As a physician I’m often asked by patients about treatments for Graves disease but also questions based on what worked for their friends. Often patients are completely unaware of what evidence based medicine is, what placebo effect is and what anecdotal evidence is. This is great to know about if you want to empower yourself as a patient to direct yourself to the best treatments for you.
First, lets start with a story. It is set in the early 1800s in a town we all probably saw on ”Little House on the Prairie”. It was a regular old town in the west…farmers, loggers, carpenters, railroad men, housewives and cooks. Most of the people in the town were healthy but some people in the town suffered from various ailments from arthritis to cancer. The local town doctor tried different things and some people got better but some diseases (which in the 1800s we didn’t have the treatment for) were not getting better.
One day a wagon pulled into town. On the side it read “Doc Johnson’s magical Elixir”. The wagon stopped in town and a man who drove the wagon got out and started selling this mysterious potion. “Dr Johnson’s elixir..cures the gout, the shudders, cancer and any other problem you have!”. According to the man, the Elixir was a special formula given to him by a famous doctor in Europe and could cure almost anything. There were people in town who were suffering with ailments that the local doctor couldn’t treat that rushed to buy the Elixir. Some people liked the Elixir whereas others did not. Some of them felt it helped and while others felt it did nothing. Every month the man would stop into town and sell the Elixir to his loyal group of patients. The Elixir was expensive and some people spent their life savings over years on the Elixir. What people didn’t know was the Elixir was actually just scotch, sugar and cayenne pepper mixed together. Some patients who needed other treatments that the local doctor could treat took the Elixir instead and died. It took a long time for people to figure out what was going on but after a while the man in the wagon didn’t come back. He just moved to another town.
This story is an example, but stories like this played out all throughout the 1800s in the United States. Though sometimes it was a potion or drink, other times it was a treatment or even a surgery. The man in the wagon were charlatans, bad doctors, drug companies, herb companies and scam artists. In the early 1900s a senator from New York said “Hey this is not cool guys. Many people are getting fooled out of their money and even avoiding good medical treatments to use treatments that are unproven or even harmful to them”. In 1930, The Food, Drug and Cosmetic Act was created and the FDA was given the responsibility of making sure that whatever claims that were made for drugs were truthful and accurate. Just because Aunt Millie felt her milkshakes cured cancer, doesn’t mean that she can now sell her milkshakes to cancer patients. You had to prove it first by performing studies. Evidence based medicine was born.
What is Evidence based medicine?
Evidence based medicine is medical approach of using drugs and treatments (like surgery) for patients based on proven testing or experiments. It prevents doctors/companies/random people from making claims about something without proving that they work. Why is that a big deal? When a patient has a medical illness that may not be improving or there is not treatment for, there is always a hope that “a miracle” can occur. This “miracle” can be in the form of religious miracle, spontaneous resolution of the disease, or secret treatment. As one can imagine there are bad people in the world who would prey on these patients for financial profit. These people could be doctors, lay people, crooks, pharmaceutical industry and even alternative medicine industry. Evidence based medicine says before you make a claim, you have to prove it in a study. A study is an experiment where often a group of patients with a disease are split into two groups. One group is given the “medicine” and the other group is give a “sugar pill” or placebo. If a medicine actually works it should heal more people than the sugar pill. Evidence based medicine lays the foundation for using treatments that are helpful and not using treatments that are not. Suddenly after evidence based medicine was used, survival rates for diseases went up. Effective treatments were being used and harmful or useless ones were being discarded.
What is the placebo effect?
The human mind is so strong that the sugar pill will “cure” some people or make them feel better. So, for example if there were 200 people with Graves disease and low thyroid and 100 were given synthroid and 100 were given a sugar pill, you would hope that the synthroid group would help more people than the group with the sugar pill. The placebo effect in essence is that there will be some people on the sugar pill who will feel better just because of the psychological effect. In some diseases, especially ones with pain, fatigue or subjective symptoms, the placebo effect can have more powerful or noticeable effect. With cancer, broken eye socket or physical problem it may not work as well for obvious reasons. The placebo effect has been studied and proven extensively but that is the reason that one will hear about someone self treating themselves with some experimental medication, vitamin or treatment and feel “it really helped them”. That placebo effect is so strong in our minds, it can be impossible to convince patients otherwise.
In certain examples (like antibiotics for treating the flu) this effect gets reinforced by the fact that the disease gets better on its own. So, for example, I can prescribe to you antibiotic cream when you sprain your ankle and tell you that your ankle will get better. We know a sprained ankle will get better in 6 to 12 weeks on its own. This has nothing to do with the antibiotic cream of course, but that most ankle sprains get better in about 3 months as the ankle heals. Psychologically however, the patient will definitely feel that the cream was helpful. "I used the cream and the ankle got better!" The next time you have a sprained ankle, you will insist or demand you get the cream even if the next doctor says “Umm…antibiotic cream doesn’t treat sprained ankles”. Most likely if your friends sprain your ankle you will tell them or tell your friends on facebook, that antibiotic cream is what is needed.
What is anecdotal evidence?
Anecdotal evidence is when an unstudied drug or treatment has been used on a patient and they have gotten better. If a cancer patient goes partying one weekend and their cancer goes into remission the following month, that is anecdotal evidence of partying curing cancer. It is not tested or proven. Could the patient have undergone a spontaneous remission of cancer that has nothing to do with partying? Of course. In the patient’s mind though, they will feel the weekend partying was the cure of the cancer. It will be very hard to convince them otherwise. The human mind likes to connect events and look at cause and effect. If something good (or bad) happens, the first thing that happens is the mind tries to find “what caused this”. Unknown reasons or spontaneous remission of things is not very palpable to our brains. This is the reason however that we will try to connect disease onset or end to events or treatments.
So, as a second example, if a patient has Graves eye disease the active course of the disease in most nonsmoking patients is roughly 1 year, and at the end of that year they start drinking three glasses of orange juice, they may also go into remission or stabilization. It is not because of the orange juice but because the timing of the orange juice coincided with the end of the 1 year course. They then may go on facebook and tell all their friends that Graves is curable with orange juice. They would be giving false (and dangerous) information to people. It would be impossible however to convince them what they are saying is not tested. Note: I didn’t say what they are saying is false but untested because no one has tested orange juice hyperdosing for graves eye disease. It could cure graves but we really don’t know. This is an example of anecdotal evidence being used by patients to direct their treatment.
Another example of anecdotal evidence would be a patient getting on facebook or in a waiting room and asking “My doctor recommended steroids for me. Did it work for you?”. Taking a straw poll in a waiting room, on facebook or in a bar is another way of trying to look at anecdotal evidence to make a clinical decision for yourself.
Lets look at an example: The cure rate for lymphoma of the orbit is about 95% with radiation. Imagine if you had lymphoma and your doctor recommended radiation. Ok fine. So you go on the facebook lymphoma group page and take a straw poll “Hey did radiation work for you?”. Now remember, many patients with lymphoma get cured but the ones where radiation didn’t work and are struggling with the disease tend to congregate to support groups. If those people are congregated in the facebook page when the new patient asks the question instead of getting a 90% cure rate, the poll may reveal a 10% cure rate. The patient is going to be misled into thinking radiation is ineffective. They may not get the treatment she needs. It can be very harmful.
Remember reading a scientific paper or being told the data/science by your doctor does not have the same emotional power of hearing a person saying “Lung Cancer, I refused the treatment and it went into spontaneous remission on high doses of Vitamin E.” That statement can trump tons of data in a person’s mind. Granted it can be totally false information but our minds are programmed to latch onto this sort of personal evidence.
So what does a patient do with all this information? Here are the 3 takes aways from this article:
First, ask about studies, not individual experience. You care about what happened to 1000 people who got treated with steroids not just the person on Facebook today who says it worked or your doctor's "personal experience".
Second, if there is a 98% chance of something working and you tried it and it didn’t work, you are part of the 2% where it failed. Your experience and responsibility as a patient is to let people know you were part of the group that failed and not to discourage the other 98% from a treatment that can help them. You would be driving 98% of patients away from a treatment or cure that could work for them.
Third, if someone offers some treatment ask “what is the data that supports it?”. Some treatments have high side effect profiles. High dose of some vitamins can even increase your risk of cancer. Only a fool would increase their risk of a side effect or cancer without any increased risk of cure of their disease.
Predators prey on ignorance of the patients. There are people online who have very limited understanding of science, statistics and math who want to convince you that their treatment failure means that no one should get that treatment. It helps them emotionally but is terribly harmful for you. If you were studying for a test and a friend said “I studied for a test and I failed anyway” would you stop studying? Of course not.
There are companies online (not just pharmaceutical but also the alternative therapy industry) that wants your money. They know a patient with a tough disease will latch onto anything to give themselves improvement and that means purchasing of their products. Don't get duped. Remember an educated patient gets the best treatments. This applies to Graves disease and other diseases as well. Do your research and best of luck!