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Re:The perils of being your own doctor by tominous on Wednesday August 10, 2016 @11:30PM (#12266170)
This could just as easily be about the perils of knowing how to look up symptoms on the web.

If you're reading Hacker News you're probably used to reading fast, integrating new knowledge into a mental model and applying it all to solve the problem at hand. You often have to be an "instant expert" in everything. So the temptation is to be an instant expert in your own (self-diagnosed) condition.

Here's my advice after spending way too much time with doctors over the last year (since my wife was diagnosed with cancer).

1. Knowledge: A doctor will have far more general medical knowledge and experience than you. Your GP or specialist should be the bedrock of any diagnosis or treatment. However, it is absolutely possible to read the literature and get a more current or targeted understanding of some of the nuances of your particular disease. Don't be afraid to discuss them with your doctor, even seek second and third opinions, but don't just rely on your own judgement instead of theirs.

2. Motivation: Doctors are conservative: they need to avoid liability and maintain good relationships with their peers. As a patient you will have a different risk/benefit calculation. In some cases you will need to push your doctor to perform that specialised test instead of just offering reassurance, or to try that experimental treatment instead of the "reasonable futility" of standard care.

3. Symptoms: You know best your own symptoms, but you may not have the objectivity or experience to understand them and compare them to other people. You should document them as much as possible, maybe even graph them or make charts, to make this information accessible to your doctor. I've found that a simple timeline containing symptoms, measurements and interventions can be incredibly useful in tracking a condition.

Re:The perils of being your own doctor by Shinkei on Thursday August 11, 2016 @12:08AM (#12266262)
Wow. I am a physician and this is perfect.

1. You just need to read about the Dunning-Kruger effect. Enough said. https://en.wikipedia.org/wiki/Dunning%E2%80%93Kruger_effect

2. Each physician has their own motivations for this one... some liability, some internal moral code, but some just understand that science is about being objective. That being said, prevailing wisdom is that medicine is as much an art as it is a science.

3. Yes, but be careful. Try to establish a relationship with your provider before pulling out the graphs and spreadsheets.

Re:The perils of being your own doctor by arpa on Thursday August 11, 2016 @03:57AM (#12266793)
If you read about the Dunning-Kruger effect, it is essential to also read its' criticism, very aptly summarized here: http://www.talyarkoni.org/blog/2010/07/07/what-the-dunning-k... (posted here numerous times; the truth is, well, we all suck at heuristic self-assessment, regardless of our skill, sorry). It's always easy to write off other people as "incompetent", blame Dunning-Kruger, and just ignore what they say and think they know. A lot of physicians tend to do that, and, frankly speaking, it just comes off as arrogance and does not help confidence at all.
Re:The perils of being your own doctor by aangjie on Thursday August 11, 2016 @12:55AM (#12266351)
After a recent argument with my wife's doctor, I decided to write a rationality style guide for new doctors. Feedback from practicing Doctors is hard to find. Please comment. Here's the link http://lesswrong.com/lw/ntq/advice_to_new_doctors_starting_p... .
Re:The perils of being your own doctor by Shinkei on Thursday August 11, 2016 @01:30AM (#12266423)
It looks great! I will read it over the next few days.
Re:The perils of being your own doctor by icantdrive55 on Thursday August 11, 2016 @04:44AM (#12266908)
Let's not forget good insurance, and large amounts of money.

I hate to be that guy, but I have been to too many unneeded office visits over my years, or have been told flat out Dr. Whatever charges $350/hr. Hour? It's always just a short visit. As, I've gotten older, I don't want to spend to much time with them. The shorter the office visit the better.

Yea, and I know, your physician lives are so terrible. You had to pay $400,000 for school. You had to get through that residency in which you where hazed, by other Doctors. You have to listen to people whine, and complain--in many cases because they are sick, and in pain. (Get ready for the "I don't treat pain" Doctor", and the FDA is on their side. I don't feel like debating this one either. Too tired.)

Yea, you guessed right, I'm no fan of the American Doctor. I don't like the system? Or, I just don't like American Doctors, with that ego. An ego that seems undeserved after getting into med school, in so, so many cases.

On another note, I'm shocked at how seemingly little advances medicine has made in the last 30 years. Advances that help the patients. Not theoretical advances that look nice on paper.

I smile, and kiss their ass, but there's no love, nor even much respect anymore.

Signed,

Alotofpatients

(I'm not comming back to this post. I will add this, I used to think older doctors were better. I think I was really wrong. In my life, I have met one doctor who appeared to get better with age. He had some unusual medical issues throughout his life that appeared to make him care?)

Re:The perils of being your own doctor by cmdrfred on Thursday August 11, 2016 @08:06AM (#12267507)
I take home about 32k a year. I also have asthma. I will have it until I die. With the insurance my company offers my medicine is 150 dollars a month on top of the $175 a month fee. To get the prescription I need to pay another $75 dollars every 6 months to the doctor (At the end, They dident even bother with the pretense of busting out the stethoscope anymore I'd come in sit down and they would write the script) I buy the same medicine from India for $30 without a prescription online. It's a scam pure and simple. The choice for me was either drop the insurance and buy a house or rent and pay for insurance that covers little and costs a lot.
Re:The perils of being your own doctor by no1youknowz on Thursday August 11, 2016 @08:43AM (#12267739)
I too have asthma.

When I was in the US, I needed a certain type of inhaler. It cost $150. I kid you not, I was furious! I had to pay knowing full well, the same inhaler cost £5 in the UK. Talk about a serious markup!

Now back in the UK. Before I go back. I will visit my doctor about 5 times and stock up on them. Bring as many as I can in the UK so that I never run out again!

Re:The perils of being your own doctor by cmdrfred on Thursday August 11, 2016 @08:58AM (#12267822)
People claim that they "Spend so much on R and D that they need to be able to charge these prices". My drug albuterol was in use 100 years ago.
Re:The perils of being your own doctor by squeaky-clean on Thursday August 11, 2016 @11:48AM (#12269198)
Similar situation here. My inhalers are $40 each after insurance and last me about 30 days. And then I still have to pay to visit the doctor, who refuses to give me more than 3 at a time.

Nowadays, I have a friend from Cuba who also has Asthma and can buy them for less than a dollar with no prescription. So I just buy him a case of beer and get a year's worth of Salbutamol inhalers.

I can't find somewhere as cheap to get my Advair, but I find I don't really need that one.

Re:The perils of being your own doctor by davidjnelson on Thursday August 11, 2016 @12:54PM (#12269813)
Have you checked the prices at the Costco pharmacy? Usually 10-20x less.
Re:The perils of being your own doctor by Maskawanian on Thursday August 11, 2016 @08:43AM (#12267736)
Out of curiosity, which vendor do you use?
Re:The perils of being your own doctor by cmdrfred on Thursday August 11, 2016 @08:55AM (#12267806)
So they pop in and out of existence from time to time but they are all basically front business from what I can tell. support-rx.com is the 'support' site that you get sent to after you order (I've ordered from 5 or so 'front businesses' and always get sent there), but to actually order anything I go to canadapharmacy24h.com currently. Shipping is costly so I buy in bulk, it takes about 2 weeks to get to my door. When I was working as a cook these companies saved my life, this is what capitalism is all about.
Re:The perils of being your own doctor by Shinkei on Saturday August 13, 2016 @12:28AM (#12280273)
Well, I'm sorry you aren't coming back to this post because I think you should read the reply.

The healthcare system has problems, but NOT because of most doctors. Yes, just like in every field, there are unscrupulous individuals... but most of the people I have known and worked with are not sociopaths in white coats. Just follow the money... Medicare Part D was the single biggest travesty visited on the American people in recent memory. It was literally a theft of our tax money and a gift to the drug companies. While Insurance companies, hospitals, drug companies, devices companies, etc. continue to increase gains and conspire to steal from the healthcare system (inversions, mergers, price-fixing, the list goes on...) physician pay actually represents a small percentage of healthcare costs. (Depending on who you get the numbers from, it is about 10% of the total). Believe me, when I have to get healthcare, I see the same problems you do. I've waited on hold, been over-billed, late appointments, all of it... even medical complications. The fact is, the bureaucracy is strangling any attempts at improvement.

I'll give you an example, I work in a bunch of different healthcare systems and each one of them is required to independently verify my credentials. Everything from my medical school diploma to my training and license. It requires primary source too! So every hospital--even different hospitals owned by the same system--has to do this incredibly redundant and wasteful process. Not to mention that it does nothing to ensure quality. So here's a whole army of people doing something that should be a simple database query that takes 1 minute. That's increased cost. There are these companies now that an insurer can hire to field imaging orders and determine which are appropriate and which are not. If they save the insurer even $1 over what they are being paid... then they win. Meanwhile, that's maybe $1-2 million that could've just been used to pay for care... instead it's going to a middleman simply to DENY care!

Believe me. Your frustrations are justified... but don't hang the physicians out to dry. My generation was not the architects of this disaster and we are suffering from it too. We are still individuals, wage-earners. We are not the corporations that would happily merge and invert our way off-shore. They are the real conspirators in this.

Re:The perils of being your own doctor by kranner on Thursday August 11, 2016 @05:15AM (#12266976)
Why #3?
Re:The perils of being your own doctor by Shinkei on Saturday August 13, 2016 @12:14AM (#12280238)
Because--for better or worse--this raises red flags I think. I could see a lot of people getting defensive.
Re:The perils of being your own doctor by kranner on Sunday August 14, 2016 @10:48AM (#12285771)
I'm sorry but I don't understand. What red flags? If I come into the hospital with detailed data on what pills I took and how symptoms varied from day to day (without offering my own interpretation as to causes), compared to coming in with no history, how is the former a cause for suspicion?

As a haemophilia patient who carries a decade+ log of infusions (Factor VIII in my case) I have never been met with any kind of suspicion or defiance by doctors. In fact this has persuaded doctors in unfamiliar hospitals (when I have a bleeding episode while travelling) to give me only as much Factor VIII as I have needed historically, and not a much larger amount based on my body weight. (Large amounts of Factor VIII seem to be a trigger for inhibitor formation so I am interested in taking as little as needed.) Factor VIII assays on the other hand seem to present a different result every time I get them done (varying from <1% to 25%).

I can assure you that any data geek who bothers to note this stuff down is very, very concerned about keeping accurate logs.

Re:The perils of being your own doctor by Shinkei on Saturday August 20, 2016 @12:01AM (#12325133)
Ah, I think I misunderstood your situation. Yes, your specific case I think warrants that kind of specific, careful monitoring.

I was speaking more generally about people who don't have significant past medical history who arrive with superfluous data.

Re:The perils of being your own doctor by James001 on Thursday August 11, 2016 @12:04AM (#12266251)
I'm from Canada, and all I can say is I wish the doctors up here actually listened to your opinion on your own medical condition.

While it is important to consult and listen to doctors, I do think people trust their doctors too much. People should always field second opinions, especially before major interventions. Also, people shouldn't discount their own understandings of their condition.

But seriously, up in Canada I feel like we have a 3rd world medical system for dealing with chronic health conditions. For acute medical conditions, we're amongst the best in the world. But if it's chronic? Or if we cannot diagnose it? Good f'n luck, my friend.

Re:The perils of being your own doctor by idra on Thursday August 11, 2016 @03:37AM (#12266751)
Problems with dealing with chronic health conditions seems to be more of a trait of modern Western medicine, which in a lot of cases is about treating symptoms only. In a first world country with free medical care it is very hard to actually die, but you may quietly suffer all your life and won't be treated because it is not perceived as being critical, and critical patients have priority.

If only there was a more holistic approach to treatment actually backed by science. For example, Chinese traditional herbal medicine is supposed to treat the underlying cause of problems, but unfortunately it is based entirely on myth and superstition. The thing is, it actually works sometimes, and helps people who have been told to "learn to live with it" by Western doctors.

Re:The perils of being your own doctor by blacksmith_tb on Thursday August 11, 2016 @01:36PM (#12270191)
My general impression of why people like (and are willing to pay out of pocket, often without any kind coverage) for alternative medicine is that they feel like they are being listened to - ironically they are paying by the hour for that, too, but the rates are better.

Traditional Chinese Medicine is an interesting mix, I wouldn't say it's "based entirely on myth and superstition" though it has plenty of that (hence the ghastly use of bear bile, tiger bone, etc. [1], though at least there are some attempts at reform), it also is partly the result of hundreds of years of trial and error experimentation with a wide range of plants on a very large number of people (proto-scientific, at the very least). It seems likely that some of its efficacy comes from placebo effect (but many pharmaceuticals aren't much better).

1: https://www.sciencebasedmedicine.org/asian-bear-bile-remedie...

Re:The perils of being your own doctor by cpncrunch on Thursday August 11, 2016 @11:06AM (#12268785)
>Or if we cannot diagnose it? Good f'n luck, my friend.

I think this is a problem for all doctors. In some countries (the USA) they'll happily spend tens of thousands of dollars doing MRIs and other procedures to rule out various conditions.

The main problem seems to be chronic pain/fatigue conditions, which in many cases are stress related. Patients naturally want to rule out other conditions, and many patients also don't like the stress explanation because they incorrectly feel it means the illness is "all in their heads" (or perhaps they just don't understand how stress causes physical symptoms).

I live in Canada and generally I find the medical system is very good, and evidence based.

Re:The perils of being your own doctor by stuxnet79 on Thursday August 11, 2016 @09:59AM (#12268251)
Canada's gatekeeper model can be infuriating. I have various issues that I'd like to address but I've become so fed up with the long waiting times, and often lazy doctors that I keep deferring visits. It's reached a point where I don't trust or respect doctors at all.

But I wonder if the different provinces have a different system - I'm complaining about OHIP specifically.

Re:The perils of being your own doctor by tim333 on Thursday August 11, 2016 @05:54AM (#12267071)
2. Motivation surprised me in real life. I had a friend with cancer and was surprised the doctors went for the "reasonable futility" of standard care which had about a 0% 5 year survival rate when there were less conventional treatments with maybe 15% survival.
Re:The perils of being your own doctor by stordoff on Thursday August 11, 2016 @03:39AM (#12266753)
This sounds reminiscent of my own experiences (three plus years dealing with an as yet undiagnosed condition(s)). Regarding your first point, the most useful thing for me was finding a doctor I work well with - being able to suggest a potential cause/treatment without it coming across as "I'm the patient; I/The Internet know best" has been extremely useful. Most of the time I've overlooked something (I'll never have the same knowledge/experience base as my GP), but the few cases where it was relevant and hadn't occurred to my GP have lead to better treatments.
Re:The perils of being your own doctor by Noseshine on Thursday August 11, 2016 @04:51AM (#12266925)
It's also important to find the right doctor, and this can be very hard. I had always been extremely trusting and never cared about anything - when it came to health, go to the doctor, do what they tell you to the letter, no need to think about anything I have no clue about.

Until the doctor - a professor even - gave me advice in a strange crisis that made no sense. He wasn't wrong, he gave exactly the advice that is current "state of the art" for the condition he diagnosed. The problem was, where did that condition come from? The doc didn't care, his job was done. He had a diagnosis and he gave the recommended treatment suggestion (which consists of working on the symptoms, and very badly so, because they don't understand that condition even though it's quite common). Following his treatment I got a huge candida outbreak (and I don't have chemo or AIDS) the symptoms of which he completely ignored. I later got nystatin and then even got diflucan prescribed for three weeks (it wasn't a systemic infection and yet that stuff helped greatly), both those drugs with huge positive effect, but candida isn't a cause but itself a symptom.

I dug deeper and found the root cause. Then I went and found doctors who actually knew something about it. I got treated at a university clinic by a researcher doc with chelators against chronic mercury poisoning. 5 years later: miracles happened. The last one of many was that the endocrinologist put me back on the table to repeat his ultrasound of my right thyroid, which for over twenty years had been double-size and with a 4mm cold nodule - because the nodule was gone, and the thyroid was almost back to normal size. "I'm amazed" was all he could say several times. During chelation I had had "tissue pain" (can't describe it) for a few weeks right around the right thyroid. There is a lot more, like the psoriasis and the tinnitus and many of other long-term problems that just disappeared.

So I'm glad that I ignored the doctor(s), very, very few would find a chronic heavy metal poisoning. Ignoring a doctors opinion and going out on my own was the hardest thing I ever did in my life.

Internet forums, while indeed and truly often horrible, did help me find the problem. You have to filter out over 90%, but one doesn't even have to be an expert to detect the BS. The rest can be valuable when your doctor doesn't find anything. It's not like doctors couldn't find it - it's just that they don't have the time. The waiting room is full, how much time is it worth spending on the problems of any given patient? Especially "functional" problems where you can't actually see anything even with biomedical imaging.

-

Completely unrelated to both the previous story and inside that story to the problem I had, I started learning about medical topics, actually out of boredom initially and then got drawn into it. Hundreds of lecture hours and courses later I now understand the basics of anatomy, physiology, had to learn lots of chemistry, org. chem., biochemistry, lots of statistics (never played any significant role in my CS study or in my life), and neuroscience, over 70 courses in total half of which were medical topics. It feels GOOD to know those things, I recommend it to anyone who has some time left for learning. Neuroscience especially should be a must for CS/IT folks, try https://www.mcb80x.org/ for a start and Medical Neuroscience (https://www.coursera.org/learn/medical-neuroscience) as a follow-up, one of the best courses out there mostly because the professor teaching it is wonderful. Don't just learn functional programming with Haskell or Scala, learn brain! :)

Re:The perils of being your own doctor by manmal on Thursday August 11, 2016 @05:42AM (#12267033)
I'm very intrigued about your mercury poisoning - how did they find out? I read that hair analysis is not so accurate, but everybody makes different claims.
Re:The perils of being your own doctor by Noseshine on Thursday August 11, 2016 @06:20AM (#12267134)
The diagnosis is mostly done by indirect means and by testing if the antidote does anything. Chronic mercury poisoning is very hard to diagnose by testing because there is no way to measure how much mercury is stored in your body except by cutting off pieces from various organs and sending them to a lab - obviously not feasible. There is the chelation challenge method, for example the "DMPS test", where you are given a dose of the chelator and then they check urine for heavy metals. The problem is most chelators only work in extracellular space. There are studies showing positive results of such a test do correlate well with heavy metal intoxication. Here is a summary paper from a lab - sorry, German: http://www.labor-bayer.de/publikationen/11_DrBayer-DMPS-2008... You can also look at indirect indicators, for example my WBC count was quite low (and no clear reason presented itself) and a few other values were a bit wacky too.

Anyway, as for myself I was "lucky", I had elevated mercury levels in urine and in blood. I had hair tested too and mercury was very high. Since it's unlikely mercury in hair came from an outside source that directly (i.e. not through your body) contaminated the hair sample it can give a good indication that the person was exposed to mercury - it doesn't tell you anything about how much is in the body. After all, if it's in the hair it's a good sign because it's being excreted. Also, different labs may very well give you different results when you send them hair taken from the same person at the same point in time - this has been tested. What works better than trying to interpret an individual lab test is a trend: Take the same test each year - using the same lab of course - and look at the change. And always in the larger context, any single value of anything is rarely meaningful just by itself.

So after an initial diagnosis what completes a diagnosis is to start a probationary treatment with the appropriate chelator and see what happens. That's not unusual, a lot of treatments prescribed by your doctor are of that kind. Assume a diagnosis and test it by treating for the diagnosis.

This all goes into the much larger issue that we are far from knowing the effects of levels of chemicals a) individually at low doses that don't show an immediate effect b) cocktails of several substances at low doses. We know quite a bit about effects of substances on a molecular and sometimes on a cellular level, but that doesn't translate well to knowing what happens long-term and at doses that don't have a clear immediate effect in real life. I can't find the reference any more, but a few years ago I read a study of LD50 values (lethal dose - it is the amount of the substance required to kill 50% of the test population, rats for example). They found that when you combine lead and mercury the lethality if about a thousand times higher than each one by itself. So of what use are individual legal limits? Their main purpose isn't medical but administrative, at what point is the cutoff point for effort vs. effect, e.g. money spend on getting the last bit of lead out of pipes and houses vs. beneficial effect. How long did it take for lead to be taken seriously? That was a lone fight for a long time, today consensus is - and I quote a professor of public health from a course on water treatment I took who presented the studies - that there is no known safe lower limit. Doesn't mean we can get to zero everywhere, so we do have an official limit for good reasons. I always cringe when people use those limits as arguments in a health debate though as if they were some sort of objective proof that there is no problem and anyone expressing concern is a tinfoil hat person.

Re:The perils of being your own doctor by manmal on Thursday August 11, 2016 @07:50AM (#12267424)
Thank you for this extensive answer! German is no problem for me (Austria :)). I might get a hair test now.