Part 4. Routine methods are insufficient for diagnosing and treating complex chronic diseases

This post discusses the inadequacy of standard health care when it comes to inflammatory conditions. I don’t mean to blame individuals working in medicine for any problems arising from lack of time, partly outdated education and flawed guidelines from above. Individual medical practitioners sadly have little opportunity to bring about big changes even when they have the necessary knowledge and will.

The problem is on the systemic level; a fundamental misalignment endemic to healthcare systems across the world. It get especially bad when the issue is chronic and inflammatory conditions, where many individually minor inadequacies add up to seriously flawed care.

Common mistakes by phycisians when meeting with the chronically ill

  1. Medical professionals experience a high level of stress and develop compassion fatigue already in med school, which inevitably must affect patients. Many doctors risk burnout due to the high work load and the nature of the work. The stress makes them miss clues from patients.
  2. A thorough patient history is seldom taken because there isn’t enough time during the short visits.
  3. Often only some very basic, blunt tests are used, such as hematology, erythrocyte sedimentation rate and CRP – which often fall within the ”normal range” in people with low-grade inflammation and autoimmune disease. Despite the undersensitivity, these parameters are sometimes used to exclude inflammatory disease. Furthermore, many tests used to detect infectious pathogens are unreliable and/or insensitive.
  4. Even if unusual values do turn up in these tests there’s sometimes no effort to find out why.
  5. Understanding reference values and normal ranges is sometimes a problem. An example: my friend suggested to their doctor a test of vitamin D levels. The test came back showing 26 nmol/l, where the limit of severe deficiency it at 25 nmol/l. Still, the doctor informed my friend that his levels were normal. Another problem is that normal ranges for many parameters are based on the average not of an ideal, completely asymptomatic population of perfect health, but of a real population that’s overinflamed and half-well. Many current reference intervals might therefore be flawed guides to whether a person is of good health.
  6. All too often, medical professionals rely on general protocols and guidelines rather than drawing clinical conclusions appropriate to the specific context. Imagine the following scenarios.
    • A doctor tests a patient for a specific infection. The test comes back positive and the doctor prescribes antibiotics. If the patient improves but relapses once the treatment’s over, one has to consider that the infection could’ve returned and that the course of antibiotics was too short, no matter what official guidelines say.
    • A patient exhibits textbook signs of hypothyroidism, but test results are in the normal range. Perhaps TSH is on the upper limit of the interval, but still, within. One must then consider that the patient might be hypothyroid anyway and continue investigating. Also, one might spend a little time researching whether the reference values ought to be revised.
  7. Complexity is often not very well understood. There might be several causes behind someone’s ill health.
  8. It’s common among medical practitioners to not see connections between different symptoms, but regard each problem as a separate phenomenon – as they should according to their education and guidelines. Patients presenting with several symptoms that at first seem to have nothing in common are sent around to different specialists, none of which has the full picture or is specialised in seeing connections. Thus we miss our chance to discover a common root cause.
  9. Many are unaware of how important diet and lifestyle are for inflammatory disease. Alternatively, this knowledge isn’t used at the actual point of care.
  10. Some medical professionals are quite resistant to scientific publications that contradict their views. This is a normal part of being human and it applies to doctors and scientists as much as it does to you and me. Unfortunately, the consequences can be serious for patients.
  11. Medical professionals are not given nearly enough time to read up on the latest research in their field, or with the experiences of colleagues in other countries.
  12. Some doctors confuse the fact that a particular disease is rare with the belief that it couldn’t possible strike any of their own patients. ”No, you do not have that disease that you found on Google, because it is a very rare disease” is not a conclusive argument in itself. Many diseases are underdiagnosed.
  13. Doctors sometimes rely on psychogenic pain as an explanation when no other is to be found, i.e. believe that many symptoms are all in the patient’s head. This has to stop.
  14. In the vast majority of cases the root cause is not found, and you end up treating a symptom, or in the worst case, a biomarker. Rather than take everything into account and tailor treatments to the patient’s particular situation, doctors execute standard protocols against particular sets of symptoms.

Taken together, these examples paint a rather disastrous picture of how medical practice falls short in caring for chronically ill people. Before you judge this list to be a gross exaggeration, let me just say that almost all of these things happened to me, personally – and sadly to the majority of people with inflammatory conditions I’ve spoken to so far. Let me repeat that this doesn’t happen because medical professionals are heartless creatures we’d do better without. That isn’t true at all. They possess a lot of relevant knowledge of course, just usually not enough and not the right knowledge to reliably identify and reverse complex and vague conditions.

Standard treatment focuses on symptomatic manifestations of disease rather than cause

Someone who comes in with inflammatory symptoms can have dramatically different experiences depending on how specific and well-known their symptoms are, and just who you happen to see. Someone coming in with severe joint pain might be immediately referred to a specialist in rheumatology, get quickly diagnosed with rheumatoid arthritis and prescribed top-rated medications (which may or may not work). Someone else might come in with diffuse symptoms that can’t (yet) be seen or measured like pain that moves around, brain fog or fatigue. If it’s the latter some patients witness that they had to endure a dismissive and patronizing attitude. When symptoms like these are taken seriously (which I gladly think they are more and more), the treatment typically focuses on simply silencing the symptoms – the patient is prescribed painkillers, anti-depressants and sleeping pills, all according to guidelines.

In short, even when a patient does receive relatively good care, treatment tend to have the wrong aim. You might be examined for hours by the most knowledgeable, agreeable and compassionate specialists in the whole country – but their aim is still to name your disease and prescribe the associated pharmaceutical drugs rather than find out what has actually caused your condition. Sometimes, as a patient, you – understandably – tend to confuse a physician’s true concern for your health, friendly reception and impressive specific expertise with their actual ability to help resolve your issues.

What then, should be done instead?

1) Physicians must ask themselves the question: ”This patient used to be healthy. Now they are ill. What has happened?” They need to take a thorough history and ask many, many follow-up questions – not latch on to the first plausible standard diagnosis.
2) Based on clues from the patient’s story one must prescribe tests that could give clues towards the ultimate cause of the patient’s troubles – if possible, tests with a proven record of high reliability.
3) Doctors need to start recommending dramatic diet and lifestyle changes that make a difference. Merely recommending the patient to stop smoking, exercise more and eat more whole grains is not nearly enough.

Do you suffer from an autoimmune/inflammatory disease or a diffuse set of symptoms? Please share your experiences of the medical system – good and bad – in the comments’ section.

Part 5. Standard health care has little to offer the chronically ill – we need functional medicine

Further reading

Doctors have become less empathetic but is it their fault?

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