I literally used to get laughed out of the clinic, told I was a healthy young male and just needed to exercise more. After a decade of this, I was finally diagnosed with gout, something doctors had just been lying about testing for. No one could believe someone could have gout in their 20s (It's been developing since my late teens and I've generally had arthritis my entire life, since I was a child).
It took a physician's assistant, who happened to see me one day when both of my doctors were on their third extended vacation of the quarter, to hear my plight, take my suggestion of gout seriously, and do the leg work, also revealing to me that "full test panels" don't include uric acid by default and that my doctors had been lying to me about their thoroughness.
The assistant was also massively more knowledgeable about the disease, its history, the history of treatment, etc., and disease in general, than either of the two doctors running the clinic. Really opened my eyes.
This is why, although I know there will be problems with it, we should get AI and blood tests more accessible for individuals. Accessing the healthcare system for "I know I'm not 100% but ... I don't have anything specific wrong like a broken bone" is basically a crapshoot - and a totally stupid one.
I have seen young men get diagnosed with gout, but they were Islanders (Samoans and Maori in my case), who I believe are at a higher risk so doctors are more aware of it
Funny enough I also got diagnosed with gout once in my 20s. I have always had somewhat bad toes/bunions (probably partially genetic, and partially wearing only tight soccer shoes as a kid) and I went to a wedding wearing some new leather shoes that I hadn't broken in yet. The next day I woke up with a fever and horrific pain in the sides of my toes. Went to doctor and they did some tests and were also seemingly surprised at the results indicating gout. They asked me to come back in a week to double check, and by then my symptoms were gone and the tests no longer indicated gout.
> They asked me to come back in a week to double check, and by then my symptoms were gone and the tests no longer indicated gout.
Ha. Do you still have symptoms? If not, yea just a bad initial diagnosis. If you do still have symptoms sometimes though, it should be noted that gout is hard to test for when you're actively experiencing aggravated symptoms, as the uric acid crystals are lodged into your tissue and not freely available in the blood stream / urine. This exacerbated everything quite a lot, as when I was much younger I definitely got uric acid tests done when my symptoms were at their worst.
I wonder if the medical textbooks only mention gout as a historical curiosity and not as a modern day disease. I have an older relative with gout, have met someone in their 30s with gout, and yesterday heard a story about an acquaintance with gout, so it's not that rare anymore.
I think it's just typically seen in older men. In fact, only something like 5% of gout sufferers are women. But a 2023 study says [0]:
> The global gout prevalent cases in individuals aged 15–39 years was 5.21 million in 2019, with the annual incidence substantially increasing from 38.71 to 45.94 per 100 000 population during 1990–2019
So while marginal, it is either getting more prevalent for younger men over the last 30 years, or we are getting better at catching it.
What's interesting is all of the older men I've met with gout describe moderately uncomfortable pains, I was surprised to learn that my case is exceptionally intense, debilitating enough to be a physical handicap at times (along with sciatica, fused discs, flat feet, some other little things and possible fibromyalgia) which has plagued my life since I was in my teens.
It's been a horrendous disease that has greatly impacted my ability to be as active as I'd like, and sometimes during a flare-up it's extremely difficult just to walk to my bathroom. Flare ups sometimes happen constantly and sometimes I get a month or two of reduced symptoms.
Another thing is that I don't eat meat, and I rarely drink, which are the two biggest aggravators of symptoms. When the doc told me I needed to cut those things out I laughed, and they said they were very surprised that my symptoms were so bad given that I already avoid the most offensive foods.
I'm also currently trying to pin down another autoimmune disease. From what I know, I don't speak to him, but my father has been in and out of the hospital his whole life and it took decades to pin it down as lupus. I am wondering if he lacked the butterfly rash because I don't have one, but otherwise have basically every symptom of lupus, but it also could be fibromyalgia or even MS. Combined with the gout though, I feel 40 years older than I am, almost every little tissue and bone and muscle hurts from head to toe (literally toe, gout keeps one of my toes at a constant level of pain).
Doctors are trained to be arrogant, dismissive of unknown unknowns, and with a terrible understanding of statistics.
Add to that:
- They have a lot of patients and not enough sleep.
- They need to pay back a huge student loan.
- They hold terrible responsibilities and risk being sued.
- They don't have much time for themselves, let alone update their knowledge.
- Most patients are overreacting idiots, so it's a winning strategy to ignore what they tell you most of the time.
- They are not trained nor selected for empathy or open-mindedness.
And you get so many medical errors.
Basically, you have to double-check everything they do, and endure their cynical rebuttal when you make suggestions, ask questions or try things they didn't request.
I had to face many such errors myself, two almost lethal.
When you can, shop for one that is both good and is open to discussion. But even then, there is a limit. At some point, your doctor WILL fail you, so you have to take responsibility, usually when you're weak and at a low point in your life.
And if you are wrong, people will tell you you should have listened to your doctor, but if the doctor is wrong, well, shit happens.
One of my practitioners is a friend of 15 years, I literally lived with him, he is considered top in his specialty. I'm surrounded by people working at the hospital.
He saved my life once.
Even that is not enough. I still have to double check stuff every time.
> At some point, your doctor WILL fail you, so you have to take responsibility, usually when you're weak and at a low point in your life.
The two times I've been hospitalized in my adult life, I've been incredibly thankful for my parents stepping in to act as my patient advocates, including pushing back on doctors when necessary. (The first hospitalization was guilliane-barre and the other a rare hemotological condition, so i wasn't in a great place in either scenario to advocate for myself).
A pediatrician in my family has said that patients get significantly better outcomes when they have a patient advocate, because even if they are directly related to you (i.e. parents or sibling), they are going to be far better at being objective on the situation than you, the person being affected by it, is
It's purely anecdotal but does have some provenance going back at least to the 19th century, with one of the early liver specialists.
He was reportedly at a cocktail party one evening when a messenger burst in and informed the esteemed doctor that one of his patients appeared to be dying from a heart attack.
"My good man," he replied, "that can't possibly be true. When I treat a patient for liver disease he dies of liver disease."
I suspect AI chosen by an organization trying to maximize profits could be really bad.
This is an industry that places people’s lives as vastly less important than minor scheduling issues as someone working 12+ hours is seen as perfectly normal.
One can debate its merit right now, the upside / downside equation. In 10-20 years? Game over. Doctors will largely be the physical space touch point. AI will in effect use meatbags to interact with the patients.
I think I'm feeling the effects of Gell-Mann amnesia here. The same is said about software engineers, but I'm not as confident as you that there won't be a need for the profession in 10-20 years.
It makes more sense when you realize most of the time it’s not <disease>. Doctors see thousands of patients per year and 99% of them have common conditions with straightforward diagnosis.
Add on top vague symptoms that can’t actually be measured and are subjective and you end up with challenging diagnoses.
I do agree that patients should educate themselves and advocate for themselves. Doctors aren’t perfect and they don’t know everything.
But it helps to have some perspective of what doctors deal with on a day to day basis.
"Basically, you have to double-check everything they do, and endure their cynical rebuttal when you make suggestions, ask questions or try things they didn't request."
I had frequent headaches and the student health service referred me to a well-known and very respected hospital for tests as an outpatient. The doctor to whom I was referred was a well-known neurologist with papers to his name—probably the most eminent neurologist in the country at the time (even now, some decades after his death, his name appears on Wiki as someone of eminence).
He then sent me for a series of tests at the hospital and they extended over a number of days although not consecutive (which was inconvenient). Those tests were rather exhaustive and included amongst others neurological tests, brain x-rays, electroencephalographs and testing my eyes including injecting fluorescein into my veins to improve the contrast of the photos they took of my eyes/retina—afterwards I was pissing out that brilliant florescent yellow dye for the better part of a day.
Keep in mind that those tests involved other doctors and clinicians who would have examined the neurologists report, so decisions weren't taken in isolation.
After all that and multiple visits to the hospital he said that they could find nothing wrong with me and suggested that I be admitted for at least three days for further tests! I declined as I was about to have uni exams and never did return to be admitted.
Several months later I visited a local GP practitioner because I'd had a bad dose of the flu and after he'd dealt with that I mentioned my ordeal at the hospital.
He was palpably furious and mumbled quietly under his breath which was just audible enough for me to hear "fucking idiots". Within a split second he went on to say "presumably during all this testing no one actually suggested that you might have migraine?" to which I replied "no". That made him even more annoyed.
He then prescribed a common Parke Davis formulation called Ergodryl, which, back then, was a common go-to drug for migraine, it's a formulation of egotamine tartrate, caffeine and diphenhydramine (a well-known antihistamine).
Problem solved, that drug completely killed my headaches. I've never forgotten that incident and although I've experienced similar inept performances I've never experienced one on that scale again. Ever since I've never fully trusted a medical diagnosis unless confirmed by second options and backed up with tests. It pays to be not only cautions but also to do one's own independent investigations.
From my experience, not all doctors are mediocre to the extent that I'd wished I'd seen another, some I've visited are quite exceptional and have an innate ability to cut to the core of a problem immediately, or at least start investigations on the right footing. Unfortunately, from my experience, they seem few and far between in numbers.
I was once introduced to a state director of health (the State's top medical officer) through a common interest outside of medicine and I got to know him relatively well. Some time later I mentioned that incident and he said to me without hesitation that he would not trust 90% of his profession to make a competent diagnosis, and he went on to say that if I were ever to be stricken by some dangerous life-threatening disease that I was to give him a call and he'd provide me with a short list of the competent ones who he'd trust—one's that he would go to if he became sick. Fortunately, to date I've never had need to take up his offer.
Frankly, for the lay person this has to be a significant worry. How on earth does one know who is competent and who is not, especially if it's at short notice?
American doctors are also reluctant to do rabies shot. Yeah they are expensive, the risk is low and there are ways to rule it out, but I'd rather not die. Other countries can get them anywhere for cheap. Here...thousands of dollars in the ER. One reason could be its just not administered enough. The other is, for profit American medical system because no one wants to die.
"Other countries can get them anywhere for cheap."
Those of us outside the US understand the US health care system is more profit orientated than many other countries but we cannot understand the huge price differentials, they're often huge in comparison with many others. Surely figures that high are nothing other than price-gouging. (Even if demand is low and the stuff has to be imported the additional costs can't be that costly. Surely not?)
So why doesn't consumer and or monopoly law kick in to stop it (as it does in many other places)?
Because the US has absolute garbage enforcement of consumer safety and anti-monopoly laws, and those laws aren't exactly strong or clear to begin with.
Health-care industry lobbyists spend huge sums to convince lawmakers that they're not price-gouging and _any_ kind of price control is somehow illegal and/or will destroy the economy. This allows them to keep prices high, colluding with health insurances to make deals that incentivize buy insurance (direct-to-patient prices for many medical things are much higher than the prices that the insurance companies pay). Prices high enoguh to make it worth spending so much on lobbying.
It's completely backwards and very anti-consumer/anti-patient, but money has such an outsized influence on our politics, it's ridiculously difficult to get changes made that actually benefit the average citizen.
Yeah, I sort of thought that. But the US is such a competitive place one would have thought competition would have kept prices down. What seems to be happening is the nature of health care allows it to be a 'closed shop' so they do what they like.
FYI, I'm in Australia where we have Medicare which is a universal health care scheme† supported by government taxes. It's not perfect and could always do with more money but people here love it. Tampering with it in a negative way would be electoral suicide for a government at election time.
That said, a visit to a GP is only partly paid for by the scheme (about 2/3)—that is unless the Dr 'bulk-bills' all accounts to the scheme and many don't. Bulk-billing allows a patient to walk out of a surgery without paying anything.
That long preamble lets me lead on to something you may not be aware of although many of your countrymen would be. Some years ago the government made changes to the Pharmaceutical Benefits Scheme—which is the drug store equivalent of Medicare where drugs are heavily subsidized—because many Americans who were visiting here used to stock up on prescription medicines and take them home because the price differential between here and the US is so great. Incidentally, COVID vaccinations are also free as they're covered by the scheme.
Previously, anyone could take a scrip to any pharmacy and have it filled without ID, now one has to have one's Medicard card with one or have its number on file and the Dr's script has to match that ID.
The pondering issue for us is why doesn't the US population rise up on mass for a better deal?
_
† Some years ago I heard an American (I think it was Michael Moore) say that Roosevelt had intended to set up a similar universal health scheme but he died before he could implement it. Is there any truth in that?
Certain things are way under-diagnosed, especially anything relating to a chronic condition that does not have an easy biomarker. Doctors get cynical about their patients.
Chronic Lyme Disease is a popular choice for hypochondriacs (or maybe they're actually right, who knows?) so it gets raised eyebrows when people think they have it.
The majority of doctors I've interacted with, with a low-single-digit number of notable exceptions, seemed to estimate their own intelligence at about 1 or 2 stddev higher than it actually was. Combine this with (I imagine) a large number of legitimately stupid and/or hypochondriac patients, and you have a recipe for really shitty diagnostics.
It took a physician's assistant, who happened to see me one day when both of my doctors were on their third extended vacation of the quarter, to hear my plight, take my suggestion of gout seriously, and do the leg work, also revealing to me that "full test panels" don't include uric acid by default and that my doctors had been lying to me about their thoroughness.
The assistant was also massively more knowledgeable about the disease, its history, the history of treatment, etc., and disease in general, than either of the two doctors running the clinic. Really opened my eyes.