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Bedridden for 11 years, he discovered a surgery for his adrenal condition

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Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#31

I don’t understand why it took so long for him to get this diagnosis. Elevated adrenaline levels are easily tested for in a simple catecholamine blood test. That test is among the basic panel done when one sees an endocrinologist. It may not have pinpointed his adrenal medulla as the problem, but it should have pointed them in that general direction very early on.

Because doctors in the western medicine tradition don't always accept a patient's symptoms at face value.

The person in the story got referred to psychiatry because medicine didn't believe him.

Similarily, many legit medical disorders are discounted as not real symptoms by western medicine until decades later, for example, lyme disease, which is caused by a real organism with a real transmission pathway (ticks), with repeatable symptoms, but was discounted for years as "patients just making things up".

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#32

So, is it related to adrenal fatigue which is not yet fully recognized AFAIK ? Would it help ?

In some cases this could be a diagnosable and treatable cause of the kind of illness that often gets described as "adrenal fatigue". I have some experience with this topic, having spent at least 13 years in that category of people who is ill in a way that mainstream medicine can't really diagnose or treat - and in a way that has parallels with the symptoms described in this article (though not nearly as severe or deb…

I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary?

About 5 years ago I was fairly healthy, eating great and CrossFit 6 days a week. Then my body started to become tired all the time. I had pretty high work stress at the time along with what might be considered frequent physically stressful workouts. I suddenly found myself sleeping most of my Saturday and Sundays. Struggling during the week, just enough energy to get myself to work and back to crash at night. Eventually dropping exercise altogether. Along the way I started feeling weak, shaky and would have almost tremors in my body. I had read about adrenal stress at the time and suspected it might be an issue.

It’s hard to tell what’s related but I eventually developed prostatitis, a few rounds of cipro and no help. Then almost a year later some pretty severe digestive issues developed and they thought I had Crohn’s disease, then hospitalized due to reaction to medicine. Then kidney stones, gallstones, gallbladder removed. The last few years have been hard but so many people have it worse.

After the gallbladder removal I’ve finally starting to feel meaningfully better, digestive significantly better and prostatitis issues resolved.

I don’t work out like I used to, I’ve had times that I try to get into a running regime but eventually I start to feel sick and pain around my kidneys. I’m able to do extended hours of yard work and be outside for long hours. I’m lucky that my health appears to be coming back. I have no idea the ultimate root cause of all this but I’m counting my blessings.

When I read about stories like this, it’s inspiring and relatable. When doctors and specialists can’t figure it out they send you to someone else or suggest psychiatric issues. It’s disheartening and easy to lose faith in the medical system.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#33

Remarkable story. It's amazing how closed-minded "experts" can be. I suspect there are many conditions that will eventually be understood thanks to the hard work of people who approach these illnesses with the curiosity of a scientist instead of the hubris of an "expert."

> It's amazing how closed-minded "experts" can be

Speaking as someone who has been in a comparable (though not nearly as severe) predicament to Lindsay's for several years, I'm more sympathetic to the experts.

Medical science is incredibly vast and complex, and is limited by external constraints like research funding, insurance, the political/social climate, and many other factors.

There is a limit to how much attention the practitioners and researchers can devote to any topic, and they have to focus on what will generate the greatest overall benefits whilst keeping themselves in a living.

And for every "tip of the iceberg" Doug Lindsay who figures out a valid diagnosis and treatment, there are countless time-wasters.

I've been one of the time-wasters in the past, and it'd be nice to think that after the many years of research and experimentation I've done, I’m closer to being a bit like Lindsay (though fortunately I won't be needing to find someone to slice my adrenals open, thanks!).

There could well be a place for a system that makes it easier for people like Lindsay to be heard and taken seriously. Surely there are many others who have made similar breakthroughs in understanding their own illness, but who aren't able to talk their way into medical conferences and present well enough to be listened to.

But let's not be too harsh on the experts, at least in the medical profession. It's a pretty challenging and thankless business for them, much of the time.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#34

So, is it related to adrenal fatigue which is not yet fully recognized AFAIK ? Would it help ?

No. Adrenal fatigue is little more than alt-med jargon for what the average HNer would call burnout. The invocation of adrenal dysfunction is, to put it politely, poetic license.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#35
post #17

Earlier quoted context omitted.

But why couldn't the endocrinologist check via a blood test that he was producing too much adrenaline?

Simple... why would the endocrinologist check for that? Much of modern medicine is “I see A with B, so I test for C, maybe D and E. Once your out of stuff you can think to test for modern medicine doesn’t start throwing tests at the wall to see what sticks... it shrugs its shoulders and gives up. Now sometimes this is good (hypochondria + psychosomatic problems) but sometimes this is bad... failure to get a diagnosis…

The problem with "just throwing tests at the wall" is that every test has a false positive rate. For rare diseases like this (~30 documented cases ever!) even tiny false positive rates will lead to significant over-diagnosis.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#36

I don’t understand why it took so long for him to get this diagnosis. Elevated adrenaline levels are easily tested for in a simple catecholamine blood test. That test is among the basic panel done when one sees an endocrinologist. It may not have pinpointed his adrenal medulla as the problem, but it should have pointed them in that general direction very early on.

Because doctors in the western medicine tradition don't always accept a patient's symptoms at face value. The person in the story got referred to psychiatry because medicine didn't believe him. Similarily, many legit medical disorders are discounted as not real symptoms by western medicine until decades later, for example, lyme disease, which is caused by a real organism with a real transmission pathway (ticks), with…

For my money it was just an ordinary cock up.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#37
post #16

Remarkable story. It's amazing how closed-minded "experts" can be. I suspect there are many conditions that will eventually be understood thanks to the hard work of people who approach these illnesses with the curiosity of a scientist instead of the hubris of an "expert."

it’s an inspiring story for sure, and a good reminder to experts to curb their arrogance and keep an open mind. It’s also worth noting that by about midway through the process he was largely an expert in the field, and who cares if he was self taught. The professors and surgeons who listened to him obviously thought he was competent enough to listen to his ideas and act with him. The last thing the world needs, howev…

> That, after all, is how we’ve ended up with anti vaxxers, a resurgence in largely cured infectious diseases, and many other medical and social ailments of our modern age (politics anyone?)

Medicine is great when it works, but sometimes it causes the diseases they supposedly treat.

Psychiatry is a case study in ideological capture resulting in iatrogenic illness. My girlfriend was misdiagnosed, but since they use the courts to force her to take the drugs that actually make people suicidal (common result of anti-psychotics) and die of liver failure (my aunt's friend), there's no way for her to escape.

The tragedy of Psychiatry is that the physiology of the conditions are largely understood, but this understanding didn't reach the practitioners working with patients.

People are drawn to "alternative medicine" when their mainstream medicine practitioners shrug their shoulders. In the United States, standard insurance-based medicine is a wealth-transfer operation: it's fantastically expensive approach to rendering needed services.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#38

Earlier quoted context omitted.

I understand the urge to summarize, but maybe interested HN users can be expected to read the article before coming to the comments? This seriously degrades the quality of discussion.

I am often more interested in the comments here than the content of the article so I am happy with the summary. I can often understand what the article is about and go to the comment section for pros and cons

For reading, maybe, but it's a lot harder to contribute something meaningful if you don't know the context to start with.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#39
post #32

Earlier quoted context omitted.

In some cases this could be a diagnosable and treatable cause of the kind of illness that often gets described as "adrenal fatigue". I have some experience with this topic, having spent at least 13 years in that category of people who is ill in a way that mainstream medicine can't really diagnose or treat - and in a way that has parallels with the symptoms described in this article (though not nearly as severe or deb…

I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary? About 5 years ago I was fairly healthy, eating great and CrossFit 6 days a week. Then my body started to become tired all the time. I had pretty high work stress at the time along with what might be considered frequent physically stressful workouts. I suddenly found myself sleeping most…

A year ago I was doing CrossFit 6 days a week. Then I started getting more and more tired. I developed ulcerative colitis and now I alternate between insomnia and sleeping 12 hours a day.

I think years of physical stress from crossfit triggered latent disease. I'm still trying to get my body working normally again.

Yoga and CBD are helping.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#40
post #37
post #16

Earlier quoted context omitted.

it’s an inspiring story for sure, and a good reminder to experts to curb their arrogance and keep an open mind. It’s also worth noting that by about midway through the process he was largely an expert in the field, and who cares if he was self taught. The professors and surgeons who listened to him obviously thought he was competent enough to listen to his ideas and act with him. The last thing the world needs, howev…

> That, after all, is how we’ve ended up with anti vaxxers, a resurgence in largely cured infectious diseases, and many other medical and social ailments of our modern age (politics anyone?) Medicine is great when it works, but sometimes it causes the diseases they supposedly treat. Psychiatry is a case study in ideological capture resulting in iatrogenic illness. My girlfriend was misdiagnosed, but since they use th…

Medicine, as an applied science, consists of a spectrum of fields between areas that are largely ‘engineering’ and areas that are largely ‘art’. Surgery, for the most part, is something more like engineering/science, where we have most of the answers and don’t have to modify practice too much in response to new knowledge; Psychiatry is still largely art. Frankly, making an argument for the failings of medicine based on psychiatry is like blaming a 2 year old for not being toilet trained.

I agree that people are drawn to alternative medicine when they can’t get answers from doctors. And I am a vocal advocate both inside and outside of medicine for the failings of the system. For example, if I turn up to the GPS office and sit in a room of sick kids with paint peeling off the walls to be seen by a disinterested doctor for 15 minutes who sends me away without giving me a deifinitive answer to my questions/concerns; then later go to an alt-Med quack with a water fountain in the waiting room, incense burning and she spends 45 minutes with me listening to my problems, who am I going to come back to, especially if I derive benefit (there are studies showing that practitioner engagement and active listening are for many common ‘modern’ presentations highly effective)

Part of this is the modern world has produced people who are so healthy and generally well off compared to our forebears that the moment they develop an ache or pain they fear the sky is falling and demand an answer.

And medicine doesn’t have answers, or maybe not the answer these people want, because most of these things are just the process of growing old in and of itself - people are externalising their existential angst on a system that was designed to treat sick people, not the walking well.

For example, of the 17 patients I treated in the emergency department on my last 2 shifts, 9 of them should have never even turned up to the department. They had nothing wrong with them, or nothing that staying at home, resting and using some common sense wouldn’t have fixed. Yet there they are demanding answers to questions that our forebears would have considered part of life; and which in any regard we can’t fix anyway.

I don’t work in the US but the system there is so fucked that I wonder how long until it contributes to a broader breakdown in society; healthcare is a basic human right and you’re right the wealth transfer aspect of it is disenhartening and concerning.

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