chronic fatigue

High Dose Thiamine Healed My Fatigue. How Do I Navigate Pregnancy?

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Downward Spiral, Upward Hope, Asking Advice

The year 2020 marked a big change for a lot of people. For me, it meant a downward spiral into intense fatigue, brain fog, and heart palpitations. Healing came in increments over the next three years until I found thiamine, which expedited my healing in six months. Now, I am considering pregnancy, but I need your advice. How do I navigate taking megadoses of supplements while growing a baby? How do I know when my healing journey is “complete,” and does that mean my supplement regimen ought to change? Any and all comments are welcome!

How It Started

It was early 2020 when I returned from a vacation from Thailand and got a stomach bug somewhere along the way home. I rested in bed a couple of days and mostly recovered, but had a lingering burning sensation in my stomach for the next month or so. I then noticed my stool started to smell strange and I experienced bloating after some meals. I went to the gastroenterologist, and within a month they had done an endoscopy and discovered erosive gastritis. I was put on a proton-pump inhibitor (PPI) and sucralfate to coat my stomach.

Two weeks on these medications and I felt immense brain fog and extreme fatigue, so much so that I felt like I would fall over in my chair at work. The fatigue hit me like a ton of bricks– I slept throughout the night and forced myself to take naps, and nothing helped shake the overwhelming fatigue. I took a few weeks off of work and tried to rehab myself at home, eating as much healthy food as possible (I was tracking 3,000 calories a day, which I felt I must need to get healthy again). I tracked all of my nutrients in an app and made sure I hit (and exceeded) the RDA for every nutrient (with the help of supplements). Still, things were not improving much, and I couldn’t even walk one stretch of the block without being utterly exhausted. It was during this time off of work where I felt so helpless and drained in every sense that I remember thinking, “this is what the beginning of dying feels like.” It scared me. But I honestly did not know what to do or where to turn.

A picture from July 2021 after a short hike. I felt horrible and my husband felt great :).

I knew the medications were not making me healthier (even if they made my stomach feel better), so I went off of them cold-turkey. The burning in my stomach became quite severe due to the rebound effect of getting off a PPI, but I pushed through, knowing that I needed my body to heal on its own.

The next three years brought incremental improvements, but still much suffering. Intense brain fog, insatiable fatigue that heightened post-exertion, and dysautonomic symptoms plagued me daily. I was waiting for a big break that seemed like it might never come. Little did I know, my time was coming in the spring of 2023.

How It Really Started

It would be easy to blame a stomach bug for all of my problems, but I now know that my nutrient stores have been taxed and depleted over many instances in my life. Here is a snippet of what led me to the crash:

– Childhood: Ear infections (antibiotics), chronic stomach aches, sugar consumption

– Adolescence: Traumatic brain injury (brain sheer, 3 days coma), mononucleosis, asthma

– Young adulthood: chronic UTIs (i.e., chronic antibiotics (including 3 separate Bactrim prescriptions and anti-fungals (fluconazole) afterward), several deaths in the close family (emotionally taxing), monthly naproxen for menstrual cramps, developed gluten sensitivity, shortness of breath (air hungry).

The stomach bug was simply the straw that broke the camel’s back. All of the stressors in my life (physical, emotional, etc.) depleted my body until it couldn’t retain a guise of “healthy” anymore.

My First (Unknowing) Megadose

Throughout the entirety of 2020, I experienced bloating and IBS symptoms. I managed the symptoms well enough with a low FODMAP diet, but one tiny piece of garlic, onion, etc. and I was ruined. I knew I wasn’t healed with this diet, but I didn’t really know how to heal, especially hearing that IBS is something you have to live with for the rest of your life. This scared me, but I wanted to see what answers may be out there.

I came across a study that claimed that the vast majority of participants taking a multivitamin, B-100 complex, and vitamin D3 were cured of their IBS within three months. It seemed like a miraculous and promising study, so I decided to try it myself. Lo and behold, around the three month mark, I was able to incorporate high FODMAP foods without experiencing bloating (it took a stretch of a few weeks to fully incorporate these foods as my body was adjusting).

Back then, I thought it was the vitamin B5 that was responsible for ridding me of bloating symptoms. Vitamin B5 is closely linked to gut health. Looking back now, I have a strong notion that I was helped due to the thiamine content in the B-100 + multivitamin. I megadosed without knowing it. And unfortunately, after about 4 months, I stopped taking the B-100.

My Second (Reluctant) Megadose

I visited a naturopath in the spring of 2021 to try to get more answers. I still had brain fog and fatigue, and had also developed a regular heart palpitation every ~15 minutes, which coincidentally happened after my second round of a certain vaccine. The naturopath prescribed many supplements, one of which was 150 mg of iron per day. I was shocked by this and thought that was wayyyy too much and was scared I would get iron overload, but he assured me that with my ferritin levels at a 9, it was desperately needed.

Within a week of supplementing with iron, I felt a big boost in energy and felt I had found the answer that I had been waiting for. While it did help, I reached a threshold of improvement that did not change despite continued supplementation with iron for over 1.5 years. The iron supplements did help with my heart palpitations, but I still had brain fog and fatigue. On a scale of 1-10, with 1 being my lowest point in the summer of 2020, iron brought me to about a 4.

My Third (Homecoming) Megadose

So time went on and I tried every supplement under the sun. I focused on vitamins and mitochondrial nutrients such as L-carnitine, alpha lipoic acid, CoQ10, and others, and I was able to live a life that looked kind of normal. But it didn’t feel normal. I was obsessed with finding the answer(s) to this dark cloud that had been engulfing me the past few years.

Until one day, just six months ago, in late April of 2023, a recommended video popped up on my YouTube homepage that changed my life. The video was from a smart lad named Elliot Overton talking about thiamine deficiency.

You probably know how the story goes.

I started with benfotiamine, because I could get it at the store, while I waited for my TTFD to arrive in the mail. I kept trying to press how much I could tolerate without too much headache/fatigue/brain fog, and I honestly can’t remember if I noticed an improvement in those first few days. Once my TTFD arrived though, within two days of supplementing I felt a rushing wave of beautiful relief come over me.

Finally. Finally! My answer had come. I wasn’t immediately better, but I knew improvement was on its way. It wasn’t long before I came across Hormones Matter, which brought me so much useful information! I began sleeping better. My dreams were more vivid. I was able to sweat more easily, something I didn’t know I had lost until it returned. The volume was turned down on my anxiety and breathing deeply was easier.

It took some adjusting and playing around with dosing to find out what would help me. At first, I could only consistently tolerate one 50 mg TTFD pill every-other day, or I would get a racing heart and worsened fatigue. I also noticed that after about a week of taking TTFD, I would start to feel drained, as if it wasn’t giving me that feeling of relief anymore. So what worked for me was to cycle TTFD, thiamine HCL, and sulbutiamine for one week each. That kept my feelings of “relief” heightened. I pretty much abandoned benfotiamine because, well, I had other stuff that was working and I didn’t want to change my routine.

Within about a month, I was able to take one TTFD per day. As time went on, I kept bumping up all of my doses for each type of thiamine. I would basically take a day to test how much I could handle, then try to sustain that higher new dose. By the end of July, I was taking 5-6 TTFD and 10-ish thiamine HCL (100mg each). I am not exactly sure with the doses. I believe I only made it up to 400 mg of sulbutiamine. At a certain point mid-summer, I dropped the sulbutiamine because it seemed to be making me feel depressed, even though it helped when I first began taking it. I also dropped the thiamine HCL. I felt that TTFD was more powerful and so I stuck with it. I no longer experienced a drop in “relief” symptoms and was able to take TTFD only without any adverse effects.

Somewhere between then and now I have worked myself up to 12-14 TTFD per day (600-700 mg). I have very little brain fog or fatigue and can work out without being drained the next several days. I feel pretty darn good most of the time. Of course, there are ebbs and flows, but overall, I am doing well.

In addition to the thiamine, I have been taking lots of support nutrients too, such as magnesium, multivitamin/B complex, selenium, molybdenum. Another major helper for energy has been 10-15 grams of creatine monohydrate per day. I eat a whole-foods diet with no added sugars.

My Fourth (Aha!) Megadose

Recently, I came across information by Linus Pauling, a Nobel Prize and Peace-Prize winner who championed high-dose vitamin C therapy for minor and major illnesses. I caught a cold around this same time, started high-dose vitamin C therapy, and was absolutely sold with the idea, as none of my symptoms really developed into much at all. While I’m not convinced of taking megadoses of vitamin C every single day, I am certain it is helpful during times of sickness.

Then I read about Orthomolecular Medicine, which uses high-dose vitamins for treating diseases (chronic, communicable, genetic), and it all made sense! I felt as though I had uncovered a secret to the world! I wouldn’t have believed it had I not experienced the “miracles” of megadosing first-hand, but now I realize that most, if not all, diseases can be treated with the right dose of specific nutrients for the right amount of time. I also realize that those doses are higher doses than what we think! And higher still! Yeah– even higher. And longer– yes, keep taking them. I don’t mean to oversimplify people’s illnesses, but rather to illustrate the power of high-dose vitamin therapy.

Then Versus Now

My healing journey is not quite over. I have tested positive for antinuclear antibodies since 2020, and my latest test (October 24, 2023) still tested positive (qualitative only). Finding out these results was a little disheartening, as I really thought my results would be negative. I have had less energy and some mild dysautonomic symptoms since receiving those results, which either means a) the power of suggestion has really gotten to me or b) I switched to thiamine HCL around the same time and it is not as effective as TTFD.  I am leaning towards the latter, but I wanted to give HCL more of a shot because the amount of TTFD I’m taking per day is getting expensive! And as a more recent update, the last two days I’ve tried Benfotiamine, which I have been very pleased with— my energy seems to be much better than with thiamine HCL.

I also just started alpha-GPC as a new supplement.

Here is some physical evidence that I am healing:

In one of my textbooks, I found that a B-vitamin deficiency (doesn’t say which B vitamin) causes a smooth tongue.

tongue vitamin B deficiency
Figure 1. Textbook images of vitamin B deficiency affecting the tongue.

I took a picture of my tongue in October 2020, and the second picture in October 2023. Notice the more prominent fuzzy (white/gray) projections in the second picture. These projections are quite blunted in the first picture.

Vitamin deficiencies and the tongue
Figure 2. Photographs of my tongue. Left: October 2020. Right: October 2023. The most prominent changes are on the sides and at the back of the tongue (more “fuzzy”). I believe these changes are in large part due to thiamine.

Hope for The Future

My husband and I are excited about the possibility of getting pregnant, especially now that I am feeling so much better. Having a child has been a long-time dream of mine, and while I was struggling with my health, I wasn’t sure if that dream could come to fruition. So now being in the place I’m in, I’m thrilled that we can think about having a child. I’ve had to tap the brakes on my excitement, because I don’t want to potentially cause any harm to a growing baby due to my megadosing of thiamine. So, I have a couple of questions.

Asking Advice:

  1. Does anyone have any research, personal, or hearsay information regarding the safety of megadose thiamine during pregnancy? If so, did the type matter (TTFD, thiamine HCL, Benfotiamine)?
  2. What is the maximum dose you reached for TTFD/thiamine HCL/Benfotiamine?
  3. Have any of you had any experience with weaning off of thiamine or stopping cold-turkey? I have gone a few days here and there without supplementing with no issue, but not longer than that. If so, was your health maintained, or was there a maintenance dose that sustained you?
  4. How did you know it was time to stop/decrease thiamine (if at all)?

Closing Thoughts

I just want to extend my heartfelt empathy for all of you who may be experiencing health struggles. Before these past few years, I sometimes had the arrogant thought that people could just be healthy if they avoided sugar and exercised. I thought their health struggles were their “fault”, to an extent, but I now recognize the complexity of health and the desperation in trying to find it once it is lost. I understand what suffering is and the feeling that there is no escape. I understand the feeling that no one truly knows what you are going through, even though they extend love and patience with you. I get it, and it sucks so much that this has to be a part of the human experience—but I have also experienced hope. A real hope. A hope that delivers what it promised. I could not have known even a day before taking thiamine that my time of deliverance had come. So please do not give up hope. Your day is coming.

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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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From Mother to Daughter: The Legacy of Undiagnosed Vitamin Deficiencies

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This is a story of a mother with undiagnosed vitamin B deficiencies who gave birth to a daughter who was also born with undiagnosed vitamin B deficiencies. In the eyes of conventional doctors and labs, there was not much wrong with us, but we knew that life was harder than it should be. We lived managing debilitating dizziness, daily migraines, fibromyalgia pain, chronic fatigue, allergies, hormonal changes, anxiety, and depression. Until we discovered that we were both hypermobile with histamine issues, hypoglycemic, and had many vitamin B deficiencies. The biggest challenge was for my daughter to start taking thiamine (vitamin B1). Her heart rate was all over the place and she had such a bad paradoxical reaction to thiamine that we believe she had been living with undiagnosed beriberi along with POTS.

Mom’s Health Marked by Asthma, Anxiety, Migraines, and a Difficult Pregnancy

All I remember as a child is being afraid to talk in school even if I knew the answer to a question. I had allergies and could not exercise due to asthma. During college, I had to read over and over the same thing because I could not concentrate. I worked extremely hard because the fear of failure was too much to bear. I started to have hormonal imbalances and missing periods. I successfully finished college and moved away to another state. That is when migraines started. Later, I became pregnant with my first child and started having blood clots. Anxiety and depression would come and go with hormonal changes.

When I was pregnant with my second child, my daughter, I was sick every morning with nausea.  After 6 months of pregnancy, I had gained only 6 pounds. Ultrasounds showed that the baby was growing normally, but I was losing weight. At that point, I also could see blood clots on my leg. I was placed on bed rest. By the 8th month, my water broke and my daughter was born. She was jaundiced and placed under UV light for a week. I also stayed in the hospital for a week dehydrated, with blood clots, and with the “baby blues”. We left the hospital after a week, and she had a “normal” development. However, you could see that she was a baby that would not go with anyone, not even the people close to us, indicating some anxiety.

Daughter’s Early Health Issues: Selective Mutism, Asthma, Concentration Issues

When my daughter turned four years old, we moved out of state and that is when she stopped talking outside the house. I later found out that it is called selective mutism, a form of severe social anxiety. She started seeing a school counselor to try to help with her anxiety and self-esteem issues. I brought a girl scout group to my house so that she could start having friends and talk to others in her area of comfort. She also developed asthma and needed nebulizer/albuterol treatments frequently and daily QVAR for prevention. She was given Singulair, but it made her very depressed. Her grades in all classes were all over, from A to D.  She would spend the whole time after school trying to complete homework, but she couldn’t. Her teacher told me that she really did not have that much homework. I would ask her to watch the dog eating and to take her outside as soon as the dog finished but she would be wandering around the kitchen and could not pay attention to the dog. Her neurologist gave her Strattera and that helped a little. Her EGG also showed some abnormal activity. The doctor recommended anti-seizure medicine and said that she was probably having mal-petit seizures. I refused medication based on how she reacted to Singulair and because the doctors were using words like “probably” and “just in case”. I kept an eye on her and noticed when she ate ice cream and got asthma. I had her stop sugars and dairy.  Soon after that, a teacher called me, excited to tell me that my daughter was talking at school. She also was able to stop all asthma medication except for 2 weeks every year when seasonal allergies would hit. At this point, it had been already four years since she stopped talking outside our house. She started excelling in all classes and we were able to stop Strattera. However, the continuous anxiety remained.

The Teenage Years: Continuous Migraine, More Medications, and No Answers

At 16 years old, she got a cold that turned into asthma with a continuous headache that just would not go away. She started waking up every day with a migraine, depressed with no energy. We had to wait three months to see a pediatric neurologist. Meanwhile, I would take her to my chiropractor early in the morning, give her an Excedrin, and she would go to school whenever she felt better. She began drinking at least 2 cups of coffee every day to help with the pain. Sometimes she would go to school at 11am, sometimes at 1pm. Even if there was just one class left, she would go to school. At this point, she felt that she wouldn’t have a future.

When we finally went to the neurologist, he recommended amitriptyline. I had been on amitriptyline and woke up one day not knowing which year or season was, but I was told that the issue was the high dose given to me (125mg), after decades of it increasing it every year. I agreed as long as it was a low dose.  Amitriptyline lessened the continuous headache, but it was not really gone, and she still needed some Excedrin. She started daily aspirin as well. She was just getting by day to day trying to manage her pain and mood and trying to have a normal teenage life.

Increasing Weakness When Outdoors: Untangling Root Causes

She became very weak whenever we would go to the beach or to a park. We would have to drag her indoors and give her water. On some occasions, she would say that she could not see. Somehow, she successfully managed to graduate from high school. We started seeing functional doctors. We found that she had some variants related to mitochondria dysfunction, but we really didn’t know how to address this. We also found out that she had Hashimoto’s and antibodies against intrinsic factors, which was indicative of pernicious anemia. We knew right there, that she had issues that conventional doctors had missed.

We also did a Dutch test and found that all of her hormones were high. The functional doctors suggested sublingual B12, folinic acid, and a B complex. She said the vitamins made her feel awake for the first time. However, chronic fatigue was still a major struggle for her. Eventually, she had to stop folinic acid because it made her depressed and unmotivated. Meanwhile, she managed her anxiety with herbs, but it was a real struggle.  She also continued to have asthma requiring albuterol every fall season. She chose a very challenging career in cell biology with biochemistry. She went through college with many cups of coffee just to control migraines, have energy, and be alert.

Discovering Her POTS Symptoms

The summer of 2019, before her senior year of college, the nurse checked her vitals as part of her new summer internship. The nurse thought the pulse monitor was broken because her heart rate was 120 sitting down. After a few minutes, it went down to 99, so the nurse dismissed it. When she told me that, I started paying attention to her heart rate. We went to her physician and neurologist and in both instances, her heart rate was 100, just sitting down waiting for the doctor. I asked if it was normal, and they said that it was in the upper range but not a concern. I was still concerned and made an appointment with a cardiologist but also bought her an iwatch. She noticed right away how her standing heart rate would be over 100, and by only taking a few steps, her heart rate would go even higher and she would become fatigued and even dizzy. From the heart rate monitor on her iwatch, we could see how quickly her heart rate would climb upon standing and then slow a bit when sitting.

That is when I remember that I have read about POTS and hypermobile people. I remember that when she was a child, the neurologist had said that she was hypermobile, but never said that it could be a problem for her. It just seemed like a fun thing to have. I started asking in health groups and someone mentioned that her medications could also cause high heart rate. I searched and amitriptyline did have that side effect.  That is when my daughter showed me that her resting heart rate was in the 90s and it would fluctuate from 29 to 205 without exercising. When we went to the cardiologist and explained all of this, he said that he did not even know how to diagnose POTS because it is rare. He did testing and said that the heart was fine but there was some inefficiency due to some valve leaking but that it usually does not cause symptoms. I asked about amitriptyline and he confirmed that it could raise heart rate.  At that point, she stopped amitriptyline and her maximum heart rate was 180 instead of 205.

She went back to her last year of college when Covid hit. She came back home and we could see the lack of energy and how much doing any little thing or stress would crash her for days. Since I needed glutathione for chemical sensitivities, I decided to see if it would help her. Glutathione with co-factors helped her recover, instead of crashing for days, she would recover the next day. That is when she told me that every time she walked to school, she felt that she would pass out. When she gets up in the morning, she ends up lying on the floor because of dizziness. Despite her dizziness, daily muscle pain, daily migraines, and chronic fatigue, she had big dreams. She just kept pushing through day by day, with coffee, herbs, and whatever it took, but she knew that something had to change. She successfully graduated in May, Magna Cum Laude, and she had a couple of months to deal with her health before she would leave to start her graduate studies and research job. That is when I found people that knew about Dr. Marrs’ work and thiamine, and her life finally changed.

Introducing Thiamine and Other Micronutrients: Navigating the Paradox

A functional doctor recommended magnesium and niacin for her migraines and they significantly helped. This gave the functional doctor the idea to try tocotrienols. High doses of tocotrienols worked better for reducing her migraine pain than amitriptyline and aspirin combined. Then she started taking high doses of B6. This helped her muscle pain and improved her mobility. Despite being hypermobile, easy stretches gave her intense muscle cramps prior to starting B6. Guided by very knowledgeable researchers belonging to Dr. Marrs’ Facebook group, Understanding Mitochondrial Nutrients, we started Allithiamine. The first thing she said was “wait, the sun does not hurt?”.  I asked her what she meant.  She explained that all her life, being in the sun gave her pain in her eyes and forehead and that she couldn’t understand why people wanted to be outside. No wonder she never wanted to go outside. She also said her migraines were gone. We have waited 4 years to hear that!

After just a couple of days, she started having a lot of nausea and lower-intensity migraines returned.  The researchers knew right away that she needed more potassium. She started to eat apricots, coconut water, or orange juice every time she had nausea and it helped. However, it was happening every hour so we decided to try a different Thiamine. We tried half Lipothiamine and Benfotiamine but she didn’t feel as much benefit and still gave her issues. We went back to 1/10 of Allithiamine. Chatting with the researchers, one asked if she also experienced blinding episodes. Yes! Finally, someone that knew about that! They recommended B2 and we started it. That’s when we discovered that her pain in the sun and dizziness were caused by a B2 deficiency. She continued waking up with crashes needing potassium every hour. She did not sleep that week. The researchers suggested taking cofactors including the rest of the B vitamins, phosphate salts, phospholipids, and beef organs. Beef organs and phospholipids helped with energy and bloating, phosphate salts helped with nausea and irritability.

Then researchers suggested that she needed to stabilize sugars and have more meat. That is when we realized that she had some type of hypoglycemia. We had noticed that she would get very tired and got shaky hands if she didn’t eat. Functional doctors had mentioned that she may have reactive hypoglycemia since she had a fasting glucose of 70. She started having more meat to stabilize her sugars and removed all packaged foods, sugars, grains, and starches. She started having just fresh meat, veggies, rice, beans, nuts, and berries. She felt that she was so much better with beef that she started using it for potassium between meals and bedtime.

She was able to increase allithiamine little by little. She would mix a little bit with orange juice since it tasted so awful. Little by little, she started having fewer crashes and feeling better. It took a month for her to be able to tolerate one capsule of Allithiamine. She was sleeping more but not the whole night. That is when our functional doctor suggested supporting adrenals. That really helped but then she began having stomach pain and nausea after eating beef and developed frequent diarrhea. Chicken always increased her hunger and reduced her energy compared to beef and but now she was afraid of having beef. She stopped all sources of beef and phospholipids.

We consulted a very good functional doctor. She did Nutraeval and confirmed that all her B vitamins were low or deficient and recommended TUDCA and Calcium D Glucarate along with trying lamb and bison first. Both helped in reducing bloating/nausea and she was able to start eating lamb and bison along with reintroducing a minimal amount of carbs. Soon after, she was eating beef again with no pain.  After starting TUDCA, her bilirubin levels were normal for the first time in her life. We continued to work with the functional doctor to fix other deficiencies.

Recovery from Multiple Nutrient Deficiencies and the Prospect of a Normal Life

After Allithiamine and vitamin B2, we worked with our functional doctor to balance the remaining B vitamins. She is now able to go out in the sun without bothering her eyes and without passing out. She gained weight after starting the B vitamins and began looking healthier, compared to how skinny and underdeveloped she looked before. She also learned how to manage electrolytes. She sometimes needs more sodium, but other times needs more potassium. She feels sick when electrolytes get out of balance. Although she still had some continuous pressure in her head, she no longer needs any amitriptyline, aspirin, or Excedrin for pain. One thing that remained problematic was folate deficiency. She still became depressed with folinic acid, so she tried methylfolate instead. She felt so unmotivated that preferred not to have it, but she realized that it was key to something that she struggled with all her life: anxiety. She figured that she could have methylfolate every other day, so that she could have less anxiety.

Now, for the first time, she began to have a normal life. She can now exercise daily without dizziness and her heart rate skyrocketing.  Her heart rate in general is more normal, doesn’t go down to 29 or up to 205. She had not had any asthma requiring albuterol.  She started driving without having to deal with anxiety and panic attacks.  She was able to walk to her office without fainting.  She now can now live alone dealing with the stress of having a full-time job, graduate classes, cooking her food, and exercise every day! She is not cured completely but for a person that once thought she couldn’t have a future, she is doing pretty darned good!

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, and like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

This article was published originally on July 22, 2021. 

Unraveling Symptoms and Syndromes

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What Is a Syndrome?

A syndrome is the name given to a collection of symptoms and physical signs that have been observed in the past in a single patient or in a group of similar patients. This is often named after the first person to report this set of observations. It is called a syndrome when others have made the same observations, sometimes years later. The terminology is purely descriptive, even though there may be a constellation of abnormal laboratory tests associated with the clinical facts. Unfortunately, the underlying cause is seldom, if ever, known.

Chronic Fatigue Syndrome

Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME). In a review, it is described as a “challenge to physicians”. Its prevalence is reported as approximately 1% in the general German population. The author states that there are no convincing models that might explain the underlying cause as an independent unique disease. A variety of conditions such as chronic infectious disease, multiple sclerosis, endocrine disorders and psychosomatic disease are suggested in a differential diagnosis. There is said to be a significant overlap with major depression.

Another review describes CFS as characterized by debilitating fatigue that is not relieved with rest and is associated with physical symptoms. In order to make the diagnosis, these authors indicate that at least four of the following symptoms are required to make the diagnosis. They include feeling unwell after exertion, unrefreshing sleep, impaired memory or concentration, muscle pain, aching joints, sore throat, or new headaches. They also say that no pharmacologic or alternative medicine therapies have been proven effective.

Fibromyalgia Syndrome

According to the American College of Rheumatology, fibromyalgia syndrome (FMS) is a common health problem characterized by widespread pain and tenderness. Although chronic, there is a tendency for the pain to fluctuate in intensity and location around the body. Deficient understanding of its true cause gives rise to the false concept that it is neurotic. It is associated with chronic fatigue and patients often have sleep disorders. It is estimated that it affects 2 to 4% of the general population and is most common in women. It affects all ages and the causes are said to be unclear. FMS patients may require psychiatric therapy due to accompanying mental problems. Gonzalez and associates concluded that the combination of psychopathological negative emotionality, interpersonal isolation and low hedonic capacity that they found in a group of patients has implications for the daily living and treatment of these patients.

Regional Pain Syndrome

Complex regional pain syndrome (CRPS) is another common and disabling disorder, characterized by defective autonomic nervous system function and inflammatory features. It reportedly occurs acutely in about 7% of patients who have limb fractures, limb surgery, or other injuries, often quite minor. A small subset of patients progress to a chronic form in which autonomic features dominate. Allodynia (pain due to a stimulus that does not usually provoke pain) and hyperalgesia (increased pain from a stimulus that usually provokes pain) are features of CRPS and require a better understanding.

Sleep Apnea Syndrome

Apnea is the term used for a temporary cessation of automatic breathing that usually happens during the night. This syndrome is described as the most common organic disorder of excessive daytime somnolence. Its prevalence is highest among men age 40 to 65 years and may be as high as 8.5% or higher in this population. It is associated with cigarette smoking, use of alcohol and poor physical fitness.

Similar Cause with Different Manifestations

Complex Regional Pain Syndrome is related to microcirculation impairment associated with tissue hypoxia (lack of oxygen) in the affected limb. Without going into the complex details, hypoxia induces a genetic mechanism called hypoxia inducible factor (HIF-1 alpha) that has a causative association with CRPS. It has been found that inhibiting this factor produced an analgesic effect in a mouse model. The interesting thing about this is that thiamine deficiency does exactly the same thing because it induces biochemical effects similar to those produced by hypoxia (pseudo[false]hypoxia). A group of physicians in Italy have shown that high doses of thiamine produced an appreciable improvement in the symptoms of three female patients affected by fibromyalgia and are probably pursuing this research. Dietary interventions have been reported in seven clinical trials in which five reported improvement. There was variable improvement in associated fatigue, sleep quality, depression, anxiety and gastrointestinal symptoms.

Dr. Marrs and I have published a book that emphasizes deficient energy metabolism as a single cause of many, if not all, diseases. The symptomatic overlap in these so-called syndromes is generated by defective function of cellular metabolism in brain. Fatigue is the best symbol of energy deficiency and the English translation of the Chinese word beriberi is “I can’t, I can’t”. Fatigue is a leading symptom in beriberi. When physicians diagnose psychosomatic disease as “it’s all in your head”, they are of course, quite right. However, to imagine or conclude that the variable symptoms that accompany the leading one of fatigue are “imaginary” is practically an accusation of malingering. The brain is trying to tell its owner that it has not got the energy to perform normally and the physician should be able to recognize the problem by understanding the mechanism by which the symptoms are produced. Every thought, every emotion, every physical action, however small, requires the consumption of energy. Obviously we are considering variable degrees of deficiency from slight to moderate. The greater the deficiency the more serious is the manifestation of disease that follows. Death is a manifestation of deficiency that no longer permits life.

Our book is written primarily for physicians, but it is sufficiently lacking in technological language to encourage reading by patients. It emphasizes, by descriptions of case after case, the details of how genetic risk and failed brain energy are together unable to meet and adapt a person’s ability to meet the daily stresses of life. Stress, genetic risk and poor diet all go together. A whole chapter discusses the functions of the autonomic nervous system and how it deviates when the control mechanisms in the lower brain are defective. This system is the nervous channel that enables the brain to communicate the adaptive body actions necessary to meet living in an essentially hostile environment. We show that an excess of sugar and/or alcohol produce deficiency of vitamin B1 and the so-called psychosomatic disease that results is really early beriberi “I can’t, I can’t”. Variability in symptoms caused by this effect is because the cellular energy deficiency distribution varies from person to person and is affected by genetically determined differences.

This is illustrated by the case of a boy with eosinophilic esophagitis whose first eight years of life were marked by repeated diagnoses of psychosomatic disease. At the age of eight, upper endoscopy revealed the pathology in the esophagus. There was a family history of alcoholism and he was severely addicted to sugar. Many of his symptoms cleared with the administration of a thiamine derivative and resulted in a dramatic increase in stature. No pediatrician or other physician whose attendance was sought through those first 8 years evidently had ever questioned diet or the gross ingestion of sweets. They simply treated each condition as a confirmation that they were “psychological”.

It is worth noting that references 1 through 4 refer to both CFS and FMS syndromes being affected by psychological issues. This implies that the patient is “inventing” the poorly understood (and often bizarre) symptoms as a result of neurosis. The unfortunate complainant may easily become classified in the mind of the attendant physician as a “problem patient”. I have become aware that this can rise to such a degree of misunderstanding that the patient is denied access to the physician and even to other physicians in the same clinic. It is indeed about time that an overall revision be made to the absurd concept that the brain can “invent” a sensation that has no importance in solving the electrochemical problem. When we see the statistics of incidence of these common syndromes we have to conclude that there is an underlying cause and effect that pervades the general population. We are very conscious that our cars need the right fuel to work efficiently but rarely take it into consideration that the quality of food is our sole source of energy synthesis.

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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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This article was published originally December 2019. 

Hysterectomy’s Best Kept Secret: Figure Changes

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There are many misconceptions about the after effects of hysterectomy. There are a number of reasons for this. First and foremost, gynecologists are not honest with women. They present hysterectomy as merely the end of our ability to have children. A bonus is no more periods. Secondly, their professional society, ACOG, has a lot of influence on government and the media. Therefore, much of the information women find also misrepresents hysterectomy as benign. And last, but not least, most hysterectomized women fail to share the after effects. So it is no wonder secrecy abounds.

Over the years, I have written about many of the deleterious after effects of hysterectomy here, here, and here. Read the comments on any of these articles and see the thousands of women who have suffered. Among the least well recognized of these effects, however, are the figure changes that develop post-hysterectomy; changes that are related to both the anatomical effects of the surgery itself and the hormonal decline that ensues. Figure changes are hysterectomy’s best kept secret.

How Hysterectomy Changes a Woman’s Figure

How does hysterectomy change a woman’s figure? The “bands” (medically known as “ligaments”) that suspend the uterus are also the support structures for our midsection. They keep the spine, hips, and rib cage where they belong. The severing of these ligaments causes our entire torso to collapse. The hips widen, the spine collapses, and the rib cage drops onto the hip bones. This causes a shortened and thickened midsection, protruding belly, and a loss of the curve in our lower backs.

These unnatural changes lead to back and hip problems, loss of mobility, poor circulation in extremities, and chronic pain. Nerve injuries are another source of pain and loss of mobility. “Hysterectomy cripple” is a term from an old gynecology textbook that reverberates in my head. Two of my articles and readers’ comments on this best kept secret can be found here and here. Some women also talk about these changes here.

Other Harms of Hysterectomy

The uterus is essential for a woman’s whole life to keep her healthy. So are the ovaries. And the Fallopian tubes. We were not made to be disassembled. Studies prove it. Yet gynecologists continue to treat the female sex organs as disposable.

Although hysterectomy’s best kept secret is figure changes, there are a number of other harms. Hysterectomy’s effects on the bladder and bowel are explained here. Many women report sexual dysfunction including loss of desire. Feelings of emotional emptiness are common. So is chronic fatigue. Even the ovaries (vital endocrine glands) don’t escape unscathed. Their impaired function causes a whole other set of problems related to the diminished supply of vital hormones. For many, these life altering changes cause break-ups of romantic relationships and families. The effects can also end careers leading to financial hardship and shattered lives. The societal effects are far-reaching.

It is one thing to have cancer and have to live with these trade-offs. But over 90% of these surgeries are unnecessary since less than 8% are done for cancer.

Why Do We Not Know About the Figure Changes?

How can we not know that hysterectomy causes figure changes? Shouldn’t we have noticed this in women who had hysterectomies? Yes and no. Women gain an average of 25 lbs. in the first year after hysterectomy according to the HERS Foundation. That can certainly mask figure changes. Not only that, the torso collapses gradually so is not immediately discernible. And women tend to dress differently in an attempt to hide their altered figures. For women we didn’t know before their hysterectomies, we have no “before” view. Conversely, how much does any woman really critique other women’s bodies anyway? Not so much. Nor can we count on women to divulge these changes just as they fail to share other effects. Proof of this association does not require studies as it is evident from diagrams of the female anatomy. Hence, the reason hysterectomy’s best kept secret is figure changes.

So Much Despair

I had a hysterectomy 13 years ago at age 49. The effects were immediate and severe – physically, mentally, and emotionally. I never could have imagined that a person could age so quickly or feel that their very heart and soul were ripped out! You can read my story here. I quickly realized that my gynecologist of 20 years was dishonest about the consequences. And my medical records show that he also lied about my diagnosis and treatment options.

The changes to my figure amplify the despair that has plagued me since that fateful day. Like the author of the book Misinformed Consent, I cannot bear to look at myself in the mirror. And I shudder to think how much more height I will lose from my already small frame. Even more unsettling is the recent onset of hip and leg pain and midsection discomfort. I fear that reduced blood flow is causing my hip joint to deteriorate (known as “avascular necrosis” or “osteonecrosis”). I know some hysterectomized women who had hip replacements in their 40s or 50s for this reason. Great… more worries about my future health. The thought of any medical treatment, especially surgery, terrifies me!

The Harm of Female Organ Removal

There is long-standing evidence of the harms of female organ removal. Yet, nothing is being done to stop the abuse. It affects almost half of U.S. women. The states’ medical boards don’t care, and neither do legislators. Even women’s health organizations don’t care. Their platform is “reproductive choice.” I guess I was naive to think any of them would care. Then along came the #MeToo movement. I thought this was our opening to make our voices heard. But no. People don’t seem to view this as a form of sexual abuse or harassment. Evidently, perpetrators of surgical crimes against women get a free pass.

The ACOG works hard lobbying Congress and the media to keep it that way. One only need look at the Advocacy menu on their website. Hysterectomy is a big money maker. So maximizing these surgeries and denying the harm is in gynecologists’ best interest. The recent increase in resident minimum requirements from 70 hysterectomies to 85 is evidence of this. There is no training for myomectomy, or removal of fibroids, despite fibroids being a common reason for a hysterectomy. A gynecologist petitioned the ACOG to mandate myomectomy training, to make this uterine-sparing option more accessible. The ACOG rejected his petition. Clearly, the Ob/Gyn specialty puts profits before women’s health.

One has to question why insurance companies continue to authorize and pay for so many unwarranted hysterectomies. What documentation are gynecologists submitting to get these authorizations? My insurance company refused to divulge what my gynecologist submitted to get authorization. I had an ovarian cyst yet my medical records show authorization for a “hysterectomy.” There was absolutely nothing wrong with my uterus or other ovary as proven by pre-op imaging and post-op pathology. He should have removed only the cyst.

Protect Yourself

Don’t allow yourself to be deceived or bullied by a gynecologist. If you do go into an operating room, protect yourself. Modify the consent form to explicitly state what can and cannot be done and removed. Have the surgeon(s) sign off on all revisions.

You certainly don’t want to endure a hysterectomy’s figure changes or any of the other negative effects. The HERS Foundation and Ovaries for Life are good resources for understanding the lifelong importance of the female organs.

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, and like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

This article was published originally on June 13, 2019. 

Thiamine for Fibromyalgia, CFS/ME, Chronic Lyme, and SIBO-C

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The Road to Thiamine

In August 2020, I was at my wits end. I had developed gastroparesis in March 2020, after 10 days of metronidazole (Flagyl), for a H. Pylori infection and SIBO-C symptoms. After seven days, I developed the symptoms usually associated with the intake of this drug – nausea, confusion, anxiety, paranoid thinking and mild gastroparesis symptoms. I no longer had bowel movements initiated by my body and had to use enemas twice a week. This state continued and worsened until the end of July 2020, when I also had a surgery for stage 4 endometriosis.

I managed to stay alive those months by eating an elemental diet (90%) and a few bits of solid food such as white rice, goat cheese, or lean meat. After the surgery, however, my gastroparesis got worse. I contacted my family doctor at the end of August and told her that I could no longer eat any solid food without severe nausea and that I need to be in a hospital to be fed intravenously or with a gastric tube. She agreed that my situation demanded immediate attention and she wrote me the referral for an inpatient hospital admission.

I was lucky though that at that exact time, I stumbled upon the low oxalate diet mentioned by a member of a Facebook group. I joined the Trying Low Oxalate (TLO) group on Facebook and read what researcher Susan Owens wrote about oxalates. I started implementing it and realized that small portions of low oxalate food every 2-3 hours were accepted by my body. In a few weeks my gastroparesis symptoms were reduced and my belly pain diminished.

From the Low-Oxalate Diet to Discovering Beriberi Disease

At some point in September 2020, while researching oxalates, I found Elliot Overton’s videos on oxalates and I listened to them. I also read his articles on this website where he talks about allithiamine, a thiamine supplement that contains something called TTFD, as being something radically different in terms of its unparalleled effects on the human body. I was skeptical, because I had spent about 20,000 euro on supplements in the previous four years, each of them being promoted as health-inducing by big names in the field of chronic Lyme disease, MTHFR, CFS/ME, SIBO and so on, while their effects on my health were only partial and temporary at best.

I decided that this would be the last supplement I’d buy. The worse would be losing 40 euros and I had already spent too much on worthless treatments. I took 150 mg allithiamine + magnesium + B2 + B3 for 3 weeks and I was less tired, could move more around the house, and overall was feeling much better, even my extreme light sensitivity was subsiding. Then I stopped taking it, not sure it was doing anything. That’s when I knew that it had worked and that I needed it badly. I took the same dosage for another 2 weeks. The next three weeks I had to wait to receive it from the USA, and I was again completely bed ridden.

However, I used this time to read most of Dr. Derrick Lonsdale’s book on thiamine deficiency. I became convinced that I had dry beriberi and that most of my neurological symptoms were caused by thiamine deficiency. I also noticed that the dosage is highly individual and some individuals needed very high doses of thiamine per day in order to function.

I now understood, why 2015 was the year I became bedridden for most than 90% of the time: I spent 6 months in a very hot Asian country, as part of my master degree studies. The energy requirement to deal with the hot weather and the demanding job depleted my already low thiamine levels. At that time, I was on my way to diabetes as well. I had fasting blood sugar levels of 120 mg/dl. I could no longer assimilate/use carbs in the quantities my body required (70% of the daily caloric intake) and I was always hungry and always thirsty. Looking back on my childhood and my ever-declining health from 2008 onwards, it was clear to me that I had problems with thiamine.

The Astonishing Effects of Thiamine

In December 2020, I increased my thiamine dosage to 300 mg per day and I was astonished at the changes I experienced – an 80% reduction across all my symptoms and some even completely disappear.

Mid-January, I decided to increase my allithiamine dosage to 450-600 mg because I felt like my improvements were stagnating. I also noticed that during the days I was more physically active (meaning: I cooked food for longer that 10-15 minutes, my energy levels were higher when I was taking more allithiamine and I didn’t experience the typical post-exertional malaise I was used to in the past). I also noticed that taking allithiamine alone in high doses doesn’t work so well and that the active B complex capsules and the B3 I was taking did have an important part to play in how I felt.

In the beginning of February, I was craving sugars so badly, that I gave in and bought a cake for my birthday. I ate two slices and discovered that my mental confusion, the brain fog and generally poor cognitive skills improved “overnight”. I was astonished, since I had been led to believe that “carbs are bad”, “sugar is bad” and “gluten is bad” and that the problem was with the food itself rather than with my body missing some vital nutrients. I didn’t experience any side effects from the gluten either, even though my food intolerance test shows a mild reaction to gluten containing cereals.

By February 20th, this high-dose allithiamine ‘protocol’ and the ability to eat carbs again, eliminated all of my symptoms of SIBO-C/IBS-D/slow transit constipation, endometriosis, CFS/ME, fibromyalgia, constant complicated migraine with aura, severe food intolerances, including a reversal of my poor cognitive skills. I was able to discuss highly philosophical concepts again, for one hour, without suffering from headaches and insomnia.

Early Metabolic and Mitochondrial Myopathies

On February 21st, I decided to go for a walk. I walked in total that day 500 meters AND walked up four flights of stairs, because I live on the 4th floor without an elevator. By the end of that day, my disease returned and I became bedridden again. I could not believe it. This was the only thing I did differently. I just walked slowly.

And so I searched the internet for “genetic muscle disease”, because my sister shares the same pattern of symptoms. A new world opened before my eyes. I found out that in the medical literature, exercise intolerance, post-exertional malaise and chronic fatigue are well known facts and are described in conditions known as “myopathies”. That there are several causes for myopathy and that they can be acquired (vitamin D or B1 deficiency, toxic substances impacting the mitochondria, vaccines and so on) or inherited. It was also interesting to find out that while doctors manifestly despise and disbelieve CFS/ME symptoms, they are not utterly unknown and unheard of or the product of “sick” minds.

When I read this paper, although old and maybe not completely accurate in the diagnostics, I understood everything about my health issues.

I remembered my mother telling me that my pediatrician said he suspected muscular dystrophy when I was one years old, because I could not gain weight. I weighed only 7 kg at the age of one year, but he wasn’t convinced and so no tests were done in communist Romania. In addition to being overly thin, throughout my childhood, I always had this “limit” that I couldn’t go past when walking uphill or if I ran up a few flights of stairs, no matter how fit and in shape I was. Otherwise, I would develop muscle weakness such that my muscles felt like jelly. I would become completely out of breath, which I now know is air hunger. I couldn’t climb slightly steeper slopes without stopping 2/3 of the way up. My heart would beat very hard and very fast. I would feel like I was out of air and collapse. I first experienced this at the age of 5-6 and these symptoms have been the main feature of my physical distress since.

Because of these symptoms, I have led a predominantly sedentary lifestyle with occasional physical activity, never daily, apart from sitting in a chair at school. I didn’t play with classmates for more than 5 minutes. I couldn’t participate in physical education classes. Any prolonged daily physical activity led to general weakness, muscle cramps, prolonged muscle “fever”, and so I avoided them.

Now, I know why. Since reading this article, I was able to present my entire medical history to a neurologist and my symptoms were instantly recognized as those of an inherited mitochondrial or metabolic myopathy. I am currently waiting for the results of the genetic tests ordered by the neurologist, which will make it possible to get the right types of treatments when in a medical setting.

Before Thiamine: A Long History of Unexplained Health Issues

In addition to the problems with gaining weight and inability to be active, I had enuresis until 9 years old, along with frequent dental infections, and otitis. I had pain in my throat every winter, all winter and low blood pressure all the time. At 14 years of age, I weighed about 43-45 kg. I remained at that weight until age 27. I had a skeletal appearance. I also had, and continue to have, very flexible joints. For example, my right thumb is stuck at 90 degrees, which I have to press in the middle to release. I can feel the bone repositioning and going into the joint. This happens at least once a week.

My diet was ovo-lacto-vegetarian diet, with 70% of the calories coming from carbohydrates from when I was able to eat until 2015. In 2015, I could no longer process carbohydrate due to severe thiamine deficiency.

Since the age of 18, I have had quasi-constant back pain in the thoracic area. I have stretch marks on thighs, but have had no sudden weight gain/loss. Among the various diagnoses I had received before the age of 18 years old:

  • Idiopathic scoliosis – age 18. No treatment.
  • Iron deficiency anemia – at 18. Treatment with iron-containing supplements. No result.
  • Frequent treatments for infections (antibiotics)
  • Fasting hypoglycemia (until 2015).

The Fibromyalgia Pit

In 2008, my “fibromyalgia” symptoms began, although looking back at my history, many of these symptoms were there all along. I made a big change in my physical activity levels and this began my 12 year decline in health. In 2008, I started my philosophy studies at the university and decided to get more “in shape” by walking daily to and from the university. A total of 6 km per day.

  • Constant fatigue, no energy.
  • Worsened back pain.
  • Weak leg muscles at the end of the day.
  • Frequent nightmares from which I could never wake up. I felt like I couldn’t find my way out of sleep. After waking up, I would sit down and after 10 minutes I found that my head had fallen on my chest and I had fallen asleep involuntarily, suddenly.
  • Sensations of waves of vibrations passing through me from head to toe, followed by the sensation of violent “coming out” of the body and out-of-body experiences.
  • Heightened menstrual symptoms.
  • Fairly frequent headaches.

Over the summer, I recovered completely as I resumed my predominantly sedentary lifestyle. Then, in the fall, I began walking to and from university again, and my symptoms just got worse. This cycle continued for the next few years. My symptom list expanded to include:

  • Migrating joint pains.
  • Frequent knee tendinitis.
  • Pain in the heels.
  • Generalized pain, muscles, joints, bones.
  • Frequent headaches.
  • Sleep disturbance with insomnia beginning at 2-3am every night.
  • Frequent thirst, increased water intake (3-4 l/day).
  • Frequent urination, especially at night (woken 2-3 times).
  • Bumping my hands on doors/door frames.
  • Unstable ankles.
  • Painful “dry” rubbing sensation in hip/femur joint.
  • Prolonged angry spells.
  • Memory problems (gaps).
  • Difficulty learning new languages.

I underwent a number of tests including, blood tests, X-ray + MRI of the spine, and a neurological consultation. All that came back was high cholesterol (180 LDL, 60 HDL), low calcium, iron deficiency anemia, scoliosis, and hypoglycemia. No treatment was offered.

From February 2010-August 2010 I had a scholarship in Portugal. Philology studies interrupted. I was using public transport to go to classes, which were about only 3 hours a day. I required bed rest outside classes with only the occasional walk. I had a complete remission of all symptoms in July 2010 when I returned home and resumed my sedentary lifestyle. This was the last complete remission.

From August 2010 – December 2010, I resumed day courses at both universities and resumed the walking.

All of my symptoms were aggravated enough that by December I was bedridden. I stopped attending classes due to back pain in sitting position. I wrote two dissertations lying in bed. Once again, I sought medical advice and had a number of tests and consultations with specialists. I was diagnosed with peripheral polyneuropathy and “stress intolerance”, fibromyalgia. The treatment offered included:

  • Medical gymnastics: aerobics, yoga and meditation presumably to get me in shape and calm me down.
  • Calcium and iron supplementation, gabapentin, and low-dose mirtazapine.

The physical activity worsened symptoms, as it always does. The mirtazapine improved my sleep. I took it for 2 weeks and then stopped because I was gaining weight extremely fast.

From 2011 – October 2012, I was almost completely bedridden. I had to take a year off because I couldn’t learn anything, my head hurt if I tried.  The physical symptoms improved after about a year, as did the deep and total fatigue. I tried to get my driver’s license in 2012, but failed. I couldn’t remember the maneuvers and the order in which to perform them. I couldn’t concentrate consistently on what was happening on the road. There was too much information to process very quickly.

From 2012-2015, I was getting my master’s in France. This aggravated all of my symptoms of exertion, both physical and intellectual. In 2013, I underwent general anesthesia for a laparoscopic surgery due to endometriosis, after which something changed in my body and I never fully recovered to previous levels of health. I took another year break between the two years of master’s studies. I couldn’t learn anymore. Symptoms relieved a bit by this break. After three months in Thailand for a mandatory internship, in one of the most polluted cities in the world, I got sick and developed persistent headache, with very severe cognitive difficulties. At this point, 90% of my time was spent in bed.

A general anesthetic in the autumn of 2015 for a nose tumor biopsy was the “coup de grâce”. Since then, I only partially recovered a few hours after a fluid infusion in the emergency ward and a magnesium infusion during a hospital stay in Charites Berlin in 2016. Other improvements: daily infusions of 1-2 hours with vitamins or ceftriaxone.

How I Feel Since Discovering Thiamine

In order to recover from the crash I experienced in February, I increased my B1 (TTFD) intake mid-March and made sure I was eating carbs every three hours, including during the night. I need about 70% of my total caloric intake to come from carbs.

I am currently taking 1200 mg B1 as TTFD, divided in 4 doses, 600-1200 mg magnesium, 500 mg B2/riboflavin, 3 capsules of an active, methylated B vitamin complex, 80-200 mg Nicotinamide 3X per day and 1-2 capsules of a multi-mineral and a multi-vitamin. I make sure I eat enough proteins, especially from pork meat, because it contains high amounts of BCAAs and helps me rebuild muscles.

I walked again the last week of April 2021, 500m in one day, because of a doctor’s appointment. I did not experience a crash that day or the following days. I did not have to spend weeks recovering from very light physical activity.

I can now use my eye muscles again, and read or talk with people online. I can cook one hour every day without worsening my condition.

After 5 years of constant insomnia, only slightly and temporarily alleviated by supplements, I can finally sleep 7.5 hours every night again. I no longer wake up 4-5 times a night.

My wounds are healing and my skin is no longer extremely dry and cracked.

My endometriosis, SIBO-C, gastroparesis, food intolerances, “fibromyalgia” pain, muscle pain due to hypermobility, are all gone.

And to think that all of this was possible because of vitamin B1 or thiamine, in the form of TTFD and that I almost didn’t buy it, because I no longer believed in that ONE supplement that would help me!

I will always be grateful for the work Dr. Derrick Lonsdale, MD, researcher Chandler Marrs, PhD and Elliot Overton, Dip CNM CFMP, have done so far in understanding, treating and educating others about chronic illnesses. More than anything, more than any physical improvement I experienced so far thanks to their work, what I gained was truth. Truth about a missing link, multiple diseases being present at one time and about why I have been sick my entire life.

Physical Symptoms and Diagnoses Prior to Taking Thiamine

  • Fibromyalgia and polyneuropathy diagnostic and mild, intermittent IBS-C since 2010;
  • Endometriosis symptoms aggravating every year, two surgeries, stage 4 endometriosis in 2020;
  • Surgeries under general anesthesia severely worsened my illness and set my energy levels even lower than they were before;
  • CFS/ME symptoms, hyperglycemia/pre-diabetes, constant 2-3 hours of insomnia per night and constant 24/7 headache since 2015, following an infection and during my stay in a very hot climate;
  • POTS, Dysautonomia, Post Exertional Malaise Symptoms from minor activities, starting with 2016;
  • Increased food intolerances (gluten, dairy, sugar/sweets, histamine, FODMAPs, oxalates, Sulphur-rich foods), to the point of eating only 6 foods since 2018;
  • Chronic Lyme disease diagnostic based on positive ELISA and WB test for IgM, three months in a row, in 2017;
  • Weight gain and inability to lose weight after heavy antibiotic treatment, skin dryness, cracking, wounds not healing even for 1.5 years, intolerance to B vitamins and hormonal preparations, since 2017;
  • Complicated migraine symptoms and aura, light intolerance, SIBO-C and IBS-D, slow intestinal transit, following a 4 month period of intermittent fasting that made me lose 14 kg, living in bed with a sleep mask on my eyes 24/7, severe muscle weakness, since 2018;
  • Two weeks recovery time after taking a 10 minute shower;
  • Gastroparesis, living on an elemental diet, in 2020;
  • All my symptoms worsened monthly, before and during my period.

Treatments Tried Prior to Thiamine

Gluten, dairy, sugar/sweets, FODMAPs, histamine, oxalate, Sulphur-rich foods/supplements free diets; AIP, SCD, Wahl’s protocol, candida diets; high dose I.V. vitamins and antibiotics, oral vitamins and antibiotics, liver supplements and herbs, natural antibiotics (S. Buhner’s protocol), MTHFR supplements, alkalizing diet, essential oils, MCAS/MCAD treatment, SIBO/dysbiosis diets and protocols, insomnia supplements, and any other combination of supplements touted as helpful for such symptoms.

And this is just what I remember top of my head. Their effect was, at best: preventing further deterioration of my body, but healing was not present.

Additional Literature

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 by Gordon Johnson from Pixabay.

This case story was published originally on May 11, 2021. 

Recovering From Medically Induced Chronic Illness

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Unexplained or Medically Induced Chronic Illness?

“Unexplained.”  That’s what doctors say about chronic illness. Conventional medicine says, ‘learn to live with it.’ Rather than offer a true treatment or cure for these debilitating conditions, they suppress the immune system and offer more drugs for depression and anxiety – none of which are effective. I’m here to tell you that common wisdom is wrong. I know, because my own lucky story proves we can heal from chronic illness. Pharmaceutical insults created my disabling illnesses  – Chronic Fatigue, Fibromyalgia, estrogen dominance, adrenal fatigue, POTS, Graves’ Disease, Hashimoto’s, Bell’s Palsy, infertility and more. I share my journey to offer hope. The doctors were wrong. I have recovered and am once again, healthy.

Early Clues and Pharmaceutical Insults

My childhood had some clues – things I now know predict chronic illness. My lymph glands swelled when I was otherwise healthy. Mosquito bites turned into angry 3” welts. Childhood bunions and hyper-mobile joints suggested leaky gut. All these issues correlate with chronic illness and, seen in hindsight, hint at the difficulties that awaited me in adulthood.

My immune system may have been awry from the start, but pharmaceuticals tipped the scale toward chronic illness. As a teen, I took birth control pills for heavy periods and cramps. When vague symptoms appeared in my early twenties, I asked about pill side effects. The gynecologist laughed at the idea, but I trusted my gut and finally stopped the pill. I felt better in some ways but developed new symptoms.  Sleep became difficult. I was hypersensitive to noise and light and struggled with unquenchable thirst.  The doctor suggested my extreme thirst stemmed from hot weather and salty foods. This explanation didn’t add up to me, but I was young and so was the internet. I had no resources to connect the dots. Today, I recognize that 10 years of hormonal birth control created nutrient deficiencies (folic acid, vitamins B2, B6, B12, C, and E, along with magnesium, selenium and zinc) while also raising my risk for future autoimmune disease.

Recurrent UTIs, Fluoroquinolones, and New Onset Graves’ Disease

A few years later, recurrent urinary tract infections led to many doses of the fluoroquinolone antibiotic, Cipro. Cipro now carries a black box warning and is known to induce mitochondrial damage. My mid twenties also brought pre and post-menstrual spotting and bleeding for 10 days each month. Doctors did nothing for my hormonal imbalance but diagnosed Graves’ disease (hyperthyroidism). Everything about me sped up. Food went right through my system. I was moody. My mind was manic at times. I was unable to rest and yet physically exhausted from a constantly racing heart.

The doctor said Graves’ disease was easy – just destroy the thyroid and take hormone replacement pills for the rest of my life. I didn’t have a medical degree, but this treatment (RAI, radiation to kill the thyroid) just didn’t make sense. Graves’ disease is not thyroid disease. It is autoimmune dysfunction, where antibodies overstimulate a helpless thyroid.

As I studied my options, I learned that RAI could exacerbate autoimmune illness and many patients feel worse after treatment. It was surprising to find that the US was the only Western country to recommend RAI for women of childbearing age. Armed with this knowledge, I declined RAI and opted for medication. The endocrinologist mocked my decision. I was in my 20s and standing up to him was hard, but it marked a turning point and spurred me to take responsibility for my own health, rather than blindly trusting doctors. Recent reports suggest RAI treatment increases future cancer risks. My Graves’ disease eventually stabilized on medication, although I never felt really well. I pushed for answers for my continued illness, but doctors refused to test my sex or adrenal hormones.

IVF and More Damage to My Health

Things turned south again when I was unable to conceive. The supposed best fertility clinic in Washington, DC could not find a cause for my infertility. I’ll save that story for another day, but the short version involved a few years of torment and four failed IVF attempts. The fertility drugs and the stress worsened my overall health considerably.

Our last try at pregnancy was with a specialist who practiced functional medicine. Labs and charting uncovered a clear progesterone imbalance, and also explained my spotting. This simple diagnosis was completely missed by the conventional fertility clinic. A brief trial of progesterone cream resulted in two naturally conceived, healthy pregnancies. Isn’t it remarkable that several years and over $100,000 failed to produce a baby with IVF and $20 of progesterone cream on my wrist did the trick? This could be a cautionary tale about profit motive in modern medicine, but that, too, is a topic for another day.

Years of Conventional Medicine: Thyroid Damage, Autonomic Dysfunction, and Profound Fatigue

I weaned off thyroid medications and felt fairly well after my babies, but my system took a big hit when life brought an international relocation. The move was intensely stressful and my health sunk after we landed half a world away. I had no energy, gained weight, and lived in a fog. The tropical heat and humidity of Southeast Asia felt like a personalized form of torture.

Perhaps the stress of our move left me vulnerable to the reappearance of autoimmune and adrenal dysfunction, as my next diagnosis was Hashimoto’s Disease and adrenal fatigue. Doctors ordered functional medicine tests (hair, organic acids, stool, saliva cortisol and hormones) that identified nutrient imbalances, but their treatment ideas fell short. Despite replacement hormones and supplements by the handful, I remained very sick, with profound exhaustion, brain fog, sleep disruption, pain, and terribly imbalanced sex hormones.

Taking Matters Into My Own Hands

If setbacks have a bright side, it is in the drive to get better. I started studying when my doctors ran out of ideas to treat my illness. Fibromyalgia was the best description of my pain, but I knew conventional medicine offered no help for this condition. I dug into the topic and found the work of Dr. John C. Lowe, who used T3 thyroid hormone for fibromyalgia, and Paul Robinson, creator of CT3M, the circadian method for using T3. CT3M and high daily dose of progesterone cream improved my quality of life in the short term. Near daily bleeding eventually regulated back into a normal cycle and my adrenal function improved greatly.

Postural Orthostatic Tachycardia Syndrome (POTS) was the next bump, bringing a very high heart rate, very low blood pressure, heat intolerance, and extreme sweating on the lightest activity. By this time, I didn’t even ask the doctor for help. My research pointed to salt and potassium, and so I drank the adrenal cocktail and salt water daily. POTS symptoms vanished quickly with this easy strategy, as did the nocturnal polyuria that plagued me for many years.

I steadied after this time. I was not well but functional, despite some major life stressors, including another international move and a child’s health crisis. Even though I managed the daily basics, things like house guests, travel, or anything physically taxing required several days to a week of recuperation.

The Next Step: Addressing Nutrient Deficiencies

The next step in my recovery came thanks to a B12 protocol that includes co-factor nutrients, developed by Dr. Gregory Russell-Jones. Addressing the deficiencies connected to B12 helped and things progressed well until I had a disastrous reaction after eating mussels, which I hoped would raise iron levels. I vomited for hours and stayed in bed for days. I kept up the B12 protocol, but just couldn’t recover. Largely bedridden, and napping 4 hours at a stretch, I got up in the evening only to drive to a restaurant dinner, too exhausted to prepare food or deal with dishes.

Debilitating exhaustion lasted for a month, and then two, with no relief. It was an awful time, but hitting rock bottom proved a blessing in disguise, as desperation turned me back to research. Slowly, I pushed through brain fog and started to review studies on chronic fatigue and fibromyalgia. This led me to a promising Italian study using thiamine for these conditions.

Studying thiamine, it seemed plausible that the allergic reaction to mussels drained my B1 reserves, making it impossible to recover. Inspired by the research, I started on plain B1 at very high doses. To my surprise, I felt better right away. The first dose boosted my energy and mental clarity.

I continued to learn about B1’s benefits, thanks to this website and the text by Drs. Marrs and Lonsdale.  Two weeks went by and thiamine HCL seemed less effective, so I switched to lipothiamine and allithiamine, the forms recommended in Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition. WOW. What a difference! Virtually overnight, my gears began to turn, and I felt better with each new day. In a single month, I went from bedridden to functioning well 2 out of every 3 days. I had ideas, I had energy, and I could DO things. The setback days were mild and disappeared entirely after 2 months on thiamine.

At the 2 month mark, I had to travel for a family emergency. My pre-thiamine self would have needed at least a week of rest following this kind of trip, and I expected pain and fatigue as I stepped off the plane. But to my great surprise, I felt well! I remember walking through the airport late that evening and thinking it felt amazing to stretch my legs. Maybe that sounds like an ordinary feeling, but years of chronic fatigue and fibromyalgia conditioned my body to stop, to sit, whenever possible. It was entirely novel to FEEL GOOD while moving! The next day came and I did not collapse, I did not require days to recover and was able to carry on like a normal person. It was a remarkable change in an unbelievably short time.

Recovery From Conventional Medicine’s Ills Came Down to Thiamine

Getting better feels miraculous, but it’s not. The real credit for my recovery goes to experts like Dr. Marrs and Dr. Lonsdale who spread the word about thiamine. Despite years of illness and dead ends, I believed I could heal and I kept trying. Tenacity eventually paid off when posts on this site helped connect the dots between my symptoms and thiamine deficiency. More than anything, my recovery is a story of tremendous luck, as I finally landed upon the single nutrient my body needed most.

The difference between my “before thiamine” and “after thiamine” self is beyond what I can describe.  Birth control, Cipro, and Lupron created nutrient imbalances and damaged my mitochondria, leading to multiple forms of chronic illness in the years between my 20s and 40s. Replacing thiamine made recovery possible by providing the fuel my damaged cells so badly needed. At this writing, I am 7 months into high dose thiamine and continue to improve. I have not experienced any form of setback, regardless the stressors. My energy feels close to normal, the pain is resolving, and brain fog is a thing of the past. My sense of humor, creativity and mental functioning are all on the upswing. I owe thanks to the real scientists who dare to challenge wrong-headed ideas of conventional medicine, and who provide hope for these so-called hopeless conditions. My wish is that this story will do the same for someone else.

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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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Hysterectomy Experiences: Chronic Fatigue

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A few years ago, I began writing for Hormones Matter about the gross overuse and adverse effects of hysterectomy and oophorectomy. Year after year, these posts generate tens of thousands of views and hundreds of comments. The comments inevitably follow the same pattern of unwarranted removal of organ(s) without informed consent and ensuing declining health. We are publishing a series of articles highlighting women’s comments. This is the fifth of the series and addresses the common complaint of chronic fatigue. The first article is about lack of informed consent and can be found here. The second one talks about how our “exterior” settles / collapses after the uterus is removed. The third addresses organ dysfunction and the fourth is about loss of sexuality and emotional emptiness. Although the 90% elective rate of these surgeries would imply that they are “restorative” or at least harmless, medical literature and women’s experiences prove otherwise.

Chronic Fatigue and Loss of Stamina

Many women commented on my other articles about chronic fatigue and loss of stamina and vibrancy since their hysterectomies even if they still had their ovaries. Although sleep problems were a common complaint, even absent those, women just couldn’t seem to get past the chronic fatigue and lack of stamina. These experiences match those of the majority of 1,000 hysterectomized women surveyed by the non-profit HERS Foundation. Those results are as follows:

  • Loss of energy:  78%
  • Profound fatigue: 77%
  • Loss of stamina: 69%
  • Insomnia: 61%
  • Unable to maintain previous level of activity in home: 34%

The complete list broken out by hysterectomy only, hysterectomy with one ovary removed, and hysterectomy with both ovaries removed can be found here. Below are comments from some of my articles.

Chris (age 64) says:

“My husband and I had and unbelievable sex life, I had loads of energy and strength and was able to joke about being “37”. I now feel like and old woman. I want to sleep more then move, I have little strength….”

Jacqueline:

“I have no energy at 38. I have more problems now than I did before surgery.”

NJ:

“The Testim has helped my energy levels but I have lowered the dose as my body hair increased.”

Joshua:

“…my finance had a cervical hysterectomy [sic] back in January of this year and she seems to be having issues with mood swings sex drive depression and fatigue.”

BeBe:

“My hysterectomy was necessary due to Essure permanent birth control. One migrated to my uterus and I was sick from that poison…. I’m 11 months post op…. I’m fatigued. Have migraines and have become very anti social.”

Joan:

“I was a very active women, always running around from 6am till 9pm…. I am tired all the time.”

Teresa:

“I’m 12 years post op…. I stay fatigued and have no sexual drive and depression….”

Sue:

“Hysterectomy [sic] in 2007…. Severe fatigue, bloating, pain under rib. No answers…. My life has been horrible since.”

Jill:

“…my energy levels have dropped too.”

Jen:

“I had TAH kept my ovaries (boy, that was a battle)…. I have had so many problems since…. I truly feel awful. My energy levels are just depleted. I’m dealing with idiot doctors rift now plus I am too tired to go to all these specialists…. I also have severe rib pain right and left. I have bowel problems too and the nausea and fatigue is hell.”

Irene:

“Ever since HYSTERECTOMY my whole personality has changed, gone from an outgoing lady to a hermit rarely interested in socialising and I have little energy and gone from 60kg to 70kg.”

Annele:

“Had my surgery in 2010, compared to photos of me and my energy levels, sex live, I have aged about 10 years in a 5 year period. My mother also went for her hysterectomy during 2012, she experienced similar side effects.”

Sharon:

“I can hardly get out of bed. I have no appetite, no energy, and I feel awful.”

Elaine:

“I ache constantly, I still get intense flashes and my energy level has gone from active (pre-surgery) to minimal…..I am so sleep deprived and so sore….I feel I was not thoroughly informed and this surgery was the biggest mistake! I cry and yearn for who I was a year ago.”

Julie:

“Ever since surgery I had so much pain, discomfort, fatigue, and now depression. I used to be real busy with my family going outdoors for hunts, fishing and picnics. Now days I just barely do anything and my whole life has changed. My health has just been going down.”

Lyn:

“After 3 months post surgery, I had to retire my full time profession as a licensed therapeutic massage therapist due to fatigue, lower back, sacroiliac joint, hip, leg and foot pain!… My balance has been compromised and have had (4) falls since surgery…. I use to enjoy my walks with my dog and make attempts daily, but I become winded and fatigued almost instantly….”

Sue:

“My health just continues to decline. I was the most active person before this surgery, now I do nothing most days. I’m very concerned about my bowel issue and the relentless fatigue.”

Angela:

“I saw my mother destroyed by a hysterectomy at 38. This has been going on for decades and the denial has to stop. Women don’t even have to tell me they’ve had one. I can see it – in their faces, their hair, their figures, their lack of vitality.”

Jacqualine:

“take ambien to sleep”

Marlo:

“I can’t sleep at night.”

KA:

“taking a sleep aide”

Rebecca:

“Can’t sleep, wake up with headaches every day. Having major sweats, Loosing my hair and my mind!”

I caution any woman who is told she needs a hysterectomy and/or oophorectomy or is considering one to heed these comments. With the gross overuse of these surgeries, chances are she’s being sold a false bill of goods. It’s not always a good idea to rely solely on your doctor’s advice as Someone

Who Cares cautions:

“After 40 years of enduring this “disabled” existence, it breaks my heart that no matter how many of us try to warn other women, in various ways, the number of these destructive surgeries continues to increase, not decrease.”

A complete list of my articles can be found here. The HERS Foundation is a good resource for understanding the lifelong functions of the female organs. It also has information about gynecologic conditions and treatment options. These two sites, Gyn Reform (especially the studies/citations link) and Ovaries for Life, are excellent resources about the gross overuse and harm of ovary removal or hysterectomy induced loss of ovarian function.

Share your Story

If you have a hysterectomy story, please consider sharing it on Hormones Matter.

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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This article was first published in April 2017.

Thiamine and Riboflavin for Chronic Fatigue

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From its title, Mitochondrial Myopathy in Follow-up of a Patient With Chronic Fatigue Syndrome, I doubt anyone would ascertain the importance of this case study, but a quick read of even just the abstract tells an entirely different story. A deeper dive into the full article reveals just how remarkable this case really is. A more appropriate title might have been: Treatment Refractory Chronic Fatigue Syndrome Resolved with Vitamins.

The Case

Here was young man (30 years old) who, six months after surviving infective endocarditis of the native valve that necessitated, not only the use of some pretty powerful antibiotics, but also, an aortic valve replacement and oral anticoagulation therapy, developed profound and unremitting fatigue. Several years and conventional treatments later, physicians considered the mitochondria and the prospect that mitochondrial damage might be behind the fatigue and other symptoms. Mitochondrial testing ensued and upon confirmation, treatment with vitamins, 300mg of thiamine (vitamin B1) and 300mg of riboflavin (vitamin b2) commenced. Within a month, there was significant improvement that was maintained at the five year followup. Effectively, vitamins treated what medicine could not.

The case study is remarkable for a number of reasons, some positive and but most negative. The fact that his physicians went outside of the parameters of conventional, pharmaceutical medicine to the mitochondria is fantastic. Unfortunately, it took three years and multiple, essentially useless medications before looking at the mitochondria and supporting mitochondrial function with nutrients. Had the nutrient requirements to support the mitochondria been considered initially, the patient would not have had to endure a long and progressive decline of health.

Chronic Fatigue and the Mitochondria: An Exercise in Missed Opportunities

Chronic fatigue syndrome (CFS) also called myalgic encephalomyelitis (ME) has become an increasingly common catchall diagnosis for any disease process in which profound and unremitting fatigue is a core component. Symptoms may also include: muscle pain and weakness, autonomic dysfunction, cognitive disturbances and a host of other seemingly unrelated issues. The fatigue is debilitating, persistent and does not resolve with sleep. In this particular case, the patient’s symptoms included:

  • longstanding fatigue that did not improve with sleep
  • impairment in short-term memory and concentration
  • headache behind the eyes and in the back of the head
  • post-exertional malaise that lasted more than 24 hours
  • dry eyes
  • slow digestion with postprandial fullness
  • Raynaud’s phenomenon in the coldest winter months

Conventional medicine has no answers for CFS/ME and treatment protocols generally range from psychotropic medications, pain killers, and the like, to cognitive behavioral and exercise treatments. When the symptoms persist and worsen, more medications are piled on. This was the case here.

“He was treated for 1 year with cognitive behavioral therapy, graded exercise therapy, and antidepressants, finding very slight improvement, and the headache did not respond to triptans or ergot alkaloids and responded only partially to nonsteroidal anti-inflammatory drugs.”

Upon each subsequent followup, his symptoms continued to worsen.

“…at the end of the second year, the patient reported feeling more tired, lack of energy, exhausted, with heaviness in the arms and legs, muscle pain, and proximal muscle weakness became more evident throughout the day, and even more after exercise often accompanied by muscle cramps.

About 6 months later, the patient began to feel tingling in the feet, and then in the hands and sometimes burning sensation, along with a sense of restless legs.

In the middle of the third year, these symptoms were more evident and the patient also complained of dry eyes, dry mouth, orthostatic intolerance, intestinal motility disorder with very annoying abdominal bloating, and with persistence of slow digestion with postprandial fullness.”

Routine blood tests were negative across all time points, including a few nutrient tests (vitamin D, folic acid, vitamin B6, and vitamin B12). Unfortunately, no detailed information about the nutrient assays or values were provided.

At three years, a tilt table test was performed and the results showed postural hypotension. At this point, his physicians suspected mitochondrial issues and ordered a muscle biopsy. The biopsy confirmed their suspicions and revealed deficiencies in respiratory complexes 1 and 4. The patient was then started on high dose thiamine and riboflavin, which effectively ameliorated most of his symptoms within a month. The neuropathy persisted and was treated with pregabalin. Five years later, he was still recovered.

Clues for Recognizing Mitochondrial Distress

Reading this case, I am both heartened and frustrated. I am heartened that these physicians continued to pursue options even three years out. Most patients with chronic fatigue languish indefinitely. I am also encouraged that they took the effort to not only followup at five years, but also, to publish the case study. It is infrequent that these cases are published. I am frustrated, however, that it took so long to recognize what should have been obvious immediately, and if not obvious, at least automatically ruled out as part good medical care. In this case, there were significant clues from the onset that mitochondrial issues were present.

Firstly, fatigue is the cardinal symptom of mitochondrial distress. There is no clearer symptom of mitochondrial distress than profound and unremitting fatigue. The primary responsibility of mitochondria is to produce cellular energy. When they cannot produce sufficient cellular energy, resources are reallocated to survival functions. All other functions become less important and fatigue envelops the person. Fatigue is a mitochondrial survival mechanism. Fatigue tells us that the mitochondria are struggling. It does not tell us why, but it does tell us that there is something causing distress and that there is insufficient energy to resolve the problem.

Secondly, when there are a multitude of seemingly unrelated symptoms, the easiest consideration is mitochondrial distress. Mitochondrial disorders are marked by their variability. Because the mitochondria supply energy and maintain survival functions for the entirety of the organism, for every tissue and organ, when they are distressed, symptoms appear all over the body including the brain and the autonomic system. Again, this is an easy clue to recognize if one is looking. Whenever someone has a wide variety of seemingly disparate and difficult to diagnose symptoms, symptoms that may wax and wane, think mitochondria.

Finally, and perhaps the easiest clue to recognize, this young man underwent a significant trauma just six months prior to the onset of the fatigue. This sort of trauma necessitated not only huge amounts of energy to maintain the requisite inflammatory and immune responses enacted for survival but it required a cocktail of mitochondrially damaging medications as well. Even if he did not have genetic predispositions to mitochondrial disease, the trauma itself, absent proper nutrient support, would initiate mitochondria-damaging cascades. So although he had markers for mitochondrial disease, they were likely to some degree latent, but fully fomented by the trauma of the illness. This was a clue. One that should have initiated some digging. It did not.

Treating Distressed Mitochondria

The most successful treatments for mitochondria, even genetically impaired mitochondria involve supplemented nutrients and dietary modification. The primary objective is to supply maximal energy to organs and tissues and reduce energy losses. This can only be achieved via food and nutrient supplements. Therefore, before beginning a patient on essentially useless and potentially damaging medications (virtually all, if not all medications damage the mitochondria), would not it be more prudent to ascertain if the patient is getting sufficient mitochondrial nutrients and supplement accordingly? It would be. Not only that, if we assessed mitochondrial health and by association nutrient intake and capacity it would save the patient years of suffering and potentially prevent the more permanent symptoms like neuropathy.

Why thiamine and riboflavin?  Both are critical to mitochondrial function. Thiamine dependent enzymes sit atop every entry entry point to, and at various junctions throughout, the Krebs (citric acid, tricarboxylic acid) cycle. Without thiamine, everything about the production of cellular energy (ATP), grinds to a halt. Fatigue, is just the tip of the iceberg with insufficient thiamine. Similarly, riboflavin is critical for a number of enzymes within the mitochondria and to the transport of electrons throughout the cycle. Together those two nutrients, plus about 20 others, are necessary for proper mitochondrial function. Without these nutrients, no medication will boost mitochondrial energy production.

For more information about mitochondrial nutrients, see Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition and/or search mitochondria or thiamine on this blog.

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.