[wawayanda]

A year or so ago, I fed my wife's blood work results into chatgpt and it came back with a terrifying diagnosis. Even after a lot of back and forth it stuck to its guns. We went to a specialist who performed some additional tests and explained that the condition cannot be diagnosed with just the original blood work and said that she did not have the condition. The whole thing was a borderline traumatic ordeal that I'm still pretty pissed about.

[greenknight]

On the flip side, i had some pain in my chest... RUQ (right upper quadrant for those medical folk).

On the way to the hospital, ChatGPT was pretty confident it was a issue with my gallbladder due to me having a fatty meal for lunch (but it was delicious).

After an extended wait time to be seen, they didnt ask about anything like that, and at the end they were like anything else to add, added it in about ChatGPT / Gallbladder... discharged 5 minutes later with suspicion of Gallbladder as they couldnt do anything that night.

Over the next few weeks, got test after test after test, to try and figure out whats going on. MRI. CT. Ultrasound etc.etc. they all came back negative for the gallbladder.

ChatGPT was persistant. It said to get a HIDA scan, a more specialised scan. My GP was a bit reluctant but agreed. Got it, and was diagnosed with a hyperkinetic gallbladder. It is still unrecognised as an issue, but mostly accepted. So much so my surgeon initally said that it wasnt a thing (then after doing research about it, says it is a thing)... and a gastroentologist also said it wasnt a thing.

Had it taken out a few weeks ago, and it was chroically inflammed. Which means the removal was the correct path to go down.

It just sucks that your wife was on the other end of things.

[tharkun__]

This reminds me of another recent comment in some other post, about doctors not diagnosing "hard to diagnose" things.

There are probably ("good") reasons for this. But your own persistence, and today the help of AI, can potentially help you. The problem with it is the same problem as previously: "charlatans". Just that today the charlatan and the savior are both one and the same: The AI.

I do recognize that most people probably can't tell one from the other. In both cases ;)

You'll find this in my post history a few times now but essentially: I was lethargic all the time, got migraine type headaches "randomly" a lot. Having the feeling I'd need to puke. One time I had to stop driving as it just got so bad. I suddenly was no longer able to tolerate alcohol either.

I went to multiple doctors, was sent to specialists, who all told me that they could maaaaaybe do test XYX but essentially: It wasn't a thing, I was crazy.

Through a lot of online research I "figured out" (and that's an over-statement) that it was something about the gut microbiome. Something to do with histamine. I tried a bunch of things, like I suspected it might be DAO (Di-Amino-Oxidase) insufficiency. I tried a bunch of probiotics, both the "heals all your stuff" and "you need to take a single strain or it won't work" type stuff. Including "just take Actimel". Actimel gave me headaches! Turns out one of the (prominent) strains in there makes histamine. Guess what, Alcohol, especially some, has histamines and your "hangover" is also essentially histamines (made worse by the dehydration). And guess what else, some foods, especially some I love, contain or break down into histamines.

So I figured that somehow it's all about histamines and how my current gut microbiome does not deal well with excess histamines (through whichever source). None of the doctors I went to believed this to be a "thing" nor did they want to do anything about it. Then I found a pro-biotic that actually helped. If you really want to check what I am taking, check the history. I'm not a marketing machine. What I do believe is that one particular bacterium helped, because it's the one thing that wasn't in any of the other ones I took: Bacillus subtilis.

A soil based bacterium, which in the olden times, you'd have gotten from slightly not well enough cleaned cabbage or whatever vegetable du jour you were eating. Essentially: if your toddler stuffs his face with a handful of dirt, that's one thing they'd be getting and it's for the better! I'm saying this, because the rest of the formulation was essentially the same as the others I tried.

I took three pills per day, breakfast, lunch and dinner. I felt like shit for two weeks, even getting headaches again. I stuck with it. After about two weeks I started feeling better. I think that's when my gut microbiome got "turned around". I was no longer lethargic and I could eat blue cheese and lasagna three days in a row with two glasses of red wine and not get a headache any longer! Those are all foods that contain or make lots of histamine. I still take one per day and I have no more issues.

But you gotta get to this, somehow, through all of the bullshit people that try to sell you their "miracle cure" stuff. And it's just as hard as trying to suss out where the AI is bullshitting you.

There was exactly a single doctor in my life, who I would consider good in that regard. I had already figured the above one out by that time but I was doing keto and it got all of my blood markers, except for cholesterol into normal again. She literally "googled" with me about keto a few times, did a blood test to confirm that I was in ketosis and in general was just awesome about this. She was notoriously difficult to book and later than any doctor for schedules appointments, but she took her time and even that would not really ever have been enough to suss out the stuff that I figured out through research myself if you ask me. While doctors are the "half gods in white", I think there's just way too much stuff and way too little time for them. It's like: All the bugs at your place of work. Now imagine you had exactly one doctor across a multitude of companies. Of course they only figure out the "common" ones ...

[steveBK123]

One challenge that may sound obvious.. is that super rare stuff gets seen super rarely, even by specalists.

In practice it means you often have to escalate from GP to local specialist to even more narrow specialist all the way to one of the regional big city specialist that almost exclusively get the weird cases.

This is because every hop is an increasingly narrow area of speciality.

Instead of just “cancer doctor” its the “GI cancer doctor” then its “GI cancer doctor of this particular organ” then its “an entire department of cancer doctors who work exclusively on this organ who will review the case together”, etc.

[tstrimple]

It's horses not zebras until it's actually a zebra and your life depends on it. I think those sorts of guidelines are useful in the general case. But many medical issues quickly move beyond the general case and need closer examination. Not sure how you do that effectively without wasting tons of money on folks with indigestion.

[xenonite]

Interesting to read, thank you very much. Are you still eating ketogenic? The bacillus subtilis seems to metabolize glucose, so are yours still alive? And did you try other probiotica beforehand? I am having HIT and eating a mostly carnivore diet with mostly fresh/unfermented meat.

[tharkun__]

I no longer do keto no. I also started keto after I had gotten better already from the probiotics but not much. I'm not sure where you read about that subtilis can only live off of glucose. I'm having a hard time finding primary sources that actually talk about this but handily Google's "AI mode" also "answered" my search query and it does state it primarily thrives on glucose and sugars but can also break down and live off of proteins and fats.

FWIW, as I understand it, many probiotics aren't going to colonize on their own and "stick around" for a prolonged period of time when you stop taking them, even under good circumstances but you can't quote me on that so to speak. And in the past we would've gotten many of them through one way or another through our diet as well, just not through a probiotic but naturally.

I tried multiple probiotics. Both blends of multiple types as well as things like "Saccharomyces Boulardii"-only preparation. I don't recall all the exact ones I tried though.

[tonyhart7]

after reading your comment, my perception is mixed

[rubatuga]

If it was inflamed would your GGT level be high?

[fn-mote]

> I fed my wife's blood work results into chatgpt and it came back with a terrifying diagnosis

I don't get it... a doctor ordered the blood work, right? And surely they did not have this opinion or you would have been sent to a specialist right away. In this case, the GP who ordered the blood work was the gatekeeper. Shouldn't they have been the person to deal with this inquiry in the first place?

I would be a lot more negative about "the medical establishment" if they had been the ones who put you through the trauma. It sounds like this story is putting yourself through trauma by believing "Dr. GPT" instead of consulting a real doctor.

I will take it as a cautionary tale, and remember it next time I feed all of my test results into an LLM.

[kolinko]

At least in Poland, I can almost always see my results before my doctor does - I get a notification that the labwork is ready and I can view results online.

Also, the regular bloodwork is around $50-$100 (for noninsured or without a prescription), so many people just do this out of pocket once in a while and only bring to doctor if anything looks suspicious.

Finally, there is EU regulation about data that applies to medical field as well - you always have the right to view all the data that any company has stored about you. Gatekeeping is forbidden by law.

[vineyardmike]

You don't need a doctor to order bloodwork. I get a full panel done yearly, just to establish a baseline and trend. I try not to overanalyze it, and just keep it around for a professional in case some real issue arises in the future.

[jbverschoor]

In some countries you do. The Netherlands for example

[themafia]

> it stuck to its guns

It gave you a probabilistic output. There were no guns and nothing to stick to. If you had disrupted the context with enough countervailing opinion it would have "relented" simply because the conversational probabilities changed.

[tstrimple]

I was amused but not impressed when I was able to convince Claude Code that it was useless and absolutely not a service worth paying for. It literally apologized and recommended I ask for a refund. I mean, I still get lots of value from CC. Just that it's easy to push them into whatever corner you want.

[nprateem]

It's amazing this still needs to be said, especially here

[coffeefirst]

Here, sure.

For the general public, these tools have been advertised this way.

So if a good subset of HN still gets fooled, the layperson is screwed.

[gizajob]

Hmm or the layperson wouldn’t be “smart” enough to think that ChatGPT could give useful answers to complex health questions.

[SchemaLoad]

I asked a doctor friend why it seems common for healthcare workers to keep the results sheets to themself and just give you a good/bad summary. He told me that the average person can't properly understand the data and will freak themselves out over nothing.

[smt88]

I'm in the US and have never experienced anyone keeping results to themselves.

In fact, I can now easily access even my doctor's appointment notes. I have my entire chart unless my doctor specifically writes private notes.

[worldsavior]

I think it's your problem you got stressed from a probabilistic machine answering with what you want to hear.

[josefresco]

I fed about 4ish years of blood tests into an AI and after some back and forth it identified a possible issue that might signal recovery. I sheepishly brought it up with my doc, who actually said it might be worth looking into. Nothing earth shattering, just another opinion.

[lugu]

I am sorry I have to say so, but the value of LLM is their ability to reason based on their context. Don't use them as smart wikipedia (without context). To your use case, provide them with different textbook and practice handbook and with the medical history of the person. Then ask your question in a neutral way. Then ask it to verify their claim in another session and provide references.

It is so unfortunate that a general chatbot designed to answer anything was the first use case pushed. I get it when people are pissed.

[fouc]

> it stuck to its guns

Everyone that encounters this needs to do a clean/fresh prompt with memory disabled to really know if the LLM is going to consistently come to the same conclusion or not.

[pengaru]

> A year or so ago, I fed my wife's blood work results into chatgpt

Why would you consult a known bullshit generator for anything this important?

[eleveriven]

Stories like yours are why I'm skeptical of these "health insight" products as currently shipped. Visualization, explanation, question-generation - great. Acting like an interpreter of incomplete medical data without a strong refusal mode is genuinely dangerous

[mrguyorama]

>The whole thing was a borderline traumatic ordeal that I'm still pretty pissed about.

Why did you do the thing people calmly explained you should not do? Why are you pissed about experiencing the obvious and known outcome?

In medicine, even a test with "Worrying" results is rarely an actual condition requiring treatment. One reason doctors are so bad at long tail conditions is that they have been trained, both by education and literal direct experience, that chasing down test results without any symptoms is a reliable way to waste money, time, and emotions.

It's a classic statistics 101 topic to look at screening tests and notice that the majority of "positive" outcomes are false positives.

[daveguy]

Please keep telling your story. This is the kind of shit that medical science has been dealing with for at least a century. When evaluating testing procedures false positives can have serious consequences. A test that's positive every time will catch every single true positive, but it's also worthless. These LLMs don't have a goddamn clue about it. There should be consequences for these garbage fires giving medical advice.

[maerF0x0]

Part of the issue is taking it's output as conclusion rather than as a signal / lead.

I would never let an LLM make an amputate or not decision, but it could convince me to go talk with an expert who sees me in person and takes a holistic view.

[irjustin]

Isn't it two sides to the same coin?

You should be happy about it that it's not the thing specifically when the signs pointed towards it being "the thing"?

[themafia]

You are _absolutely_ going to die in the next 30 minutes.

When it doesn't happen will you still be happy?

[nprateem]

Depends if I'm now broke from blowing it all on crack and hookers.

[irjustin]

How is this apples-apples at all?

But to answer directly... yes? yes, I am.

[edit]

A bit it more real. My blood pressure monitor says my bp is 200/160. Chat says you're dead get yourself to a hospital.

Get to the hospital and says oh your bp monitor is wrong.

I'm happy? I would say that I am. Sure I'm annoyed at my machine, but way happier it's wrong than right.

[vineyardmike]

This is another example of why its frustrating still.

"Yes I'm happy I'm not dying" ignores that "go to the hospital [and waste a day, maybe some financial cost]" because a machine was wrong. This is still pretty inconvenient because a machine wasn't accurate/calibrated/engineered weak. Not dying is good, but the emotions and fear for a period of time is still bad.

[irjustin]

Yeah I guess I just don't see eye-to-eye on this.

I 100% understand those frustrations. That the "detectors" should've been more accurate, or the fears, battery of tests, and costs associated of time and money. But, if you have the means to find out something that could have been extremely concerning is actually "nothing wrong" - isn't that worth it?

My friend is 45, had bloody stool -> colonoscopy -> polyps removed -> benign. Isn't that way better than colon cancer?

Maybe it's a glass half-empty-full thing.

[ltbarcly3]

It's interesting because presumably you were too ashamed to tell the doctor "we pasted stuff into chatgpt and it said it means she is sick", because if you had said that he would have looked at the bloodwork and you could have avoided going to a specialist.

It's an interesting cognitive dissonance that you both trusted it enough to go to a specialist but not enough to admit using it.

[orionsbelt]

> "A year or so ago"

What model?

Care to share the conversation? Or try again and see how the latest model does?

[jesterson]

Never ceases to surpise me why people taking word salad output so seriously.

And probably the same people laugh at ancient folks carefully listening to shamans.

[bigbuppo]

Why not just ask WebMD?

[port11]

You used a predictive/statistical proximity chatbot on a single point-in-time snapshot of her blood, and you’re pissed that the result wasn’t useful? I think any decent GP would push back, want to see trends in the data, or at least look at the broader context.

I mean, at some point we have to admit that LLMs aren’t designed for correctness but utility.

[terribleperson]

Do you have a custom prompt/personality set? What is it?

[ltbarcly3]

Yea, if only he had said "make sure you are always honest" first!

[terribleperson]

It's not that you need to ask it to be honest, it's that the defaults are kind of stupid and obnoxiously sycophantic. ChatGPT is also prone to getting stuck on particular ideas. If you're using the vanilla personalities without a custom prompt, not aware of and working against its issues, and not starting new chats occasionally you won't get good results. You'll get good-sounding garbage.

Part of my custom prompt is ```When using factual information beyond what I provide, verify it when possible. When researching factual questions—especially by relying on papers and studies—actively look for null findings, negative results, and contradictory evidence, not just positive or confirmatory findings.```

To me, the most interesting result of that part of my prompt is that in thinking mode, it ends up re-checking it's assumptions and sources fairly often. It's not about honesty, but correctness.

A custom prompt isn't the be-all end-all either. The right kind of questioning is important, and you also need to get a fresh context when you ask new questions or if you want to double check something.

[filoeleven]

Gotta love the replies to this. At least more of the botheads are now acting like they're trying to ask helpful questions instead of just flat out saying "you're using it wrong."

[gizajob]

You’re pissed about your own stupidity? In asking for deep knowledge and medical advice from a Markov chain?