[HN Gopher] Show HN: PFAS.report - Measure the forever chemicals...
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Show HN: PFAS.report - Measure the forever chemicals in your blood
via Quest
Hey HN We made a site that let's anyone measure the forever
chemicals in their blood with the gold standard LC-MS/MS blood
serum test at Quest Diagnostics. If you're a firefighter, plant
worker, planning to become pregnant or just someone who lives in an
area with contaminated drinking water, check it out. I live in
Santa Cruz. Here are my results: My lab findings:
https://res.cloudinary.com/mpsh87/image/upload/v1687923285/l... My
total PFAS calculation:
https://res.cloudinary.com/mpsh87/image/upload/v1687923482/p...
NASEM clinical recommendations based on Total PFAS:
https://res.cloudinary.com/mpsh87/image/upload/c_scale,dpr_2...
The goal is to be under 2 ng/mL. I'm 10.86. Honestly I was a bit
surprised by my result and am currently deciding what to do next.
There's some research out of Australia indicating blood
donation/phlebotomy is effective at removing it
(https://jamanetwork.com/journals/jamanetworkopen/fullarticle...)
from the body. Fluorochemicals seem to bind to the albumin in the
blood. I might try that. Right now the site only works at Quest
locations in California, but we're looking to expand to other
states soon. If you're local, the site is live and you can order
the test right now. Results are currently taking between 11 and 18
days. Thanks for reading my post.
Author : mdrew
Score : 130 points
Date : 2023-06-28 17:32 UTC (5 hours ago)
(HTM) web link (pfas.report)
(TXT) w3m dump (pfas.report)
| mhb wrote:
| Not sure if you intend this to be a going concern, but won't it
| be hard to compete against LabDirect et al.?
| giantg2 wrote:
| "There's some research out of Australia indicating blood
| donation/phlebotomy is effective at removing it"
|
| Kind of a "no shit" answer, and not a real solution - you're just
| transferring it to someone else. Probably some moral conundrum in
| there about how you are worried enough to get rid of your PFAS
| but are giving it to someone else.
| upsidesinclude wrote:
| I guess you'd also be giving someone extended life though
| right, so I guess that's for them to decide
| giantg2 wrote:
| I mean, you can make that claim about almost anything. It's
| really a fallacy where anything looks good if the alternative
| (usually a false dichotomy) is death.
| brewdad wrote:
| If you are receiving a blood transfusion, death is almost
| certainly a likely outcome otherwise.
| mdrew wrote:
| I'm figuring this out in real time just like everyone else.
| logifail wrote:
| > forever chemicals
|
| Sorry, but that phrase really annoys me.[0] What does it actually
| mean?
|
| [0] full disclosure: PhD in organic chemistry
| azinman2 wrote:
| As a layman, my understanding is that it doesn't break down
| over time. Is that not right?
| mdrew wrote:
| Totally agree. You can blame the Washington Post.
|
| But we choose to use it because a lot of people don't know the
| chemistry but recognize this label.
| acumenical wrote:
| Maybe the heart was in the right place, but yet another test that
| consumers pay for is not really the solution to the PFAS problem.
| The solution is holding polluters accountable. Until that
| happens, the test is simply a luxury that allows you to put
| distance between you and this worldwide problem.
| azinman2 wrote:
| It isn't an exclusive or situation. I'd like to know my own
| levels to then figure out if I should start donating blood to
| reduce, as well as avoid things like takeout boxes or any other
| potential source of PFAS.
| mdrew wrote:
| Even if 3M/Dow etc paid out a trillion dollars tomorrow, we'd
| still have the health problems to deal with.
|
| And those are managed by quantifying your risk and taking
| steps, if necessary.
| bauruine wrote:
| >There's some research out of Australia indicating blood donation
| is effective at removing it from the body.
|
| Great. Another reason to regularly donate blood. And you don't
| even have to pay 399$!
| laweijfmvo wrote:
| Blood letting is back!
| Anon_Forever wrote:
| This made me audibly giggle. What's old is new again baby!
| supportengineer wrote:
| I can see the next YC pitch now for leeches by mail as a
| service.
| mdrew wrote:
| lol totally
| david_shi wrote:
| Also great for reducing your blood iron levels if they're too
| high
| culi wrote:
| The closest modern medical operating room to you likely has
| live leeches on hand too. Looks like the tech never left
|
| > "Despite all the technical advances in modern medicine, in
| certain post-surgical situations, we do still rely on one of
| nature's most primitive organisms - the leech - to assist us
| in achieving a good outcome," says Rod Rezaee, MD, UH
| otolaryngologist and head and neck surgeon.
|
| https://www.uhhospitals.org/blog/articles/2020/03/how-
| leeche...
| JeremyBarbosa wrote:
| This is a great idea and I hope one day you can expand to the
| east coast so I can take the test myself. However, the price tag
| of $399 is pretty steep for something that just feeds my
| curiosity and can't be covered by insurance.
| mdrew wrote:
| We're working on a way users can submit their lab req for
| reimbursement but it's complicated because America
| prepend wrote:
| In what countries is it not complicated?
| cmbuck wrote:
| I've previously been advised by my doctor that PFAS tests are of
| limited utility due to the lack of process controls which could
| introduce contamination. Given how novel this area of testing is
| and the prevalence of PFAS in all types of materials, you can't
| know whether any detection of PFAS in your blood sample is due to
| presence in your body or presence in the lab + testing equipment.
| How does your solution through Quest address this issue?
| mdrew wrote:
| I would say it could be an issue, but is controlled for. The
| Quest Interface has a special cautionary statement for
| phlebotomists collecting samples for this test that says;
| "Note: Sample collection devices coated with PTFE/Teflon(r) and
| PVDF should be avoided because of potential specimen
| contamination."
|
| Edit: grammer
| cmbuck wrote:
| This guidance may help for sample collection, but wouldn't
| fully address the whole chain of custody. If the test
| equipment or handling tools/processes in the lab expose the
| samples to PFAS, then the test is botched. And this is
| challenging because PFAS are so prevalent and ubiquitous.
|
| Don't get me wrong, I would love to have a test available for
| PFAS levels. However I've previously been denied a test from
| the medical provider due to the issues I've outlined above.
| So I think it would be helpful to know if/how they have
| addressed this problem.
| oezi wrote:
| Nice!
|
| How can you interface with Quest diagnostics like this?
|
| When you say that you are working to expand this to other
| locations what does this mean? Are you negotiating with other
| Quest labs?
|
| The test is not approved by the FDA so why can they provide it?
|
| Are you affiliated with the test provider or Quest in any way?
| [deleted]
| mdrew wrote:
| Laboratory developed tests (LDTs) don't require FDA approval.
| However, this test is specifically referenced in the National
| Academies of Sciences, Engineering and Medicine PFAS exposure
| report (sort of the go to document for PFAS exposure and
| management). Link:
| https://www.ncbi.nlm.nih.gov/books/NBK584705/
|
| We have a doctor we work with and a Quest account.
| cypherpunks01 wrote:
| I believe that any doctor is able to order any Quest tests,
| like this one.
|
| Quest doesn't do the analysis on this particular test - Quest
| and LabCorp both send them out to NMS Labs in PA who performs
| the lab work.
| mdrew wrote:
| Correct
| pwenzel wrote:
| I grew up in an area of the Twin Cities metro area of Minnesota
| that has very high PFAS contamination from decades of 3M's
| dumping of chemicals. Would love to get one of these tests once
| available in Minnesota!
|
| https://en.wikipedia.org/wiki/3M_Contamination_of_Minnesota_...
| LeifCarrotson wrote:
| I grew up (and still live in) the House Street Disposal Site
| that has very high PFAS contamination from 3M/Wolverine leather
| treatment.
|
| There's a whole saga of testing involved:
|
| https://www.michigan.gov/pfasresponse/investigations/sites-a...
|
| https://www.michigan.gov/mdhhs/safety-injury-prev/environmen...
|
| I ended up receiving a few complete blood surveys in the
| process - comprehensive metabolic panel, hematocrit,
| cholesterol, testosterone, albumin, bilirubin, thyroid markers,
| and at least a dozen other medical terms that I don't fully
| understand, plus what's apparently a more comprehensive
| PFOA/PFOS study than this one, with dozens of varieties of
| PFOS/PFOA.
|
| I had a total of 9.8 ug/L in my blood, after drinking water
| that was 78ppt PFOS for decades.
|
| According to your link, there were tests done by the state in
| the past, were you unable to participate in those studies?
| mdrew wrote:
| My level is 10.86 _ng /mL_
|
| Your level was 9.8 _ug /mL_?
|
| If so thats way way higher. I'm sorry.
|
| Edit: grammer
| LeifCarrotson wrote:
| No, ug/L, not ug/mL - sorry, my report gives units of 10^-6
| grams per 10^0 liters, yours gives results in 10^-9 grams
| per 10^-3 liters; we have very similar levels.
| mdrew wrote:
| Sorry to hear that. Join the wait list and we'll email you when
| it's available.
|
| Waitlist link: https://pfas.report/waitlist/
| wtsktte wrote:
| I tried to build an adjacent site a while back but couldn't
| figure out how to automatically generate the blood test. Quest
| doesn't appear to expose it via API. How are you generating the
| lab requisition form?
| cypherpunks01 wrote:
| Probably using.. a doctor. That is the only way to legally
| "generate" any arbitrary lab order. MDs can order lab tests in
| all US states, and I'm sure other licensed medical
| professionals have privileges to do so as well, depending on
| the state.
| karmicthreat wrote:
| Why isn't this available in Michigan? We are PFAS central.
| Especially on the western side where I am.
| mdrew wrote:
| We're working on it
| mway wrote:
| Would you consider adding a "let me know when this is
| available in my area" notification signup (assuming you
| anticipate some delay between areas of availability)?
| mdrew wrote:
| We have a wait list!
|
| Link: https://pfas.report/waitlist/
| mdrew wrote:
| As I understand it, aside from the local manufacturing,
| Michigan has one of the best testing programs in the country.
|
| In other states, testing has been laggard. Which is maybe why
| some states have "low" levels.
| mchannon wrote:
| This is kind of sobering.
|
| Standard male levels of testosterone are between 3-7 ng/mL.
|
| Standard female levels of testosterone are between 0.1-0.7 ng/mL.
|
| And you're over 10 ng/mL of this crap?
|
| Even if this stuff is a fraction as bioactive as testosterone,
| having more of it might explain a few societal health trends.
| veave wrote:
| pfas are estrogenic. And yes, it explains a few things.
| OscarTheGrinch wrote:
| What does it explain?
| mtrpcic wrote:
| It explains nothing, anything in this thread will be pure
| conjecture unless there are peer reviewed studies that
| indicate otherwise.
| brewdad wrote:
| This is the internet. If we can't offer up
| unsubstantiated conjecture, what are we even doing here?
|
| /s
| ethanbond wrote:
| We know that PFAS poisoning reduces sexual dimorphism (the
| difference between male and female physicality) and in
| animal studies it even affects dimorphic _behavior_. I.e.
| male and female animals in most species behave differently
| from each other, and when poisoned, they behave more
| similarly to each other.
|
| The bush that people are beating around is the question as
| to whether this stuff is affecting sexual expression of
| humans en masse.
| supportengineer wrote:
| Are you saying that if you have low testosterone, you should
| get this test?
| mchannon wrote:
| Not sure what I'm saying.
|
| Correlation v. causation isn't all that well known here.
| mdrew wrote:
| Wow I hadn't thought about that. Really puts it into
| perspective.
| Eigenstate wrote:
| That's hardly an apples to apples comparison. A typical
| American has around 100 ng/mL selenium in their blood. By your
| logic, that's a toxic heavy metal that's ten times as bad as
| PFAS in terms of concentration. It's actually an essential
| cofactor in many biological processes. I'm not implying PFAS is
| harmless, but the dose makes the poison and it depends what
| biological processes are being interfered with.
| ok123456 wrote:
| Guess I need to up the dose.
| DantesKite wrote:
| This is really cool.
|
| Just being able to take blood tests in general to get a better
| sense of what might be going on can be so informative.
| supportengineer wrote:
| Imagine the kind of data Quest Diagnostics is sitting on.
| j2bax wrote:
| Hopefully AI can learn the language and make meaningful
| discoveries.
| Ilnsk wrote:
| Pay $400 to a plaintiff so that he can then make $100 mil in a
| law suit that alleges representation of you.
| w10-1 wrote:
| Here's the test on NMS: https://www.nmslabs.com/tests/3427SP
|
| NMS does not list consumers as their customers, and none of their
| customers make medical decisions based on their lab work.
|
| NMS claims CLIA certification. This is the older law where labs
| self-certify compliance. Congress left CLIA in place alongside
| FDA IVD regulations to protect small pharmacists, but obviously
| Quest Diagnostics and LabCorp run fleets through that loophole,
| and most labwork is CLIA-certified, not FDA-approved.
|
| Paying to test for highly-prevalent, possibly-toxic, pervasively-
| feared, under-studied chemicals is an ideal recipe for fleecing
| people with no real benefit.
|
| Perhaps worse, if people get burned because it is corrupt, it
| puts people off trusting good providers. This is not just "Hey I
| made an app/web-site to track your period! How cool is that?"
| Some chemicals may be toxic, but so is fear.
|
| So yes, it's super important to enable people to concretely
| understand their risks, protect themselves, and advocate for
| health policies. All the more reason to do it right.
|
| So I hope you know what you're doing. Somehow the website needs
| to convey the organization behind it, and why that organization
| can be trusted to do this right, and not to mislead people.
| azinman2 wrote:
| But I cannot order this test myself from NMS, right?
| mdrew wrote:
| NMS does not offer tests direct to consumers.
| azinman2 wrote:
| Are there labs where I can go in and order arbitrary tests?
| codingdave wrote:
| Yep, search for "direct lab testing" and you'll find some
| vendors, and possibly some local clinics.
|
| But the thing with ordering your own tests is that it is
| not the only way to get these results. You can simply ask
| a doctor. They'll order it and help you understand the
| results and insurance can cover it. Depending on your
| insurance, that might be cheaper or it might not. There
| are pros and cons to both approaches mostly centered
| around how self-driven you want your care to be and
| whether or not you have a cooperative doctor.
|
| But I would add a general word of warning - raw lab
| results do need some broader understanding of what the
| expected results are. They'll typically tell you what
| numbers are too low/high, but will not tell you what it
| means if you are outside those limits. For some things,
| being a slight bit out of the norms is a big deal. For
| others, unless you are at a few multiples beyond the
| limits, there is northing to fret over. Knowing which is
| which is critical to know how to react to test results.
|
| I'm not saying you've gotta work with doctors - I'm
| saying that they do have a point that self-educated and
| self-diagnosed patients who learn the info off the
| internet are not always well-informed. If you are going
| to go the self-directed route for your health care, take
| the time to learn deeply and do it well.
| mdrew wrote:
| Well said. If you're not well informed, this isn't for
| you.
| [deleted]
| mdrew wrote:
| Ok, a few thoughts.
|
| Direct to consumer lab testing is offered in ~47 states in the
| country. It has been available for years with thousands of
| tests available. To date, there has been no apocalypse from
| empowering consumers to know about their own personal health.
|
| NMS is one of the preeminent toxicology labs in the country.
| This test is Liquid chromatography-mass spectrometry which is
| known, quantifiable, extremely accurate and repeatable test
| methodology.
|
| National Academies of Science, Engineering and Medicine
| explicitly references this lab in their report. Further, they
| go on to elucidate the risks and benefits of offering PFAS
| testing to people.
|
| "Harms of PFAS testing include fear induced by blood draw, a
| small risk of injury or infection at the draw site,
| difficulties in interpreting results, and psychological stress
| that may occur when people who are tested learn that they or
| their family members have high levels of PFAS exposure. On the
| other hand, biomonitoring for PFAS blood levels may also
| alleviate fears associated with not knowing one's PFAS levels.
| Another potential benefit is increasing awareness of exposure
| so that exposures can be reduced. If sources of exposure are
| identified, actions taken to reduce these exposures, such as
| using a water filter, may also benefit family members in
| addition to the person who was tested. Community-level benefits
| may be associated with PFAS testing as well, such as empowering
| communities to respond to contamination and providing a
| baseline with which to evaluate the impact of community-level
| interventions to reduce exposure. Additionally, biomonitoring
| for PFAS in the context of epidemiologic studies could provide
| more information about PFAS-associated health effects."
|
| Also a couple of quotes from the same paper.
|
| "Kristen Mello of Westfield Residents Advocating for Themselves
| (WRAFT) said to the committee:
|
| You don't have a problem getting an insurance assessor when
| your car is hit, you don't have a problem getting an insurance
| assessor when you have a tornado, but this slow motion
| unfolding environmental and public health disaster ... is
| intentionally keeping the information from us so that we cannot
| take action.
|
| Furthermore, Emily Donovan of Clean Cape Fear, said:
|
| Sadly it feels like guinea pigs are treated better, because at
| least their exposures are thoroughly studied for the betterment
| of humanity.
|
| And Cathy Wusterbarth of Need Our Water said:
|
| We've tested the fish; we've tested the deer; we've tested the
| groundwater, the waterways, and the foam. When are we going to
| test the people?... The only risk [of testing] is to the
| polluters who do not want us to link them to our exposure."
|
| Make what you will.
|
| Source: https://www.ncbi.nlm.nih.gov/books/NBK584705/
| leksak wrote:
| You sound defensive
| mdrew wrote:
| Just pushing back mildly on the whole "fleecing people"
| language and implication that NMS labs is somehow "corrupt"
| with no evidence.
| treeman79 wrote:
| Went to doctors dozens of times with severe but vague
| symptoms. Was admonished repeatedly for doing my own
| research. All the doctors get saying it was anxiety, and that
| I was simply a hypochondriac. After years of this found out I
| had 3 fairly uncommon conditions that mixed to produce crazy
| issues. Proper treatment resolved my issues. I've met many
| others who have had similar problems.
|
| Consumers should always be allowed to do their own research.
| xracy wrote:
| I don't think the previous commenter was saying "don't test
| people" but there are a few comments on here about how
| sketchy this website/company looks.
|
| So instead, the question is, if I pay $400 what meaning/value
| am I getting from this. And what can I get above and beyond
| the given 98% certainty I have that I've already ingested one
| of these chemicals?
| mdrew wrote:
| I get it.
|
| I think it's right there in the post itself. If you have
| certain occupations, live in certain zip codes, or have
| medical problems, a test like this can prove invaluable.
|
| If you're just curious, your mileage may very.
|
| I do push back on the idea that not knowing is somehow
| better. Or people cannot handle learning new information
| about themselves. It's an old idea from medicine I hope we
| can move past as it just entrenches the power dynamic
| between caregivers and patients.
| vkou wrote:
| > I think it's right there in the post itself. If you
| have certain occupations, live in certain zip codes, or
| have medical problems, a test like this can prove
| invaluable.
|
| Invaluable, as in, worthless?
|
| Invaluable for _what_? What are you going to do if you
| test positive?
| mdrew wrote:
| I encourage you to read the rest of the discussion.
| xracy wrote:
| Uhh, you haven't answered this person's question in the
| rest of the discussion. What is the value of this test
| over assuming that I have this? What treatment exists
| that I can get if I know my blood contains PFAs?
| mdrew wrote:
| Depending on your Total PFAS blood level, you are at
| increased risk for certain medical conditions which
| require ongoing monitoring by a physician. Knowing this
| may prevent the development of future diseases or allow
| you to catch it early in its progression. NIH graphic: ht
| tps://res.cloudinary.com/mpsh87/image/upload/v1687923551/
| N...
|
| If your level is significantly elevated (>20 ng/mL), you
| can audit your environment by testing your tap water and
| installing a reverse osmosis whole house filter
| (expensive). If your level is low, you don't need to do
| any of this. By eliminating point source exposure, your
| PFAS levels would naturally decline in time.
|
| Lastly, I bring up therapeutic phlebotomy as interesting
| emerging research because it points in a concrete
| direction to something that is very actionable (pending
| more study).
|
| Edit: grammer
| mdek wrote:
| > NMS claims CLIA certification. This is the older law where
| labs self-certify compliance. Congress left CLIA in place
| alongside FDA IVD regulations to protect small pharmacists, but
| obviously Quest Diagnostics and LabCorp run fleets through that
| loophole, and most labwork is CLIA-certified, not FDA-approved.
|
| This is highly misleading. CLIA and the associated federal
| regulations are the standard to which diagnostic clinical
| laboratories are held, not an "older" or "loophole" regulation.
| All laboratories in the US that provide patient results for
| clinical use are regulated by CLIA. There are FDA-approved test
| systems and "Lab-developed tests" (LDTs) that are BOTH subject
| to CLIA obligations, which are unbelievably complex (and in my
| opinion are a source of regulatory capture in laboratory
| medicine, but that's not directly relevant). Most high
| complexity lab tests are LDTs.
|
| FDA-approved tests go through a formal FDA process such that
| the performing lab only has to "verify" the performance
| characteristics prior to patient testing. An LDT requires a
| much more stringent lab-level validation plan prior to patient
| testing. Both requiring strict ongoing quality control and
| quality assurance. And while the validation plan for an LDT can
| be self-designed, there are still strict requirements for what
| it most contain.
|
| Compliance is NOT "self-certified," instead there are routine,
| extremely intensive compliance inspections (scheduled and
| unscheduled), either by a regional CLIA office, or by an
| organization accredited by CMS to provide such verification of
| compliance (such as CAP or COLA). These are not cursory
| inspections but a deep dive into all lab operations and
| personnel, equipment, maintenance and quality records, and
| other documentation.
|
| I'm not a huge fan of Quest or Labcorp's presence in the field,
| and I don't know the specifics of NMS and this PFAS testing
| (CLIA compliance isn't required for research or non-clinical).
| If NMS has CLIA certification and they state the methodology
| and limitations of their LDT it's generally perfectly valid to
| provide the test, and the burden is generally on the downstream
| physician or provider to ensure the results are properly
| interpreted and applied.
| jrmski wrote:
| Any thoughts on where your personal exposure came from?
|
| Also, I would love to see a histogram of results among the
| general population, if that can be found in the literature
| anywhere. I think it would be helpful context for result
| interpretation and a useful addition to your FAQ.
| mdrew wrote:
| I'm not exactly sure.
|
| My levels of PFOS was the highest, that's "Scotchgard". The
| house I live in has a very expensive reverse osmosis water
| filter on the tap so I don't think it's that.
|
| I eat a ton of fish (like everyday) and recently read they are
| a significant source of PFOS exposure:
| https://pubmed.ncbi.nlm.nih.gov/36584847/
|
| Some of the limitations of the test are you can't tell if this
| is past or ongoing exposure. Hence my desire to investigate
| phlebotomy.
|
| PFOS has a half life of ~2.7 years so it could have been there
| for a while. Source: https://oem.bmj.com/content/75/1/46
| haskellandchill wrote:
| Oh yea fish, did you also have above average mercury?
| mdrew wrote:
| I'm not eating fish at the top of the food chain. Mostly
| sardines, lake trout, mackerel.
| sschueller wrote:
| Clothing, food containers and cooking utensils would be my
| guess.
|
| Remember the cool ads in the 90s for pants that would repell
| water and dirt?
| ShakataGaNai wrote:
| This is interesting, and I suppose has a use of "data over time"
| but I fail to see how this testing is of any actionable value for
| the average person. So you're exposed, and PFAS is in
| EVERYTHING.... so ... what should I do? Nothing realistically.
| Unless I find an obvious source like my water, there isn't much I
| can do besides replacing my cooking pans. I can replace my pans
| without this test.
|
| It's a little like those ads to sell you a full body MRI. Most
| doctors recommend against them because you're likely to do more
| harm to yourself than they actually fix something.
|
| If you're concerned about PFAS, live a healthy life and skip
| spending money on the testing. Live somewhere with PFAS in the
| water? Get a reverse osmosis filter. Replace your cookware with
| something that doesn't contain PFAS. Don't use storage containers
| for food with PFAS. Check your water bottles.
|
| Then live your life, because until we change as a society, there
| is only so much you can do.
| mdrew wrote:
| I think for certain high risk populations, specifically
| pregnant women or women planning on becoming pregnant, it makes
| sense.
|
| Based on the new clinical recommendations, my 10.86 ng/mL level
| puts me at elevated risk for preeclampsia (if I were a
| women/pregnant). Knowing that could mean my BP during pregnancy
| is more closely monitored, with a BP cuff for example.
| ShakataGaNai wrote:
| That's fair. So like any other testing, this is only useful
| for a small population, and you should consult your doctor
| first.
| mdrew wrote:
| You'd want a good reason to test
| prepend wrote:
| > I think for certain high risk populations, specifically
| pregnant women or women planning on becoming pregnant, it
| makes sense.
|
| Does it though? What will a pregnant woman do based on her
| results? Will having PFAS affect someone's decision about
| becoming pregnant?
|
| Pregnant women are going to monitor BP anyway. And the
| intervention is $100 for a BP cuff so that's cheaper than the
| test. So we're better off just recommending monitoring BP
| more closely than this test.
| mdrew wrote:
| Since this is an out of pocket test not covered by
| medicaid/medicare, I don't know if the value based care
| argument is that relevant. I know what you're saying
| though.
|
| The value we provide: If people want to know, they can now
| know.
|
| I also think not making the test accessible also has
| downsides.
| 0cf8612b2e1e wrote:
| Time to start blood letting. A human has ~5 liters of blood
| and blood donations are 0.5 liters, every two months. So with
| a year of effort, could cut your levels in half (0.9^6 =
| 53%).
| mdrew wrote:
| I believe they let you donate every 6 weeks
| stepbeek wrote:
| Depends on country. UK is every three months.
| upsidesinclude wrote:
| >so ... what should I do?
|
| >replace my pans
|
| >Get a reverse osmosis filter. Replace your cookware with
| something that doesn't contain PFAS. Don't use storage
| containers for food with PFAS. Check your water bottles.
|
| Oh, so all of that would be a good start for anyone and
| everyone.
|
| The test can help to determine if something, like blood
| donation, might be a reasonable course of action for a specific
| person.
|
| This is a great test and a worthwhile addition to our
| understanding of how prevalent these substances are within the
| the body.
|
| Any reduction of PFAS in the blood would be beneficial as they
| are endocrine disruptors.
| ars wrote:
| There's tons of things you can do.
|
| What you should not bother doing is replacing your cooking pans
| because PFAS does not come from that. (Nor does it come from
| food storage containers or water bottles.)
|
| The first thing to do is avoid paper dishes, no paper straws or
| any other kind of compostable dishware. The are frequently
| sprayed with PFAS to make them waterproof, and unless you are
| buying them yourself and checking you have no way to know what
| kind they are.
|
| Avoid snowboarding - snowboards (and skis also I think) are
| sprayed with PFAS to make them slippery. The snow in the area
| will be covered in it, so just don't do that kind of sport.
|
| Check your outdoor clothing, and kind of breathable clothing
| that is also waterproof is most likely coated with PFAS to make
| that happen. This is not just rain jackets, but also active-
| wear advertised as "quick drying".
|
| Add a carbon filter (any kind) to your drinking water, you
| don't need reverse osmossis, carbon works fine. And helps for
| tons of other things you don't know are in there - plus it
| tastes better.
|
| As a general rule any time you see an object that should get
| soaked with water stay dry be careful!
| mdrew wrote:
| Those waterproof jackets from REI that magically shed water
| droplets... for 9 months until the coating wears off and your
| jacket is just soggy
| eutectic wrote:
| PFAS are used in the manufacture of teflon pans, but teflon
| pans themselves are not a major source (as I understand it).
| prepend wrote:
| According to their site you should consult an attorney.
|
| This falls into the "neat, but what can I do" category and at
| $400, someone really needs to be into self data.
| ShakataGaNai wrote:
| Well $400 for them to order the test for you, then however
| much for quest to actually do the test.
| mdrew wrote:
| I would also say this attitude was pervasive when we used
| leaded gasoline, which widely contaminated the biosphere, roads
| and people.
|
| It's everywhere. We all have it. Why bother.
|
| I think we now know there's no safe level of lead in the blood.
| If you have suspected exposure in 2023, doctors quantify your
| lead level through a blood test and if it's elevated, recommend
| a medical procedure called chelation to remove it.
|
| With PFAS, the medicine is just starting to catch up to the
| horrors of the news cycle.
|
| But I think in the future, PFAS contamination is going to be
| treated in a similar way to lead exposure. That is, medically.
|
| But right now, it's easy to throw up ones hands and say, it's
| all fucked. Why bother doing anything.
| ShakataGaNai wrote:
| So the "what should I do?" was the big question.
|
| Even in your OP, you said you didn't know what to do about
| it. Neither does the website say much other than basically
| "lawyer". If there is something I can do to help me, then
| there is a purpose to the test. This chelation you mentioned.
|
| But again, this should be a "See a doctor first" situation.
| What are the risks of chelation? Is it safer for me to have
| PFAS than go through chelation?
|
| The lawyers ( https://www.pintas.com/pfas-class-action-
| lawsuit/can-pfas-be... ) say there is nothing I can do. So I
| should sue.
|
| The news says there might be a way soon (
| https://www.nbcnews.com/health/health-news/new-way-
| destroy-p... ) to get rid of PFAS, but nothing about from the
| human body.
|
| At least the EPA has some suggestions about how to reduce
| your risk: https://www.epa.gov/pfas/meaningful-and-
| achievable-steps-you...
| giantg2 wrote:
| "to get rid of PFAS, but nothing about from the human
| body."
|
| We have some really old tech that can reduce your levels
| -blood letting. (... or donation).
| mdrew wrote:
| I don't have all the answers. Just trying to provide one
| small solution in the chain.
| ars wrote:
| So far as I know chelation is not effective for PFAS,
| chelation is for metals.
|
| PFAS will eventually (slowly) leave your body - focus on
| not getting anymore, not on removing it. I posted a comment
| with suggestions elsewhere in this thread.
| azinman2 wrote:
| Evidence so far is that plasma and blood donations can
| remove it slowly.
| mdrew wrote:
| Correct. I was using lead chelation as an analogy for the
| medical management of PFAS contamination.
| eutectic wrote:
| Well, in the case of lead, I don't think it was irrational
| for individuals to feel disempowered. The solution was
| regulatory and societal change, but how many people want to
| devote their lives to being PFAS crusaders?
| mdrew wrote:
| Society is starting to change. EPAs super aggressive new
| water quality standards. Bans on PFAS in packaging.
|
| PFAS crusader haha.
|
| Edit: forgot the word water
| dingnuts wrote:
| Correct me if I am wrong, but I thought the global lead
| poisoning hypothesis that was popularized by Neil DeGrasse
| Tyson's remake of Cosmos was determined to be based on
| extremely scant evidence and may have been outright false
| JBorrow wrote:
| What are you talking about? This is an ongoing global
| public health crisis:
| https://www.who.int/news/item/23-10-2022-almost-1-million-
| pe...
| rcme wrote:
| A recent study in New Zealand found that blood lead levels
| of 3.5 micrograms / dL, which is the lowest easily
| detectable level, were associated with a drop of 1 IQ.
| People during the times of lead paint and leaded gasoline
| often had levels of 80 micrograms / dL. It seriously messed
| them up.
| mdrew wrote:
| Our first version of the site was PFAS.wtf but that
| didn't test well
| rcme wrote:
| Lead in the blood is really just a side effect of chronic
| exposure. What's currently considered elevated is something
| like 3.5 micrograms / dL. It's equivalent to just a few
| specks of lead dust in your blood. The bigger issue is that
| lead in your blood means you have lead in your bones where it
| will poison you throughout your life.
| mhardcastle wrote:
| Donating blood or plasma has evidence of reducing pfas. If I
| knew I had high measured levels, I'd certainly think about
| doing it more.
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8994130/
| haskellandchill wrote:
| Are you giving someone bad blood in that case?
| npongratz wrote:
| I can direct you to answers I got a couple weeks ago when I
| asked a similar question:
| https://news.ycombinator.com/item?id=36261100
| mhardcastle wrote:
| If you're donating because you know your levels are
| elevated then I'd agree with this thought.
|
| (While also agreeing with those in the thread saying that
| high-PFAS donations are likely often better than no
| donations)
| bauruine wrote:
| The negative health effects of PFAS are completely
| irrelevant if the alternative to this "bad blood" is death.
| giantg2 wrote:
| Generally agree, but that could be true of many other
| things like lead too. So we have to be careful not to
| take it to the extreme.
| jsharf wrote:
| Well, assuming they likely have some PFAS already in their
| system, you might just be giving them blood with the same
| concentration of PFAS that they already have.
| mianosm wrote:
| Not always, as quite often the donation is on hand, but not
| necessarily used.
|
| Also: better to save a life and either average down
| whatever PFA count they have, or bolster their blood volume
| so they can start producing their own lower PFA infested
| hemoglobin.
|
| Lesser of evils, and kind of a win win: if everyone was
| blood letting for the safety and humanity of others.
| [deleted]
| bolangi wrote:
| I've used PTFE dental floss for decades, and recently diagnosed
| with a thyroid condition. I wonder if there could be a
| connection. This test will at least give me an idea of my blood
| levels of PFAS.
| mdrew wrote:
| Honestly, the dental floss is the most fucked PFAS application
| out of all of them.
| ars wrote:
| No, that is incorrect. PTFE is not a PFAS (it's chemically
| related, but is not the same).
|
| You are perfectly fine with PTFE dental floss - it has no
| reactive PFAS components in it.
| mdrew wrote:
| Interesting.
| upsidesinclude wrote:
| Take that with a grain of salt
| upsidesinclude wrote:
| That is not a good recommendation and is also incorrect
|
| PTFE, the material, does not contain PFAS in bulk form.
|
| That's the end.
|
| Floss, as a product, could contain any number of compounds
| related to the manufacturing, packaging and coating.
| exhilaration wrote:
| What floss should one use to avoid these chemicals?
| mdrew wrote:
| There's no PFAS labeling requirements and i bet a lot of
| the manufacturers lie anyways. I have no idea.
|
| I went with Grin because they said it's PFAS free. Best I
| could do.
| MicropenisMike wrote:
| Is there a list of the tests worth taking to get as full a view
| as possible into my health?
| mdrew wrote:
| A lot of DTC lab testing is actually cheaper than rolling the
| dice with your insurance company
| w10-1 wrote:
| Quest Diagnostics, one of the biggest labs in the US, has a
| portal where you can order tests directly, including panels for
| wellness, allergies, etc. Descriptions are fairly general but
| accurate AFAICT. I've bought ~$1,000 worth over ~4 years with
| no real hiccups.
|
| https://www.questhealth.com
| toomuchtodo wrote:
| This is awesome. Looking forward to your expansion beyond
| California and efforts to have insurance cover this diagnostic
| test.
|
| Would also be cool to have an opt-in for folks to share their
| report, location, etc for research purposes.
| mdrew wrote:
| In regards to the data collection, we thought about that but
| don't want to scare people off. Maybe zipcode is enough? We
| already added a small option dropdown for occupation.
| stainablesteel wrote:
| so are they selling this to health insurance companies?
| Johnny555 wrote:
| _am currently deciding what to do next._
|
| That's what I was wondering, what do you do with this
| information? How do you narrow down where your exposure came
| from?
| mdrew wrote:
| Honestly it's super hard. And weird.
|
| It reminds me of leaded gasoline in the 50s. It's everywhere.
| Everyone has it in their bodies. What now.
|
| New regulations in California are banning this stuff in food
| packaging. And EPA just has new limits for tap water that are
| really aggressive.
|
| So I think it's moving in a good direction.
|
| Since my tap water isn't the issue, and I don't have any
| obvious other source of exposure, I'm currently focused on how
| to get out what's already in there.
| jeremy151 wrote:
| Maybe start donating blood regularly?
| https://jamanetwork.com/journals/jamanetworkopen/fullarticle...
| toomuchtodo wrote:
| Doesn't this end up in some other poor sap then? Wouldn't you
| want to have the blood collected and destroyed as medical
| hazmat, along with testing to confirm burden reduction?
| Johnny555 wrote:
| I think the guy that needs a blood or plasma transfusion is
| going to be much better off with it (even with the PFAS),
| than without.
| bauruine wrote:
| The people that received your blood have most likely
| "destroyed" alot of their own which most likely also
| contained PFAS thats why they need yours. No need to
| deliberately throw away perfectly good blood.
| jrockway wrote:
| It depends on the need for the blood, I guess. Getting a
| nanogram of PFAS is preferable to dying from blood loss.
| The nanogram of PFAS increases you chance of dying 5%
| sooner by 20%, whereas losing all your blood through a
| wound guarantees a 100% chance of dying in the next 20
| minutes. (All made up numbers, but you can see the
| risk/reward balance.)
| mdrew wrote:
| I wouldn't be surprised that in 5 years, there's a little
| drop down when you go to donate blood that asks if you're a
| firefighter, ski wax technician, factory worker or lived in
| certain contaminated zip codes. You select it, and they
| exclude you.
| [deleted]
| CaptainNegative wrote:
| You're never concentrating the PFAS, so at worst you're
| bringing poor sap's new PFAS concentration closer to your
| own pre-transfusion levels.
|
| So the question is whether they need the blood more than
| you did pre-transfusion. If they did, then you're still
| commiting a net positive. If not, then it serves them right
| for requesting a blood donation despite needing it less
| than did an individual who was ready to donate their own.
|
| Unless the blood is going to research, in which case it is
| a net positive regardless.
| autoexec wrote:
| Quest Diagnostics is pretty sketchy. They've been busted for
| fraud, illegal kickbacks, inaccurate tests, privacy violations,
| etc. They sell every scrap of data they can get away with to
| third parties including marketers and it's a lot of data
| (https://www.questdiagnostics.com/our-company/privacy/privacy...)
| which includes: Professional/employment-related information,
| products or services purchased/obtained/considered, consumer's
| preferences, characteristics, psychological trends,
| predispositions, behavior, attitudes, intelligence, abilities,
| and aptitudes. driver's license/national or state ID number,
| citizenship status, immigration status, race, national origin,
| religious or philosophical beliefs, sexual orientation, sex life,
| precise geolocation, information concerning your health, and
| genetic information.
| mdrew wrote:
| The only information we use to generate your lab req in Quest
| is: name dob biological sex phone number
| autoexec wrote:
| I imagine the bulk of your data is collected when you show up
| for the blood draw. You have a really nice site, but should
| defiantly try to find and work with a more ethical and
| trustworthy lab. On the plus side, when they sold your data
| they probably had a lot of nice things to say about your
| intelligence, abilities, and aptitudes!
| exmadscientist wrote:
| Quest is one of the two major testing companies in the US.
| (And LabCorp is not much better.)
|
| I understand the sentiment here, but it's like saying "you
| should definitely try and find and work with a more ethical
| political party than the [reader's choice:
| Democrats|Republicans]". Good luck! It's not likely to
| happen, even if we all wish otherwise.
| akiselev wrote:
| They've also contacted my emergency contacts in an attempt to
| collect payment for blood tests when they made a mistake
| writing down my insurance information... that was already sent
| to them by the doctor ordering the test. The link to the
| receipt in the text message listed enough details about the
| blood tests to deduce some very private information.
|
| I have never in my life seen a more flagrant and willful
| violation of HIPAA. It's the only time I have ever contacted my
| state AG or the HHS.
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