated tasks such as walking, focusing on a visual stimuli and reaching for objects in space. The walking and balance disturbances associated with cerebellar damage or degeneration have a very distinct look, a wide gait, with an inability to walk heel to toe. Cerebellar ataxia looks like this:

In recent years, cerebellar involvement in attention and mood regulation have also been noted. The physicians reporting the Hashimoto’s – ataxia connection present case studies of six patients with Hashimoto’s disease, presumably controlled with medication and a progressive and striking shrinkage of the cerebellum (see report for MRI images) along with progressively debilitating ataxia (walking and balance difficulties) and tremors. Here’s where it becomes interesting.

Hashimoto’s: Medication Adverse Reaction and Misdiagnosis

Hashimoto’s disease is prevalent in our research into medication adverse reactions for Gardasil and Cervarix and Lupron, with some indications it may develop post Fluoroquinolone injury as well. The symptoms are difficult to distinguish from other neurological and neuromuscular diseases such as chronic fatigue syndrome, fibromyalgia, multiple sclerosis and an array of psychiatric conditions, and so Hashimoto’s often goes undiagnosed or is misdiagnosed and mistreated for some time.

Hashimoto’s, Demyelination and Cerebellar Damage

In some of the more severe adverse reactions to medications and vaccines that would lead to Hashimoto’s, the tell tale cerebellar gait disturbances have been noted and documented, along with a specific type of tremor (discussed below).

Research from other groups shows a strong relationship between thyroid function and myelin/demylenation patterns in nerve fibers in animals. Specifically, insufficient T3 concentrations demyelinates nerve axons, while T3 supplementation elicits myelin regrowth. Myelin is the white sheathing, the insulation that protects nerves and improves the electrical conduction of messages in sensory, motor and other neurons. Like co-axial cable in electrical wiring, when the protective sheathing is lost, electrical conductance is disrupted. The early symptoms of a demyelinating disease neuromuscular pain, weakness, sometimes tremors. These can be misdiagnosed as multiple sclerosis, fibromyalgia, chronic pain, when in reality, the culprit is a diseased thyroid gland.

Back to the Cerebellum

The cerebellum is a focal point of white matter axons – myelinated sensory and motor nerves. The cerebellum is where input becomes coordinated into motor movements or movement patterns. White matter damage in the cerebellum causes cerebellar ataxia, the movement and balance disorders displayed above. Hashimoto’s elicits white matter disintegration. Adverse reactions to medications and vaccines can elicit autoimmune Hashimoto’s disease. See the connection?

The Thiamine – Gut Connection

It gets even more interesting when we add another component of systemic medication adverse reactions – nutritional malabsorption, specifically thiamine deficiency. Almost across the board, patients with medication or vaccine adverse reactions report gut disturbances, from leaky gut, to gastroparesis, constipation, pain and a myriad of other GI issues that make eating and then absorbing nutrients difficult. Gut issues are common in thyroid disease too.

As we learn more, and as individuals are tested, severe nutrient deficiencies are noted, in vitamin D, Vitamin B1, B12, Vitamin A, sometimes magnesium, copper and zine. We’ve recently learned of the connections between Vitamin B1 or thiamine deficiency and a set of conditions affecting the autonomic nervous system called dsyautonomia or Postural Orthostatic Tachycardia Syndrome (POTS) linked to thiamine deficiency in the post Gardasil and Cervarix injury group. It may be linked to other injured groups as well, but we do not know yet.

Thiamine and Cell Survival

Thiamine or vitamin B1, is necessary for cellular energy. It is a required co-factor in several enzymatic processes, including glucose metabolism and interestingly enough, myelin production (the Hashimoto’s – cerebellar connection). We can get thiamine only from diet. When diet suffers as in the case of chronic alcoholism, where most of the research on this topic is focused, or when nutritional uptake is impaired, thiamine deficiency ensues. Thiamine deficiency can elicit cell death by three mechanisms:

  1. Mitochondrial dysfunction (reduced energy access) and cell death by necrosis
  2. Programmed cell death – apoptosis
  3. Oxidative stress – the increase in free radicals or decrease in ability to clear them

Thiamine deficiency in and of itself can elicit a host of serious health symptoms. The cell death and disruption of cellular energy balance can be significant and lead to a totally disrupted autonomic system.

Thiamine and Myelin Growth

Add to those symptoms, the fact that thiamine is involved in the growth myelin sheathing around nerves, and we have a whole host of additional neuromuscular symptoms masking as fibromyalgia, multiple sclerosis, chronic fatigue. Like with MS, limb and body tremors are noted in dysautonomic syndromes such as POTS. (Video of POTS tremors, note the uniqueness of the POTS tremor and the similarity between it and the foot tremor shown above along with cerebellar ataxia).

Let thiamine deficiency continue unchecked for period and we get brain damage, as white matter – the myelin disintegrates in the brainstem, the cerebellum and likely continues elsewhere. One of the most prominent areas of damage in thiamine deficiency, is the cerebellum, and hence, the cerebellar ataxia (movement disorders) noted in chronic alcoholics who are thiamine deficient, but also observed post medication or vaccine adverse reaction.

The Double Whammy on Myelin and Cerebellar Function

In the case medication or vaccine adverse reactions, particularly those that reach the systemic level, we have a double whammy on myelin disintegration: from a diseased thyroid gland and a diseased gut. Hashimoto’s and the reduction of thyroid hormones, particularly T3, impairs nerve conduction by shifting from a constant and healthy remyelinating pattern to one of demyelination, while the lack of thiamine further impairs myelin regrowth, because it is a needed co-factor. Both deficiencies affect peripheral nerves, but both also hit the brainstem, the cerebellum and likely other areas within the brain.

Take Home Points

The science of adverse reactions is new and evolving and much of what I am reporting here remains speculative. However, it has become abundantly clear through our research that to address medication adverse reactions or vaccine adverse reactions in a simplistic fashion, by region, or in an organ specific manner, is to miss the broader implications of the compensatory disease processes that ensue. Moreover, to look for symptoms of adverse reactions simply by the drug’s mechanism of action and/or by the standard outcome variables listed in adverse event reporting systems, again misses the complexity of the human physiological response to what the body is perceiving as a toxin. I believe that the entire framework for understanding the body’s negative response to a medication must be shifted to a much broader, multi-system, and indeed, multidisciplinary approach. In the mean time, we will continue to collect data on adverse reactions and offer our readers points of consideration in their quests for healing. I should note, that finding these connections is entirely contingent on the input our community of patients and health activists, both via the personal health stories that so many of you have been willing to share and the data we collect through our research. You know more about your health and illness than we do.

What we Know So Far – Tests to Consider

If you have had an adverse reaction to a medication or vaccine and neuromuscular difficulties, like pain, numbness, motor coordination problems, tremors etc., consider testing for Hashimoto’s thyroiditis. Also, consider thyroid testing when fatigue, depression, mood lability (switching moods), constipation, attentional and focus difficulties are present. In fact, I would consider thyroid testing, specifically for autoimmune thyroid disease like Hashimoto’s, as one of the first disease processes to rule out.

If you have had an adverse reaction to a medication that includes gut disturbances, consider the possibility that you are deficient in key micronutrients such as Vitamin D, the B’s, Vitamin A, magnesium, copper, zinc. And given the modern diet, consider that you were probably borderline deficient even before experiencing the adverse reaction. These nutrients are critically important to health and healing (and no, I do not have an association with vitamin companies or testing companies). Some tests for these nutrients are more accurate than others, so be sure to do your homework first.

If you have symptoms associated with autonomic systems dysregulation such as those associated with POTS, dysautonomia and its various permutations, consider thiamine testing, especially, transkelotase testing.

Share Your Story

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Postscript: This article was published originally on Hormones Matter on October 15, 2013. 

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