DRAFT of 10/08/07

My Medical Adventures
How I am Alive Thanks to Some Doctors and in Spite of Others

Theo Pavlidis
Copyright ©2007

A. My Recent Medical History

This is detailed account of my encounters with medical misdiagnosis, mainly, during the winter of 2006-7. There is a shorter account that focuses on issues of general interest. Because there is little overlap between the two documents you should read the shorter account before reading this document.

In order to protect the privacy of everyone involved I have change descriptions slightly and I am also vague in some points. When I write "my doctor" this refers to different individuals in different parts of the document.

In January of 2006 I had radioactive seed implants to treat prostate cancer. After I recovered I started feeling tired during the day and I tried to deal with it by taking midday naps. However the situation became far worse in late November 2006 following a severe respiratory infection that. One of the problems I had was that my sleep was interrupted 7 to 8 times (if not more) each night and, not surprisingly, I was feeling lousy during the day. Then a series of misdiagnoses started and I did not found the correct diagnosis until after four months. First I made a tentative diagnosis myself (based on Internet searches and reading medical articles in the Health Sciences Library of the University) and then I found a doctor willing to order the tests to confirm what I knew was the cause of my problems.

I have moderate Obstructive Sleep Apnea (OAS). In one third of the patients the anoxia induced by the apnea causes a suppression of the vasopressin hormone that in turn causes the kidneys to exude large amounts of water even though there is no need to rid the body of impurities. That by itself would not have caused so many sleep interruptions. But because the radioactive seed implants had weakened my urinary system I had a problem. The severe respiratory infection in late November made the apnea worse, hence the crisis. Once I took care of the apnea my situation improved rapidly and I was able to resume a normal life.

Before I go into specifics I should point out that I had several advantages (compared to average patient) in dealing with my health problems. In the early part of my career (roughly 1962-1977) I was involved in the mathematical modeling of biological systems and I had significant interactions with both research biologists and research MDs. At one time I was the principal investigator of a grant from the National Institutes of Health and I had a post-doc who was an MD. Part of my training included taking courses in human physiology (classes where most of the enrollees were premedical students who, by the way, did not do as well in the course as I did). Therefore I was not in awe of the medical profession. I had also kept my textbook on Medical Physiology that I had a chance to consult often. In addition I received help from my daughter, a practicing clinical psychologist. When I described my symptoms to her she was emphatic that my mood problems were caused by a physical cause rather the other way around (the original diagnosis by my doctors was that the frequent night time urination was the result of "anxiety"). Maybe she was able to make a correct diagnosis where others had missed because she was willing to listen to the patient. Of course I was left with the challenge of finding the physical cause. My oldest son (a neuroscientist on a medical faculty) also helped me by emphasizing the need to straighten out the sleep problem before looking for other causes. (After all, sleep interruption is a method of torture used in interrogations.)

I should add that this recent experience is not the only instance when my life was put at risk because of a misdiagnosis. Several years ago I was experiencing stomach acidity and I went for advice to a specialist. He ordered various tests including X rays of my digestive system after ingesting barium (or somethig like that). He diagnosed my condition as hiatal hernia claiming that he saw the abnormality in the X ray (he even pointed something on the X ray to me). He prescribed various antacids and these seem to help although never eliminate the symptoms completely. I lived that way for several years until my heart surgery in October 2000. One of the first impressions I had after I woke up from surgery was that my stomach was no longer hurting. I mentioned that to a nurse and she replied "oh yes, the feeling of stomach acidity is often caused by heart problems because the innervation of the two organs is close." I should add that I stopped taking antacids and I never have had any stomach problems again. Here I had a symptom of heart trouble that one physician misdiagnosed completely.

B. Dealing with the Medical Profession

Based on my personal experience, it seems that the gap between the best and the worst physicians is wider than in most professions. It is true that in every profession there is a range of competence amongst its practitioners. In software engineering (mainly computer programming) the productivity of the top people seems be ten times that of the weaker people. This was first documented in an AT&T study of its staff in the 1960s and it is holding true even now. Because engineers work for companies, the weakest ones tend to be weeded out, either because their employers re-assign them or because companies who employ too many weak engineers go our of business. Medical practitioners often have their own practice and there is no one to supervise them or to screen them out. Sure there are medical boards, but by the time a physician loses his/hers license, he/she has done enormous damage. Legal remedies deal only with extreme cases and that leaves many cases of less than high quality medical practice out without remedy. Another factor is that physicians are usually paid by insurance companies that do not seem to pay close attention to the quality of the care given.

One shortcoming of some practitioners of medicine is their extreme self-confidence, if not arrogance (sometimes bordering on disdain to the patient). Another, even more serious, shortcoming is that diagnosis is usually based on the most common cases. If you have symptom A, then the cause must be B because that is the case with, say, 60% of the people who exhibit symptom A. Too bad if you happen to be in the remaining 40% and your symptoms are caused by something other than B. A doctor who is willing to sit down and listen to the patient might be able to overcome such a limitation but few doctors do that. The emphasis in "high throughput" that limits most visits to 15 minutes or less making personal care unlikely. This is a pity because as Sir William Osler (a Canadian MD, one of the founders of Johns Hopkins School of Medicine) said: "The good physician treats the disease; the great physician treats the patient who has the disease." Such personal attention seems to have disappeared from current American Medicine.

The situation becomes even worse if your symptoms have multiple causes (which was the case with me last winter). Superposition effects seem to be beyond the grasp of many physicians. When I tried to explain the issue to some of them they looked baffled and even impatient; it was clear they thought I was wasting their time. The tragic side of this is that in older people several systems may start functioning below the optimal level but, because each system is still within "normal limits", the MD cannot find what is wrong. It turns out that when physicians are puzzled they tend to attribute the state of the patient to depression, hence the myth of the "elderly depression". This was pretty much what happened to me. My frequent night time urination was attributed to "anxiety." The doctor had no patience with my argument that if anxiety was causing my frequent urination, the problem should be have be worse durign the day rather than during the night.

My own impression is that training of doctors emphasizes memorization of facts rather than thinking and deductive reasoning. In essence, doctors do diagnosis by table look up and this is why they have trouble dealing with the situations described above.

There is another medical condition that seems to be poorly understood by many medical practitioners. This is the possibility of multiple stable states in a complex biochemical system. A simple example of the concept is offered by the ordinary see-saw that can touch the group either on the left or the right. Thus the see-saw has two possible states. A medical example is when one takes a drug that is effective for, say, 12 hours. It is possible that the state of the system after the drug stopped being effective is not the same as the state of the system before the drug was administered even though the drug has been completely removed from the body. In my case it was the diuretic component of a hypertension medication. Supposedly its effects did not last more than 12 hours and since I was taking it in the morning it should have no effects at night. But when my hypertension medication was replaced by one without the diuretic component, it reduced the frequency of my night time urination.

You may say that I demand too much from doctors because the human body is a far more complex mechanism than any technological device, therefore my implicit comparison with engineers is unfair. Maybe, but engineers are taught to say "I do not know". Doctors apparently are not taught that. Many of the them are arrogant and dogmatic. Well, they cannot have it both ways. If they want sympathy from their patients for their tough job, they must also have sympathy for the patients who suffer from a tough to diagnose ailment.

C. Medical Misconceptions

Medicine is governed by several misconceptions that sometimes defy common sense. I had dealt in the shorter version with two of them, the definition of "Normal Range" and the definition of "Risk Factors." Here are two more.

Misuse of Statistics: On one hand, the medical profession tends to rely a lot of statistics and on the other some physicians apply them incorrectly. One often hears that "treatment X" is not going to affect one's life expectancy but there are no words about how "treatment X" affects the variance. (If you have not studied statistics you may have trouble understanding this statement, but please worry, because most medical practitioners do not understand it either.) Several years ago I asked my doctor whether a new medication I was taking was responsible for certain sides effects that I seem to be suffering from. He said "no", I insisted otherwise, he took a look in one of his books. He said "I was right, this pathology occurs as a side effect in only 1% of the cases." Obviously, he did not realize that 1% is a high probability. If there are 10,000 people taking that medication, 100 of them will develop that pathology. There are also deeper issues with the misuse of statistics in validating the efficacy (or lack thereof) of medical treatments. See the article by Dr. Ioannidis.

Age and Gender Groups: There are medical guidelines that assign risk of illnesses to certain age and gender groups. The most notorious case is the assumption that women are less likely than men to suffer from cardiovascular disease. That has been debunked recently and there have been several writings published about the case that I will not dwell on it now. Another is the assumption that men under the age of 60 do not suffer from the effects of enlarged prostate. I have heard of a case of a person who happened not to fall under the guidelines, so his doctors refused to treat him for enlarged prostate even though he had all the symptoms. Eventually he went into shock and he had to undergo an emergency operation.

D. How to Find the Right Doctor

Given this sorry state of affairs what is a person to do?

Dr. Groopman web site offers offers a nice description of the characteristics of the right doctor that is reproduced in the main page. But how can you find such a doctor?

I have listed some suggestions in the short version. Here are a few additional comments.

I cannot overstate the need for educating yourself on health issues. At the very least you should read a text on human physiology, if you take such a course it is even better.

One obstacle in finding the right doctor for you that checking physician's credentials is not as easy as it seems. New York State passed a law to create a web site with doctor's profiles but several years later, the web site is incomplete. Probably, the most reliable indicator of the quality of a physician's training is the hospital where he/she was a resident. But you have to find that information first and then you have to find out the reputation of the hospital. One solution is to select a doctor who is on the faculty of a major medical school. Physicians at such places are far more likely to be up to date with the literature and the newest defvelopments in their field. They are also more likely to be genuinely interested in their profession and not consider it just as means of earning a living. Unfortunately, many practicing doctors stop reading and do not keep up with the new findings. Having a doctor affiliated with a medical school may not guarantee high quality of care but it makes it more likely. (All of my doctors now are either members of a medical faculty or of a major medical center.)

E. Watch Out for the "It is all in your mind" Pseudo-diagnosis

"It is all in your mind" is a common and erroneous diagnosis when a doctor cannot figure out your ailment. (See [JG_2007].)

I experienced such a diagnosis in November 2006 when a cursory examination of my urinary system revealed no problems and the doctor decided that my frequent night-time urination was the result of anxiety. I argued (too meekly in retrospect) that anxiety would have been causing more problems during the day but my argument was dismissed off hand. At that time I did not know about the condition that made my body dispose of extra water during the night and, obviously, neither did the doctor. After I accepted the "in your mind" diagnosis I was prescribed and started taking psychotropic medications that while they seem to help in the short run (placebo effect?), eventually they seem to leave me worse off. That is when I called my daughter (a clinical psychologist) who, after listening to me, insisted that my problem was physical and not in my head. Of course that left me searching for the physical problem but I reduced the psychotropics and I felt better. (I stopped them completely after the diagnosis of sleep apnea that in many cases causes excessive nightime urination.) What was happening was that the psychotropics did not affect the source of my problem (sleep interruptions) but made me feel drowsy and more tired during the day.

While psychotropics have their place, these seem to be over-prescribed, some times with tragic consequences. There have been several accounts of young people committing suicide after taking an anti-depressant, seemingly a paradoxical outcome. But taking a medication that is supposedly going to help you and actually it does not, or even makes you worse, can push a person to despair. I felt that way last winter, but I was cynical enough to suspect the judgment of the doctors and ask for another opinion. I also had family support that some of the young people in question may not have. Any mis-prescribed drug is dangerous but psychotropics are particularly so.

Unfortunately, insurance companies encourage their use because it is by far cheaper to pay for a pill than for talk therapy. Given the complexity of the human mind, it seems foolish to expect that a pill can fix a person's problem. A competent psychologist can see the root of the problem and guide the patient away from his/hers problem. For some people medication may be needed only in initial period, until the talk therapy takes effect. If one must continue on a medication it is imperative that the physician and the psychologist agree on this course.

F. My Unsolicited Views on how to Improve Medical Practice.

Somebody may say that what I wrote above may be good advice for people with a certain level of education but what about the rest of the population? I claim that letting people know that they should not trust blindly their doctor is a good advice and it will benefit all people, although in various degrees. of course, it would be far better for everyone if the medical profession overcame some of its problems. Several of these problems are discussed frequently in the news media so I will focus on two that are rarely discussed.

In my opinion, one weakness is the process of selecting who is going to medical school. In many countries students are admitted to medical school after passing an exam given at the end of their high school. They follow a six to seven year curriculum. In the United States students enter the medical school only after they complete a four year curriculum in some other major and then they spend three years studying medicine. The selection process relies on several criteria and one of them is the GPA. Because of the large number of applicants people who do not have a high GPA are eliminate in pre-screening and their applications are not seen by the faculty. This biases the selection in favor of people who are good in getting a high GPA and may have no other interest in medicine except that it provides for its practitioners a relatively high income. Selecting medical students after high school and then allowing for a higher attrition rate is likely to produce more doctors who are genuinely interested in medicine than the current system does. As I note earlier I have seen the medical profession from various angles, not only as a patient but also as a student in pre-Med classes as well as an adviser of engineering students who were aiming for medical school.

Another weakness is the lack of hierarchy in medical practice. (Although there is plenty of hierarchy in education and training.) Medicine is one profession that makes limited use of various levels of professionals. In recent years nurse practitioners have been added to the ranks but their use is nowhere what it should be. There are may relatively few physicians who can make a correct diagnosis in a non typical case. Ideally such people should see a patient only in the beginning of a treatment and most of the follow ups should be made by the next level of health professionals. Here I assume that the treatment does not involve active interventions such as surgery but it consists of medications and lifestyle changes.

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