The perils of being your own doctor
theguardian.com
theguardian.com
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.
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.
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.
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...
But I wonder if the different provinces have a different system - I'm complaining about OHIP specifically.
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.
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.
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?)
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!
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.
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.
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.
I was speaking more generally about people who don't have significant past medical history who arrive with superfluous data.
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.
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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! :)
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.
-with another doctor
-as a conclusion from information on the internet.
I got this knowledge after at least 10 different appointments.
Luckily for me I found a document by an USA Kidney organization depicting procedures and satisfaction outcome.
Edit: Here is the study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2991578/
They referred me to a therapist, which eventually helped a lot.
That said, I still sometimes feel it, but these days I can forget entirely about it after a minute or two.
It took some time to fix the root causes, but even after that I didn't quite recover. Anxiety about possible panic attacks were stressing me out, causing me to lie awake in bed. Talk about a vicious circle.
Therapy and the book "Hope and help for your nerves" by Claire Weekes helped a lot. Occasionally it will pop back up but not nearly as bad as it once was.
"Hope and help for your nerves" by Claire Weekes is a classic.
That being said I believe mental health is still not diagnosed and treated well enough by modern health care systems. Took me more than 4 years of bouncing around from doctor to doctor before I found one who could help me.
Thus an orthopaedic surgeon would be foolish to self-manage his hypertension. He needs a general practitioner or a cardiologist to look after that domain.
A cardiologist would be foolish to look after his diabetes. He needs a general practitioner or an endocrinologist to look after that domain.
A general practitioner would be foolish to self manage anything significant. He would need another general practitioner who could look at his problem objectively or an appropriate sub-specialist.
1 - Make a quick search if something too common regarding symptoms, or something seems urgent to see a doctor.
2 - Don't diagnose, if you suspect something specific, I don't tell it to doctor, nor anyone.
3 - After search if this seems something really small, try some safe home therapies, otherwise, go to doctor
4 - Following the diagnosis, check it through the internet.
5 - Always check the medications, to understand the doctor's approach, aggressive or safer, or if medication is just placebo or pain-killers.
6 - Take the madications as prescribed, but combining the information on internet and impression on doctor, consult a second doctor if you feel necessary.
7 - If you see the doctor - just in case - not for serious complain, and the medication seems just for the symptoms not the reason don't use the treatment and see if something gets worse or better without them.
8- If something serious in hand, always search the internet for further treatment, whether lifestyle changes, and to see what might we expect. Resist reading forums, even though you may find really useful information in them, most of the time people who cannot heal, or had serious side affects on medications write. So this affects brain statistics on in a wrong way.
9 - If you have a specific disease, foundation-like sites on the specific disease do provide useful, organized, advanced, and most updated information.
Doesn't checking that basically immediately defeat the therapy itself? I.e. placebos work as long as you don't know they're just placebos.
Not necessarily: http://www.scientificamerican.com/podcast/episode/placebos-w...
[1] http://rarehistoricalphotos.com/leonid-rogozov-appendix-1961/Our western culture has a thing about getting babies and toddlers to sleep in their own beds and rooms from a young age. There are a wealth of self help books out there that new parents treat like a Bible for getting your babies to sleep. "Every child can sleep", "no cry sleep solution", "solve your child's sleep problems"; the list goes on and on. It's an entire micro industry inside the parenting industry.
After having two children, I've come to the conclusion that it's unnatural to get babies and toddlers to sleep apart from their parents. They don't like being alone. Getting out of bed and wandering down the cold hallway in the middle of the night to try and comfort a crying child, over and over again, should be telling you that something is wrong. Instead you think, "well John and Maggie's baby stay sleeps through, so ours should be able to as well. Let's try and keep them in their bed".
Before you know it, months sleepless nights has you physically and mentally exhausted. You're still trying to get up every morning to go to work and put in a full days work. When your child has a nap in the day, your wife gets the chance to catch up on a bit of sleep too. You accidentally nod off for three minutes at your desk after lunch, completely and utterly shattered. You come home, your wife still looks exhausted too, especially if she's breastfeeding, so you try and help out, changing diapers and helping to feed the baby. Finally it's bed time for your baby. You stay up until 11 since it's the only opportunity you and your wife have to doesn't some time together alone. The cycle repeats.
Finally you start to get ill, and often. Colds and minor ailments. If you're unlucky you develop worse. In my case I developed Ulcerative Colitis. A debilitating gastric psychosomatic illness. The first sign was a slight bleeding when going to the toilet. Within months I was bleeding so badly, I thought I had bowel cancer. I finally dragged myself to go to the doctor, petrified of what I might have. An unpleasant experience of a camera being shoved up my ass confirmed that I had UC.
"What's the cause, and how do we fix it?" I asked the doctor? "Nobody knows the cause and here's a bunch of medication that will calm everything down" was the answer. Come back in 4 weeks.
The symptoms did reduce and I'm still dependent on the daily medication, even now years later.
I've tried to change my diet, reduce my stress, but nothing send to improve it. It seems I'm a lifer. But I start to think about the "why" question.
The timeline was interesting. It started about a year after my first child was born. Her sleeping was a nightmare. We insisted on trying to get her to sleep in her own bed, in a room right next to ours. I was utterly shattered and run down at this point. I'd had one cold after another. My sinuses were completely blocked and my GP was convinced I had a bacterial infection in the sinuses that needed antibiotics. Two weeks after I'd finished the antibiotics, I had my first bleed. You can read into that what you will.
I believe that my psychosomatic illness was primarily caused by stress and exhaustion. As a result it was not able to correctly recover from the course of antibiotics, and the gut got itself out of balance.
That was my experience. I'm sure if we looked we'd find many examples of parents, especially fathers, who have developed various psychosomatic illnesses and other ailments after becoming fathers.
My advice to anyone becoming a parent is quite simple. Let the child sleep next to you, ideally in a co-sleeping bed. Getting up in the middle of the night and walking anywhere is fatal. Try to make sure that your wife doesn't have to work (or the father if the wife is working full time). At night decamp into a different bedroom. It makes absolutely no sense for both parents to be awake in the middle of the night dealing with the child. One of you needs to maintain a normal sleep routine if you're working a normal work routine. Otherwise i can almost guarantee that you're going to get ill.
If like to clarify that I think this can happen to mother or father. But I think it is often the father's in our western culture that are trying to be the modern father and work a full days work.
In conclusion, this applies to anyone having a lack of sleep over a long period of time. We forget how important good sleep hygiene is. For the people here working extremely long hours on their startups and burning the candle at both ends, this also applies. Just look at Margaret Thatcher and what years of 4 hours of sleep a night did to her.
Did you ever consider the possibility that having children also coincided with you getting older? That might seem obvious but many things can be explained by the inevitable march of physical decline.
On sleeping children, I agree that too much emphasis is placed on getting children into their own beds, but I also think that in the USA there is too much New Age claptrap about family sleeping as well. If the child is in your bed they could be asleep and slapping you every minute which isn't going to help you at all.
Mobile auto correct! Hopefully I've now fixed the typos!
Age could also have played a part in this. It is of course all anecdotal and extremely hard to prove either way. It's a gut feeling, if you'll pardon the pun.
A minor point, but
> Ulcerative Colitis. A debilitating gastric psychosomatic illness.
That's an out-dated definition of psychosomatic (from DSM III), and people shouldn't use it any more.
Traditionally UC was one of the psychosomatic disorders.
But ulcerative colitis is not in the modern list of "psychosomatic" illnesses. (You want to use either "somatoform disorder", "somatization disorder", or "medically unexplained symptoms" instead of psychosomatic.)
You have symptoms. Those symptoms are objectively observable. Those symptoms are explained by the diagnosis of UC. This rules out a somatoform disorder.
There is sometimes a psychological aspect to it: stress can make it worse. (And it being bad can make psychological health worse). But this is true of very many illnesses.
https://books.google.co.uk/books?id=aJEyGWlrV1IC&lpg=PA383&o...
Also, if you think that you have to stay up until 1am to get some time with your spouse alone to keep the relationship up, imagine what toll it takes (on a relationship) to have children in your bed all night every night for years on end (if you have 2 or three children one or two years apart and your children (or just one at a time) sleep with you until they're, say, 4, that's 7 years easily. And my 5 year old would sleep in our bed every night if we'd let her).
Look, I have no interest in rehashing this (for (mostly US/UK, it seems) new parents) hot topic here, and yes our children sleep with us every now and then when they're sick or just scared at night; but let's not start claiming that not sleeping in the same bed as your children will give you all sorts of chronic illnesses without evidence, however basic. There are millions of people developing chronic illnesses every year, a lot of them are bound to develop it while having small children.
He's saying try to get their kid to sleep in their own bed throughout the night (as opposed to any number of alternatives, not just co-sleeping) led to a dramatic increase in his stress level, which may have influenced his development of an autoimmune disorder.
Such diseases are complex and have potentially multiple factors that bring it in to play. Sleep deprivation is just one of the potential factors.
Essentially your last paragraph boils down to 'it's better for ones health to co-sleep because it reduces stress which is a contributing factor to my disease and others', which is probably true in the most generic sense, but not in a sense that is actionable or can be directly reduced to co-sleeping in general. By that I mean, the same can be said of having a co-worker who chews his food very loudly throughout the day, or living next to a railroad, or any other of millions of things that can cause stress.
I mean, you are saying that co-sleeping is 'better' (even for small values of it) for your health because of stress-related reasons, right? (my whole point hinges on that assumption) Well, my point was that there is no data to even suggest that, or that it's a net negative after taking everything else into consideration. It's just an anecdote, one that is easily explained by the law of large numbers, nothing to draw a normative conclusion from.
Not trying to pick a fight, and I realize that you're not posting a peer reviewed article.
If any parent has unexplained symptoms it must be caused by their children sleeping alone!!
[1] https://www.reddit.com/r/CompulsiveSkinPicking/comments/4wss...
So yeah, if you're worried, you can test yourself and get a reasonably idea of whether you have an issue or not. That doesn't mean you shouldn't still go to a doctor, especially if the readings are high. But if you test yourself 10 times and never get a reading over 100 (just to make up an example) it's pretty safe to assume you're not diabetic (note: this is not medical advice). It's a little bit harder to confirm diabetes though, as even a non-diabetic person can see brief spikes in their blood glucose - in particular after eating a meal with a high glycemic load. Generally speaking, it's probably best to test yourself when you've been fasting for a while, perhaps when you first awaken in the morning.
OTOH, if you get any reading over, say, 200 or so, it's very, very, very likely that you're diabetic. A non-diabetic person will almost never see a reading that high, even after chugging a bottle of Coke or something.
The other good thing about diabetes, IF it's type two, is that it is often treatable without insulin injections and may even be treated with nothing but diet changes and exercise (eg, weight loss).
Source: am diabetic.
There's an even cheaper way, if you are willing.
Taste a drop of your urine. If it's sweet then worry.
In the past this was part of the job description of every Dr. Tasting your own urine, OK, I guess. But someone else's? Yich.
After the appointment he spots said cardiologist in the car park smoking.
As you said, they're just people too.
Your study does not comply with the average perception here in Europe though