This is very interesting to see on here. My mother was the dissenting vote on an FDA panel on this. There are articles about it. I'll copy her words (as reported by something but seems legit)
> She said that the FDA's plan doesn't go far enough.
> "It's hard to dismiss an anecdotal report when you are the anecdote. When a patient is finally tested and found to have gadolinium retention, there's no FDA-approved antidote. So what does the patient do?"
And I want to reiterate that she was "the" no not "a" no. I don't know if her vote alone is what's caused more research into this. But it's probably the thing I brag about her the most. Even though everybody else said it was fine or abstained, she stood strong. If you look up the articles from the time of the panel (2017) you'll see a lot of articles about this panel and how she was the sole no vote. Included in that was a public post from Chuck Norris praising her. He was going to come out to meet us but I think it was a bad Texas hurricane season so that fell through
In case anyone is wondering what Chuck Norris has to do with all this:
> Chuck and Gena Norris filed a lawsuit against several medical companies in 2017, alleging that a gadolinium-based contrast agent used in Gena Norris's MRIs caused her to develop a condition called gadolinium deposition disease and resulted in debilitating symptoms like cognitive issues, pain, and muscle wasting. In January 2020, the Norrises, along with their attorneys, voluntarily dismissed the lawsuit with prejudice, meaning it cannot be refiled. The dismissal was made without a settlement payment, and each party paid their own legal costs.
It might give a glimpse into his worldview to mention that during the COVID pandemic Mr Norris shared an article on social media that claimed that the COVID vaccinations killed millions of people. [0]
His reaction is kind of the essence of populist backlash.
People are told that the authorities have it all under control and the experts can be trusted. Then they discover that the experts are human, fallible, and sometimes incompetent or corrupt.
Since the original message was one of unqualified absolute faith in the experts, the backlash is to flip over to believing that the experts are satan incarnate and pure evil and always wrong.
It reminds me psychologically of the arc of an immature relationship. First they’re perfect, everything about them is perfect, they’re going to be your soul mate forever. Then you catch them in a lie or they do something embarrassing. Then you get the screaming breakup. Everything about them is the worst now and you never want to see them again.
I have no feeling in the top of my mouth after a “successful” deviated septum operation when I was a teenager. I was told it would resolve, it never did.
I can’t go outside in mildly brisk weather without a tissue as it’s a constant stream, and I get debilitating headaches that are almost like migraines with the pain situated right at the bridge of my nose. Also found the procedure enlarged my sinus opening for no particular reason, something my teenage self wasn’t aware of.
It seems to be getting worse over time, and I have localized pain in the area periodically. I can tell you from first hand experience, it will skew your view of medicine and the field, and I have plenty of MDs in the family.
Ha, yeah, doctors say that about just about everything that's a bit abnormal just to get you out of their office. Was told similarly for two conditions I still have. It sounds better than "Uhh I have no idea what that's about, there's 68 patients waiting in line, good luck".
The way I see it, medicine is about trying to fix a black box with absurd levels of complexity that does not follow any sensible design, where every body is not even arranged in the same way. All that without a manual and only rudimentary tools. They mostly just guess based on statistics and hope for the best, they have no idea what they're doing and if at all possible they try to let your body resolve the issue on its own because it'll do less damage.
Still usually beats the alternative though (i.e. nothing).
A large portion humanity seem incapable of embracing uncertainty and nuance and are over eager to embrace whoever is willing to peddle certainty and simplicity.
As long as that is true it seem naive to believe that nuanced institutions can exist as dominant entities in human societies.
This is true, but it is also true that "official" communication often tends to project level of certainty that just does not correspond to the actual level of knowledge, and Covid was pretty bad in this regard, because in absence of actual knowledge, hard recommendations were being issued to people.
Saying sincerely "we are not yet sure if Covid spreads by touching surfaces" etc. would have gone a long way.
I am not even touching the dirty topic of "practise societal distancing unless you go to an anti-racist demonstration, because racism is worse than Covid". That alone probably sunk the levels of trust for a generation in the US, especially among people right of the center. Politicizing science is suicidal.
Back to normal uncertainty. It was the same with various dietary recommendations. Older people remember several major overhauls thereof (are eggs fine or not, and in which amount?), and again, these were presented with a level of certainty that does not correspond to the actual - somewhat fuzzy - state of nutritional science.
You can only do this so long before unleashing an epidemics of distrust.
> This is true, but it is also true that "official" communication often tends to project level of certainty that just does not correspond to the actual level of knowledge, and Covid was pretty bad in this regard
After my SO got her first COVID vaccine she lost her period. It had been rock steady for many, many years and suddenly gone and hadn't come back for a few months. She had a GP appointment, and I accompanied her as I often do as my SO struggles with recalling important details.
My SO told the GP about her missing period, and the GP quickly tried to reassure her it wasn't something to worry about and it would come back soon enough.
Well, I had just read published studies about this and knew the medical establishment had no idea why the vaccine caused a lot of women to lose their period.
So I challenged the GP and asked if she knew what the mechanism was that caused my SO to no longer have her period, and of course she didn't know.
"Well, if you don't know the mechanism, how can you say it's fine this time?", I asked sincerely.
She admitted she was just going off what usually happens when women lose their periods, which can happen due to various kinds of stress. I wondered why it was so difficult to lead with that, instead of confidently stating it would be fine.
My SO did eventually get her period back, but to this day, almost 5 years later, it's still highly unregular.
> it is also true that "official" communication often tends to project level of certainty that just does not correspond to the actual level of knowledge
The problem is that the populist response isn’t to demand better experts that know more and are held to higher standards.
Instead the populist response is to lower the standards and put people like RFK Jr in charge and get health advice from Joe Rogan.
It’s like having someone do a bad job on home repair and instead of hiring a better vetted more experienced work crew you go recruit some bunch of random idiots who have no work portfolio or no experience beyond shitty DIY work. BUT they are charismatic and you like their vibes.
“The medical profession didn’t do a good enough job so I am turning to random assholes on YouTube.”
> It wouldn't have, uncertainty creates general panic as well, that soon turns into disarray of chaotic recommendations among the masses.
A disarray of chaotic recommendations from on high is preferable, I guess?
I especially enjoyed viewing the early covid health department stickers later on. While masks were mandatory, there were health department stickers everywhere from a couple months earlier telling us that they were unhelpful.
I know nuance is hard, but it is entirely understandable that many people have distrust in authority when the message seemed to be high confidence do A(t) and A(t) was often contradictory to A(t-1). At that point, people pick the A(t) that had the advice they like.
When there were things like tell people masks are ineffective because they actually are effective but in limited supply, that also breeds distrust. I don't know how you solve that one, other than having a functional pandemic response logistics chain, and I don't think we ever had that; we did some supply warehousing after SARS but without a process to refresh the stock, it was not effective for COVID. I suspect there's no effort to build that up again, but I'd love to be wrong; my impressions are that the US healthcare and disease control ecosystem has not learned anything from COVID, again, I hope I'm wrong. Maybe acceptance of mRNA based vaccination and some amount of deployment of genetic identification of infection from patients.
IMHO, "short term uncertainty" > "long term distrust".
I don't like the "common people are too stupid to be told the truth" attitude (which includes uncertainities).
It is both too smug to work, and unworkable in today's networked world, where those same people will notice really fast that someone is treating them like idiots, and react with resentment and loss of trust.
Absolutely agree. I think of children as "people who don't know a lot right now". But really, we're all children to some extent. Children are always honed to look for inconsistencies, and if those inconsistencies aren't addressed, distrust builds up. "You said I can't be on my phone too long, so how come you're doing it?" Distrust leads to irrational judgements, often in a broad-brush pendulum swing towards the opposite position. Trust is built up painstakingly and organically. Distrust tears it all down instantly. As long as "the masses" (to which all of us, to some extent, belong) exhibit this asymmetry between trust and distrust, for the people who want to speak truly, the key is consistency. Never be (perceived as) the boy who cried wolf.
The common person can be told the truth. The common people, plural, cannot.
That’s what most authorities believe and there is good reason to believe it.
People in groups are irrational and tribal in ways people are not if you speak to them one on one. We don’t scale well, cognitively speaking. A whole bunch of “game of telephone” distortions happen and a bunch of legacy instincts from when we were little squirrel looking things take over.
If you look at how militaries operate it’s basically a giant set of procedures and customs designed to suppress all that shit and allow people in groups to behave somewhat more rationally. At least for a while, or in a limited domain. It kind of works. But we don’t want all of society to operate like that because it also suppresses art, invention, experience, play, etc.
The tribal parts of our nature can also be soothed by having trust in a good clan chief who is handling things. Those people can say things like "we dont know but we're working on it" because people trust them (requires integrity). Since that is almost non-existant (certainly during covid) we only get the worst parts.
I believe we can do fairly well in addressing people in groups. People are irrational, but the probability distribution of "things we say" against "what people will think and do" can be modulated for the better. The bigger issue, I think, is that the authorities can't be trusted. In what world will you find even 100 people who will agree to hold truth, justice, blah blah in high regard, and actually execute on those words? Corruption in the leaders exacerbates the illness of irrationality in the people.
That is the new enlightennents main project, researching these retardations, building societal implants to overcone or at least life with them. Handling the eldritch horror moments where we can not or the handicaps are societal load bearing and future crippling. The faces they make when the dog dies you can not unsee.
It’s why leaders often speak in certainties. X is bad, Y is good type messaging.
It’s also why some people gravitate towards overly-confident narcissists. They feel a sense of comfort when someone seems to have all the answers, even if they don’t.
I understand why people do it, but in another way I don’t. If I get a car and it turns out to be a clunker and I hate it, I don’t just go “all cars are clunkers that I will hate” and swear off motor vehicles. People would claim I’m wildly overreacting (and rightfully so). And there are far more experts across a much wider spectrum than there are versions of personal motor vehicles!
If cars were people you might. We are more rational with inanimate objects. When it’s people a bunch of tribal in group out group stereotyping and group solidarity building through out group scapegoating programs take over.
Like I said, I understand why it happens. But it’s also just very easy for me to sit down and kind of talk through why it’s not a good way to operate. There are definitely types of “experts“ and certain fields that I am incredibly skeptical of or maybe even dismiss outright, but to translate that into a broader “basically every doctor and government is lying to me“ as one accepts “outsider” opinions as gospel is just such an extreme reaction.
And normally I wouldn’t really even bother acknowledging that that extreme stance exists. If you look hard enough you can find an extreme stance on anything. But the sheer percentage of the US population that has embraced an almost entirely skeptical/dismissive view of doctors and experts of any kind… it’s kind of horrifying
If you bought a jeep and it was a lemon, you may never buy a jeep again. You just don’t view all cars as fungible.
Do you think most people are capable of understanding why an expert could be wrong about gadolinium but right about vaccines? Medical advice is all seen as equivalent to most.
I guess I’m not really sure what you’re trying to say here. I agree that this is the reality. It’s just wild to me that people can’t (or rather won’t) step outside of it for a moment and think critically when it literally can be a matter of life or death. I think there’s just too much incentive to trust random Youtubers who tell you everything you already think is completely accurate and anybody who tells you to do something different is not only wrong but actively trying to hurt you.
My point is that, the reason people don’t let one bad car experience ruin all cars is because people understand that different manufacturers make cars with different levels of quality. So one bad car will ruin the perception of one manufacturer instead of cars in general.
What is the equivalent when it comes to medical advice? Using vaccines as an example, one concern people have is the mercury content. The FDA, doctors, and drug manufacturers have said that the mercury is safe. The same doctors, manufacturers, and FDA has said that MRI contrast containing another heavy metal, gadolinium, is safe. It turns out that, no, it is not safe.
Given these facts, is it really surprising that people would turn away from the FDA and doctors just like people would turn away from a car manufacturer after receiving a lemon? While I personally trust the FDA, I can see the logic in the distrust after events like this.
> People are told that the authorities have it all under control and the experts can be trusted. Then they discover that the experts are human, fallible, and sometimes incompetent or corrupt.
Try
People are told that the authorities have it all under control and the experts can be trusted. Then they discover that the authorities and experts, in the name of “the greater good”, actively suppressed debate, knowingly mis-represented uncertainties, pretended reports of serious adverse reactions to vaccination were not only impossible but simply fear-mongering from the uneducated, and then pressured social-media platforms to take down factual information when it threatened the official narrative.
This without even touching on the fact that the WHO, who has one damned job, refused to even declare a pandemic and spoke against any travel restrictions or public health measures outside their lazy guidance until the virus was confirmed to be spreading out of control in nearly every nation on earth.
Having lived through this, observed it first-hand, read the studies, having dozens of anecdotal evidence on top from near friends and family, and still not able to even question the new mRNA platform publicly without knee-jerk backlash and demonisation, has done more damage to my faith in institutions and the medical community than anything else I’ve witnessed in my near forty years on this planet. Covid made crystal clear to me that we still live under tyrannical dogmatic rule devoid of scientific nuance because it’s “for the greater good”.
The claim that it is not possible to "question the new mRNA platform publicly without knee-jerk backlash and demonization" is just not accurate. There is a very well-known counterexample. Researchers identified that the mRNA COVID-19 vaccines were associated with an increased risk of myocarditis, particularly among younger males. This is rare - something like 3 excess cases per 100,000 doses. This has been studied extensively. Regulators required additional surveillance and it's included in all the guidance from regulators and physicians associations. The consensus has been that this is an acceptable risk, particularly since COVID itself is associated with an increased risk of myocarditis. Clearly you have a different view, but the consensus view is based on analyzing data from millions of patients across many countries, not on a "knee-jerk backlash".
> The consensus has been that this is an acceptable risk, particularly since COVID itself is associated with an increased risk of myocarditis.
This made more sense to me when people still believed that the shots meant getting covid was very unlikely. It's easy to find people who got lots of shots, it's hard to find people who didn't get covid.
It always seemed implied that p(shot cardio issues) < p(covid cardio issues), and nobody ever talks about p(shot cardio issues) + p(covid cardio issues).
Did anybody rigorously demonstrate that a vaccinated covid case doesn't have these risks?
The vaccine didn’t work as well as we thought it would.
It did work to some extent. It’s there in the numbers. But it was not the resounding success that, say, the smallpox or polio vaccines were. It attenuated the disease a little.
That might change some of the calculus. Or it might not. It’s hard to tell the difference between myocarditis caused by the vaccine or from COVID or from other factors.
Imagine it’s you who gets to make the call. Whatever call you make will be roundly criticized and you might be wrong. If you’re wrong more people will die.
> The claim that it is not possible to "question the new mRNA platform publicly without knee-jerk backlash and demonization" is just not accurate
I’m not a Covid truther, anti-vaxxer, or anything of the sort, but let’s be honest here. Mainstream urban society will absolutely attack anyone who doesn’t adhere to the consensus view on covid (among many other topics). It’s an overreaction stemming from years of dealing with bad-faith trolls. But the net result is an enforcement of a specific political orthodoxy.
> It’s an overreaction stemming from years of dealing with bad-faith trolls.
A billion billion billion times this.
It makes me wonder about the inquisition. There’s a subset of Catholic inquisition apologists who argue it was an overreaction to social breakdown and an explosion of cults, some of which were very harmful. Having seen the rise of mass social media I am no longer able to dismiss this argument as easily. Still don’t quite buy it but there is, as you’d say in criminal law, reasonable doubt.
That’s because most people who question it are bad faith trolls or crazy ideologues who think you can treat cancer with a juice cleanse.
We have a very flawed class of experts who do know things but sometimes fuck up or are sometimes corrupt.
We have a few good faith critics of said experts.
We have a vast number of cranks and con men and trolls.
Category three vastly outnumbers and out-volumes category two, to the point that to most people it looks like there’s only two categories.
A ton of other topics are like this: climate change, anything anywhere near gender or sexuality, etc. The more politically charged something is the more the middle is excluded and the more people circle the wagons against bad faith actors.
That was for clinical myocarditis in the overall population, but the rate of subclinical cardiac damage among young males was significantly higher, around 1% with abnormal ECGs post vaccination: https://link.springer.com/article/10.1007/s00431-022-04786-0 .
The most frustrating and brain damaged part about this take is that everyone pushing it ignores that not getting vaccinated has 20x higher chance of cardiac damage from covid.
It's literally people arguing not to wear seatbelts and pointing at cases were people lived because they were ejected from the car. Ignoring all the people who lived because they were wearing seatbelts.
The correct framing is "How many young people didn't get myocarditis because they got the vaccine?"
It's contrived and breaks down pretty easily, but why isnt it more like this:
- both wearing seatbelts and getting in an accident have a significant chance of causing x
- you are almost definitely going to get in an accident
- are your chances of x greater or lesser given car accident while wearing seatbelt?
I think your framing is correct (though it'd be better to just say were better off in general), but I haven't seen anyone give a convincing answer to that question in favor of the shots.
In the paper it says 0.1%. " Cardiac symptoms are common after the second dose of BNT162b2 vaccine, but the incidences of significant arrhythmias and myocarditis are only 0.1%." Also note: "subclinical".
"Only"? COVID posed a negligible risk for young males without major preexisting conditions. By contrast, common cardiac symptoms paired alongside significant arrhythmia and myocarditis in 1 in 1000, disproportionately affecting young males, is huge.
And I expect we will eventually come to find out that the overall (particularly longer term) side effects of these drugs have been greatly underestimated. For instance excess mortality continues to remain extremely high [1], even though it would be expected to be negative following a pandemic simply because those most affected by COVID were those already near death. Put more bluntly, disproportionately get rid of the elderly and future death rates should be lower than they would be otherwise. So why are disproportionately large numbers of people continuing to die?
One also needs to understand that myocarditis is not uncommon, and especially common after viral including COVID itself. Also "subclinical" means that this includes mild cases and here the 0.1% also included arrhythmia. Looking at the other paper above, they found 1 (!) person with subclinical myocarditis while screening for it in a population of 4928. Also interesting to put this in perspective: "Underlying disease was present in 109 (2.2%) of the patients, with simple congenital heart disease in 33, mitral valve prolapses in 36, arrhythmia in 36, Kawasaki disease in 11, and previous myocarditis in 2"
Your idea that excess mortality is caused by the vaccine rather than COVID itself seems far fetched to me.
Your own link shows 128 cases of myocarditis within 7 days of ~2m vaccinations for 12-17 year old males, against an expected rate of 0-4. That's an overall rate of 1:15,000. And that study is based entirely on people with severe enough side effects for them to end up in the hospital following vaccination and to consequently be diagnosed with myocarditis, and only within 7 days. In other words it's definitely lowballing the figure.
And it's things like this that destroy trust. Because we're already speaking of an unacceptably high rate of severe side effects, based on this single one (amongst many possible), for that demographic. Typical rate of severe side effects from vaccines are in the 1:1,000,000 rate. So why was this recommended, and defacto mandated, for that age group, again? And where's the accountability for those that made this decision, and for the trials that failed to make clear such extremely high rates of side effects?
I realize I'm going on a slight tangent instead of arguing my rather extreme claim. The point I'm making here is that the messaging on these vaccines has not been carried out in good faith, and that they do have clear and severe side effects that should have made them a non-starter for at least certain demographics. And as we continue to see excess mortality rates that are comparable to what it was mid-pandemic (during the lulls between spikes), the possibility of longer term side effects seems to me to be, at the minimum, viable.
The 1 in 1000 figure comes from a study where they did an ECG on 5000 high school students. They found one case of myocarditis and four cases of arrhythmia, all of which improved on their own. You can't compare that 0.1% figure with figures from studies that look at millions of people and see how many were diagnosed with myocarditis, because the act of giving everyone an ECG will lead to diagnosing more cases of myocarditis. The proper comparison is how many cases of myocarditis and arrhythmia would they have found if they did an ECG on 5000 high school students who got COVID-19 without being vaccinated. And the answer to that is they would have found at least a comparable number of cases because viral infection is the most common cause of myocarditis and because our population-level studies show excess cases of myocarditis after COVID-19 infection in unvaccinated people.
If I understand you correctly, your hypothesis is that a COVID-19 vaccination, while it doesn't immediately kill someone, can cause conditions which lead to increased mortality.
With people still being re-infected by COVID, despite the pandemic being "over," could a COVID infection, itself, cause conditions which lead to increased mortality (for people who don't die from acute infection)?
I'm not proposing this as an either/or; I'm just saying that the vaccine wasn't the only change since 2020 :)
Comparing these two numbers is completely wrong. The study that you cite performed an ECG on 5000 high school students after a COVID-19 vaccine and found 50 had abnormal ECG. But having an abnormal finding on an ECG doesn't actually mean that there's any underlying heart condition. I just went through this myself - I had a bunch of ECGs for a clinical trial (unrelated to any cardiac issue). One came back abnormal. Repeating the ECG in my PCP's office showed nothing. A cardiac stress test showed nothing. About 10 other ECGs for the clinical trial showed nothing. It was just an incidental finding. Saying that 1% have "cardiac damage" because there's an abnormal ECG is just completely wrong. The test has a false positive rate that's greater than 0. And 50 abnormal findings does not mean 50 cases of "cardiac damage". In fact there were 5 - 1 myocarditis and 4 arrhythmias. All of these cleared up on their own.
And finally, you can't compare the two studies because they are looking at fundamentally different things. The 3 excess cases per 100,000 doses comes from looking at millions and millions of health records, so it will only show cases that were actually diagnosed in the real world. The paper you cite performed an ECG on everyone in the study - so of course they are going to find vastly more cases, because they are doing vastly more testing. But that study is not performing ECGs on anyone who gets COVID but has not been vaccinated. If you did that, you would also see myocarditis, because viral infection is the leading cause of myocarditis.
You cannot conclude anything from the study that you cite about the relative cardiac risks of the vaccine - it's just not a study that's designed to do that.
Exactly this - vaccinate even a small town and cardiovascular issues will start popping amongst the neighbors, there is very good reason why there has been, and is, a public backlash on the MRNA vaccine usage among those who have eyes to see and ears to hear.
Every time I've gotten an MRI the doctors and techs have sworn up and down it's impossible for this stuff to stick around. Getting tired of not being able to believe what doctors say...
That's surprising, it's at least casually known that they're bio accumulative to some extent. I've joked to the techs before about gadolinium eventually accumulating enough to not be necessary if you do it with enough frequency. Realistically though any situation that you're doing the contrast you're probably at a lot more risk of whatever they've found than from the contrast agent.
A chemist gave a great talk about this at a big MRI conference (ISMRM) in Paris 10ish years ago. His explanation was that gad behaves a lot like iron does in the body. It deposits where iron does and like iron it lacks a metabolic route for removal (though menstruating females lose iron).
He stated that deposition was entirely predictable. However the harm caused is still debated.
The article here says ‘ Dr Wagner theorized that nanoparticle formation could trigger a disproportionate immune response, with affected cells sending distress signals that intensify the body’s reaction.’
Emphasis on ‘theorised’.
Deposition is discussed in the below link, and the comparison with iron is briefly mentioned.
I had to have contrast to diagnose a simple cyst, which is entirely asymptomatic and was discovered by accident in the background of a cardiac MRI (family history of SCD, but my own heart is fine).
You're making me feel lucky about what was otherwise a very unpleasant experience!
Maybe, but I was taking an immense amount of vitamin C as prescribed by the doc to bootstrap the healing process.
So this reveals to me two issues
1. In general side effects of the contrast agent are not communicated properly. If I knew, I might have asked - hey can you do the analysis without the agent?
2. There’s no recommendation to avoid vitamin C prior and right after the MRI, heightening the risk.
Maybe donate some plasma afterward. There was a study about firefighters exposed to microplastics that had a statistical reduction after regular donations.
> I was kind of annoyed I wasn't offered and MRI, and here we are.
This paper isn’t saying that MRI contrast agent is high risk in general.
There’s a risk in misinterpreting these niche papers to overstate their relative risk. This is a common mistake when people start reading medical papers and begin overweighting the things they’ve read about as the most significant risks.
CT is cheaper than MRI, and it's harder to get insurance to pay for the latter. There are some legitimate diagnostic reasons to prefer CT imagery, but I think cost may be a more common deciding factor.
> I agree. Expecting perfection from humans, even experts, is not reasonable and is frankly counterproductive.
There's a big difference between perfection and "Statistical Literacy Among Doctors Now Lower Than Chance"[1]. I don't think their intentions are bad, but they are woefully incompetent at many basic things.
> There's a big difference between perfection and "Statistical Literacy Among Doctors Now Lower Than Chance"[1]. I don't think their intentions are bad, but they are woefully incompetent at many basic things.
As it happens, the daily practice of medicine does not require interpretation of p-values. Indeed, medicine existed before the p-value.
The people who create studies that ultimately guide policy decisions are specialized (much like people who write GPU drivers are different from those who run inference)
> As it happens, the daily practice of medicine does not require interpretation of p-values. Indeed, medicine existed before the p-value.
What are you talking about? Doctors refer people based on test results every single day. From what I've seen, hardly any of them understand the precision/recall of the tests that they then use to refer you (or not) to screening procedures (which are not all harmless).
What are you talking about? How is a single lab value going to generate a p-value? Why are you presuming that your family med doc should be calculating an ROC for each of her 1,500 patients?
The selection of lab critical values is performed by experts in clinical pathology. Exactly the people who were not included in the paper you cited.
You can find links to support any argument you want on the internet.
To place this in clearer HN terms, you're saying that a front end dev is trash because he didn't write his own web browser in assembly.
To be fair, being knowledgeable about the pre-test probability of a patient having a certain disease vs the sensitivity/specificity of a test IS part of the ideal practice of medicine, although how important it is in practice varies somewhat between specialities. In rheumatology for instance, it is front and center to how you make diagnoses. I was in primary care for a short while myself, and on more than one occasion regretted deeply ordering certain rheumatological screening panels (which you get without asking for it when looking for certain antibodies).
Explaining to a parent the fact that their child did in fact not have a rare, deadly and incurable multi-system disorder even though an antibody which is 98% specific for it showed up on the antibody assay, that we took for an entirely different reason, is the kind of thing thats hard to explain without understanding it yourself.
Bayesian thinking isn’t about p-values and doesn’t need to be presented that way.
If you use the centor criteria before resting for strep, is that worse than getting out a piece of paper and researching background population prevalence?
The OP is being dogmatic about doctors needing to know things he does which is obviously silly.
Edit - but yes, I agree that we should think about sensitivity and specificity, I just don’t think you need to be a statistician, just to have a helpful script and resources for patients who wish to know more.
I can only presume that they got the atomic symbol for potassium (K) mixed up with vitamin K. That’s so wrong it crosses over into being “not even wrong” but entirely wrong and beside the point. I hope they aren’t your doctor anymore, or anyone’s. Please tell me you reported this incident to the state medical board.
Literally every single medical procedure, down to the most mundane, has risks.
That's why we don't give MRI's out the wazoo. We actually gatekeep them a lot, and most research will tell you that investigative MRIs without chief complaints are a bad idea and we don't do them.
I had cancer. I had no MRIs, but multiple CT and PET scans. CT scans and PET scans have risk - they don't just do those for kicks. But you know what else has risks? Cancer. So there's a calculus here.
Every single medical procedure, down to getting your blood drawn, has this calculus. Nothing is risk free.
The biggest risk is false findings for a lot of diagnostic procedures. A false finding may cause enormous psychological stress, but more importantly it usually causes further, more invasive testing, which may pose much higher risks than the original procedure did. It's real statistical risk, which individual patients emotionally often can't relate to. Eg. an MRI shows clear signs of a tumor, you consequently get an endoscopic biopsy through your stomach, or colon, and then happen to die from anesthesia, intestinal perforation, sepsis... The "tumor" turned out to be a cryptic but harmless extra intestinal loop. Sounds made up, but this sort of thing happens enough to make unnecessary diagnostic procedures more harmful than beneficial.
However, I do think the reason MRI aren't used more often is because they are fucking expensive to operate. They need to run more or less 24/7 to be economical, which means they are commonly not scheduled with slack for "optional" investigations.
Incorrect, there is risk associated with performing MRIs without chief complaints.
These types of MRIs often cause anxiety and can lead to riskier medical procedures that are not necessary. This is because imaging is actually not perfect. There is always a risk you see something there that is not a big deal, or that you misinterpret the image. That potentially means unnecessary surgery or medicine. That can kill you.
That's why if you go to any doctor in the US and say "I want an MRI, no, nothing is currently wrong with me" they won't do it.
The data until recently suggested that, so thats the risk you take. Would you rather be living in ancient greece and shoved full of hemlock leaves for arthritis? Or have a 19th century surgeon remove your appendix?
There's risk in life and odds-wise if you're in the developed West, you're going to get care and medicine that will greatly prolong your life.
Also this paper is super vague. What percent of people even get this? How long does it last? They havent even done a study to see how long it lasts yet. I have a feeling this isnt going to be our generation's asbestos or thalidomide.
That being said, you should decide your own risk profile. If MRI gives you concerns there are alternatives that dont involve contrast.
But given our track record, a little humility would go along way.
When a highly educated doctor tells you that something is safe, a person is going to assume that means that someone somewhere has proven that the substance is safe. If what they really mean is that no one really knows, but so far, no experiments have been able to prove danger, then we should say that instead.
> When a highly educated doctor tells you that something is safe, a person is going to assume that means that someone somewhere has proven that the substance is safe.
Contrast agent has been widely studied and determined to be reasonably safe. You’re not going to be administered any routine procedures or compounds that are known to be dangerous without an examination of the risks and benefits.
> If what they really mean is that no one really knows, but so far, no experiments have been able to prove danger, then we should say that instead.
“No experiments have been able to prove danger” is too generic to be usefully different than saying that it’s understood to be reasonably safe.
Even this paper isn’t saying that contrast agent is bad or dangerous in general. It’s exploring a potential effect that we can now detect and study.
Exactly...it's also not reasonable to be asked to prove a negative. "Prove it's safe" (equivalent to "prove there isn't any danger") is "prove there isn't a teapot orbiting Venus" territory.
Every procedure has some negligible risk, and doctors are trained to mitigate major risks to peoples' health with screenings, medications and surgeries that are of lesser risk than the alternative of inaction. "Safe" is a reasonable explanation for the vast majority of laymen they have to communicate with.
My point is not that you must prove it safe. My point is that it is dangerous to communicate to people that something is safe, and simply assume that they understand that negatives can’t be proven, and you don’t literally mean that someone has proven it to be safe.
This is pretty much how we get into the territory of "this product may contain peanuts" even if it has never even been near peanuts, but that warning is need because if in the offcase it has touched peanuts the company can't be sued. But this makes pretty much every other warning worthless.
We shouldn't have to clarify that everything is only 99.999% safe and assume that everything carries some form of risk even if small.
By that standards everything we do is unsafe. Every single activity we do carry some neglible risk. Explaining all of these would be lot more trouble than value in general.
Which is strong evidence that the danger is very small, very rare, or takes a very long time to develop.
You don't need a large clinical trial to prove that being shot in the head is harmful; you do need a very large trial to detect that, say, a drug increases the risk of cardiovascular disease by 4% in a specific sub-population.
By that definition there is literally no substance in existence that has been proven safe. Because the definition of safe is that no experiments have been able to demonstrate danger.
You know that you can’t prove a negative.
I know that you can’t prove a negative.
Probably most people on HN know that you can’t prove a negative.
But when a person who doesn’t spend their time nerding out on science goes to the doctor and hears, “the substance is safe”, it is not a guarantee that they know that you can’t prove a negative. If you can’t be sure that your audience knows that it’s not possible to prove a negative, then you should be pretty cautious with your words.
Safe, in the context of living on Earth, means an acceptably low risk of a bad outcome.
Tylenol is safe. Tylenol can also permanently damage your kidneys.
Walking is safe. Walking can also permanently damage your cartilage.
Food is safe. Thousands of people die from choking.
We all know this, colloquially. When it comes to medicine, it is as if one's brain hops and skips right out of their ear. It's not magic, it works like everything else on Earth works.
I think there is a non-insignificant number of people who would understand the word safe as no risk, who if something bad happened to them after submitting themselves to such a safe procedure, would find themselves deceived. Technically, I think they would be correct. Therefore, it should be explained that there is a risk but that it is on some order that they can relate to, like the risk of walking down the street.
A doctor will 100% explain that a procedure has a risk. They will say something like this procedure is “generally safe” but there is a very small risk of complications. Then they will make them sign a consent form spelling out those risks.
> I think there is a non-insignificant number of people who would understand the word safe as no risk, who if something bad happened to them after submitting themselves to such a safe procedure, would find themselves deceived.
These people are then dishonest, because they know, deep down in their heart of hearts, this is absolutely not what safe means.
Again, everyone agrees eating an apple is safe. It's even good for you! But they also know every time they take a bite, there is a risk that they can choke and die. They know that. I know that. You know that. Everybody knows that.
Colloquially, even to the most naive, we know that zero risk does not exist, and that "safe" merely means "an acceptably small amount of risk". If we are changing our definitions based on the context, for example, everything on Earth and then medicine, that is dishonesty. If we are dishonest to ourselves, then we are delusional.
Yes, exactly, but that is the definition that people who are not doctors are going to use when doctors tell them that something is safe. So we shouldn’t do that.
There is nothing mathematically 100% safe, the human meaning of the word inherently involves some kind of uncertainty.
Going for a test itself via car has a quite significant risk itself, should the doctor say that you shouldn't move out of this room, it's not safe?
Like even regularly used medicine has some slight chance of an adverse reaction, that's how minuscule side effects multiplied to human population times the number it's taken results in.
Guess what often has many orders of magnitude greater risk? Continuing having the disease you went to the doctor with in the first place, or having it lie undiscovered.
Around 10 years ago, I had an brain MRI with contrast. I specifically googled it and found a paper saying it builds up in the brain. I asked the MRI specialist about it, she was surprised I knew this and said she was familiar with the research. She mentioned that her professor also knew about it, but that the paper had other motivations, some conflict of interest, and that I shouldn't be worried. FFS.
Contrast isn't always necessary. Am not a doctor, but I have MS and get them regularly.
I've only had a couple with contrast. My understanding is that contrast highlights abnormal stuff and some tissue sorts more than without contrast. Specifically, they use it in MS to get a better look at an active lesion in the brain. You can still see the lesion without the contrast, though, so most of the MRIs are taken without contrast and then another with contrast if necessary. They have known about various side effects of contrast for some years (allergies, etc).
My son had an MRI with gadolinium- turns out he is allergic to it, he developed a full-body itchy rash. There were like 20 interns in to see him, for the experience I guess. They were ready to send him to the ER in case it interfered with his breathing, luckily it didn't.
That would have been frightening. Did it require treatment beyond antihistamine?
I’ve given MR contrast to patients a lot of times (probably tens of thousands) and have seen hives and rashes a handful of times but vastly more often with iodinated contrast in X-ray procedures (usually CT).
I had an MRI with contrast once. I remember the gadolinium injection made me extremely nauseous for a few minutes, but otherwise it has had zero effect on me personally.
Some sad advice: don't ask doctors about this, my experience is that it will cause them to write you off as a crazy person no matter how you bring it up. Many of them lump this in with what they see as "influencer illnesses", whether fairly or not.
And maybe more practically, if you really need an MRI, whatever you might have is much more likely to hurt you.
Thanks - I've put that link in the toptext above. I'm not sure it makes sense to swap out the submitted URL with it. Hopefully people will take a look at both.
You know what other metal stays in the body, permanently bound to bone and other organs? Bismuth, as in bismuth salycilate, aka Peptobismol. A tiny % actually stays in your body.
Does that cause any symptoms? Because apparently this can, and they tell you how to avoid it.
> Lead author Dr Brent Wagner told Newsweek he personally avoids vitamin C when undergoing MRI with contrast, citing its potential to increase gadolinium reactivity. “Metabolic milieu,” including high oxalic acid levels, could explain why some individuals experience severe symptoms while others do not, he said.
Avoiding high-oxalic foods for a few days before the MRI also seems like a good idea. Just check the diet for calcium oxalate kidney stones.
"After ingestion, bismuth is primarily found in trace amounts within organs such as the kidney, liver, spleen, and, in rare cases, the brain, where it accumulates intracellularly—especially in lysosomes and nuclear membranes—and extracellularly in basement membranes of blood vessels.[1-4] In normal therapeutic use, the amount of tissue-bound bismuth is extremely low and is not associated with adverse effects.
Potential consequences of tissue-bound bismuth are generally negligible at standard doses, but chronic or excessive exposure can lead to toxicity, most notably neurotoxicity (bismuth encephalopathy).[1][4-6] In cases of bismuth intoxication, histochemical studies have shown accumulation in neurons and glial cells, particularly in the cerebellum, thalamus, and hippocampus, with clinical manifestations including confusion, myoclonus, and encephalopathy.[1][4-6] However, these effects are reversible upon discontinuation of bismuth exposure, and recovery is typically complete within weeks.[5-6]
Animal studies confirm that bismuth binds to proteins such as ferritin and metallothionein, and is retained in lysosomes, nuclear membranes, and myelin-associated proteins.[2][4][7] The kidney is the primary site of accumulation and excretion, and tissue levels decline after cessation of exposure, with little evidence of permanent retention at therapeutic doses.[2-3]
In summary, permanent tissue binding of bismuth is minimal and clinically insignificant with standard use, but chronic high-dose exposure can result in neurotoxicity and other organ effects, which are reversible after stopping bismuth.[5-6][8-9]"
1.
Autometallographic Tracing of Bismuth in Human Brain Autopsies.
Stoltenberg M, Hogenhuis JA, Hauw JJ, Danscher G.
Journal of Neuropathology and Experimental Neurology. 2001;60(7):705-10. doi:10.1093/jnen/60.7.705.
2.
Metallobiochemistry of Ultratrace Levels of Bismuth in the Rat II. Interaction of Bi With Tissue, Intracellular and Molecular Components.
Sabbioni E, Groppi F, Di Gioacchino M, Petrarca C, Manenti S.
Journal of Trace Elements in Medicine and Biology : Organ of the Society for Minerals and Trace Elements (GMS). 2021;68:126752. doi:10.1016/j.jtemb.2021.126752.
3.
Distribution of Bismuth in the Rat After Oral Dosing With Ranitidine Bismuth Citrate and Bismuth Subcitrate.
Canena J, Reis J, Pinto AS, et al.
The Journal of Pharmacy and Pharmacology. 1998;50(3):279-83. doi:10.1111/j.2042-7158.1998.tb06861.x.
4.
In Vivo Distribution of Bismuth in the Mouse Brain: Influence of Long-Term Survival and Intracranial Placement on the Uptake and Transport of Bismuth in Neuronal Tissue.
Larsen A, Stoltenberg M, Søndergaard C, Bruhn M, Danscher G.
I think the thing to remember with this, as with any kind of medical procedure, is the benefits versus the risks. In many cases, if you're getting this kind of MRI contrast, there's probably a good reason for it. So even if there's some risk, it might be better than say, the cancer or something else they're looking for. I feel like this is something that's often forgot in these discussions.
1. The correction doesn’t invalidate that previous study at all
2. I fail to see how the previous study is an “underpinning” of the new paper. The new paper is a chemistry paper about dissociation of GBCAs in the presence of certain chemicals. Maybe people care because it is a potential explanation for toxicity, but the paper is very focused on the chemistry findings.
It is underpinning, as it is the most frequently cited in the entire paper.
It is underpinning, as the claims in both introduction and conclusion are precipitate to it.
The correction:
> After personal communication with the radiologists the administered Gd-contained contrast agent was documented in the MR examination reports of the mentioned nine patients incompletely and inexactly as Gd–DTPA by themselves. There is solely one MR contrast agent used in the described observation period: Gd–DTPA–BMA. Therefore, all mentioned nine patients received Gd–DTPA–BMA and not Gd–DTPA.
Means that Gd-DTPA is irrelevant. Guess which is analysed here?
I’m not a specialist so I can’t comment on how significant that is.
We generally don’t use the compounds that cause NSF, which is one reason why the 2006 paper link you provided may not reflect the agents under current study.
As someone with CKD and scheduled for an MRI, this was anxiety-inducing.
The Cleveland Clinic has a good overview[1]. Since there have been no reports of NSF in 15 years, I don't think it's rational to avoid MRIs based on gadolinium retention concerns.
Yes. The problem is that it's common in the industry. But it's ultimately up to the patient. Maybe alone. Pretty much guaranteed scared. Undereducated, worrying about their likely life threatening potential illness or injury. That's basically under duress.
What are you proposing instead? Should patients just die of their illness instead?
Medical procedures have risk, some are small risk some are higher risk. There are none that are 100% safe. Doctors are supposed to evaluate if the risk is worth the value the procedure would supply.
What is the alternative to the status quo that you would propose?
Well, there are manganese-based contrast agents under development. Maybe we should give those a little more funding.
Like Gd, Mn is toxic, but unlike Gd, Mn is naturally present in the body (and also in pineapples) which means that long-term accumulation is less likely. The main difficulty is the lack of strong enough complexing agents because of the tendency for zinc (naturally present at relatively high concentrations in the body) to steal the ligand from Mn, a problem currently being studied:
During COVID people were losing their minds about one in a million chance of complications caused by vaccination. I did some research (but actually), and found that that’s comparable to the rate of complications for any use of an injected drug or even saline. Just piercing the skin with a tiny needle is a “medical procedure” with a non-zero risk, especially in the elderly and the immunocompromised.
I had a couple of MRIs recently and got curious about gadolinium contrast. Again, there is a non-zero risk, but if you eliminate the cohort with reduced kidney function and those getting regular repeated MRIs, the risk is comparable to the use of an I/V, which is how it’s administered.
The only thing that upset me was that the staff didn’t ask me verbally about kidney issues to double-check. They also didn’t remind me to drink a bunch of water to flush it out of my system. (Some articles recommend administering a diuretic.)
For that matter they didn’t check me properly form metal fragments either!
Similarly, I’ve had vaccinations administered where I had to remind the doctor to clean the area with alcohol first and to tap the syringe to get rid of the bubbles.
Bad procedures are more dangerous than the drugs being administered!
The risk with gadolinium is that it is never fully removed from your system and if you are allergic to it, it means a PERMANENT whole body allergic reaction. Skin itching and incurable chronic pain. It has nothing to do with kidney function.
I got familliar with this condition by a random persons blog who go affected by this during normal MRI and also didn't expect to be part of 1-2%. Unfortunately the blog is now gone, and that post now only lives inside my RSS reader.
Well no one should get MRIs with contrast for fun. Moreover, doctors regularly use contrast off label.
My dad was in this industry when nsf first came out. We would be dragged along to after hours family things at conferences. Doctors openly said they gave contrast off label at dosages not approved by the FDA for organ systems not approved by the Fda. Even children. I'm sure they had their reasons, but I'm also sure they never disclosed the possibility of nsf and just told parents their kids needed it, because they admitted it.
There's a big difference between not getting the MRI and getting the MRI without gadolinium. My suggestion is to ensure that people know the risks outside of just the people who work in it. I'm not sure how that didn't get across in my original comment. With your comprehension skills, you are at an increased risk of falling victim to this exact scenario
My understanding was that gadolinium was already only used in cases where a normal MRI would be ineffective.
I don't know how the risk is actually communicated to patients. I imagine it varries by country. However, normal medical ethics would be to explain risks to the patients. Is there a reason to believe that isn't happening?
There’s really a risk vs benefit. If you have a brain tumour you need contrast to assess the type of tumour, its growth, if it’s a glioma whether it’s transformed and so on. If someone is being given contrast it is going to change their clinical management.
It seems an odd fixation of just MR contrast when the same could be said of all drugs. Does your doctor/surgeon go into the minutiae of all drugs and possible consequences? By this line of thinking, saline is not without risks, should they go into depth about that?
People already poorly retain information or even comprehend it at appointments or interventions, is there any point adding more burden onto their attendances?
Nobody explains shit like this. They will turn down the risks because if they were honest, most wouldn't accept that risk. Because the risk is PERMANENT life changing condition.
>>> Yes. The problem is that it's common in the industry. But it's ultimately up to the patient. Maybe alone. Pretty much guaranteed scared. Undereducated, worrying about their likely life threatening potential illness or injury. That's basically under duress.
> There's a big difference between not getting the MRI and getting the MRI without gadolinium. My suggestion is to ensure that people know the risks outside of just the people who work in it. I'm not sure how that didn't get across in my original comment. With your comprehension skills, you are at an increased risk of falling victim to this exact scenario
I don't see anything wrong with the GP's comprehension skills.
Anyway, every procedure has risk - and no procedure is recommended if there is not an offsetting clinical benefit. There are clear guidelines for when gadolinium is to be used for an MRI and the guidelines factor in risk for 'NSF'.
When I had mine I got the form with warnings about side effects. When I saw the allergic reaction I was a bit concerned, I asked the tech and was told it wasn't a big deal. Since I was in the basement I didn't have service and I decided to trust them given the large number of my friends who've had MRIs. It was fine, but it seemed like a major thing to toss in the patients lap right before they get strapped down in a tube.
But there’s a potential risk of an allergic reaction to any drug you take, any food or drink you consume, even environmental substances - perfumes; hayfever is an allergic reaction to pollens. You don’t know you have one until you have the reaction. I didn’t know I was allergic to penicillins until I needed them for an infection and it turns out I am.
People getting MRIs frequently have bigger fish to fry.
When my wife was under cancer treatment she had them frequently. Risking some minor reaction, which in her case was disclosed many times, was well worth the value in managing the acute and long term treatment plan.
> Undereducated, worrying about their likely life threatening potential illness or injury. That's basically under duress
I was never communicated about gadolinium pollution. Not once.
And yes, on my recent MRI, I explicitly asked why there was metal particulate in my joint. "I dont know, sometimes it happens'... No you fucking tool of a doctor. Its gadolinium.
Are you certain it is gadolinium? As I recall from a family member's health issues you can get particulates in joints from arthroscopic surgery or from the metal implants. Not saying that is what happened in your case, but I'm just curious because I remember reading about metal in joints as a potential side effect of the surgery.
I find it odd that when I happen across an article talking about some negative links between x and y being discovered, there's always someone in the comments saying this was known for some decades.
My kid went to brain MRI because of migraines (standard procedure here for kids to check if there is e.g. a tumor causing the headache). I was pretty nervous due to this kind of research and the preparatory material saying that they might need to use a contrast agent. In the end they didn’t use a contrast agent and I stressed unnecessarily.
Just as a heads up from a rando on the internet this sort of research is trying to understand mechanisms of things that happened 20-30 years ago and people who were exposed back then (sometimes many times with significant accumulation).
Gadolinium is toxic so contrasts trap it with protective molecules that hold the gadolinium until it leaves the body (most leave via the kidneys, but some also leave via liver/gallbladder). Some fraction of gadolinium escapes depending on the structure of the protective molecules. After the problems with the older contrasts were found kidney function became important (impaired kidney function allows more time for gadolinium to escape) and later new contrasts were designed that are much more stable. The gadolinium contrasts we use today are much more stable than the ones we used previously and there haven't been any cases of the sorts of things this article is about in over ten years. But there are a lot of people alive who received the old agents many times and in higher doses than we use today.
I don't want to diminish the concerns (and frankly I think this is important to understand what happens to gadolinium in the body), but the exposure and accumulation are significantly lower today than they have been in the past because reducing exposure has become a major focus of design safety for gadolinium contrast and the worst offenders have been voluntarily withdrawn from the market.
Anyway if my kid needed contrast for accurate diagnosis, I'd do it. I work at a pediatric hospital and generally the way it works is if contrast might be needed its ordered and consented so that it's an option. During the scan radiologists check the images and decide whether contrast is needed to answer the clinical question (although in general that's more a question of time management if the question has already been answered, there's no reason to keep imaging).
> Nobody told me gadolinium can be retained before I had it the first couple times.
The reason these publications exist is that this is new knowledge
> Like somebody else mentioned, they swore up and down it's perfectly safe.
I am positive that you were not told that '[gadolinium] is perfectly safe' because there is a well-known complication of gadolinium administration. It's rare, but it's mentioned in every consent form.
> I am positive that you were not told that '[gadolinium] is perfectly safe' because there is a well-known complication of gadolinium administration. It's rare, but it's mentioned in every consent form.
Consent is not "Sign this cause its the only course of treatment". And thats what happens almost every time.
And yes, I too have gadolinium retention in my joint. 3 MRIs. And no, was not told this was a complication... But I'm sure the papers I signed included weasel words to that effect.
> And yes, I too have gadolinium retention in my joint. 3 MRIs. And no, was not told this was a complication... But I'm sure the papers I signed included weasel words to that effect.
The presence of the gadolinium is not a complication. At best, it is an unintended side effect whose clinical significance is not known.
A complication is an unexpected/non-routine, negative outcome. We now have learned that the deposition is something to expect. There is no new information around clinical changes that one can attribute to gadolinium.
Metal artifact and contrast enhancement (from gad) look very different. Accumulation in a joint is unusual too, though direct injection during an arthrogram would cause this. It generally goes away over a couple of days as it’s absorbed.
I think you must have misunderstood where the artifact was coming from. Gadolinium retention has been shown to occur, but has not been reliably linked to any clinical symptoms. Gadolinium tissue retention also does not interfere in interpretation.
It seems only patients with advanced renal disease are effected. So, my suggestion, no Gad in patients with increased Creatine (even Stage I renal disease).
That’s what is done clinically - though only with severely reduced function. Giving it with an egfr below 25 or 30 is generally avoided. However it is still done when life or limb are at risk.
Note that MRI with contrast has very low risk and I am not aware of any evidence that Gadolinium retention even has adverse health effects. It is a concern though and this is why it is being studied. But I do not think the use of MRI contrast agents is something anybody without kidney disease should be concerned about. In general, risks and benefits must be balanced for any medical procedure. Such risks are continuously monitored and studied and guidelines are formulated based on this. Also consider that there is very clear harm from people being scared away by misinformation from medical procedures they would benefit from.
Interesting to see this on HN. I was part of the research group which published this back in 2015 [1], I think we were the second group worldwide to publish this.
So, first off, this is not new. The linked publication here mainly seems to be explaining a potential mechanism of how it might happen.
Some quick notes to aid in a constructive discussion - bear with me, it's been a while and I've left research and since worked as a software developer, chuckle:
- Different gadolinium agents have vastly different "buildup" characteristics - some are better, some are worse. Biochemically, the ones where the gadolinium was trapped in harder "complexes", those were more stable (less accumulation). I suck at biochemistry, so all of those words may be wrong.
- If you'd want to over-engineer this, you could indeed select your MRI hospital / practice based on which gadolinium agent they use.
- Unless you're getting a ton of MRIs (think multiple sclerosis monitoring etc.), you probably won't be affected.
- Most MRIs are without contrast agent anyway, so you probably won't be affected.
- The last I heard was that the clinical implications were still being investigated - like, yeah, you do see a buildup of gadolinium in patients who 1) get certain gadolinium agents and 2) have a ton of MRIs, but what does that mean they'll suffer any clinical consequences from this? Not sure. I heard that there was a paper (.. somewhere) which at least showed a correlation with worse MS outcomes of people who had a high buildup, but then again, cause-effect here is not clear as people with worse MS tend to have more MRIs, too (correlation != causation).
Gadolinium has killed many many people. Many healthy people like me became chronically ill due to Gadolinium based contrast agent. We all had healthy bodies no history of kidney issues. One dosage of gadolinium contrast and the body couldn’t handle the toxic element which is a heavy metal for the body. The body is not designed to remove this on its own. It destroys the tissue it contacts with. FDA has to pull this poison out.
There are risks with every procedure and medication.
A dose of ibuprofen could give you Stevens–Johnson syndrome or TENS and you end up in a burn war for months.
Patients should be made aware of all the risks for any treatment, but it would be impossible to avoid they edge cases even with relatively basic medical care.
Most people lack the medical literacy to understand any of this. People don’t read their letters telling them to not eat before surgery, are they going to read the list of potential side effects of a medication? How many people read the information sheets that come with their prescription medication?
When my wife worked check-in for a surgeon, she used the line, "Good morning ${PATIENT_NAME}! What did you have for breakfast today?" as a shibboleth for sending patients home to reschedule.
Great. Only this year, I got roughly 6 doses of gadlinium, and prior to that, I got one every year, going back 20 years. I just recently chatted with a MRI nurse about the fact that I have a bad feeling about getting that stuff so frequently over time, and she dismissed my concerns. They used to remind patients to drink more after the MRI, but even that routine has been ended roughly 5 years ago. Is there anything else I can do except drink more on the day of the injection?
Some contrasts are more stable than others - however I’d be surprised if anyone was using linear agents anymore. Macrocyclic contrast agents bind the gad more tightly.
This is very interesting to see on here. My mother was the dissenting vote on an FDA panel on this. There are articles about it. I'll copy her words (as reported by something but seems legit)
> She said that the FDA's plan doesn't go far enough.
> "It's hard to dismiss an anecdotal report when you are the anecdote. When a patient is finally tested and found to have gadolinium retention, there's no FDA-approved antidote. So what does the patient do?"
And I want to reiterate that she was "the" no not "a" no. I don't know if her vote alone is what's caused more research into this. But it's probably the thing I brag about her the most. Even though everybody else said it was fine or abstained, she stood strong. If you look up the articles from the time of the panel (2017) you'll see a lot of articles about this panel and how she was the sole no vote. Included in that was a public post from Chuck Norris praising her. He was going to come out to meet us but I think it was a bad Texas hurricane season so that fell through
In case anyone is wondering what Chuck Norris has to do with all this:
> Chuck and Gena Norris filed a lawsuit against several medical companies in 2017, alleging that a gadolinium-based contrast agent used in Gena Norris's MRIs caused her to develop a condition called gadolinium deposition disease and resulted in debilitating symptoms like cognitive issues, pain, and muscle wasting. In January 2020, the Norrises, along with their attorneys, voluntarily dismissed the lawsuit with prejudice, meaning it cannot be refiled. The dismissal was made without a settlement payment, and each party paid their own legal costs.
It might give a glimpse into his worldview to mention that during the COVID pandemic Mr Norris shared an article on social media that claimed that the COVID vaccinations killed millions of people. [0]
[0] https://m.facebook.com/story.php?story_fbid=870953857718632&...
His reaction is kind of the essence of populist backlash.
People are told that the authorities have it all under control and the experts can be trusted. Then they discover that the experts are human, fallible, and sometimes incompetent or corrupt.
Since the original message was one of unqualified absolute faith in the experts, the backlash is to flip over to believing that the experts are satan incarnate and pure evil and always wrong.
It reminds me psychologically of the arc of an immature relationship. First they’re perfect, everything about them is perfect, they’re going to be your soul mate forever. Then you catch them in a lie or they do something embarrassing. Then you get the screaming breakup. Everything about them is the worst now and you never want to see them again.
I have no feeling in the top of my mouth after a “successful” deviated septum operation when I was a teenager. I was told it would resolve, it never did.
I can’t go outside in mildly brisk weather without a tissue as it’s a constant stream, and I get debilitating headaches that are almost like migraines with the pain situated right at the bridge of my nose. Also found the procedure enlarged my sinus opening for no particular reason, something my teenage self wasn’t aware of.
It seems to be getting worse over time, and I have localized pain in the area periodically. I can tell you from first hand experience, it will skew your view of medicine and the field, and I have plenty of MDs in the family.
Some people just take it a little too far.
> I was told it would resolve, it never did.
Ha, yeah, doctors say that about just about everything that's a bit abnormal just to get you out of their office. Was told similarly for two conditions I still have. It sounds better than "Uhh I have no idea what that's about, there's 68 patients waiting in line, good luck".
The way I see it, medicine is about trying to fix a black box with absurd levels of complexity that does not follow any sensible design, where every body is not even arranged in the same way. All that without a manual and only rudimentary tools. They mostly just guess based on statistics and hope for the best, they have no idea what they're doing and if at all possible they try to let your body resolve the issue on its own because it'll do less damage.
Still usually beats the alternative though (i.e. nothing).
> Ha, yeah, doctors say that about just about everything that's a bit abnormal just to get you out of their office.
Ha, "just keep waiting", knowing we all have timeouts that'll expire when we drop dead...
A large portion humanity seem incapable of embracing uncertainty and nuance and are over eager to embrace whoever is willing to peddle certainty and simplicity.
As long as that is true it seem naive to believe that nuanced institutions can exist as dominant entities in human societies.
This is true, but it is also true that "official" communication often tends to project level of certainty that just does not correspond to the actual level of knowledge, and Covid was pretty bad in this regard, because in absence of actual knowledge, hard recommendations were being issued to people.
Saying sincerely "we are not yet sure if Covid spreads by touching surfaces" etc. would have gone a long way.
I am not even touching the dirty topic of "practise societal distancing unless you go to an anti-racist demonstration, because racism is worse than Covid". That alone probably sunk the levels of trust for a generation in the US, especially among people right of the center. Politicizing science is suicidal.
Back to normal uncertainty. It was the same with various dietary recommendations. Older people remember several major overhauls thereof (are eggs fine or not, and in which amount?), and again, these were presented with a level of certainty that does not correspond to the actual - somewhat fuzzy - state of nutritional science.
You can only do this so long before unleashing an epidemics of distrust.
> This is true, but it is also true that "official" communication often tends to project level of certainty that just does not correspond to the actual level of knowledge, and Covid was pretty bad in this regard
After my SO got her first COVID vaccine she lost her period. It had been rock steady for many, many years and suddenly gone and hadn't come back for a few months. She had a GP appointment, and I accompanied her as I often do as my SO struggles with recalling important details.
My SO told the GP about her missing period, and the GP quickly tried to reassure her it wasn't something to worry about and it would come back soon enough.
Well, I had just read published studies about this and knew the medical establishment had no idea why the vaccine caused a lot of women to lose their period.
So I challenged the GP and asked if she knew what the mechanism was that caused my SO to no longer have her period, and of course she didn't know.
"Well, if you don't know the mechanism, how can you say it's fine this time?", I asked sincerely.
She admitted she was just going off what usually happens when women lose their periods, which can happen due to various kinds of stress. I wondered why it was so difficult to lead with that, instead of confidently stating it would be fine.
My SO did eventually get her period back, but to this day, almost 5 years later, it's still highly unregular.
> it is also true that "official" communication often tends to project level of certainty that just does not correspond to the actual level of knowledge
That reminds me of someone called Chatgpt.
I get it.
The problem is that the populist response isn’t to demand better experts that know more and are held to higher standards.
Instead the populist response is to lower the standards and put people like RFK Jr in charge and get health advice from Joe Rogan.
It’s like having someone do a bad job on home repair and instead of hiring a better vetted more experienced work crew you go recruit some bunch of random idiots who have no work portfolio or no experience beyond shitty DIY work. BUT they are charismatic and you like their vibes.
“The medical profession didn’t do a good enough job so I am turning to random assholes on YouTube.”
> Saying sincerely "we are not yet sure if Covid spreads by touching surfaces" etc. would have gone a long
It wouldn't have, uncertainty creates general panic as well, that soon turns into disarray of chaotic recommendations among the masses.
> It wouldn't have, uncertainty creates general panic as well, that soon turns into disarray of chaotic recommendations among the masses.
A disarray of chaotic recommendations from on high is preferable, I guess?
I especially enjoyed viewing the early covid health department stickers later on. While masks were mandatory, there were health department stickers everywhere from a couple months earlier telling us that they were unhelpful.
I know nuance is hard, but it is entirely understandable that many people have distrust in authority when the message seemed to be high confidence do A(t) and A(t) was often contradictory to A(t-1). At that point, people pick the A(t) that had the advice they like.
When there were things like tell people masks are ineffective because they actually are effective but in limited supply, that also breeds distrust. I don't know how you solve that one, other than having a functional pandemic response logistics chain, and I don't think we ever had that; we did some supply warehousing after SARS but without a process to refresh the stock, it was not effective for COVID. I suspect there's no effort to build that up again, but I'd love to be wrong; my impressions are that the US healthcare and disease control ecosystem has not learned anything from COVID, again, I hope I'm wrong. Maybe acceptance of mRNA based vaccination and some amount of deployment of genetic identification of infection from patients.
IMHO, "short term uncertainty" > "long term distrust".
I don't like the "common people are too stupid to be told the truth" attitude (which includes uncertainities).
It is both too smug to work, and unworkable in today's networked world, where those same people will notice really fast that someone is treating them like idiots, and react with resentment and loss of trust.
Absolutely agree. I think of children as "people who don't know a lot right now". But really, we're all children to some extent. Children are always honed to look for inconsistencies, and if those inconsistencies aren't addressed, distrust builds up. "You said I can't be on my phone too long, so how come you're doing it?" Distrust leads to irrational judgements, often in a broad-brush pendulum swing towards the opposite position. Trust is built up painstakingly and organically. Distrust tears it all down instantly. As long as "the masses" (to which all of us, to some extent, belong) exhibit this asymmetry between trust and distrust, for the people who want to speak truly, the key is consistency. Never be (perceived as) the boy who cried wolf.
The common person can be told the truth. The common people, plural, cannot.
That’s what most authorities believe and there is good reason to believe it.
People in groups are irrational and tribal in ways people are not if you speak to them one on one. We don’t scale well, cognitively speaking. A whole bunch of “game of telephone” distortions happen and a bunch of legacy instincts from when we were little squirrel looking things take over.
If you look at how militaries operate it’s basically a giant set of procedures and customs designed to suppress all that shit and allow people in groups to behave somewhat more rationally. At least for a while, or in a limited domain. It kind of works. But we don’t want all of society to operate like that because it also suppresses art, invention, experience, play, etc.
The tribal parts of our nature can also be soothed by having trust in a good clan chief who is handling things. Those people can say things like "we dont know but we're working on it" because people trust them (requires integrity). Since that is almost non-existant (certainly during covid) we only get the worst parts.
I believe we can do fairly well in addressing people in groups. People are irrational, but the probability distribution of "things we say" against "what people will think and do" can be modulated for the better. The bigger issue, I think, is that the authorities can't be trusted. In what world will you find even 100 people who will agree to hold truth, justice, blah blah in high regard, and actually execute on those words? Corruption in the leaders exacerbates the illness of irrationality in the people.
" is good reason to believe it."
The results of this belief seem to be pretty catastrophic. Trust against authorities has evaporated all over the world.
"People in groups are irrational and tribal in ways people are not if you speak to them one on one. "
Sure, but why precisely do you believe that lies / deliberate misinformation will work better in such situations?
Is anybody able to craft such misinformation so soothing and so believable that the vast majority of the population will accept it indefinitely?
If not, what happens when it becomes obvious that someone in a position of authority communicated dishonestly to the public?
That is the new enlightennents main project, researching these retardations, building societal implants to overcone or at least life with them. Handling the eldritch horror moments where we can not or the handicaps are societal load bearing and future crippling. The faces they make when the dog dies you can not unsee.
It’s why leaders often speak in certainties. X is bad, Y is good type messaging.
It’s also why some people gravitate towards overly-confident narcissists. They feel a sense of comfort when someone seems to have all the answers, even if they don’t.
Just that they always can be until proven otherwise.
Assuming by default that (government|any) humans are working on a selfless incentive structure is arguably insane behavior.
I understand why people do it, but in another way I don’t. If I get a car and it turns out to be a clunker and I hate it, I don’t just go “all cars are clunkers that I will hate” and swear off motor vehicles. People would claim I’m wildly overreacting (and rightfully so). And there are far more experts across a much wider spectrum than there are versions of personal motor vehicles!
If cars were people you might. We are more rational with inanimate objects. When it’s people a bunch of tribal in group out group stereotyping and group solidarity building through out group scapegoating programs take over.
Like I said, I understand why it happens. But it’s also just very easy for me to sit down and kind of talk through why it’s not a good way to operate. There are definitely types of “experts“ and certain fields that I am incredibly skeptical of or maybe even dismiss outright, but to translate that into a broader “basically every doctor and government is lying to me“ as one accepts “outsider” opinions as gospel is just such an extreme reaction.
And normally I wouldn’t really even bother acknowledging that that extreme stance exists. If you look hard enough you can find an extreme stance on anything. But the sheer percentage of the US population that has embraced an almost entirely skeptical/dismissive view of doctors and experts of any kind… it’s kind of horrifying
If you bought a jeep and it was a lemon, you may never buy a jeep again. You just don’t view all cars as fungible.
Do you think most people are capable of understanding why an expert could be wrong about gadolinium but right about vaccines? Medical advice is all seen as equivalent to most.
I guess I’m not really sure what you’re trying to say here. I agree that this is the reality. It’s just wild to me that people can’t (or rather won’t) step outside of it for a moment and think critically when it literally can be a matter of life or death. I think there’s just too much incentive to trust random Youtubers who tell you everything you already think is completely accurate and anybody who tells you to do something different is not only wrong but actively trying to hurt you.
My point is that, the reason people don’t let one bad car experience ruin all cars is because people understand that different manufacturers make cars with different levels of quality. So one bad car will ruin the perception of one manufacturer instead of cars in general.
What is the equivalent when it comes to medical advice? Using vaccines as an example, one concern people have is the mercury content. The FDA, doctors, and drug manufacturers have said that the mercury is safe. The same doctors, manufacturers, and FDA has said that MRI contrast containing another heavy metal, gadolinium, is safe. It turns out that, no, it is not safe.
Given these facts, is it really surprising that people would turn away from the FDA and doctors just like people would turn away from a car manufacturer after receiving a lemon? While I personally trust the FDA, I can see the logic in the distrust after events like this.
> People are told that the authorities have it all under control and the experts can be trusted. Then they discover that the experts are human, fallible, and sometimes incompetent or corrupt.
Try
People are told that the authorities have it all under control and the experts can be trusted. Then they discover that the authorities and experts, in the name of “the greater good”, actively suppressed debate, knowingly mis-represented uncertainties, pretended reports of serious adverse reactions to vaccination were not only impossible but simply fear-mongering from the uneducated, and then pressured social-media platforms to take down factual information when it threatened the official narrative.
This without even touching on the fact that the WHO, who has one damned job, refused to even declare a pandemic and spoke against any travel restrictions or public health measures outside their lazy guidance until the virus was confirmed to be spreading out of control in nearly every nation on earth.
Having lived through this, observed it first-hand, read the studies, having dozens of anecdotal evidence on top from near friends and family, and still not able to even question the new mRNA platform publicly without knee-jerk backlash and demonisation, has done more damage to my faith in institutions and the medical community than anything else I’ve witnessed in my near forty years on this planet. Covid made crystal clear to me that we still live under tyrannical dogmatic rule devoid of scientific nuance because it’s “for the greater good”.
The claim that it is not possible to "question the new mRNA platform publicly without knee-jerk backlash and demonization" is just not accurate. There is a very well-known counterexample. Researchers identified that the mRNA COVID-19 vaccines were associated with an increased risk of myocarditis, particularly among younger males. This is rare - something like 3 excess cases per 100,000 doses. This has been studied extensively. Regulators required additional surveillance and it's included in all the guidance from regulators and physicians associations. The consensus has been that this is an acceptable risk, particularly since COVID itself is associated with an increased risk of myocarditis. Clearly you have a different view, but the consensus view is based on analyzing data from millions of patients across many countries, not on a "knee-jerk backlash".
> The consensus has been that this is an acceptable risk, particularly since COVID itself is associated with an increased risk of myocarditis.
This made more sense to me when people still believed that the shots meant getting covid was very unlikely. It's easy to find people who got lots of shots, it's hard to find people who didn't get covid.
It always seemed implied that p(shot cardio issues) < p(covid cardio issues), and nobody ever talks about p(shot cardio issues) + p(covid cardio issues).
Did anybody rigorously demonstrate that a vaccinated covid case doesn't have these risks?
The vaccine didn’t work as well as we thought it would.
It did work to some extent. It’s there in the numbers. But it was not the resounding success that, say, the smallpox or polio vaccines were. It attenuated the disease a little.
That might change some of the calculus. Or it might not. It’s hard to tell the difference between myocarditis caused by the vaccine or from COVID or from other factors.
Imagine it’s you who gets to make the call. Whatever call you make will be roundly criticized and you might be wrong. If you’re wrong more people will die.
> The claim that it is not possible to "question the new mRNA platform publicly without knee-jerk backlash and demonization" is just not accurate
I’m not a Covid truther, anti-vaxxer, or anything of the sort, but let’s be honest here. Mainstream urban society will absolutely attack anyone who doesn’t adhere to the consensus view on covid (among many other topics). It’s an overreaction stemming from years of dealing with bad-faith trolls. But the net result is an enforcement of a specific political orthodoxy.
> It’s an overreaction stemming from years of dealing with bad-faith trolls.
A billion billion billion times this.
It makes me wonder about the inquisition. There’s a subset of Catholic inquisition apologists who argue it was an overreaction to social breakdown and an explosion of cults, some of which were very harmful. Having seen the rise of mass social media I am no longer able to dismiss this argument as easily. Still don’t quite buy it but there is, as you’d say in criminal law, reasonable doubt.
Every time I question it on social media I get downvoted to oblivion, flagged and/or reported. Ten times out of ten.
That’s because most people who question it are bad faith trolls or crazy ideologues who think you can treat cancer with a juice cleanse.
We have a very flawed class of experts who do know things but sometimes fuck up or are sometimes corrupt.
We have a few good faith critics of said experts.
We have a vast number of cranks and con men and trolls.
Category three vastly outnumbers and out-volumes category two, to the point that to most people it looks like there’s only two categories.
A ton of other topics are like this: climate change, anything anywhere near gender or sexuality, etc. The more politically charged something is the more the middle is excluded and the more people circle the wagons against bad faith actors.
>something like 3 excess cases per 100,000 doses
That was for clinical myocarditis in the overall population, but the rate of subclinical cardiac damage among young males was significantly higher, around 1% with abnormal ECGs post vaccination: https://link.springer.com/article/10.1007/s00431-022-04786-0 .
The most frustrating and brain damaged part about this take is that everyone pushing it ignores that not getting vaccinated has 20x higher chance of cardiac damage from covid.
It's literally people arguing not to wear seatbelts and pointing at cases were people lived because they were ejected from the car. Ignoring all the people who lived because they were wearing seatbelts.
The correct framing is "How many young people didn't get myocarditis because they got the vaccine?"
It's contrived and breaks down pretty easily, but why isnt it more like this:
- both wearing seatbelts and getting in an accident have a significant chance of causing x
- you are almost definitely going to get in an accident
- are your chances of x greater or lesser given car accident while wearing seatbelt?
I think your framing is correct (though it'd be better to just say were better off in general), but I haven't seen anyone give a convincing answer to that question in favor of the shots.
Maybe this helps? https://www.ahajournals.org/doi/full/10.1161/CIRCULATIONAHA....
In the paper it says 0.1%. " Cardiac symptoms are common after the second dose of BNT162b2 vaccine, but the incidences of significant arrhythmias and myocarditis are only 0.1%." Also note: "subclinical".
"Only"? COVID posed a negligible risk for young males without major preexisting conditions. By contrast, common cardiac symptoms paired alongside significant arrhythmia and myocarditis in 1 in 1000, disproportionately affecting young males, is huge.
And I expect we will eventually come to find out that the overall (particularly longer term) side effects of these drugs have been greatly underestimated. For instance excess mortality continues to remain extremely high [1], even though it would be expected to be negative following a pandemic simply because those most affected by COVID were those already near death. Put more bluntly, disproportionately get rid of the elderly and future death rates should be lower than they would be otherwise. So why are disproportionately large numbers of people continuing to die?
[1] - https://ourworldindata.org/grapher/excess-mortality-p-scores...
You may want to look at this paper to get a better idea of risk and benefits, e.g. Fig 2 and Fig 3: https://www.ahajournals.org/doi/full/10.1161/CIRCULATIONAHA....
One also needs to understand that myocarditis is not uncommon, and especially common after viral including COVID itself. Also "subclinical" means that this includes mild cases and here the 0.1% also included arrhythmia. Looking at the other paper above, they found 1 (!) person with subclinical myocarditis while screening for it in a population of 4928. Also interesting to put this in perspective: "Underlying disease was present in 109 (2.2%) of the patients, with simple congenital heart disease in 33, mitral valve prolapses in 36, arrhythmia in 36, Kawasaki disease in 11, and previous myocarditis in 2"
Your idea that excess mortality is caused by the vaccine rather than COVID itself seems far fetched to me.
Your own link shows 128 cases of myocarditis within 7 days of ~2m vaccinations for 12-17 year old males, against an expected rate of 0-4. That's an overall rate of 1:15,000. And that study is based entirely on people with severe enough side effects for them to end up in the hospital following vaccination and to consequently be diagnosed with myocarditis, and only within 7 days. In other words it's definitely lowballing the figure.
And it's things like this that destroy trust. Because we're already speaking of an unacceptably high rate of severe side effects, based on this single one (amongst many possible), for that demographic. Typical rate of severe side effects from vaccines are in the 1:1,000,000 rate. So why was this recommended, and defacto mandated, for that age group, again? And where's the accountability for those that made this decision, and for the trials that failed to make clear such extremely high rates of side effects?
I realize I'm going on a slight tangent instead of arguing my rather extreme claim. The point I'm making here is that the messaging on these vaccines has not been carried out in good faith, and that they do have clear and severe side effects that should have made them a non-starter for at least certain demographics. And as we continue to see excess mortality rates that are comparable to what it was mid-pandemic (during the lulls between spikes), the possibility of longer term side effects seems to me to be, at the minimum, viable.
The 1 in 1000 figure comes from a study where they did an ECG on 5000 high school students. They found one case of myocarditis and four cases of arrhythmia, all of which improved on their own. You can't compare that 0.1% figure with figures from studies that look at millions of people and see how many were diagnosed with myocarditis, because the act of giving everyone an ECG will lead to diagnosing more cases of myocarditis. The proper comparison is how many cases of myocarditis and arrhythmia would they have found if they did an ECG on 5000 high school students who got COVID-19 without being vaccinated. And the answer to that is they would have found at least a comparable number of cases because viral infection is the most common cause of myocarditis and because our population-level studies show excess cases of myocarditis after COVID-19 infection in unvaccinated people.
If I understand you correctly, your hypothesis is that a COVID-19 vaccination, while it doesn't immediately kill someone, can cause conditions which lead to increased mortality.
With people still being re-infected by COVID, despite the pandemic being "over," could a COVID infection, itself, cause conditions which lead to increased mortality (for people who don't die from acute infection)?
I'm not proposing this as an either/or; I'm just saying that the vaccine wasn't the only change since 2020 :)
Comparing these two numbers is completely wrong. The study that you cite performed an ECG on 5000 high school students after a COVID-19 vaccine and found 50 had abnormal ECG. But having an abnormal finding on an ECG doesn't actually mean that there's any underlying heart condition. I just went through this myself - I had a bunch of ECGs for a clinical trial (unrelated to any cardiac issue). One came back abnormal. Repeating the ECG in my PCP's office showed nothing. A cardiac stress test showed nothing. About 10 other ECGs for the clinical trial showed nothing. It was just an incidental finding. Saying that 1% have "cardiac damage" because there's an abnormal ECG is just completely wrong. The test has a false positive rate that's greater than 0. And 50 abnormal findings does not mean 50 cases of "cardiac damage". In fact there were 5 - 1 myocarditis and 4 arrhythmias. All of these cleared up on their own.
And finally, you can't compare the two studies because they are looking at fundamentally different things. The 3 excess cases per 100,000 doses comes from looking at millions and millions of health records, so it will only show cases that were actually diagnosed in the real world. The paper you cite performed an ECG on everyone in the study - so of course they are going to find vastly more cases, because they are doing vastly more testing. But that study is not performing ECGs on anyone who gets COVID but has not been vaccinated. If you did that, you would also see myocarditis, because viral infection is the leading cause of myocarditis.
You cannot conclude anything from the study that you cite about the relative cardiac risks of the vaccine - it's just not a study that's designed to do that.
Exactly this - vaccinate even a small town and cardiovascular issues will start popping amongst the neighbors, there is very good reason why there has been, and is, a public backlash on the MRNA vaccine usage among those who have eyes to see and ears to hear.
Please do not spread misinformation. Nobody expects "cardiovascular issues" "popping amongst the neighbors" and there is no evidence supporting this.
Wow, for once Chuck didn't win
I mean there have been no reported cases of NSF in the last ten years after certain gadolinium agents were removed from the market.
Every time I've gotten an MRI the doctors and techs have sworn up and down it's impossible for this stuff to stick around. Getting tired of not being able to believe what doctors say...
That's surprising, it's at least casually known that they're bio accumulative to some extent. I've joked to the techs before about gadolinium eventually accumulating enough to not be necessary if you do it with enough frequency. Realistically though any situation that you're doing the contrast you're probably at a lot more risk of whatever they've found than from the contrast agent.
Yes.
A chemist gave a great talk about this at a big MRI conference (ISMRM) in Paris 10ish years ago. His explanation was that gad behaves a lot like iron does in the body. It deposits where iron does and like iron it lacks a metabolic route for removal (though menstruating females lose iron).
He stated that deposition was entirely predictable. However the harm caused is still debated.
The article here says ‘ Dr Wagner theorized that nanoparticle formation could trigger a disproportionate immune response, with affected cells sending distress signals that intensify the body’s reaction.’
Emphasis on ‘theorised’.
Deposition is discussed in the below link, and the comparison with iron is briefly mentioned.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10791848/
I had to have contrast to diagnose a simple cyst, which is entirely asymptomatic and was discovered by accident in the background of a cardiac MRI (family history of SCD, but my own heart is fine).
You're making me feel lucky about what was otherwise a very unpleasant experience!
Nah, they used it on me when I cracked a toe. If I knew that this may be that dangerous I’d go the way without the contrast agent.
Based on what I've read I'm quite sure a cracked toe is way more dangerous than a contrast agent.
Maybe, but I was taking an immense amount of vitamin C as prescribed by the doc to bootstrap the healing process.
So this reveals to me two issues
1. In general side effects of the contrast agent are not communicated properly. If I knew, I might have asked - hey can you do the analysis without the agent?
2. There’s no recommendation to avoid vitamin C prior and right after the MRI, heightening the risk.
Maybe donate some plasma afterward. There was a study about firefighters exposed to microplastics that had a statistical reduction after regular donations.
Pretty much just diluting it out of your system.
Materials like these accumulate in other parts of your body, like bones. Letting some blood out is not gonna change it.
The other day I had to get a CT scan, I was kind of annoyed I wasn't offered and MRI, and here we are.
I hold a different opinion to you though, I'm glad doctors are always learning more while generally operating with good /extremely good intentions.
> I was kind of annoyed I wasn't offered and MRI, and here we are.
This paper isn’t saying that MRI contrast agent is high risk in general.
There’s a risk in misinterpreting these niche papers to overstate their relative risk. This is a common mistake when people start reading medical papers and begin overweighting the things they’ve read about as the most significant risks.
CT is cheaper than MRI, and it's harder to get insurance to pay for the latter. There are some legitimate diagnostic reasons to prefer CT imagery, but I think cost may be a more common deciding factor.
Really wish more people had that mind set. Practicing medicine isn't easy, especially in the US when you have to battle the insane insurance industry.
> I hold a different opinion to you though, I'm glad doctors are always learning more while generally operating with good /extremely good intentions.
I agree. Expecting perfection from humans, even experts, is not reasonable and is frankly counterproductive.
Willful ignorance is one thing, but people who genuinely attempt to do the right thing at worst just need to be steered slightly differently.
expecting humbleness and willingness to be wrong from medical personnel is reasonably though
> I agree. Expecting perfection from humans, even experts, is not reasonable and is frankly counterproductive.
There's a big difference between perfection and "Statistical Literacy Among Doctors Now Lower Than Chance"[1]. I don't think their intentions are bad, but they are woefully incompetent at many basic things.
[1] https://slatestarcodex.com/2013/12/17/statistical-literacy-a...
> There's a big difference between perfection and "Statistical Literacy Among Doctors Now Lower Than Chance"[1]. I don't think their intentions are bad, but they are woefully incompetent at many basic things.
As it happens, the daily practice of medicine does not require interpretation of p-values. Indeed, medicine existed before the p-value.
The people who create studies that ultimately guide policy decisions are specialized (much like people who write GPU drivers are different from those who run inference)
> As it happens, the daily practice of medicine does not require interpretation of p-values. Indeed, medicine existed before the p-value.
What are you talking about? Doctors refer people based on test results every single day. From what I've seen, hardly any of them understand the precision/recall of the tests that they then use to refer you (or not) to screening procedures (which are not all harmless).
> What are you talking about?
What are you talking about? How is a single lab value going to generate a p-value? Why are you presuming that your family med doc should be calculating an ROC for each of her 1,500 patients?
The selection of lab critical values is performed by experts in clinical pathology. Exactly the people who were not included in the paper you cited.
You can find links to support any argument you want on the internet.
To place this in clearer HN terms, you're saying that a front end dev is trash because he didn't write his own web browser in assembly.
To be fair, being knowledgeable about the pre-test probability of a patient having a certain disease vs the sensitivity/specificity of a test IS part of the ideal practice of medicine, although how important it is in practice varies somewhat between specialities. In rheumatology for instance, it is front and center to how you make diagnoses. I was in primary care for a short while myself, and on more than one occasion regretted deeply ordering certain rheumatological screening panels (which you get without asking for it when looking for certain antibodies).
Explaining to a parent the fact that their child did in fact not have a rare, deadly and incurable multi-system disorder even though an antibody which is 98% specific for it showed up on the antibody assay, that we took for an entirely different reason, is the kind of thing thats hard to explain without understanding it yourself.
Bayesian thinking isn’t about p-values and doesn’t need to be presented that way.
If you use the centor criteria before resting for strep, is that worse than getting out a piece of paper and researching background population prevalence?
The OP is being dogmatic about doctors needing to know things he does which is obviously silly.
Edit - but yes, I agree that we should think about sensitivity and specificity, I just don’t think you need to be a statistician, just to have a helpful script and resources for patients who wish to know more.
Except that a disturbing number of doctors insist that they are always right and you are always wrong.
A year ago, one insisted vehemently—to the point of yelling—that I shouldn't be supplementing Vitamin K because my potassium levels were fine.
OMG! This doctor shouldn't be practicing medicine if he thinks Vitamin K is potassium.
OTOH Vitamin K can cause blood clots.* I assume you know this and are being appropriately attentive to the issue.
* The K comes from Koagulationsvitamin which it was called in Danish when first discovered.
vit k does not cause blood clots
As opposed to what group of humans?
I can only presume that they got the atomic symbol for potassium (K) mixed up with vitamin K. That’s so wrong it crosses over into being “not even wrong” but entirely wrong and beside the point. I hope they aren’t your doctor anymore, or anyone’s. Please tell me you reported this incident to the state medical board.
https://en.wikipedia.org/wiki/Not_even_wrong
> "What you said was so confused that one could not tell whether it was nonsense or not."
Literally every single medical procedure, down to the most mundane, has risks.
That's why we don't give MRI's out the wazoo. We actually gatekeep them a lot, and most research will tell you that investigative MRIs without chief complaints are a bad idea and we don't do them.
I had cancer. I had no MRIs, but multiple CT and PET scans. CT scans and PET scans have risk - they don't just do those for kicks. But you know what else has risks? Cancer. So there's a calculus here.
Every single medical procedure, down to getting your blood drawn, has this calculus. Nothing is risk free.
> That's why we don't give MRI's out the wazoo
Why? What are the risks of MRIs without contrast?
The biggest risk is false findings for a lot of diagnostic procedures. A false finding may cause enormous psychological stress, but more importantly it usually causes further, more invasive testing, which may pose much higher risks than the original procedure did. It's real statistical risk, which individual patients emotionally often can't relate to. Eg. an MRI shows clear signs of a tumor, you consequently get an endoscopic biopsy through your stomach, or colon, and then happen to die from anesthesia, intestinal perforation, sepsis... The "tumor" turned out to be a cryptic but harmless extra intestinal loop. Sounds made up, but this sort of thing happens enough to make unnecessary diagnostic procedures more harmful than beneficial.
However, I do think the reason MRI aren't used more often is because they are fucking expensive to operate. They need to run more or less 24/7 to be economical, which means they are commonly not scheduled with slack for "optional" investigations.
MRIs involve very powerful magnets and inattention around them has led to several widely-publicized deaths.
They’re also loud and can give patients a sense of claustrophobia or panic.
The reason is cost and availability, not risk.
Incorrect, there is risk associated with performing MRIs without chief complaints.
These types of MRIs often cause anxiety and can lead to riskier medical procedures that are not necessary. This is because imaging is actually not perfect. There is always a risk you see something there that is not a big deal, or that you misinterpret the image. That potentially means unnecessary surgery or medicine. That can kill you.
That's why if you go to any doctor in the US and say "I want an MRI, no, nothing is currently wrong with me" they won't do it.
With a couple of exceptions, MRI screening of ‘worried well’ populations causes more harm than good.
https://www.linkedin.com/posts/gunnmartin_ranzcr-activity-72...
Which country do you live in?
Here in Germany you have to sign something if they give you "stuff" informing you of possible risks. Something that always exists.
The data until recently suggested that, so thats the risk you take. Would you rather be living in ancient greece and shoved full of hemlock leaves for arthritis? Or have a 19th century surgeon remove your appendix?
There's risk in life and odds-wise if you're in the developed West, you're going to get care and medicine that will greatly prolong your life.
Also this paper is super vague. What percent of people even get this? How long does it last? They havent even done a study to see how long it lasts yet. I have a feeling this isnt going to be our generation's asbestos or thalidomide.
That being said, you should decide your own risk profile. If MRI gives you concerns there are alternatives that dont involve contrast.
No one is asking to go back to Ancient Greece.
But given our track record, a little humility would go along way.
When a highly educated doctor tells you that something is safe, a person is going to assume that means that someone somewhere has proven that the substance is safe. If what they really mean is that no one really knows, but so far, no experiments have been able to prove danger, then we should say that instead.
> When a highly educated doctor tells you that something is safe, a person is going to assume that means that someone somewhere has proven that the substance is safe.
Contrast agent has been widely studied and determined to be reasonably safe. You’re not going to be administered any routine procedures or compounds that are known to be dangerous without an examination of the risks and benefits.
> If what they really mean is that no one really knows, but so far, no experiments have been able to prove danger, then we should say that instead.
“No experiments have been able to prove danger” is too generic to be usefully different than saying that it’s understood to be reasonably safe.
Even this paper isn’t saying that contrast agent is bad or dangerous in general. It’s exploring a potential effect that we can now detect and study.
Exactly...it's also not reasonable to be asked to prove a negative. "Prove it's safe" (equivalent to "prove there isn't any danger") is "prove there isn't a teapot orbiting Venus" territory.
Every procedure has some negligible risk, and doctors are trained to mitigate major risks to peoples' health with screenings, medications and surgeries that are of lesser risk than the alternative of inaction. "Safe" is a reasonable explanation for the vast majority of laymen they have to communicate with.
My point is not that you must prove it safe. My point is that it is dangerous to communicate to people that something is safe, and simply assume that they understand that negatives can’t be proven, and you don’t literally mean that someone has proven it to be safe.
This is pretty much how we get into the territory of "this product may contain peanuts" even if it has never even been near peanuts, but that warning is need because if in the offcase it has touched peanuts the company can't be sued. But this makes pretty much every other warning worthless.
We shouldn't have to clarify that everything is only 99.999% safe and assume that everything carries some form of risk even if small.
By that standards everything we do is unsafe. Every single activity we do carry some neglible risk. Explaining all of these would be lot more trouble than value in general.
>no experiments have been able to prove danger
Which is strong evidence that the danger is very small, very rare, or takes a very long time to develop.
You don't need a large clinical trial to prove that being shot in the head is harmful; you do need a very large trial to detect that, say, a drug increases the risk of cardiovascular disease by 4% in a specific sub-population.
By that definition there is literally no substance in existence that has been proven safe. Because the definition of safe is that no experiments have been able to demonstrate danger.
You can’t prove a negative.
You know that you can’t prove a negative. I know that you can’t prove a negative. Probably most people on HN know that you can’t prove a negative.
But when a person who doesn’t spend their time nerding out on science goes to the doctor and hears, “the substance is safe”, it is not a guarantee that they know that you can’t prove a negative. If you can’t be sure that your audience knows that it’s not possible to prove a negative, then you should be pretty cautious with your words.
Safe, in the context of living on Earth, means an acceptably low risk of a bad outcome.
Tylenol is safe. Tylenol can also permanently damage your kidneys.
Walking is safe. Walking can also permanently damage your cartilage.
Food is safe. Thousands of people die from choking.
We all know this, colloquially. When it comes to medicine, it is as if one's brain hops and skips right out of their ear. It's not magic, it works like everything else on Earth works.
I think there is a non-insignificant number of people who would understand the word safe as no risk, who if something bad happened to them after submitting themselves to such a safe procedure, would find themselves deceived. Technically, I think they would be correct. Therefore, it should be explained that there is a risk but that it is on some order that they can relate to, like the risk of walking down the street.
A doctor will 100% explain that a procedure has a risk. They will say something like this procedure is “generally safe” but there is a very small risk of complications. Then they will make them sign a consent form spelling out those risks.
> I think there is a non-insignificant number of people who would understand the word safe as no risk, who if something bad happened to them after submitting themselves to such a safe procedure, would find themselves deceived.
These people are then dishonest, because they know, deep down in their heart of hearts, this is absolutely not what safe means.
Again, everyone agrees eating an apple is safe. It's even good for you! But they also know every time they take a bite, there is a risk that they can choke and die. They know that. I know that. You know that. Everybody knows that.
Colloquially, even to the most naive, we know that zero risk does not exist, and that "safe" merely means "an acceptably small amount of risk". If we are changing our definitions based on the context, for example, everything on Earth and then medicine, that is dishonesty. If we are dishonest to ourselves, then we are delusional.
By that definition, nobody knows anything is safe.
Yes, exactly, but that is the definition that people who are not doctors are going to use when doctors tell them that something is safe. So we shouldn’t do that.
Nobody has proven that not taking an action is safe.
There is nothing mathematically 100% safe, the human meaning of the word inherently involves some kind of uncertainty.
Going for a test itself via car has a quite significant risk itself, should the doctor say that you shouldn't move out of this room, it's not safe?
Like even regularly used medicine has some slight chance of an adverse reaction, that's how minuscule side effects multiplied to human population times the number it's taken results in.
Guess what often has many orders of magnitude greater risk? Continuing having the disease you went to the doctor with in the first place, or having it lie undiscovered.
Around 10 years ago, I had an brain MRI with contrast. I specifically googled it and found a paper saying it builds up in the brain. I asked the MRI specialist about it, she was surprised I knew this and said she was familiar with the research. She mentioned that her professor also knew about it, but that the paper had other motivations, some conflict of interest, and that I shouldn't be worried. FFS.
Why did you have a brain MRI with contrast?
Contrast isn't always necessary. Am not a doctor, but I have MS and get them regularly.
I've only had a couple with contrast. My understanding is that contrast highlights abnormal stuff and some tissue sorts more than without contrast. Specifically, they use it in MS to get a better look at an active lesion in the brain. You can still see the lesion without the contrast, though, so most of the MRIs are taken without contrast and then another with contrast if necessary. They have known about various side effects of contrast for some years (allergies, etc).
I’m also not a doctor but am an MR tech and the above explanation is good.
With MS, active lesions enhance and old, inactive ones don’t.
There are a lot uses for contrast in brain imaging and it is very helpful.
Gadolinium deposition obviously isn’t great.
My son had an MRI with gadolinium- turns out he is allergic to it, he developed a full-body itchy rash. There were like 20 interns in to see him, for the experience I guess. They were ready to send him to the ER in case it interfered with his breathing, luckily it didn't.
That would have been frightening. Did it require treatment beyond antihistamine?
I’ve given MR contrast to patients a lot of times (probably tens of thousands) and have seen hives and rashes a handful of times but vastly more often with iodinated contrast in X-ray procedures (usually CT).
I had an MRI with contrast once. I remember the gadolinium injection made me extremely nauseous for a few minutes, but otherwise it has had zero effect on me personally.
Some sad advice: don't ask doctors about this, my experience is that it will cause them to write you off as a crazy person no matter how you bring it up. Many of them lump this in with what they see as "influencer illnesses", whether fairly or not.
And maybe more practically, if you really need an MRI, whatever you might have is much more likely to hurt you.
This is a poor explanation of an older publication, when the actual new work has a good description:
https://www.frontiersin.org/journals/toxicology/articles/10....
Thanks - I've put that link in the toptext above. I'm not sure it makes sense to swap out the submitted URL with it. Hopefully people will take a look at both.
You know what other metal stays in the body, permanently bound to bone and other organs? Bismuth, as in bismuth salycilate, aka Peptobismol. A tiny % actually stays in your body.
Does that cause any symptoms? Because apparently this can, and they tell you how to avoid it.
> Lead author Dr Brent Wagner told Newsweek he personally avoids vitamin C when undergoing MRI with contrast, citing its potential to increase gadolinium reactivity. “Metabolic milieu,” including high oxalic acid levels, could explain why some individuals experience severe symptoms while others do not, he said.
Avoiding high-oxalic foods for a few days before the MRI also seems like a good idea. Just check the diet for calcium oxalate kidney stones.
> Does that cause any symptoms?
Tinnitus.
Actually, that's the salicylate portion causing tinnitus, not the bismuth.
Can you please share more?
From OpenEvidence.com:
"After ingestion, bismuth is primarily found in trace amounts within organs such as the kidney, liver, spleen, and, in rare cases, the brain, where it accumulates intracellularly—especially in lysosomes and nuclear membranes—and extracellularly in basement membranes of blood vessels.[1-4] In normal therapeutic use, the amount of tissue-bound bismuth is extremely low and is not associated with adverse effects. Potential consequences of tissue-bound bismuth are generally negligible at standard doses, but chronic or excessive exposure can lead to toxicity, most notably neurotoxicity (bismuth encephalopathy).[1][4-6] In cases of bismuth intoxication, histochemical studies have shown accumulation in neurons and glial cells, particularly in the cerebellum, thalamus, and hippocampus, with clinical manifestations including confusion, myoclonus, and encephalopathy.[1][4-6] However, these effects are reversible upon discontinuation of bismuth exposure, and recovery is typically complete within weeks.[5-6] Animal studies confirm that bismuth binds to proteins such as ferritin and metallothionein, and is retained in lysosomes, nuclear membranes, and myelin-associated proteins.[2][4][7] The kidney is the primary site of accumulation and excretion, and tissue levels decline after cessation of exposure, with little evidence of permanent retention at therapeutic doses.[2-3] In summary, permanent tissue binding of bismuth is minimal and clinically insignificant with standard use, but chronic high-dose exposure can result in neurotoxicity and other organ effects, which are reversible after stopping bismuth.[5-6][8-9]"
1. Autometallographic Tracing of Bismuth in Human Brain Autopsies. Stoltenberg M, Hogenhuis JA, Hauw JJ, Danscher G.
Journal of Neuropathology and Experimental Neurology. 2001;60(7):705-10. doi:10.1093/jnen/60.7.705.
2. Metallobiochemistry of Ultratrace Levels of Bismuth in the Rat II. Interaction of Bi With Tissue, Intracellular and Molecular Components. Sabbioni E, Groppi F, Di Gioacchino M, Petrarca C, Manenti S.
Journal of Trace Elements in Medicine and Biology : Organ of the Society for Minerals and Trace Elements (GMS). 2021;68:126752. doi:10.1016/j.jtemb.2021.126752.
3. Distribution of Bismuth in the Rat After Oral Dosing With Ranitidine Bismuth Citrate and Bismuth Subcitrate. Canena J, Reis J, Pinto AS, et al.
The Journal of Pharmacy and Pharmacology. 1998;50(3):279-83. doi:10.1111/j.2042-7158.1998.tb06861.x.
4. In Vivo Distribution of Bismuth in the Mouse Brain: Influence of Long-Term Survival and Intracranial Placement on the Uptake and Transport of Bismuth in Neuronal Tissue. Larsen A, Stoltenberg M, Søndergaard C, Bruhn M, Danscher G.
Basic & Clinical Pharmacology & Toxicology. 2005;97(3):188-96. doi:10.1111/j.1742-7843.2005.pto_973132.x.
5. Bismuth Encephalopathy- A Rare Complication of Long-Standing Use of Bismuth Subsalicylate. Borbinha C, Serrazina F, Salavisa M, Viana-Baptista M.
BMC Neurology. 2019;19(1):212. doi:10.1186/s12883-019-1437-9.
6. Bismuth Subgallate Toxicity in the Age of Online Supplement Use. Sampognaro P, Vo KT, Richie M, Blanc PD, Keenan K.
The Neurologist. 2017;22(6):237-240. doi:10.1097/NRL.0000000000000144.
7. Bismuth Tracing in Organotypic Cultures of Rat Hippocampus. Locht LJ, Munkøe L, Stoltenberg M.
Journal of Neuroscience Methods. 2002;115(1):77-83. doi:10.1016/s0165-0270(02)00004-3.
8. Bioactive Bismuth Compounds: Is Their Toxicity a Barrier to Therapeutic Use?. Gonçalves Â, Matias M, Salvador JAR, Silvestre S.
International Journal of Molecular Sciences. 2024;25(3):1600. doi:10.3390/ijms25031600.
9. Review Article: Safety of Bismuth in the Treatment of Gastrointestinal Diseases. Tillman LA, Drake FM, Dixon JS, Wood JR.
Alimentary Pharmacology & Therapeutics. 1996;10(4):459-67. doi:10.1046/j.1365-2036.1996.22163000.x.
I think the thing to remember with this, as with any kind of medical procedure, is the benefits versus the risks. In many cases, if you're getting this kind of MRI contrast, there's probably a good reason for it. So even if there's some risk, it might be better than say, the cancer or something else they're looking for. I feel like this is something that's often forgot in these discussions.
Or to not click through multiple layers of clickbait: https://doi.org/10.1016/j.mri.2025.110383
Unfortunately, the article isn't much better. It has as an underpinning, a corrected paper: https://doi.org/10.1093/ndt/gfl294
1. The correction doesn’t invalidate that previous study at all
2. I fail to see how the previous study is an “underpinning” of the new paper. The new paper is a chemistry paper about dissociation of GBCAs in the presence of certain chemicals. Maybe people care because it is a potential explanation for toxicity, but the paper is very focused on the chemistry findings.
It is underpinning, as it is the most frequently cited in the entire paper.
It is underpinning, as the claims in both introduction and conclusion are precipitate to it.
The correction:
> After personal communication with the radiologists the administered Gd-contained contrast agent was documented in the MR examination reports of the mentioned nine patients incompletely and inexactly as Gd–DTPA by themselves. There is solely one MR contrast agent used in the described observation period: Gd–DTPA–BMA. Therefore, all mentioned nine patients received Gd–DTPA–BMA and not Gd–DTPA.
Means that Gd-DTPA is irrelevant. Guess which is analysed here?
Neither - the OP paper talks about Gd-DOTA.
I’m not a specialist so I can’t comment on how significant that is.
We generally don’t use the compounds that cause NSF, which is one reason why the 2006 paper link you provided may not reflect the agents under current study.
As someone with CKD and scheduled for an MRI, this was anxiety-inducing.
The Cleveland Clinic has a good overview[1]. Since there have been no reports of NSF in 15 years, I don't think it's rational to avoid MRIs based on gadolinium retention concerns.
[1] https://www.ormanager.com/briefs/study-mri-contrast-agent-ca...
[1] https://my.clevelandclinic.org/health/diseases/17783-nephrog...
That’s just the OP url again, I think you miscopied.
Yep.
https://my.clevelandclinic.org/health/diseases/17783-nephrog...
The link between NSF and gadolinium-based agents has been known for almost two decades and is common knowledge in the industry.
Yes. The problem is that it's common in the industry. But it's ultimately up to the patient. Maybe alone. Pretty much guaranteed scared. Undereducated, worrying about their likely life threatening potential illness or injury. That's basically under duress.
What are you proposing instead? Should patients just die of their illness instead?
Medical procedures have risk, some are small risk some are higher risk. There are none that are 100% safe. Doctors are supposed to evaluate if the risk is worth the value the procedure would supply.
What is the alternative to the status quo that you would propose?
Well, there are manganese-based contrast agents under development. Maybe we should give those a little more funding.
Like Gd, Mn is toxic, but unlike Gd, Mn is naturally present in the body (and also in pineapples) which means that long-term accumulation is less likely. The main difficulty is the lack of strong enough complexing agents because of the tendency for zinc (naturally present at relatively high concentrations in the body) to steal the ligand from Mn, a problem currently being studied:
https://onlinelibrary.wiley.com/doi/full/10.1002/ange.202115...
During COVID people were losing their minds about one in a million chance of complications caused by vaccination. I did some research (but actually), and found that that’s comparable to the rate of complications for any use of an injected drug or even saline. Just piercing the skin with a tiny needle is a “medical procedure” with a non-zero risk, especially in the elderly and the immunocompromised.
I had a couple of MRIs recently and got curious about gadolinium contrast. Again, there is a non-zero risk, but if you eliminate the cohort with reduced kidney function and those getting regular repeated MRIs, the risk is comparable to the use of an I/V, which is how it’s administered.
The only thing that upset me was that the staff didn’t ask me verbally about kidney issues to double-check. They also didn’t remind me to drink a bunch of water to flush it out of my system. (Some articles recommend administering a diuretic.)
For that matter they didn’t check me properly form metal fragments either!
Similarly, I’ve had vaccinations administered where I had to remind the doctor to clean the area with alcohol first and to tap the syringe to get rid of the bubbles.
Bad procedures are more dangerous than the drugs being administered!
The risk with gadolinium is that it is never fully removed from your system and if you are allergic to it, it means a PERMANENT whole body allergic reaction. Skin itching and incurable chronic pain. It has nothing to do with kidney function.
I got familliar with this condition by a random persons blog who go affected by this during normal MRI and also didn't expect to be part of 1-2%. Unfortunately the blog is now gone, and that post now only lives inside my RSS reader.
Are you saying that 1-2% of people are allergic to gad and get this side effect?
> people were losing their minds about one in a million chance of complications caused by vaccination
Bit different. & under the context of vaccination being an aggressive, government-led, initiative to enforce a medical procedure on their body.
Well no one should get MRIs with contrast for fun. Moreover, doctors regularly use contrast off label.
My dad was in this industry when nsf first came out. We would be dragged along to after hours family things at conferences. Doctors openly said they gave contrast off label at dosages not approved by the FDA for organ systems not approved by the Fda. Even children. I'm sure they had their reasons, but I'm also sure they never disclosed the possibility of nsf and just told parents their kids needed it, because they admitted it.
There's a big difference between not getting the MRI and getting the MRI without gadolinium. My suggestion is to ensure that people know the risks outside of just the people who work in it. I'm not sure how that didn't get across in my original comment. With your comprehension skills, you are at an increased risk of falling victim to this exact scenario
My understanding was that gadolinium was already only used in cases where a normal MRI would be ineffective.
I don't know how the risk is actually communicated to patients. I imagine it varries by country. However, normal medical ethics would be to explain risks to the patients. Is there a reason to believe that isn't happening?
There’s really a risk vs benefit. If you have a brain tumour you need contrast to assess the type of tumour, its growth, if it’s a glioma whether it’s transformed and so on. If someone is being given contrast it is going to change their clinical management.
It seems an odd fixation of just MR contrast when the same could be said of all drugs. Does your doctor/surgeon go into the minutiae of all drugs and possible consequences? By this line of thinking, saline is not without risks, should they go into depth about that?
People already poorly retain information or even comprehend it at appointments or interventions, is there any point adding more burden onto their attendances?
Nobody explains shit like this. They will turn down the risks because if they were honest, most wouldn't accept that risk. Because the risk is PERMANENT life changing condition.
There is a risk of a permanent life changing condition when you take a bite of food, or have your blood drawn.
>>> Yes. The problem is that it's common in the industry. But it's ultimately up to the patient. Maybe alone. Pretty much guaranteed scared. Undereducated, worrying about their likely life threatening potential illness or injury. That's basically under duress.
> There's a big difference between not getting the MRI and getting the MRI without gadolinium. My suggestion is to ensure that people know the risks outside of just the people who work in it. I'm not sure how that didn't get across in my original comment. With your comprehension skills, you are at an increased risk of falling victim to this exact scenario
I don't see anything wrong with the GP's comprehension skills.
Anyway, every procedure has risk - and no procedure is recommended if there is not an offsetting clinical benefit. There are clear guidelines for when gadolinium is to be used for an MRI and the guidelines factor in risk for 'NSF'.
When I had mine I got the form with warnings about side effects. When I saw the allergic reaction I was a bit concerned, I asked the tech and was told it wasn't a big deal. Since I was in the basement I didn't have service and I decided to trust them given the large number of my friends who've had MRIs. It was fine, but it seemed like a major thing to toss in the patients lap right before they get strapped down in a tube.
But there’s a potential risk of an allergic reaction to any drug you take, any food or drink you consume, even environmental substances - perfumes; hayfever is an allergic reaction to pollens. You don’t know you have one until you have the reaction. I didn’t know I was allergic to penicillins until I needed them for an infection and it turns out I am.
There have been no cases of NSF in over ten years after newer gadolinium contrast agents have displaced the problematic ones.
I went hunting for a reference for your statement, and was successful.
Clevland Clinc says "There haven’t been any new reports of NSF in almost 15 years" [1]
[1] https://my.clevelandclinic.org/health/diseases/17783-nephrog...
People getting MRIs frequently have bigger fish to fry.
When my wife was under cancer treatment she had them frequently. Risking some minor reaction, which in her case was disclosed many times, was well worth the value in managing the acute and long term treatment plan.
> Undereducated, worrying about their likely life threatening potential illness or injury. That's basically under duress
I was never communicated about gadolinium pollution. Not once.
And yes, on my recent MRI, I explicitly asked why there was metal particulate in my joint. "I dont know, sometimes it happens'... No you fucking tool of a doctor. Its gadolinium.
And I finally find out here.
Are you certain it is gadolinium? As I recall from a family member's health issues you can get particulates in joints from arthroscopic surgery or from the metal implants. Not saying that is what happened in your case, but I'm just curious because I remember reading about metal in joints as a potential side effect of the surgery.
That's somewhere between a Hobson's choice and Russian roulette.
I find it odd that when I happen across an article talking about some negative links between x and y being discovered, there's always someone in the comments saying this was known for some decades.
In my case, my dad was in this industry so I had heard about it since day one. And I know doctors knew about it too
My kid went to brain MRI because of migraines (standard procedure here for kids to check if there is e.g. a tumor causing the headache). I was pretty nervous due to this kind of research and the preparatory material saying that they might need to use a contrast agent. In the end they didn’t use a contrast agent and I stressed unnecessarily.
Just as a heads up from a rando on the internet this sort of research is trying to understand mechanisms of things that happened 20-30 years ago and people who were exposed back then (sometimes many times with significant accumulation).
Gadolinium is toxic so contrasts trap it with protective molecules that hold the gadolinium until it leaves the body (most leave via the kidneys, but some also leave via liver/gallbladder). Some fraction of gadolinium escapes depending on the structure of the protective molecules. After the problems with the older contrasts were found kidney function became important (impaired kidney function allows more time for gadolinium to escape) and later new contrasts were designed that are much more stable. The gadolinium contrasts we use today are much more stable than the ones we used previously and there haven't been any cases of the sorts of things this article is about in over ten years. But there are a lot of people alive who received the old agents many times and in higher doses than we use today.
I don't want to diminish the concerns (and frankly I think this is important to understand what happens to gadolinium in the body), but the exposure and accumulation are significantly lower today than they have been in the past because reducing exposure has become a major focus of design safety for gadolinium contrast and the worst offenders have been voluntarily withdrawn from the market.
Anyway if my kid needed contrast for accurate diagnosis, I'd do it. I work at a pediatric hospital and generally the way it works is if contrast might be needed its ordered and consented so that it's an option. During the scan radiologists check the images and decide whether contrast is needed to answer the clinical question (although in general that's more a question of time management if the question has already been answered, there's no reason to keep imaging).
Nobody told me gadolinium can be retained before I had it the first couple times.
Like somebody else mentioned, they swore up and down it's perfectly safe.
> Nobody told me gadolinium can be retained before I had it the first couple times.
The reason these publications exist is that this is new knowledge
> Like somebody else mentioned, they swore up and down it's perfectly safe.
I am positive that you were not told that '[gadolinium] is perfectly safe' because there is a well-known complication of gadolinium administration. It's rare, but it's mentioned in every consent form.
> I am positive that you were not told that '[gadolinium] is perfectly safe' because there is a well-known complication of gadolinium administration. It's rare, but it's mentioned in every consent form.
Consent is not "Sign this cause its the only course of treatment". And thats what happens almost every time.
And yes, I too have gadolinium retention in my joint. 3 MRIs. And no, was not told this was a complication... But I'm sure the papers I signed included weasel words to that effect.
> And yes, I too have gadolinium retention in my joint. 3 MRIs. And no, was not told this was a complication... But I'm sure the papers I signed included weasel words to that effect.
The presence of the gadolinium is not a complication. At best, it is an unintended side effect whose clinical significance is not known.
A complication is an unexpected/non-routine, negative outcome. We now have learned that the deposition is something to expect. There is no new information around clinical changes that one can attribute to gadolinium.
On my recent MRI, it caused significant metallic cloudiness in interpreting. It was metallic cloudy specks everywhere.
Making every future MRI worse is of large concern, especially if there are other nonmetallic contrasts.
Metal artifact and contrast enhancement (from gad) look very different. Accumulation in a joint is unusual too, though direct injection during an arthrogram would cause this. It generally goes away over a couple of days as it’s absorbed.
> On my recent MRI, it caused significant metallic cloudiness in interpreting. It was metallic cloudy specks everywhere.
I am sure this is true - and it also occurs in people who get braces, certain piercings, people who have had implants or (unfortunately) gun shots.
These aren't complications in any sense of the word.
I think you must have misunderstood where the artifact was coming from. Gadolinium retention has been shown to occur, but has not been reliably linked to any clinical symptoms. Gadolinium tissue retention also does not interfere in interpretation.
Metallic cloudiness isn't a thing in MRI.
The more I see these types of things the more my skepticism shoots up when someone tells me something is perfectly safe.
There's a subreddit, created August 2024, discussing this: https://www.reddit.com/r/GadoliniumToxicity/
It seems only patients with advanced renal disease are effected. So, my suggestion, no Gad in patients with increased Creatine (even Stage I renal disease).
That’s what is done clinically - though only with severely reduced function. Giving it with an egfr below 25 or 30 is generally avoided. However it is still done when life or limb are at risk.
Note that MRI with contrast has very low risk and I am not aware of any evidence that Gadolinium retention even has adverse health effects. It is a concern though and this is why it is being studied. But I do not think the use of MRI contrast agents is something anybody without kidney disease should be concerned about. In general, risks and benefits must be balanced for any medical procedure. Such risks are continuously monitored and studied and guidelines are formulated based on this. Also consider that there is very clear harm from people being scared away by misinformation from medical procedures they would benefit from.
>I am not aware of any evidence that Gadolinium retention even has adverse health effects
I found this related article: https://www.research.va.gov/currents/1024-Metal-in-MRI-contr...
Interesting to see this on HN. I was part of the research group which published this back in 2015 [1], I think we were the second group worldwide to publish this.
So, first off, this is not new. The linked publication here mainly seems to be explaining a potential mechanism of how it might happen.
Some quick notes to aid in a constructive discussion - bear with me, it's been a while and I've left research and since worked as a software developer, chuckle:
- Different gadolinium agents have vastly different "buildup" characteristics - some are better, some are worse. Biochemically, the ones where the gadolinium was trapped in harder "complexes", those were more stable (less accumulation). I suck at biochemistry, so all of those words may be wrong.
- If you'd want to over-engineer this, you could indeed select your MRI hospital / practice based on which gadolinium agent they use.
- Unless you're getting a ton of MRIs (think multiple sclerosis monitoring etc.), you probably won't be affected.
- Most MRIs are without contrast agent anyway, so you probably won't be affected.
- The last I heard was that the clinical implications were still being investigated - like, yeah, you do see a buildup of gadolinium in patients who 1) get certain gadolinium agents and 2) have a ton of MRIs, but what does that mean they'll suffer any clinical consequences from this? Not sure. I heard that there was a paper (.. somewhere) which at least showed a correlation with worse MS outcomes of people who had a high buildup, but then again, cause-effect here is not clear as people with worse MS tend to have more MRIs, too (correlation != causation).
[1] https://pubs.rsna.org/doi/full/10.1148/radiol.2015150337
Gadolinium has killed many many people. Many healthy people like me became chronically ill due to Gadolinium based contrast agent. We all had healthy bodies no history of kidney issues. One dosage of gadolinium contrast and the body couldn’t handle the toxic element which is a heavy metal for the body. The body is not designed to remove this on its own. It destroys the tissue it contacts with. FDA has to pull this poison out.
What about CT-SCAN contrast?
CT contrast typically uses iodine (which absorbs x-rays well).
There are risks with every procedure and medication.
A dose of ibuprofen could give you Stevens–Johnson syndrome or TENS and you end up in a burn war for months.
Patients should be made aware of all the risks for any treatment, but it would be impossible to avoid they edge cases even with relatively basic medical care.
Most people lack the medical literacy to understand any of this. People don’t read their letters telling them to not eat before surgery, are they going to read the list of potential side effects of a medication? How many people read the information sheets that come with their prescription medication?
When my wife worked check-in for a surgeon, she used the line, "Good morning ${PATIENT_NAME}! What did you have for breakfast today?" as a shibboleth for sending patients home to reschedule.
Sometimes I wonder if metals in the body can pick up cellphone signals.
This isn’t newly known, but it’s convenient to stay with the comfortably familiar until the better alternative is forced.
Great. Only this year, I got roughly 6 doses of gadlinium, and prior to that, I got one every year, going back 20 years. I just recently chatted with a MRI nurse about the fact that I have a bad feeling about getting that stuff so frequently over time, and she dismissed my concerns. They used to remind patients to drink more after the MRI, but even that routine has been ended roughly 5 years ago. Is there anything else I can do except drink more on the day of the injection?
Some contrasts are more stable than others - however I’d be surprised if anyone was using linear agents anymore. Macrocyclic contrast agents bind the gad more tightly.
EDTA
EDTA DMSO DMSA Vitamin C