symptoms

What If We Are Wrong? Medication, Medical Science and Infallibility

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What if we are wrong? Such a simple question, but one that seems all but absent in modern medicine. Patients, particularly women, routinely present with chronic, treatment refractory, undiagnosed or misdiagnosed conditions. More often than not, the persistence of the symptoms is disregarded as being somehow caused by the patient herself. If the tests come back negative and the symptoms persist, then it is not the tests that are insensitive or incorrect but the patient. If the medication prescribed does not work or elicits ill-understood side effects, then somehow the patient is at fault. If the patient stops taking the medication because of said side-effects, then they are labeled non-compliant and difficult. The patient is always at fault. It is never the test, the disease model, or the treatment.

What if we are wrong? What if the tests to diagnose a particular condition are based on incorrect or incomplete disease models? What if a medication universally prescribed for a given condition doesn’t work or creates adverse reactions in certain populations of people? What if the side-effects listed are incomplete? Is it so difficult to admit that gold standards evolve or that medical science is fluid? Certainly, if a patient is presenting with a constellation of symptoms that create suffering and those symptoms do not remit with a given medication or medications and/or do not appear on the available diagnostic tests, why is it so difficult to consider that either the medication doesn’t work, the diagnostic was insufficient, or the diagnosis itself was incorrect? Why is it that we assume it must be a mental health issue or somehow the patient is causing the symptoms herself?

Here, one doctor tells how he learned that he was wrong about diabetes and metabolic disorder. He gleaned this not from a book or from his training and not from listening to his patients, but when he, a previously healthy young man, developed a metabolic syndrome that led to obesity and type 2 diabetes. It was by his own personal crisis that he began to question the model of diabetes and its relationship with obesity. Dr. Peter Attia asks:

What if we are wrong?

What if we are wrong, indeed. There are so many areas of medicine where we may be wrong; where we are likely wrong, but where no one is asking the question.

We congratulate Dr. Attia for his discovery, but why does it take a personal crisis for a physician to question the status quo? Why is there such fealty to particular disease classifications or disease models even when there is evidence to the contrary? Is it the nature of modern medicine to lay down guidelines and be done or is it simply human nature to resist the notion that we can be wrong? Maybe a combination of both; I don’t know the answer, but I do know that if one is certain of everything there can be no room for learning or discovery.

On the other hand, if we begin with the notion that humans, and thus, the structures humans create are fallible – that we do not know or understand everything – and if we add to that humility a dose empathy, perhaps then we can begin healing patients rather than managing them.

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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 post was published originally on Hormones Matter in July 2013.

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.

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 created using Canva AI.

This article was published originally December 2019. 

Blood Clots: What Women Know Versus What We Should Know

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I was on the birth control pill for ten years. I knew that it could cause blood clots in women over 35 who smoked. I wasn’t over 35 and I didn’t smoke. That was all I thought I needed to know. Then I had a stroke. It was caused by the pill and a genetic clotting disorder I never knew I had. In fact, I didn’t know there was such a thing as clotting disorders or that I could have one or that in combination with hormonal birth control, it could kill me. And I certainly had no idea what the symptoms of a blood clot were.

What Do We Know? Not Too Much, It Appears

When I began to do research for my thesis, I wanted to know if it was just me or if other women who took the pill were also unaware of clotting disorders and of the symptoms of a blood clot. Spoiler: I wasn’t alone in my ignorance.

I surveyed over 300 women who had taken birth control pills. Among other things, I wanted to know:

  • What did women know about the risks associated with the pill?
  • Were they aware of clotting disorders?
  • Did they know the symptoms of a blood clot?

Survey Results

Neither Women Nor Their Doctors Understand Risks for Blood Clots

The results of the survey showed that women do not clearly understand the risks involved with taking birth control pills. Many of them believe that certain risks are only associated with being over 35 years of age and/or smoking. This is not surprising given that only a little over half said their doctor discussed the risks with them before giving them a prescription. And for a majority of the women, their doctor never discussed other birth control options with them.

Most of the women were asked about their family history before being given a prescription, but fewer than half of their doctors actually discussed it with them, and fewer than a third of the women actually read the risk information that accompanies their prescriptions. That’s not surprising given how dense and misleading the pharmaceutical companies have made risk communication.

When asked whether they were familiar with the symptoms of a blood clot, most women (60.5%) admitted that they were not. Eight women responded that they had learned the symptoms because a family member or friend had a blood clot, and two participants said they had actually had blood clots. One stated, “When I experienced chest pain and did research online. It turned out that I had pulmonary embolisms (while on BCP- birth control pills).” Only 6 out of 311 women reported learning about the symptoms of blood clots from their doctor. Ironically, more women knew someone who had a clot.

At the end of the survey, the participants were invited to share anything further about their experience on the pill. Here are some of their answers:

My experience on birth control pills, the Nuvaring, or Depo-Provera all proved to be horrendous… I think birth control pills came straight from hell and I hate, hate, hate it. I would rather undergo Chinese water torture daily thank take birth control, and that is the God’s honest truth… My fertility has been affected forever by my under informed choice to go on birth control, and by the irresponsible doctors who encouraged me to switch methods rapidly “until I found what worked for me.”

 

I’ve had two different GYNs give me completely contradictory information about the side effects and dangers of BCPs… Overall, I’m surprised at how little doctors seem to know about female BCP- I haven’t experienced this amount of ambiguity with any other medical specialty or problem.

 

I was shocked- and grateful- when I finally found a doctor who discussed alternatives with me, suggested a wide variety of reading, and let me do my own research and make my own decision before wiring[sic] a prescription. After doing the reading, there is no way I will ever take another birth control pill in my life. Every other doctor I had acted like it was giving out Altoids…

 

I think they’re too often the first option doctors prescribe for reasons other than birth control. That’s frustrating. They’re not a magic pill and some doctors seem to think they are.

The bottom line is that most women do not fully understand the risks involved with taking birth control pills and they are not familiar with the symptoms of a blood clot.

At my thesis defense, when I mentioned that most women (over 60%) did not know the symptoms of a blood clot, my advisor asked, “Well, I don’t think that’s so unusual. Do you think most people know what the symptoms of a blood clot are?”

“No, but I think people who have been prescribed a medication that greatly increases their risk of blood clots should be informed of the symptoms,” I responded.

Who Is Responsible?

This is a simple question with a complicated answer. Who is responsible for making sure women who use hormonal contraceptives, especially women who are at a much higher risk for blood clots, understand the symptoms and when to get help? Is it the responsibility of the doctor who prescribed the medication? Or is it the responsibility of the pharmaceutical company to provide clearer information? Or is it the responsibility of the patient?

From my personal experience, I now know that I cannot trust my doctor to always make the right diagnosis and provide the right treatment. Most of their information comes from the pharmaceutical industry who have clearly demonstrated that they put profit first. And our research is showing that their information is not correct. Therefore, I cannot rely on the drug companies to make sure they provide me with accurate and straightforward information about their medications.

So that leaves me. And you. Until we demand a system that puts patients first, a system of health and transparency, we have to put ourselves firsts. How? We do that by listening to our bodies, doing the research, and learning to trust our intuition. That may mean we have to disagree with our doctors. That may mean we have to ask for a second opinion. That may mean we have to insist on being heard. We can’t be afraid of offending someone or “rocking the boat.” We can’t be afraid of being considered hysterical or melodramatic. We can no longer sit back and hope others are making the best decisions for us. We have to educate ourselves. We must be our own advocates. Our lives depend on it.

And we can start by learning the symptoms of a blood clot.

What Are the Symptoms of Blood Clots?

 Blood clot in leg:

  • swelling
  • pain
  • tenderness
  • an unusually warm sensation in the affected area
  • an unusually cold sensation in the affected area (this is per our research, more details to follow)
  • pain in your calf when you stretch your toes upward
  • a pale or bluish discoloration

Blood clot in chest:

  • sudden shortness of breath that can’t be explained by exercise
  • chest pain, may feel like extreme heart burn
  • palpitations, or rapid heart rate
  • breathing problems
  • coughing up blood
  • dizziness (per our research)
  • uncharacteristic fatigue (per our research)

Blood clot in the brain:

  • severe headache
  • loss of speech
  • numbness or tingling of limbs
  • difficulty seeing or changes in vision
  • difficulty speaking or finding words

For more information about blood clots, especially in conjunction with hormonal contraceptive use, click here.