Doctors absolutely hate knowledgable patients, from what I can tell, however.

I've just spent two years begging for an ultrasound because I've strongly suspected I have gall stones - and my GP has consistently rebutted me, and has written stuff like "hypochondriac" in my notes - he left the room, didn't lock his computer. Tut tut.

I initially tried playing totally stupid and letting them reach their own conclusions, but they just kept going "norovirus". When I then started talking about Murphy's sign, cholecystitis, why this lead me to think gall stones - they responded with a complete shut-down, get out of my surgery, type affair.

Went abroad. Got an ultrasound. Severe gallstones. Took them back to my GP here, they refused to even look at them. About to go abroad again to have a cholecystectomy.

So. Educated patients - if this is to help healthcare, doctors have to be on board too, and I don't think they ever will be, as an informed patient is viewed as a threat, as you say.

Maybe you should file a complaint with the medical standards board, sounds like you'd have a valid case if this story is true.

Although I'm assuming you're in a country where you'd have a medical standards board or some kind of complaints procedure, which not all have...

The problem for most patients is that filing a complaint, making sure it gets into the system, staying on top of it to make sure it isn't buried, responding to criticisms and building justification for the claim, and then maybe losing in the end because you have an unsympathetic judge / board / whatever is too much of a pain in the ass. This being compounded by boards of reviewers in many places that are friends with the reviewed, so you get an effect like the police, with a wall of white, rather than a wall of blue.

Just switch doctors, tell folks you know not to use that doctor, and tell the doctor why you're leaving. Network effects and market forces can make an impact on this kind of thing if you're diligent.

I'm not sure what kind of insane complaints procedure you've had to deal with, but here you just file it, they sometimes come back for more information/questions, and then that's the end of it. You sometimes get a letter with a result, but there's none of that other stuff you listed ("making sure it gets into the system," "staying on top of it," "making sure it doesn't get buried," etc).

Plus you don't really "lose." You make a complaint, they investigate, and then take action if they feel it is justified. There isn't any "prize" for "winning" so therefore you don't lose.

Ultimately I'm not sure what you're getting at. Sounds like FUD to me, essentially "don't complain because it might be a hassle and the free market will magically solve the issue anyway."

I'm in the UK - it's straightforward to complain, but nothing comes of it, apart from even shittier treatment the next time around, because they know you've complained about them!

Sounds like your GP sucks, have you tried a different one?

Several, over the years.

My favourite was the one who threw a mop at me for blacking out and bleeding all over her surgery, and then gave me a sticking plaster for my very obviously very infected wound.

Ended up in an ambulance to hospital the next day with a brain-cooking fever and sepsis. She was fired - but didn't lose her license.

Jesus christ man, I've had nothing but good experiences with my GP in Yorkshire, even for the supposedly failing/diminishing mental health services. He listens to everything I have to say and trusts that I can actually think for myself.

I absolutely agree. There are bad doctors out there. The medical community, like every other professional community, will stand together to protect each other from what they feel are unfair attacks, but they---like every other professional community---don't particularly care for the bad doctors either. The situation can be improved, but it won't unless someone complains.

I have Hashimoto's thyreoiditis

The symptoms started when I was 14 years old, and my mother took me to a endocrinologist, back then as wild attempt to see what was going on (we had no idea what the issue was, my mom choose the medic specialty in a sorta random manner).

The result was: medic refused to do any exams, told my mom that all my symptoms was because I was fat, and I was absolutely mad at my mother (because I told her that endocrinologists are medics for fat people, and I did not needed one, and then the medic tell me all my issues, including random pains are because I am fat, just made me offended)

Fast forward some years, my health was getting slowly worse, with other medical specialties trying to stave off the effects (For example research shows that seemly one of the first symptoms, if not the first symptom that shows up, is cholesterol imbalance... I spent years going to cardiologists that tried their best to fix my cholesterol, until one of them suggested some heavy-weight drug, and I decided to give up on that and let it run unchecked).

Until one day, a marketing director that was friend of my mother, saw me from afar, and told me mother I had a thyroid problem.

My mother puzzled, told me that... And I asked her more about it, and she then remembered (and then told me) that my grandma had it, my great grandma had it too, and my aunt had thyroid cancer because of the same disease (hashimoto disease can lead to cancer if left unchecked)

I was kinda baffled, I mean, lots of people had the disease, she never wondered about it? In fact, she had symptoms too (much weaker than mine, to the point I don't realized), and never ocurred to her too... and indeed, she went to a doctor and promptly got diagnosed herself (she also had the disease).

Now the important part: after that, I spent 6 years going to medics, and as my information grew, the more they went into "shut down" mode and refused to cooperate, I had to threaten one to get the exams I needed (she was a elderly woman, I stood up, and I am very big for my country standards, and stared her down, and told her to sign the godamn request for the exam I wanted), and this was the only way to get results (the exam I wanted DID confirmed I had hashimoto), but still no doctor wanted to treat me...

It was funny, I showed up, gave them ultrasonography showing my destroyed thyroid, and gave them my symptoms, and then they would ask for a blood test, that would give normal TSH, and then they would promptly tell me I was hypocondriac or something and my health was fine.

As this went on I got more and more convinced that medics are just people with a crazy power trip, seemly saving (or not) people lives makes them think they are some sort of god or demi-god, with power of life and death...

Several went to tell me that I was wrong because they were right and I would never understand medical research and whatnot and that is not what the association said.

I went for some time to hate the association, they are involved in scummy stuff, and they were all the time cited as the reason why my normal TSH meant no treatment for me...

Until I decided to read the association documents, and whoa, my own arguments, the same ones that I use to argue with the doctors, citing the exact same papers, are written down in the section that explain how to achieve diagnosis... in the end the association actually agrees with me, and is the medics that in their hubris don't even read it, or read it and ignore it, and lie to their patients.

The only reason why I still go to a doctor, is to get the permission to get the blood tests (privately ordered blood tests cost like 2 month wages, and I need blood test every 4 months so...), because I am mostly treating myself with my own knowledge (and so far it is mostly working).

EDIT: "normal" TSH as in below 5.0 (it was 4.0), and my argument was that they are using the wrong baseline, the association use 5.0 for general case, but the association cite studies related to my specific symptoms and situation that suggest that TSH should be below 2.5 instead... thus my TSH is "normal" only for the "generic" most conservative case

EDIT2: I started treatment just some months ago, I am 26 now (meaning it took me 12 years to start the treatment)

> In the process, I've stopped medications and have had to teach my doctor certain things (like why I'm not gong to either worry about my cholesterol or take any drugs for it).

People have many values, one of which is health. Deciding not to worry about cholesterol may fit with your value system, but is unlikely to benefit your health. As a doctor, it would be reasonable to try to convince you of the benefit of caring about cholesterol, and then working with you to improve your health along the axes in which you are interested in making changes. If cholesterol is not one of them, that shouldn't sever the remainder of the therapeutic relationship. In other words, your physician may have recognized that global optimization sometimes requiring abandoning local optimizations (such as cholesterol control, in this case).

Obviously I don't know anything of the specifics of your case, but yours is an interesting comment.

Or I've done enough research to see what is correlation, what is not, what actually correlates and what does not. Total cholesterol has zero predictive power (2/3 of heart attack sufferers have below-normal total cholesterol), yet that number is used as a marker for prescribing "treatment".

That doesn't mean there aren't numbers with value in your blood. Triglycerides, HDL/LDL ratio, and LDL type have some predictive values, so I pay more attention to those.

I would encourage nobody to trust me at my word, though. Do the research. Take control of your own health. It's ok to disagree with your doctor.

I'm going to give you the benefit of the doubt, being that you are sufficiently educated to comprehend the studies you're reading - both biology and statistics - and have actually invested a non-trivial amount of time ensuring you're actively trying to seek information to disprove your hypothesis rather than the alternative. (ie. You're looking for research suggesting that cholesterol has significant predictive power as opposed to looking for research just confirming what you already believe.) [0]

And under those conditions, I agree with you! Get involved with you health and engage in discussion based dialog with your doctor, and push harder if you don't agree. The healthcare system in this country may be incredibly screwed up, but at the end of the day most doctors are incredibly intelligent and if you have information suggesting they are wrong they very much would like to hear it. (Though like the rest of humans, some of them let pride and ego get in the way of rationality.)

However, the fact of the matter is the kind of person I described makes up a fractional percent of our society. Most people are not even close to being able to do that. Even if they could comprehend the biology, statistics are hard. Most people are incredibly naive and arrogant with their regard to their comprehension of statistics (probably myself included), which is why they are so powerful in misleading people. Ex: "A and B have a strong correlation so you should do C" - when in fact the correlation's r value is 0.3 and the correlation described was more likely random noise... but there is a correlation! [1]

Thus it is important to keep in mind general population when considering the effects of changes impacting more than yourself. If our healthcare system demanded we take more control of our own health, there is a small group of people who would be greatly benefited, but there is a much larger group who would suffer.

[0]: If that came across in an attacking manner I do apologize as that isn't my intent. My thoughts are much less about your specific case rather society as a whole.

[1]: Just to clarify my thoughts, I'm not suggesting most people are not intellectually capable of acquiring the knowledge to do any of this - It's not like it takes a special kind of super genius - most people simply just have not acquired the knowledge and thus are incapable for that reason.

It's not controversial. It is well known that triglycerides and LDL/HDL ratios are more important than total cholesterol. These are all part of the standard blood lipid panel. Some doctors are just unaware of the relatively modern (10-20yrs) advances in blood lipid analysis.

I think perhaps we are thinking different things by "take control", and perhaps "get heavily involved" would be a better way to phrase it. Ask questions, do research, and discuss treatment options. It's also important to know your own limitations (and confirmation bias is always a human limitation).

While I feel comfortable with my knowledge in certain areas[1], I definitely don't have the breadth of knowledge a doctor does (and the more specialized the doctor, the more true that is). But even in that situation, after a visit to the doctor, it's time to hit the books and understand what is really going on, what the current state of research is, and what options exist.

1. Yes, I do believe there are certain, narrow areas where I am more knowledgable than the average doctor, but these are areas that are, unfortunately, not covered well in medical school. I consider it unfortunate because they are also areas (most likely) underlying much of the chronic illness in the US and other Western countries.

While this is something that may be possible for you, I think what the parent is saying is that most people lack not only the desire and willingness to do their own research, but also the general knowledge of the topics to fully comprehend what it is they're reading.

While doctors do typically go to school for a more 'general' understanding of any given disease, they still have a great more background on the subject than the average person, which probably helps them differentiate (to an extent) between the signal and noise of any given research paper that someone researching may come across.

The same could very much be said about software. To a non-technical person, searching about 'why you should use Windows vs Mac' could be pretty fruitless. Sure, there's plenty of information available, and numbers can easily support one or the other, but do you actually know what those numbers represent?

Now, I'm not saying that patients shouldn't be able to see their records, nor that they shouldn't spend the time learning about any conditions they may have (though I won't claim that I have), but I don't think we should discredit the knowledge that your average doctor has about your health.

Distrust of your healthcare provider isn't exactly healthy either. And again, as to your last point, can you elaborate? I'm assuming your referencing something to do with depression and obesity, as you mentioned in your original comment, but you haven't really mentioned what it is they're failing at.

I'm not suggesting anybody to distrust their medical provider, and I disagree that it is anything like software. This is your body. It is your life. It is your health. Nobody cares as much about you as you do.

If you distrust your healthcare provider, find a new one. But if your healthcare provider does respect you and your needs, isn't willing to answer your questions, then I also think you should find a new one.

And, as I've said elsewhere, I am not discrediting their knowledge. I'm recognizing that their knowledge, like any person's, is bounded. They have to care about hundreds of patients with hundreds of conditions. You have the opportunity to care about yourself. Take it.

That is right. Some patients are quick to see a conspiracy when doctors can't cure them. But some diseases are just outside the capabilities of current medicine. It sounds like you suffer from something like metabolic syndrome. It's a deadly serious disease that's unfortunately common, and one that has no cure (as with any chronic disease).

>>existential fear resulting from the balance of power between patient and doctor than anything else

It's the most elemental fear of all, I think. It's the fear of one's own mortality. Would the doctor-patient relationship be so fraught otherwise?

Or to go another way: doctor's get paid on throughput, and at some point it's not worth the effort to keep arguing with the patient, provided you can show in your records you did advise them repeatedly that they were making an inadvisable decision.

Cholesterol specifically is in the realm of relative unknowns for medicine. Especially the way it is measured, it may or may not be a predictor of heart disease or other maladies. It is also unknown why some populations have a higher baseline cholesterol, and how that affects their longterm health.

Speaking as a person who has had very high cholesterol from childhood with very healthy eating habits and despite being a very active athlete with <5% bodyfat.

I feel your sentiment. I’ve had a love hate relationship with the medical community. It took two plus years for a diagnosis of Celiac’s. Along the way, I met a number of doctors who took the attitude that if they couldn’t figure out what was wrong, it must be in my head. And while these docs made me want to crack skulls, I also came across a number of great doctor’s with empathy, knowledge, and an understanding that their knowledge is not infinite. It’s a tough job, and after that many years in school, it’s tough to be humble.

It was my step-brother, a Cardiologist, who recommended against my second endoscopy that led to the diagnosis and the transformation of my health. Like my XO in the Navy said, ‘Only you are responsible for your career.’ It applies to medicine as well, ‘Only you are responsible for your health.’ Especially with anything chronic that may be outside the 99.9% bounds that modern medicine is designed to handle well.

>>I met a number of doctors who took the attitude that if they couldn’t figure out what was wrong, it must be in my head.

I hear you.

I went through a very similar phase a few years back here in India. It turns out it was just a simple infection being dragged around by my doctor just to keep the consultation fees coming.

It took a little internet research and a change of doctor to get the problem resolved.

In another case a wife of a colleague suffered from a serious health issue. Turns out the doctor did everything to delay the actual treatment to keep the expenses high. After a little research and catching the doctor in the act, the doctor yelled at them telling that was how he deals and they can go to a different doctor if they wanted. A new doctor was able to get the situation under control and get the issues resolved pretty quick.

We need to understand that at the end of the day its just a business, and they just tend to optimize what works for them.

Is there a review site for doctors? It would seem to me that such blatant profiteering at the expense (both health and moneywise) of patients ought to be exposed.

Yes, ZocDoc. Also Yelp to some degree.

The reviews, in my experience, are less useful than you might imagine. People have very different ideas of what makes a good doctor and they seem much more likely to write reviews when they're not happy.

There are a few, and as you can expect, they open some huge legal cans of worms: http://www.nytimes.com/2012/03/10/your-money/why-the-web-lac... Posting a picture of a cockroach in the bathroom is one thing, essentially accusing a doctor of malpractice is another entirely. Stepping on local Medical Boards' toes doesn't help either.

Physician here. I personally believe patients should do their own research, up to a certain point. There is a reason physicians have tens of thousands of hours of training. We quickly learn medicine is rarely black and white and straight from the textbooks. The art of medicine is a skill that takes a lifetime to develop, and is still not perfect.

Sure, you can search pubmed for the best therapies, but patients often don't know how to fully interpret a study. Was there enough power? Does the patient fit the studied population? Are the primary endpoints significant in this scenario? The knowledge is out there, but dangerous in the wrong hands.

Its generally a subpopulation of patients that give a reasonably self informed patient a bad reputation. Many patients (especially in the low income brackets) treat their physician like a McDonald's drive through. I want this, this, and this and I don't care about your extensive training and clinical judgement.

I honestly think this "I want this, this and this" comes down to how we infantalize adults in modern society, and how that comes out in the way that we pay for healthcare (insurance or social programs rather than out of pocket) and in the drug war. About half the time I go to the doctor, I already know what I want (i.e. not for diagnostic reasons) and if I could get it and at least try it out without a prescription, I wouldn't need to waste my time and the doctor's time. Sometimes I don't know what's wrong with me and I actually do want to utilize the doctor's diagnostic skill, but that's not always the case - the same is true when I visit a mechanic, sometimes you already know you need an oil change and a tire rotation or whatever.

Yes, people might make the wrong call about their health sometimes, but that's not the doctor's concern - they're adults, not infants, they've earned the right to make their own mistakes.

> My own story is one of overcoming obesity and, at times, nearly crippling depression using that ability to gain knowledge to learn how to feed my body. In the process, I've stopped medications and have had to teach my doctor certain things (like why I'm not gong to either worry about my cholesterol or take any drugs for it).

> As people take control back...when they realize they have some control...they will become more healthy.

Your story is great, and a good example of the upside of patient control and involvement in care.

However, the downside also exists, and is very real. For some patients, having control over their care means demanding unnecessary tests and treatments, which leads to phenomenal increases in costs to the insurer and/or provider, as well as a reduction in compliance with medication and treatment regimens[0] - this has implications both for public health and the patient's own health. Or, worse, demanding medications that they think are helpful but are actually harmful (this happens all the time).

The problem is that control isn't very meaningful without an appropriate level of knowledge to supplement it, and even when the resources are available, very few patients are willing to take the time to educate themselves to the extent necessary to make informed decisions about their own care.

> Once patients become knowledgable, the doctor moves from a pillar of all knowledge to a (hopefully) trusted, knowledgable advisor. That change frightens many in the medical community[1], but it will yield better outcomes.

To be blunt, it's more likely that the doctor will move towards being the person who enacts the wishes of the insurer (or whichever entity is acting as the insurer). This isn't a particularly bold prediction - it's already happened, in that doctors are increasingly beholden to the pressures of insurers. Once you take into account the massive costs that arise from mismanagement of long-term conditions (whether from the patient or the doctor), it's not hard to understand why insurers are taking increasingly active roles in patient care.

[0] This isn't always bad, but think of diseases which require adherence to antibiotics (or, worse, diseases like HIV, which are chronic and for which compliance is a matter of public health) and you'll see why this can get problematic very quickly.

The problem you describe is an economics problem. Doctors and patients are shielded from the costs associated with their health care. Having insurance act as a group savings plan is catastrophic for all aspects of healthcare.

If, on the other hand, people were paying out of pocket for those tests, who cares? What is the downside of a person being more knowledgable and involved?

Unfortunately, the ACA took a step in the wrong direction by hiding more costs from the consumers. If we want a healthy health care system, we need price tags (and insurance for catastrophic events!).

Well, I can think of one downside to just giving the demanding people what they want: over-use of antibiotics creating 'super' strains of bacteria.

(I realize that you're specifically talking about tests, but I see tests as just an example of the, "I know better than the doctor," people.)

I would hope no doctor would prescribe anything without agreeing to the medical benefit of said treatment (I've asked for an off-label prescription before and my doctor pushed back until he understood and agreed it was worthwhile).

A patient can't just start taking an antibiotic; the doctor has been given that gatekeeping role, and that is as it should be. Just because patients are involved doesn't mean doctors abdicate their responsibilities as well.

(Off-shore pharmacies add a whole new twist to this, and I'm not sure how you address that. I wonder, though, if antibiotic usage in industrial animal husbandry is not a bigger problem than somebody's hypochondriac relative.)

> What is the downside of a person being more knowledgable and involved?

More tests does not mean more knowledgeable. It just means the patient has more noise to either listen to or ignore.

That has consequences: stress from some test result; taking action based on a test result when there's nothing wrong; and so on.

I completely agree with you. I'm pretty picky about what tests I'll take for exactly that reason: stress is dangerous to one's health and many tests have abysmal false-positive rates.

My hypothesis is that people, on balance, would be healthier if they took a more active role in their healthcare. I've seen it in a lot of people's lives, but there is a strong confirmation bias there. You don't see the people that tried and wound up worse off.

Fortunately, this is easy to study. We could find an answer to whether people are better off, and, more importantly, how to ensure they are better off.

Quote from Kaplan's Clinical Hypertension medical text:

"The practitioner must take direct responsibility for the individual patient. We know of nothing more helpful in achieving good control of an individual patient's hypertension than the home monitoring of BP. In the best of worlds, the patient could alter his or her antihypertensive regimen based on his or her home BP readings just as diabetics are allowed to alter their insulin dosage based on their home glucose readings. Such self-modification may be too much to ask, but phones, faxes, and e-mails can easily send the readings to an office assistant or practitioner who can then provide appropriate advice.

For too long, practitioners have kept patients out of the loop, either too proud to give up some of their power or too suspicious of the ability of their patients to help themselves."

I 100% agree with [1]. I used to work with a group of MDs and the paternalism was shocking. While not universal, many of them relished the role of oracle on high and were uneasy with any change which would take them off of the top of that pillar.

On the actual topic at hand, my last doctors office had a system where I could see everything they wrote on a web portal and it was eye opening. The number of times I'd say X and they'd write Y was astounding. It was primarily the nurse and not the actual MD but I learned that I needed to be very careful about everything I said as the image of me that someone would have if they only read those notes was nearly the opposite of what I was trying to convey.

Weirdly, I've found the same thing but primarily with general practitioners. I started going to internal medicine specialists (Asthma, don'tyaknow) and have had much better treatment.

> The medical community currently has an abysmal record with treating chronic health problems.

Could you elaborate on this a bit more? What sort of 'chronic health problems' are you referring to, and what is it that the medical community is failing to provide (short of cures, presumably)?

Diet is the underlying cause of (or major contributor to)[0] the vast majority of heart disease, type 2 diabetes, many kinds of cancers, kidney and liver disease, auto-immune diseases, and probably Alzheimer's and other neurological conditions. There is research backing up diet-based interventions that positively impacts or cures all of these, but instead, patients are given pills that are barely palliative.

That diet plays this role is not, of course, a surprise to anybody. The failing that I see is that every medical body has chosen to follow the "everything in moderation" line[1] instead of addressing the health needs of millions of people. The diet being promoted by these organizations is causing these problems.

Imagine a world where the AHA, the ADA, the AND, the AMA, the IoM, and every other health organization came out strongly in favor of a science-based diet[2]. When you went to your family practice physician, your endocrinologist, your dietitian, or whomever, you would hear that diet is the very best treatment, and you would hear specifics on what foods you should avoid, what you can safely partake in, and what might or might not work for you, depending on you[3].

I'm not naive enough to think this would solve all of our problems, but the amount of crap food being eaten under the guise of "everything is OK in moderation" is, literally, killing people. You go into a dietitian's office, and they are advertising sugar-filled crap whose only nutritional benefit has been added during the processing. You go into a doctor's office and food is never mentioned, but you see 85 advertisements for the various drugs that will "manage your condition". That is fundamentally the wrong approach to these problems.

I think we had so much success with treating infectious diseases in the 20th century, that we believe anything can be cured with a pill or a needle prick. Unfortunately, a lifetime of bad inputs cannot be fixed that way.

0. Unfortunately, truly proving causation is very difficult here, and it is possible that there may be other causes but the lack of proper nourishment is preventing the body from healing the damage caused elsewhere. But if a diet can prevent and/or heal them, that is good enough for me right now.

1. It's hard to believe that it's not because of the millions of dollars in contributions given by companies whose food is making people sick or by the companies who provide drugs that provide said barely palliative care. Government policy also plays an important role here, and that policy is heavily shaped by lobbying.

2. Believe it or not, there are a lot of good studies that aren't epidemiological that provide pretty clear insight into what the foundation of a good diet is. This would likely have to be customized for individuals and circumstances, but that doesn't happen.

3. I'm not going to list these here because it will derail the conversation. PM me if you are interested in hearing them.

I'm interested in the foods you should avoid (my email is in my profile).

Are you referring to the problems caused by fructose / sugar? I've been watching Dr. Lustig's lectures and he seems to have good arguments, and your post seemed to echo some of his explanations.

Me too. maybe you could just post them here?

It's hard to blame doctors, when patients prefer to eat mcdonalds+pills over any kind of vaguely healthy diet from any model (be it ketonic or paleo or south beach or low fat or low sugar vegetarian or whole foods or whatever)

> There are a lot of reasons for that, but, IMO, the most glaring is people abdicating their health reonsibility to somebody else (whether doctors, pharmaceutical companies, or government guidelines). As people take control back...when they realize they have some control...they will become more healthy.

I couldn't agree more. I've blogged about this some time ago (shameless plug)

"We need to start taking care of our health data": https://medium.com/@iamhealee/we-need-to-start-taking-care-o...

But responsibility and control is only one side of the coin. There are numerous problems which are happening behind the curtain and people normally don't care about (EHR software compatibility, sometimes lack of EHR software, different attention to detail when doctors record the health data, etc.)

> The Internet started that, with patients able to become much more knowledgable about their own conditions

... or more deluded. I've heard of patients telling doctors that vaccines cause autism, fluoride causes impotence, etc. Because, you know, the internet said so. People who can't say what major body parts do should not tell doctors how disease processes operate.

I'm not saying you are deluded, but it seems common.