Testing On Your Own — When the Docs Refuse

OK, you’ve tried and tried to get your docs to run some tests you want, and for whatever reason, they just won’t do it.  Or, maybe you want to monitor certain parameters, say, with twice a year testing for some autoimmune markers, for several years post flox – and your docs just don’t see the need.  For most of us in the US, you can either order these tests yourself, or, get a functional or alternative practitioner to order them for you.  Either option is actually not very hard to do.  All you’ll need is the money to pay for it.  And there, of course, is where the problem is.  No one wants to have to pay for their own testing, especially if they already have insurance.  But unfortunately, the only chance most of us have of getting insurance to pay for testing is if a physician orders the tests.  So finding a physician willing to work with you can be super helpful for this reason alone.

For those of us feeling “diagnostically abandoned” by the medical profession, but still motivated to test for diagnostic or monitoring purposes, the option exists to go it alone.  As I said, it’s pretty easy to do – you can get almost any blood, saliva, or urine test you want – as long as you’re willing to pay for it.   It adds insult to injury to be floxed, then dismissed or denied by the medical profession, and to top it all off, have to research, order, and then pay for your own diagnostics.  But there it is.  This is the unfortunate situation we as flox victims find ourselves in.  Despite living in a country that supposedly has “the best health care in the world”, most of us will find out that we’re on our own after being floxed.  I’m beyond angry about it myself, and believe me, I’ve got plenty of lengthy diatribes I’ve written about this topic myself.   But it doesn’t change the fact that for some of us, and possibly many of us, the only way we’re going to get some of this testing done is if we do it ourselves.  Being angry at the medical profession, the government, the insurance companies, the FDA, and whoever, isn’t going to get us tested.   And in my opinion, not testing just because you’re pissed off at the medical profession, only hurts you more, and doesn’t help any other flox victims either.

The bad news is, running “lots of tests” adds up and is expensive, especially over time.  The good news is, doing it on your own, you won’t spend any money traipsing to specialists and doctors, which in itself adds up over time, even with co-pays.  And more importantly, ordering the tests on your own might not be much different in costs than going through your doctor and insurance company anyway (see chart below).  Another sad and disgusting fact about the wonderful world of “health care” is that prices vary widely for the same lab tests from the same labs (see this rather disgusting and astounding example here).  Welcome to the world of yet another big rip off in medicine, where everyone gets charged a different price for the same thing (kind of like airline seats and Rx drugs), depending on the day, who you are, the phase of the moon, or some other completely random and mysterious nonsensical “reason”.

I’ve done a lot of testing on myself in the past five years.  Most of it I did through an online company called My Med Lab (MML), here:

https://www.mymedlab.com/

All you have to do is sign up, order which tests you want, pay with a credit card, and within an hour you can be having your blood drawn depending on your location, and results within a few days.  Visit their website to find a clinic nearest you that will draw blood.  Obviously, if you live out in the middle of nowhere in a super rural area, you won’t have the options that someone in a town or city would.  If there’s not a listing close to you, check the LabCorp Location sites (see below) or call or email local physicians in your town to see if they send samples to LabCorp.  If they do, they might easily do the blood draw for you.  If you’re in a state that does not allow self testing, there are certainly ways around that, which I won’t list here, but use your imagination.  If there’s a test you are interested in, but it’s not listed on the MML site, contact them and ask them about ordering it.  MML can send samples to a number of different labs (not just LabCorp), and can run tests that are not listed on their website.  All you have to do is ask.

MML uses a lab called LabCorp (LC) for sample testing, here:  (Note update:  as of Jan 2017, I believe MML is now using Quest Diagnostics, see below).  However, LC is still quite popular with both physicians and patients as well.

https://www.labcorp.com/wps/portal/

This means when you have blood drawn at a clinic, your sample will be sent to LC and analyzed at one of their labs.  MML is just an easy online way to order your own tests to be analyzed at LC.  LC runs over a million samples a day from hospitals and doctors all across the US, so presumably their testing assays are standardized and fall under standard QA/QC regulations.   Most people in the US have access to this self testing (meaning you can order the tests you want without a doctor); however, there are a few states which don’t allow self testing (for example, NY, NJ, RI, MA or MD).  I can think of several ways to get around this for those who are motivated; however, it’s not my place to make those recommendations here.  If you don’t see a clinic close to you that can do the blood draw on the MML website, look on the LC website.  Sometimes they will list labs that MML doesn’t.  Neither website has a good search directory for this overall, so calling around in your area is probably the best bet.

Theranos is a new company coming soon to a Walgreen’s near you (unless you’re in NY or another state that does not allow self testing), here:

https://www.theranos.com/

They claim to be able to analyze hundreds of analytes with just a few drops of blood (so no more blood draws), at even cheaper rates than what I was paying with MML.   So far, it looks like they are only in Arizona, although they are planning on spreading out nationwide through Walgreens.  They are cutting prices even more for typical blood tests, and from what I can tell, may be a very convenient and affordable option once they are up and running.  I don’t know anything about Theranos yet except they certainly sound quite attractive as a testing alternative when it comes to price and convenience.   If FQ patients want to start testing various thyroid, endocrine, or other parameters, these folks may be the way to go.  (Update:  Controversy continues about Theranos; see links below.  Update 2:  As of May 2016, things are looking bad for Theranos; however I will leave my original information about them posted, and their website is still posting their testing with prices; see links below.  Update 3:  As of November 2016, it looks like Theranos blood testing service is toast.  I am keeping the information here as it is part of the timeline of this website and it is an interesting story).

Below is a table of price comparisons between what my hospital lab charged, MML, and Theranos (these are all October 2014 prices).  I had the following tests done through my HMO insurance, because I figured they should be useful for something.  (They will only use their own lab, and not send to LC by the way).

 

Analyte My HMO Lab My Med Lab/LC  

Theranos (note:  see controversy about this company below.  As of November 2016, it looks like this company is toast.)

TSH $128 $35 $11.55
fT4 $90 $48.75 $6.20
fT3 $169 $48.75 $9.75
Iron $66 $30 $4.45
Vite D, 25 $145 $65 $20.35
Vite B12 $168 $41.25 $10.36
Total $766 $268.75(if your doc will send to LC, your insurance will pay) $62.66(I don’t know if doctors will use this or not or if insurance will pay)
My cost (10% copay) $76.60 $26.88 $6.27

 

As I said, welcome to the world of yet another big rip off in medicine, where everyone gets charged a different price for the same thing (kind of like airline seats and Rx drugs) or prices change overnight.  Looks like when Theranos is available, I could use them and save money all around – with or without insurance.   I often ordered a thyroid panel from MML for $250 that included a huge number of analytes.  This same lab testing would have cost about $2700.00 or more for my insurance company if ordered by my own physician – a rather astounding difference.  The copay for me would have been more than the cost of me ordering it on my own through MML.  Not to mention, my physician would have never ordered such a comprehensive panel for me in the first place.  And with Theranos, my costs would have been slashed even more.

Yet another option is Quest Diagnostics, here:  (Update:  As of Jan 2017, I believe MML is using Quest Diagnostics, rather than LC, for all their diagnostics).

 http://www.questdiagnostics.com/home.html

They also will run almost any test you want, regardless of if it’s on their menu or not (they too, will collaborate with other labs).  I think you may have to have a physician order these tests (I’m not sure), but many functional and alternative practitioners can order from Quest.  Check their “Location Finder” to find if there’s a clinic near you who can do the blood draw, or order the tests for you.

Additional do-it-yourself lab testing (very similar process to MML) includes the following, taken from the Stop The Thyroid Madness (STTM) website:

Ulta Lab Tests

Direct Labs

True Health Labs

Private MD Labs

 

Need or want an ultrasound, CT scan, or MRI?   NextImage Direct can do them here:

https://www.directlabs.com/OrderTests/Imaging/tabid/7571/language/en-US/Default.aspx

Update:   The above link no longer links to the original imaging services page.   It looks like Direct Labs may no longer be working with NextImage.   I will leave the above link up however, as Direct Labs is yet another alternative for people to order their own blood work.   For lower cost imaging services, NextImage is still providing their services, including providing an online doctor referral if necessary.   I have not used their services, so I can’t speak to the process.  See the following links:    MD Aligne Costs, NextImage Direct offers the next generation of radiology services management, and MD Aligne and NextImage Direct Form a Strategic Partnership Providing Consumers an Affordable Option to Costly Medical Imaging Services.

My endocrinologist refused to order a thyroid/neck ultrasound for me (meaning, insurance wouldn’t pay for it then).  When I enquired about how much it would cost me if I paid for it on my own, I was quoted a price of $975.00.  NextImage Direct’s cost would be $239.00 – quite a difference. I would have had to drive about 90 miles for it, but it would have been worth it, had I pursued it.   If your doctor is able to order your imaging through NextDirect, you could save quite a bit of money, even on co-pays alone.  My physicians are not allowed to order any kind of testing from any other network facility other than their own, so as not to undercut their employer, so that option was out for me.

Again, I understand the anger at feeling like you have to order and pay for your own lab testing.  And believe me, I understand that money is in short supply for most of us, especially for those of us who can no longer work or bring in an income.  But if you’ve been floxed, get ready to shell it out for your traditional doctors, the alternative/holistic doctors, the ER visits, the IV’s, the meds, the supplements, whatever, etc.   Doctors don’t run these tests for free; they often times will double or triple the base cost of each test to help meet their own overhead. So when it comes to lab testing, if you know what you want, you could probably get a lot more bang for your buck by simply ordering the tests yourself in the long run.  This is the beauty of consumer direct lab testing. Then, if you decide to see a practitioner, you can simply hand them the results, and have that taken care of already.

I’ve worked in several labs (gov, university, and private) in QA/QC, so the question of “what is valid data” is never far from my mind.  I found my LC results to be consistent over time and with what I was experiencing symptom wise and experimenting with dosage wise. Some tests, such as thyroid antibody testing, which I did frequently, cannot be compared across labs, as they all use different assays, so this is something to be aware of.  This is not because the labs are bad; it’s simply because antibody testing all around is not an “absolute” as many of the more standard tests are.   For example, I preferred MML/LC for TSI, but another lab for TgAb, because of these differences.  But in order to make valid comparisons between the data I collected on myself, I mostly stuck with MML/LC, and found that even here, there was very good consistency and correlation with what I was experimenting with.  For example, in contrast to what most researchers told me, I found my antibody level going up and down fairly regularly and quickly, depending on what was going on with me.  The various Ig’s of TPO have varying half lives, but some of them are obviously much shorter than others according to my data.  Sometimes I did utilize different labs for the same tests, just to compare results.  I think both LabCorp and Quest Diagnostics are labs utilized by millions of people daily, including hospitals and clinics, so a reasonable assumption of quality can hopefully be made.

 

Examples of Lab Tests

I did many STTM Complete Thyroid Panels here:  https://sttm.mymedlab.com/sttm-profiles/sttm-thyroid-complete  for $249.00.   I calculated out this same lab work once via my own HMO and estimated it would cost about ten times as much ($2700 or more) for the same analytes (Update:  this particular link no longer works, but you can still create your own panels.  If I remember correctly, this panel included TSH, fT4, fT3, rT3, TPO, TgAb, CBC, CMP, UA, Cholesterol panel, iron panel, and maybe more).

A simple home test you can order is a spot iodine test, here: https://www.mymedlab.com/products/search?utf8=%E2%9C%93&q=iodine .  The “pro iodine” folks don’t believe this test is useful or valid; I disagree.  And it’s easy enough for anyone to order and do.  This test might potentially give some information as to what is happening with iodine during the acute, as well as the longer term chronic phase of FQT.  In general, iodine ingested should equal iodine excreted.  Look at the diet you’re currently eating, and search the web to get general ideas of how much iodine you’re ingesting every day from the food and supplements you’re taking.  Eat those same foods on the day you do the iodine test.  Then compare the result.

The same type of testing can be done with Fluoride through MML, here:  https://www.mymedlab.com/children-testing/fluoride-urine .  I ran both serum and urine Fluoride, but not during the acute phase of my floxing (which would have been the time to run it).  Both were negative, but I ran these tests about one and a half years after my March 2010 event.  One study shows increased serum and urinary excretion of fluoride in children given Ciprofloxacin:  http://www.ncbi.nlm.nih.gov/pubmed/7633153.   I don’t know how sensitive the MML testing is for fluoride (I think they just use an electrode), but it would be something to at least try and look at.  As an aside, I would hope urinary fluoride excretion would be occurring during FQ use or use of any fluoridated drug; better it’s leaving the body than staying in cells or tissues. (Update:  looks like this link no longer works, but you can contact MML and request this test).

I also think testing for Lead Levels is important.   FQs chelate minerals from our cells, and some of those minerals are replaced from bone breakdown.  As bone breaks down, any lead within bone will be released as well.  I would recommend testing for lead several times a year after the acute stage, to see if this might be occurring.

I ran numerous cortisol panels on myself because of the close relationship between thyroid issues and adrenal issues.  These can be done in your own home, so it’s and easy and convenient way to test cortisol for yourself.  I used several companies, but really preferred this one here through MML because of the 6 point measurement, along with three for DHEA:    https://www.mymedlab.com/sabrescience-lab-tests/adrenal-stress-saliva-6-sample-sabre-science     Using salivary cortisol measurements is well accepted in the research community and the alternative or holistic health community, but not in the traditional medical community.  I really like the fact that you’re measuring 6 points throughout the day; if one value is a little high or low the significance of that would be much less than if the majority or all of your values were too high or too low.   In my case, my values were always in range, and when I was ON TH, they were spot on, with little to no variability.  When I was OFF TH, there was more variability, but I didn’t have any outstanding outliers.

Don’t forget celiac disease:  https://www.mymedlab.com/digestion/celiac-disease-complete

And IgG4 Food allergy testing:   https://www.mymedlab.com/dr-wentz/184-food-allergy-igg-alletess-trx   I would recommend testing this in the acute phase right away, and then monitor if symptoms continue to worsen.    Many flox victims experience food sensitivities or develop them over time and it would be helpful to know if these existed during the acute phase of being floxed as well.   Of course, it would be great to have data prior to FQ usage, but in most cases, that won’t exist.  So testing right away once your reaction starts, is probably the best we can do.  I wish I had run this test for myself early on.

And PTH:  https://www.mymedlab.com/products/search?utf8=%E2%9C%93&q=PTH.   Parathyroid abnormalities can result in spontaneous tendon ruptures.  The parathyroid glands are intimately associated with the thyroid gland due to their location alone.  If thyroid gland tissue or cellular damage or destruction is occurring, presumably the PT glands may be affected as well.

Another home test some flox victims may be interested in is 8OHdG as a marker of potential oxidative damage to DNA, here:https://www.mymedlab.com/products/search?utf8=%E2%9C%93&q=oxidative+stress .

Porphyria:  I include this here because I didn’t know where else to put it.  Acute Intermittent Porphyria is a real possibility on “the list” of things to look for in flox victims, especially those with increased sensitivity to foods, meds, and supplements.  I think every flox victim should be tested for this during the acute phase, especially those experiencing the extreme CNS symptoms, peripheral neuropathies, tachycardia, etc.   You can also test for this during “flares”.   You CAN run the urine tests yourself through MyMedLab, here, which orders from Genova/Metametrix.   You may also be able to order the GPL Porphyrins Profile through MML if you request it.  Otherwise, I would suggest this testing to a good naturopath, holistic doctor, or even your mainstream doctor if they will consider it (and my guess is it will cost more to go through them versus ordering on your own).    Both LabCorp and Quest can supply these tests as well; go to their websites and type in “porphyria” on their “test menu” searches (links won’t work here, otherwise I would supply them).

Radon Test Kit:   For those who will be housebound for a while, might want to check radon; here is an inexpensive home test I used.    Also make sure you have a carbon monoxide monitor in your home as well.

Here is the Theranos test menu:    http://www.theranos.com/test-menu?ref=footer    There is currently some controversy surrounding Theranos.   Legitimate concerns are validity of the tests.  On the other hand, I would imagine competitors charging $10,000 for a test might feel rather threatened by a company who will charge $10.00 for that same test.   Search the internet on the company to track the status of this company over time.  Here is one current article, with a TED talk by the company’s founder at the end:   Theranos Blood Test: The Insanely Influential Stanford Professor Who Called the Company Out for its ‘Stealth Research’.  The controversy continues here and here and here and here (this article does mention the historically accepted current “opaqueness of lab processes and prices” — which is one of the issues Theranos is being singled out and accused of).   As of April 2016, things are not looking good for Theranos, here.   May 2016, it continues to get worse for Theranos here.  However, as of May 2016, their “test menu” link, provided above, is still operational.   7/28/16:  Business Insider, Science:  Doctors Weigh In On Theranos:  “In his research, he’s found what’s already a well known frustration in the medical community:  lab results have a lot of variability.   The same sample can have results that vary from lab to lab, and even within the same lab . . . The media mostly skipped over how variable results can be across the entire industry and zoomed in on Theranos.”  (My note:  this fact does not negate lab testing in an attempt to find biomarkers or diagnose conditions; however, it does mean one needs to be cognizant of the limitations as well as strengths of testing.  This is a big reason I did multiple serial testing of my thyroid parameters using one lab.  I also did send split samples to different labs on occasion.  Yes, it gets expensive, but coming from a QA/QC background in laboratory work, this was something I felt I needed to do to help me trust the results I was getting, and the patterns I was seeing.)  November 2016 Theranos Update:    Beyond Business:  Disgraced Theranos Bloodied Family, Friends, Neighbors.

 

Genetic Testing: Do it Yourself

Increasingly, genetic testing will become part of the diagnostic process.   Many people are already familiar with companies such as 23andMe and Ancestry.com.   As prices for DNA sequencing continue to plummet, more and more companies will spring up offering increasing quality and quantity of DNA analysis directly to consumers.   For example, as of late 2016, Genos is now offering whole exome sequencing (50 million loci covered, versus under a million for 23andMe and Ancestry, for only $3-400 more) directly to consumers, as well as providing the opportunity for consumers to participate in research via their “Impact Network”.

I provide an example of how I used my own 23andMe data to participate in a research study on the webpage:    “Update June 2017: ME/CFS and Genetic Study.”

 

 

OK, I’ve Run the Tests, Now What Do I Do With the Results?

I cover this somewhat in the next section, some of which I will cut and paste here:

This section is not about interpreting your test results, which is why I didn’t use the word “Interpretation” in the section heading. The bottom line is, your doctor should be providing the interpretations of your lab values and differential diagnoses.   This is why they went through years and years of med school, internships and residencies.  Still, we all know how that goes.   Too often a doctor simply looks at the results and sees the same things we do:  either your lab values are “normal” or “abnormal”, depending on the numbers the lab sends back.  The report will state quite clearly what the normal numbers or range of numbers should be, and then will state if the patient’s numbers/results are in that normal range or not.  Sometimes the lab even puts your abnormal value in red, just to be extra helpful and give your doctor an additional hint in case they are hurried and don’t look at your report too closely.   For some doctors, this is as much a scrutiny as your test results will get.  Unfortunately for you, this is acting more like a technician, who just reads the numbers, instead of like a physician, who will try to interpret your numbers in the greater context of your symptoms and other lab values overall, over time.   Ultimately, we all need a good physician who will take the time to actually think about complex cases and what those lab numbers really mean in our individual case.

As patients, too often we’re stuck with the “technician” kind of doctor. Although we as patients often can’t hope to make the educated interpretations from our reports than an excellent physician can, we CAN easily look at our lab data like a technician.  It’s just not that hard to tell when your own lab values are “in range” or “not in range”, simply because the report tells you that information.  And like I said, sometimes the abnormal values will even be in red colored font for you.    For the most part, I leave the question of what your abnormal value may mean (or, the interpretation), to your doctors or other resources you may go to try and figure things out if you’re stuck with a technician for a doctor.    Here, I’ll cover some simple techniques to be able to make valid comparisons of your lab data (thyroid values) from different labs, or to easily make comparisons of lab data between patients.

Again, see the next section for more details on the above paragraphs.

 

Here is an example of lab report results a person might get:

Sample Lab Report

 

Can you tell which values are abnormal? Yup, they’re the ones with the result values that are out of range, and labeled “high” in red.   So even if you don’t know what an abnormal value means, it’s usually pretty easy to figure out if it’s “normal” or “abnormal”.   Even someone who’s never heard of “TSH” before and doesn’t know anything about it, can see that on this report, it’s “abnormal” because it’s out of range.

With the advent of the Affordable Care Act, everyone in the US is supposed to be insured now.  This means that everyone in the US is supposed to have a General Practitioner, or a doctor, that they can show these results to and discuss with them.  Whether or not you have any questions about the results on your report, my recommendations, as a professional myself, have to be to keep your doctor (or a doctor) in the loop and send these results to them.   If you have any questions about the results of your testing, I think it’s important to try and discuss them with your doctor(s), naturopath, or other medical professional.   If everything’s normal, you can email them the report, letting them know you just want it in your files for your records.   If you have questions about anything abnormal on the report, you can ask them to respond, or ask them what, if anything, you should do next.

I understand that some people doing their own testing will go to all kinds of other sources (usually on the internet) for interpretations of their lab values.   Some people, in particular people who have been repeatedly dismissed, denied and denigrated by medical professionals, will only use doctors as a last resort for anything.   Unfortunately, the entire mainstream “health industry”, including the medical profession, has no one but themselves to blame for this phenomenon.   Being charged 10X – 10,000X more for lab testing by your doctor or hospital plan than you could do on your own, only to be blown off without any kind of interpretation of your results and what they mean, and even denied access to your own lab results, medical records or reports, all contribute to this.  This is why an entire industry of “do it yourself testing” is exploding, “doctors on demand” are exploding, “medical tourism” is exploding, complementary, holistic, and alternative medicine are exploding, and scrambling to purchase necessary drugs and medications in any country other than the US due to exorbitant costs are exploding even as we try to refuse or detox from the endless list of unnecessary drugs pushed/offered to us that have nothing to do with our actual symptoms or undiagnosed conditions.   It’s also why web pages and websites such as mine are exploding on the internet, for the exploding number of people who feel caught in a system that doesn’t really help them with their health problems, and feel they have no other options.

 

 

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