Comment by code_duck
1 day ago
I had a much more common autoimmune disease, adult-onset Type 1 Diabetes (LADA), determined to be health anxiety by a very large, major renowned hospital who should have known better. It led to over a year of continued illness before finally I was diagnosed at an ER. I'm sure some people have psychosomatic or anxiety based illnesses, but it's rather grating to be told by a psychologist that you're worrying yourself to death when you are very, very sure that's not the issue.
How did it take a year to diagnose diabetes? Are there symptoms of Type 1 that aren't downstream of blood sugar? I, some chucklefuck with some first aid experience, can figure out if someone is hypo/hyperglycemic by smell.
LADA comes on slowly compared to regular juvenile onset type 1. With regular T1, you'll be in diabetic ketoacidosis and hospitalized within 3 months. LADA can take a year or two, sometimes even longer. I had Celiac diagnosed a year prior, and many of the symptoms seemed the same - fatigue after meals, heartburn, other digestive issues - and that confused things. Plus I had terrible medical care for the first 6 months while I was losing weight and wondering what was happening.
Adult onset. It can come on slowly (as in over the course of a year). And many downstream symptoms include mood changes. Hard to know it is blood sugar related if you don't test blood sugar levels.
Really glad you can smell it on people, smell is a powerful diagnostic tool that few people are trained on.
That’s the bit I don’t get: isn’t glucose testing by the health care system fairly common with any sort of “I don’t know what’s going on, let’s order some labs and see what comes back” screening/testing panel?
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Once you have psych. diagnosis its over, doctors see you throught that lens. Ah yes, he has anxiety, of course his symptoms are psychosomatic and there is no need for more testing. My uncle was schizophrenic, medicated and living OK life after years and years of delusions. He also had untreated diabetes for years, but was on the right track. He went to doctor with pain in belly, they sent him home and told him nothing is wrong, couple days after he died from ruptured gallbladder...
What I learned is also that often doctors will shrug at an unclear illness, and wait for it to become severe enough that it's obvious. Once I had 650 glucose and a A1C of 12, they couldn't say it was just a psych problem.
Had a piece of my spine severed (tail bone and some above it) and was told it was all in my head.
Even the uncontrolled, daily falling.
It’s wild how much of a practice medicine is but people take the first diagnostic opinion because their profession
I honestly hate the US medical system for this. Basically you get scolded for not being proactive and ignoring symptoms, but if you are proactive and even slightly worried about something they treat you like a hypochondriac.
I practiced medicine in the U.S. and am now retired. This is such a complicated problem, not insoluble; and I would not want to explain away failures of the system.
I spent the majority of my career at a major tertiary referral center. One patient sent to me had all the signs and symptoms of Beçhet’s disease. To me it was obvious; but putting myself in the shoes of the rural primary care physician, who has never seen a case, I can imagine the constellation of presenting signs and symptoms would have been just a muddle. I can think of perhaps hundreds of similar cases.
I’m sure I missed important findings in my career. I know it. Much of what is missing nowadays is the time to listen deeply to what the patient is telling you and to think about it. If you have even rudimentary medical knowledge + time + humility and a willingness to constantly revisit the diagnosis, any doctor will do OK. But it’s a tall order in 2026. I’m grateful to have practiced at an institution that afforded me the time to listen and think. I gather that many physicians now are suffering from exhaustion of curiosity and maybe empathy.
This. Today, well-meaning doctors cannot spend more than 5-10 minutes between seeing patients. Medical shows on TV show teams of physicians working on one or two patients per week. The reality in my part of the world is that each doctor sees 10 or so patients each day, and are not available for phone calls. (Even in 2026 my parents can reach their doctors by phone, and they spend the time to chat. But they are in New York and I live in Florida. )
I have seen my current PC doctor for 25 years now and he knows me well enough to spot significant changes. But he's retiring in a few months and I have no idea how to find a new doctor. My current doctor has no recommendations for me. (I'm not asking here for any if that's what this sounds like.)