Top 5 Reasons Why You Shouldn’t Order Your Own Blood Tests

There is a recurring thread throughout the comments on some of my posts, with respect to people’s desire to order their own blood work. To give you an idea of the sentiment, here’s an excerpt from one such comment:

The mighty TSH test has already fallen. Taking a blood test and reporting its values to a patient and not being curious about their continued symptoms is not being a doctor. That’s just reading numbers… Patients have every right to order their own tests and investigate for ourselves. We paid doctors to do it, and they didn’t. Shame on them.

I like this comment because it is practically begging me to unpack the author’s implicit assumptions, stories she’s telling herself about her doctors’ competence and motivations, and the outright falsehoods she accepts as fact. With that preamble, let’s use her comment as inspiration to explore the reasons why patients should not be permitted to order their own labs:

1. Your Internet Research ≠ A Medical Degree

I can already sense you itching to bang out an angry response on your tiny mobile phone screen’s keypad*, but please take a breath and bear with me. There is an extraordinary amount of poor information on the web, particularly in the field of Endocrinology, in which internet quackery abounds. After tens of thousands of exam room encounters with patients, I can confidently state that it doesn’t matter how intelligent you are – you can still be bamboozled by alt med charlatans and you can still be generally stupid about your healthcare. You need someone to guide you through the cacophony of crazy that inhabits the internet.

The argument some of my readers make against this is: “My doctor is an idiot/incompetent/disinterested/condescending/callous, so I need to take my health into my own hands.” While I sympathize with people in this situation, you must realize that having a crappy doctor (or perceiving that you do) does not make you any more qualified to be your own doctor. You continue to be subject to all the same limitations, regardless.

Judging by the comments I receive on Hormones Demystified, my readership is overwhelmingly comprised of smart people. But even some of these sharp folks espouse internet falsehoods like they’ve been passed down on stone tablets by Moses himself. Look, I don’t blame you for believing some of the plausible-sounding medical advice that’s promulgated by alt med – it can appear incredibly reasonable and compelling. I would suggest, however, that you find a competent medical professional who can help you separate fact from quackery. Even if you are reading unimpeachable sources, you will need a doctor to help you interpret that information in the context of your exact situation, which leads me to:

2. You Can’t Be Objective About Your Health

Once you’ve weeded out the chaff and are dealing with a relevant set of facts, then you can work on applying those facts to your situation. But you’re going to need third-party, objective assistance. Think about it from the analogous and infinitely more obvious perspective of mental health. You can read a thick stack of self-help books, listen to all the podcasts in Tim Ferriss’ copious archives, and meditate until you’re astral projecting, but often you need a therapist to help you work through your issues. Could you stumble along on your own and get by? Maybe. Is that ideal? No. Can you administer intensive psychotherapy to yourself? No.

Following that logic, should you attempt to diagnose and treat your own thyroid problems, when it is well-recognized that the symptoms of thyroid dysfunction overlap with the symptoms of just about…everything? Do you really think you can be objective enough to pick the right lab tests and then interpret them in the context of everything else that could be contributing to the way you feel? I wouldn’t even trust myself to do this for myself, and I’m a doctor.

I remember a conversation I had during a dinner with one of my favorite surgeons. He was recounting a health scare in which he had some symptoms that convinced him he had pancreatic cancer (an often fatal malignancy). Before going to the doctor, he increased his life insurance policy dramatically, so that his family would be taken care of upon his certain demise. He then visited his primary physician with a list of tests and imaging he wanted. His doctor, recognizing that there were several diagnoses more likely than cancer, said, “Why don’t we start with a few simple blood tests and then take it from there?” Of course, there was a much more innocent explanation for this surgeon’s symptoms, and he’s still alive and kicking.

The point here is: maybe you have a medical degree, or maybe you’re just a smart cookie who is good at internet research. It doesn’t matter, because neither one of you is unbiased enough to treat yourself.

3. You Don’t Understand Two Pillars of Lab Testing

In Endocrinology vs Naturopathy – Steel Cage Death Match, I described two critical components of lab testing that alternative medicine practitioners and many laypeople clearly don’t understand: know your assay and know your pre-test probability.

Know your assay. Once a number is inked onto paper, and that number is flagged as “high” or “low,” people tend to give it a lot of weight, deserved or not. You have to know the characteristics of the instrument that performs the test (e.g. is it reliable and reproducible). You have to know what substances/supplements/medications can interfere with the assay. You have to know if what you’re testing is secreted in a pulsatile fashion or has a diurnal rhythm. You have to know if the test you’re running reflects whole body stores or just recent dietary intake. You have to know if already being on treatment changes the way in which you should perform/interpret the testing. I could go on, but I think you get the idea.

Know your pre-test probability. This often comes into play when you want me to review the 7 pages of worthless labs your naturopath ordered. There are flags on every page, so why do I often tell you “don’t worry?” Because – the vast majority of the time – I have zero clinical suspicion that you have any of the conditions for which you’ve been screened. Therefore, a mildly abnormal screening test has a near 100% probability of being a false positive.

Sadly, even when people appear to understand that knowing your assay and knowing your pre-test probability are crucial, they remain invested in performing lab work of dubious value. See if you can diagnose a lack of insight in the author of this comment on my post, Everything You Never Needed to Know About Reverse T3**:

The title of this article is horribly misleading. You should rename it. Call it something like “Why reverse t3 testing is useless.” I came to learn about reverse t3 based on the title of the article and got a thorough education about why it’s bullshit.

I took two things from this comment. One, the title of my piece was clearly perfect. Two, the commenter wants to hear only one side of the reverse T3 argument – the misguided one that promotes using it to guide the diagnosis and treatment of thyroid conditions. Despite reading my thorough debunking of rT3’s purported utility – which should save her from spinning her wheels with useless testing – she seems intent on pursuing additional “education” that will tell her what she wants to hear. To my way of thinking, this is strong evidence that people can’t be trusted to make good decisions when ordering their own lab work.

4. Ordering Unnecessary Tests Can Kill You

I realize #4 seems like a histrionic statement, but I assure you it isn’t:

A 50 year-old woman with nonspecific symptoms of fatigue and weight gain does some internet research and believes she must have hypothyroidism. She checks a “full thyroid panel” which shows a TSH in the lower half of the normal range, a normal FT4, a FT3 a hair under the lower limit of normal, a mildly elevated reverse T3, and negative TPO antibodies (spoiler alert: her thyroid function is normal based on this testing).

Using the crowd-sourced power of the internet, she becomes convinced of her hypothyroidism diagnosis and visits her doctor to obtain a prescription for pig thyroid. Her doctor attempts to explain why her lab results do not support a diagnosis of hypothyroidism. Expecting this might happen, she dismisses her doctor as under-educated and goes online to buy some pig thyroid (you can get anything on the dark web nowadays).

After a few doses of the medication, she feels amazing. Within a few weeks, however, her symptoms start returning. Not realizing that this is the stimulant effect wearing off, she increases the dose. For another few weeks, she feels amazing again, but then she regresses to her baseline state.

She continues to repeat this cycle over the course of a year. However, instead of feeling only increased energy and mental clarity every time she increases the dose, she now has the added symptoms of heart palpitations, tremors, and profuse sweating. At one year into this debacle, she has the abrupt onset of facial droop, weakness, and trouble speaking/breathing, at which time her husband rushes her to the ED, where she is diagnosed with an embolic stroke secondary to atrial fibrillation, which is secondary to self-induced thyrotoxicosis.

She gets admitted to the hospital, where she is placed on a ventilator and blood thinners. Unfortunately, her ICU stay is complicated by ventilator-associated pneumonia and a massive GI bleed. Despite reversing her anticoagulation, giving her multiple blood transfusions, and treating her with broad-spectrum antibiotics, the combination of septic shock and hypovolemic shock leads to multi-organ failure and she dies.

I know what you’re thinking: This won’t happen to me. I’m smarter than her. She must have had other problems that predisposed her to this outcome. HD exaggerates; this stuff doesn’t actually happen.

Wrong on all counts.

5. Ordering Unnecessary Tests Is A Waste Of Money

If you want to pay out-of-pocket for $1000 of unhelpful testing, then I will concede that #5 is less of an issue. However, Americans expect their medical insurance to pick up much of the tab for all blood work, so I think #5 is highly relevant.

Not only is the testing expensive, but the downstream costs can add up. The “abnormal” results will almost certainly be followed by at least one medical specialist consultation, plus followup care, plus more labs – all for something that probably shouldn’t have been investigated in the first place. Not to mention the emotional toll of thinking you have a host of medical problems, only to come to my office and learn that you’ve embarked on a fruitless wild goose chase.

Going back to the tragic story of the woman who died from complications of self-induced thyrotoxicosis, also consider the financial costs associated with ED visits and hospitalizations – the two most expensive forms of acute care in the United States. You know who winds up paying for hospitalizations that cost hundreds of thousands of dollars? You and I do, in the form of higher insurance premiums, higher deductibles, and fewer covered services.

Listen, if I decide to retile my fireplace and make a massive mess of it, who’s on the hook for having a professional come out and fix my drywall – my homeowner’s insurance? Guess again: it’s all on my tab, guys. But the woman whose pig thyroid experiment led to her demise? We all pay for that fiasco. Americans tend to be keen on the concept of individual autonomy, but given our unsustainable, escalating healthcare costs, somebody needs to step in and be the sensible parent here.

Summary

It is not lost on me that many of my readers have been struggling with symptoms that have been misdiagnosed, mistreated, or have defied diagnosis for years. In some cases, your mainstream physicians have let you down in myriad ways. Through this blog and others, you’ve learned that alternative medicine provides little more than a path to wasting your time and money. This begs the obvious question: what the heck am I supposed to do if my doctor isn’t helping me and my naturopath is selling snake oil?

If I possessed an easy answer to this question, I promise you I would have shared it years ago. It turns out that these situations are incredibly difficult and made more confusing by the fact that you do need to take matters into your own hands – to an extent. You need to check your assumptions (e.g. I’ve already tried everything) at the door and do the deep dive into your diet, exercise, sleep, relationships, stress management, and mental health. You need to abandon the (usually) irrational hope that there’s one smoking gun to explain everything and a single silver bullet that will fix it.

Will that lead you to better health? Maybe. At worst, it’s not going to hurt.

*Now that the iPhone has swipe-texting, is it as satisfying to “swipe” an angry message as to bang it out with your thumbs?

**If you are an Endocrinologist in practice or training, and you haven’t yet read Everything You Never Needed to Know About Reverse T3, you should check it out. I’ve gotten feedback from academic Endocrinologists that they love this post and make all their trainees read it.

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Image Credit: Photo by Kyle Brinker on Unsplash

48 Replies to “Top 5 Reasons Why You Shouldn’t Order Your Own Blood Tests”

  1. I am a practicing internist of about, oh, say “mid-life.” Meaning, x about 20 years…
    And the older and more experienced I get, the more afraid I am of our simple screening tests where patients DO have some average pretest probability–because I’ve seen patients die from simple colonoscopies! Your #4 is RIGHT ON.

    Every single day, we are managing benefits vs. risks. I’ve found patients have a very hard time understanding what this means. I can’t quite articulate why that is yet, or the specifics of it, but I think its related to the bias you discuss. They seem to be predisposed to see either everything as risks (“No, I don’t need any mammograms; they can cause cancer…”), or everything as benefit (“But the T3/antibiotics/prednisone/phentermine helps me…”).

    1. Candace, I know what you mean. I addressed some of what I believe is behind a lot of the misunderstanding out there in:

      Top 10 Reasons Why Smart People Are Stupid About Their Health

      Also, I think alt med fans the flames by telling your patient: “Dr. Walkley doesn’t do the kind of deep dive into your medical issues that I do.” Then alt med orders multiple pages of stuff like CMV and EBV titers, which results in a few “abnormals,” which results in the patient becoming alarmed that the great Dr. Walkley – who the patient used to trust – didn’t think to diagnose these “infections.”

      You are also right about the binary way many people look at testing/drugs/etc: “Fosamax causes your bones to be brittle and break – I would never take that.” It can be tough to educate people about the nuances of risks, benefits, and why sometimes one outweighs the other.

      1. This is spot on. I had non specific symptoms of fatigue, depression, weight gain so I ordered my own tests which showed normal tsh and slightly low free t3 so I was thinking hypothyroidism. I was tempted to order my own pig thyroid hormones online but something inside me told me not to do it becaise maybe something else was going on. Turns out my first problem was going on a keto diet long term with no supervision. I was not getting enough calories so of course my body got sluggish and my metabolism slowed! I’m also deficient in vitamin D and magnesium along with low electrolytes. I hope you write something about dangers of the keto diet.

  2. Great article once again!
    I would like to add cardiac stress testing to the list of tests that have these same concerns. I sure wouldn’t want a stroke during an unnecessary angiogram for a stress test I never should have gotten!

    I particularly liked that you suggest we take “the deep dive into your diet, exercise, sleep, relationships, stress management, and mental health. “
    Some people have insight into where they stand on this and others don’t!
    It is hard to know where one stands on this spectrum since you don’t know how other people feel and think.

  3. The amount of crap info out there is staggering. I wasted a year of my life trying the pig thyroid to lose my sanity with anxiety and see my bone weight diminish. Then I found your blog and good advice.
    It’s amazing what balanced nutrition, exercise, sleep, prayer and social time can do for your health. Once I got those ducks in a row and I eliminated my little T3 booster dose, I lost 26 pounds, gained muscle, gained bone weight and my depression is gone!
    Thank you again for sharing your knowledge. It saved my life!

    1. I wasted years of my life on pig thyroid as well! Almost 6 years of adjusting doses, highs/lows, panic attacks, heart flutters, and then ultimately my body began rejecting the medication (headaches/dizziness/elevated blood sugar as soon as I’d take even the lowest dose) and my only option was to quit cold turkey and go on T4-only medication. And let me tell you, the “come-down” from quitting cold turkey was absolutely horrible for me, I lost months of my life. I found this blog during that dark time, found a conventional endo, got on a reasonable dose of Tirosint (no more T3!) and feel so much more balanced. I am very grateful for all of your work, HD! This blog saved my life as well!

  4. Great post HD. #4 is very scary – I wonder how many people out there are on pig thyroid / T3 who don’t need to be. The stimulant effect is never mentioned on these internet groups – “you feel great” = “you found the magic fix, but you just need the exaaaaact right dose, to be changed every three weeks with repeated blood tests”.

    One funny thing about the internet quackery is that they all say “oh you can’t trust blood tests and the “normal” ranges, you have to base it on your symptoms” but then turn around and decide because the T3 is under some specific high number by 0.1 that it warrants treatment….. If I was typing on my phone I would add the emoji for ‘I don’t get it’.

    1. One funny thing about the internet quackery is that they all say “oh you can’t trust blood tests and the “normal” ranges, you have to base it on your symptoms” but then turn around and decide because the T3 is under some specific high number by 0.1 that it warrants treatment…

      Preach, Emily, preach!

      1. I honestly don’t know why I stay in the thyroid facebook group I’m in – it’s almost a guilty pleasure reading all the BS (and occasionally trying to direct people here) – but often I just get frustrated

    2. That is very scary. In that situation, would her labs have shown higher than normal T3/T4?

      Been going up on my doses for 2 years T3/T4 always stays the same- at the very low end of normal, T4 below normal, TSH in range but above 2.5. My dr (yes functional medicine) has been hoping I could get symptom relief if I could get in higher end of range with free T3/T4 but I never get there. But I guess I do have this stimulant effect of feeling better/symptom relief for a couple weeks each time.

  5. Some good points here. I think if someone is having bad luck with a doctor, it’s time to find another doctor. I’m on my 5th endocrinologist and so far I’m very happy. I wouldn’t say all of the other ones were bad, and I actually learned something from each of them (not all where local, so that’s part of why I have been through many). Why I left my previous doctor is my TSH was high (5) and she wouldn’t up my medicine. Doing much better now on a slightly higher dose and TSH 2.5. Since I’m feeling better we (current doctor) decided to stick with this current dose even though I wanted to be between 1 and 2.

    I think even if you decide to do some alternative concepts like a special diet, supplementation, etc…you should have an endocrinologist or PCP helping. Just find one that lines up with your goals. And realize they are not likely to be alternative.

  6. I always forget that anyone can get labs and medications on the friendly internet. Lots of options show up if you google it and I will not link them because I really do not want to promote it. I am surprised how much it costs. I guess that is why I do not see too many people bringing in their own labs.

    Develop a good relationship with your PCP. If you are a normal person and follow recommendations for years then come in with an odd complaint I can tell you that it will get more attention then the noncomplient person who has a handful of symptoms at each visit.
    If your PCP suggests ordering fancy thyroid testing or hormone or vitamin levels I suggest you find a new PCP. They are either incompetent or looking to make money. If you ask them too and they do so willingly without trying to suggest the healthy lifestyle advice in the post then they are too much a people pleaser to be an objective clinician.

    Great post and great information. Thank you for bringing some sanity to the internet.

    1. Great point about people-pleaser docs. With the advent of patient-satisfaction scores playing a more prominent role in physician compensation, I expect that more doctors may be tempted to treat patients as consumers – which they are not. Not to mention that it can be exhausting to fight these battles with patients when careful explanations do not dissuade them from what they think they need.

  7. I have a question I hope you won’t mind answering. After a doctor diagnoses hypo, is it important to find out if it is hashimotos or not? I really would like to know but is it important? I was first diagnosed with alopecia areata after my hair fell out of the side of my head and then after testing TSH, aslo hypothyroid. I now have good days where I feel like the old me before my daughter was born 8 years ago but I am also having down days where my symptoms come back but not as severe as they were. Is that something to talk to my doctor about or something to brush off since many days I feel normal again. I don’t want to seem crazy to my doc so I haven’t really asked for anything and have just followed her lead.

    1. Erin, as a fellow patient I think it’s important to know. Most likely it is Hashimotos if you live in the U.S or other developed nations. But 10 percent of the time it isn’t. So why not know what you are dealing with? While most doctors (including the blog writer) don’t think you can address the autoimmune issue, I think it can be addressed. So if you have high antibody counts, it’s worth considering trying to get those down. And most of the items the blog writer suggests are items that can bring them down (exercise, diet (avoiding processed foods), Nutrition, stress reduction, filtering water, better skin products, etc. Selenium can bring them down a bit, but don’t over do that one. A brazil nut a day or 100 a day of a supplement. This is a path I rather take then having more damage done and having to increase meds over time. All that being said, getting your thyroid levels correct is very important. TSH levels between 1-2.5 would be best if on T4 medication. Nutrient deficiencies can cause issues and can be common. Vitamin D especially, Iron, B12, etc.

    2. As a general rule, the treatment for primary hypothyroidism isn’t going to be significantly different if we determine that the cause is Hashimoto’s vs not. I’ve written plenty (see the Thyroid tab of this website) about the things people have tried to stop the autoimmune attack; while much of what people try isn’t harmful (better diet, exercise, etc), it mostly doesn’t affect the natural course of the antibody attack.

      1. Unless it’s something like iodine deficiency or medications causing it…not common I suppose but possible. Always be very careful with Iodine though. It’s something where too much or too little is not good. I’d imagine more studies are needed to be sure those efforts don’t affect the course of the attack. It would seem logical that lowering antibodies from 2000 to say 100 would be beneficial. However, I understand sometimes how aggressive the attack is is not related to the amount of antibodies. Which is in itself an interesting subject. I’d be interested in an endocrinologist’s take on antibodies and their relation to the well being of a patient. Other than if they are high they are high. Antibody levels have shown up in many studies and I’m sure they had a reason to do those studies.

        1. This study seems to point to what you are saying on antibodies. Any thoughts on this discussion? Sounds like they can cause damage, but not as much as the other stuff they discussed: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3271310/

          Antibodies against TPO (TPOAbs) and Tg (TgAbs) are of immunoglobulin G class, both showing high affinity for their respective antigens. Unlike TgAbs, TPOAbs can activate complement and are able to cause damage to thyroid cells due to antibody dependent cell cytotoxicity [3]. Nevertheless, there is little evidence that both antibodies have a prime role in the pathogenesis of HT and it is far more likely that both T-cell mediated cytotoxicity and activation of apoptotic pathways influence the disease outcome. However, TAbs serve as a useful marker for the diagnosis of thyroid autoimmunity. In HT, TPOAbs are present in nearly all (>90 %) patients, while TgAbs can be detected in approximately 80%

      2. Okay, thank you. for your response. I try to be healthy in general and recently even more so. My weight is normally 130 lbs but shot up to 149. I am now down to 143 but keep bouncing between 139 and 144. So I have been working out and eating healthy. Just trying to be healthy. I’ll wait and see if I get more stable and maybe ask my Doc about it next time to have to get tested and adjusted. 2.3 is where we are keeping my TSH I suppose. I am learning a lot from this website, thank you.

  8. A fellow doctor once said to me that it is easier to say to a patient that he/she has cancer, has to undergo surgery and then chemotherapy than it is to say’ at this moment, we have medical explanation for your symptoms’.
    Some people believe that you are a bad doctor if you can’t directly put one diagnosis and one treatment that will heal all their symptoms. And it’s terrible to say but after an appointment with someone with a myriad of unexplainable symptoms, dozens of previous lab results and a lot of alt med theories, I’m close to ‘adrenal fatigue’ myself. 😉

  9. You used my comment for the “inspiration” for your article, stating that it’s begging you to unpack my {implicit assumptions, outright falsehoods,” etc. Okay. Let’s go. I’m talking about doctors who only order the TSH test which can be a luck of the draw with serious consequences, depending on which reference range is recommended by the endocrinology association the doctor follows. That is why I absolutely will not see a doctor who goes only by the TSH and doesn’t order T4 and T3 tests. I’ve also ordered and paid for my own tests; there are labs that will do this. I shouldn’t have had to do so, though. They are perfectly reasonable thyroid tests for someone with hypothyroidism.
    I’m one of the 10% or so who does not have the autoimmune form.

    You state that patients can’t be objective about their health. Really? I think that some endocrinologists can’t be objective about hypothyroidism. They ignore the consequences of undertreatment, which may not appear very dramatic in the short term, but are surely just as costly to human lives and flourishing long term. How many people have been denied treatment because the upper reference range for TSH was too high? How many developed more health problems as a result?

    You make T3 out to be a stimulant and illicit, as if patients are seeking some kind of “high” instead of something that their body might need. Your speculations about the alleged “high” that it brings are way off.

    In his book, The Nature of Suffering and the Goals of Medicine, Eric Cassell discusses the way in which the scientific model deals in generalities, and while he is not recommending returning to pre-scientific medicine, he is asking to go forward. He talks about the assumption that medicine is scientific when it “lives up to the model of any scientific study of natural phenomenon–when the information on which physicians base their actions in behalf of patient meet the criteria of objective scientific facts; and it stops being scientific and becomes ‘subjective’ or even ‘sloppy’ when it bases its action on any ‘lesser’ kinds of knowledge…Science.. deals with generalities in which particular circumstances and particular moments in time have been systematically excluded. We have to ask what it is that makes a particular individual this explicit individual rather than an abstraction.” My integrative medicine doctor does just that. Because of her curiosity and compassion I am now nearly restored to the kind of health I had prior to encountering “TSH only” doctors. This is not quackery. This is medicine.

    Kathryn Price

    1. Kathryn, thank you for your comment. I don’t agree with much of what you say, but I’m glad that you feel well under the care of your current provider. I do think that we can agree that doctors should take patients’ symptoms into account when interpreting lab tests.
      As for my opinion about T3 therapy, I am actually not opposed to using T3 as an add-on to T4, which I explain in detail in T3 Or Not T3 – Exploring The Controversy.

      1. I do have to agree a bit with Kathryn on the TSH reference range and how that’s different from endocrinologist to endocrinologist. I had one endocrinologist who wouldn’t up my medicine when my TSH was 4.8 and I was having all kinds of weird symptoms. I went to a new Endo and stated I wanted to have my TSH between 1 and 2. Currently I’m at 2.48 and we decided to keep it here for a bit. I feel a ton better. I’ve been doing a lot of research lately watching endocrinologist videos who almost all say the goal should be under 2.5 for the TSH. My question is, why is the TSH range not more discussed and why do so many endocrinologists vary on it? Especially when it is the primary test used for treatment. My first GP was insistent that I needed to be at .5. This turned out to be too far the other way and thank goodness I found an endocrinologist that said I needed to dial back (lots of side affects like tremors, uncontrolled anxiety, night sweats, etc). I do believe each person as a certain “set point” TSH where they will feel good. Finding that could take time. But I think 90% of people will not feel good at the upper range of the TSH reference range (if they are currently on medication and actually have hypothyroidism).

        1. My question is, why is the TSH range not more discussed and why do so many endocrinologists vary on it?

          Fair question. It has been discussed, researched, and hotly debated in the Endocrinology world for years. The problem is that there are papers showing people feel better with a TSH in the lower half of the normal range, and there are papers showing that people feel exactly the same no matter where the TSH is within the normal range. The people who advocate for a TSH <2.5 on the internet tend to be the loudest voices, probably because it is not as passion-invoking to loudly proclaim, "Ehhh...just keep the TSH somewhere that's normal and you'll be fine."

          As an Endocrinologist, I am very sensitive to this issue, and I almost always shoot for the TSH at which my patient says she feels best. If we get there, though, and she says "I don't feel well," then things get more complicated. Usually, that means there is something else going on (sleep apnea, lack of sleep, stress, poor diet, etc). Very occasionally there is nothing else going on and we broach the idea of a trial of T3 add-on therapy.

          1. That sounds pretty reasonable. These ones i was watching were presentations by endocrinologists like this one: https://youtu.be/d805c0a_KMM

            I felt this endo was fairly reasonable in his presentation, though somewhat hard to understand his accent (I had to put on CC).

            I can say the majority of patients I speak to like it somewhere between .5 and 2. Though i did know one gal you said she felt best at 3. For me I was amazed at the difference between 5 and 2.5. And again…it probable goes back to everyone having their own set point.

      2. Thank you, HD. I am one who does seem to have a durable response to T3. I didn’t realize how exquisitely the body calibrates these hormones until mine started failing. I may never be at 100% as I was before, but I’m much closer as a result of the (sometimes lengthy) process of adjusting T4/T3 doses.

        Kathryn

  10. Actually, you don’t know my thought processes.
    These were:
    This won’t happen to me. I’m smarter than her. I won’t take prescription drugs that are not discussed with and prescribed by my physician….

  11. I can’t say you are wrong. Some of us turn to ordering our own labs because we don’t feel that we have any better alternatives.
    I don’t have health insurance, my income is too low to qualify for a tax credit in the marketplace, and in my state I also can not get Medicaid. The annual expense of a plan in the marketplace would range from $6,000 a year (just premiums) to $16,000 a year (premiums + deductible + copay up to max OOP). My gross annual income is only $16,000 a year.
    I pay cash (really go into credit card debt) for the little bit of healthcare I do get.
    Right now I am trying to figure out something that at least feel pretty serious. I’ve had worsening vision, very dry eyes, dry/bad skin, cold hands and feet, weak peeling fingernails, hair loss (including the outer third of the eyebrows), and plenty more of those pesky multi-condition symptoms. My primary physician (when I had one) did test my TSH a couple of times and said it was normal.
    I’ve recently had shortness of breath/chest pain, which I believe is anemia (verified with self-ordered labwork) that I am trying to rectify. What really has me worried is that my hands aren’t working right. Very weak and clumsy, difficulty grasping/opening packages/doing up buttons and also easily fatigued by small things like using a trigger sprayer or operating a remote control. Tough to work at anything at all much if your hands won’t work. My breathing problem hasn’t been completely helped by iron infusions and extra B vitamins, but it has improved. My hands have not gotten better.
    The labs I have done appear to suggest thyroid as a possibility, though maybe not in a straight forward way. I have read that high estrogen levels can increase TBG which binds T4 to protein so that the body can’t use it. In that case just adding thyroid hormones wouldn’t help. It seems like aspirin might.
    Is this at all likely or common for women of a certain age? My labs for the sex related hormones came in at Estradiol 354 pg/mL to Progesterone 1.1 ng/mL on day 12, Estradiol 124 pg/mL to Progesterone 7.1 ng/mL day 21, Testosterone, Free 1.4 pg/mL. Thyroid labs results TSH 1.68 miu/L, T3 Free 3.2 pg/mL. T4 Free 1.1 ng/dL, TBG 34 mcg/mL.
    As far as the hand problem specifically other possibilities seem to be carpal tunnel (but why this sudden change?), arthritis in the neck (doesn’t seem like much can be done), or other nerve compression or neurological issue. At the moment I’m thinking aspirin is worth a try.
    I recognize that you are unable to give specific advice and wouldn’t expect you to work for free. This was more me sharing why I personally have turned to getting my own lab work done and also wondering if high TBG often crops up in women in perimenopause.

    1. Katy, I hope you are able to see a doctor, soon, who can point you in the right direction. As far as TBG, which is irrelevant for the vast majority of people, it often falls in menopause due to lower estrogen levels. The only significance of the falling TBG in that case is that we sometimes see a hypothyroid woman’s levothyroxine dose requirement go down around the menopausal transition. For people with normal thyroid function, TBG is irrelevant, as the thyroid will up- or down-regulate production of thyroid hormone as needed.

  12. Interesting, interesting.

    But – question: what are the comparisons between death from medical mistakes (for which there is no ICD code, natch) and from what you are calling “alt” practitioners?

    I am an RN.

    1. I think you know full well that there are not and will never be data of that nature. Keep in mind, however, that alt med practitioners generally answer to no one – no regulatory authority or safety committee/board. The stuff they get away with is truly frightening, and I speak from years of having to mop up after them.

      1. Hi HD, my endocrinologist has also had to mop up after my alt med-leaning doctor, and I can imagine the frustration. I post in the comments here sometimes, and I just wanted to say that I am so grateful that I found your blog…I’d even say it has truly saved my life. I’m sure you get a lot of flak, as alt-med thyroid blogs are all the rage right now, but please keep doing what you are doing, it is so important especially during these times!

  13. I, for one, do not know “full well” there never will be more accurate ways to document death certificates. I sure hope there will be – we are talking about what Johns Hopkins has called the third leading cause of death, afterall – and if doctors led the way, there could be. But to proclaim self-assuredly that “there never will” be does not bode well.

    I like your blog, by the way.

    1. Thanks, Beatrice. Let me clarify what I meant when I said there would never be data. I believe that there will never be data comparing deaths due to mainstream medical errors and deaths due to the shenanigans of alt med providers. My position is cynical, but I think it represents the reality that alt med often operates in the shadows.

      A hospital-based mis-dosage of a medication by two orders of magnitude that leads to a patient’s demise will result in a formal inquiry, a report to the state medical board, and very likely a lawsuit. On the other hand, consider a patient taking 15 different supplements of unknown/untested purity – recommended by her alt med provider – who dies of complications related to an acute arrhythmia. The hospital physician who completes the death certificate may not know that the patient is taking these supplements. Or, the doctor knows but has no idea whether the supplements could have contributed to the patient’s death.

      Hence, I believe we will never have reliable data comparing these things. That’s all I’m saying.

  14. Confession – for a while, I had been meaning to check my lipase levels for a couple of reasons.

    Ever since I found request-a-test, I have self-ordered labs 2-3 times a year – for the last 2 years about. Mostly it’s all fine. There was one time before now that I had an abnormal result and didn’t know what it meant, not completely, and could not get comfortable with the result. So I (somewhat ashamed) contacted a specialist I see every other year, and she said basically don’t worry. Ok, fine, I won’t.

    I SHOULD have learned my lesson not to self-order labs that I do not understand the results of, backwards and forwards. Things like the CMP, CBC, A1c, etc. are easy for me to understand and explain. I have self-ordered a couple of others, outside that scope, like the insulin resistance panel, the LDL particle number (NMR) and since the results were fine, I was fine. I do think on those, especially the LDL P, I could have pieced the results together into a coherent explanation had they come back high. But what if the fasting insulin had come back high? Well, so much is open to interpretation on the topic of insulin anyway, and I require more experience with this test and knowledge about it, but that didn’t turn out to matter that much since the result was “good.” So, fine.

    Then, I self-ordered a lipase on myself for a couple of different reasons, which I’m happy to go into if necessary. It came back about 30 points less than three times the upper limit (ie, high but not officially acute-pancreatitis-high). I was surprised, mystified, concerned, a bit freaked, then exhausted and resigned. All at once.

    To the Internet!
    “How common is a falsely elevated lipase?” I asked my magic screen. Is it like potassium where lab error can often explain high readings, and you repeat it and it’s normal? What about macrolipasemia? Celiac (well, yes, I actually have that. So what does it mean in light of CD. High lipase is normal in controlled CD patients, nothing to see here, move on??). Pancreatitis (could my non-classic symptoms just be DIFFERENT?). Cancer (of course). “That’s it, no more self-ordered labs,” I thought.

    But, what to do now? What is the responsible next step? Bug a doctor about self-ordered labs this ONE LAST TIME, and honor my physical health while taxing his mental health? That was the option I chose. I felt I had fairly good reasons to do this test to begin with. And yet, I fully expected the result to come back normal. But it wasn’t. So using the portal, I wrote to him, apologizing. He was, as he usually is, courteous in response and indicated he would not be concerned. He also in used roundabout, diplomatic language to indicate that he should be the one to order my labs.

    So that’s where I am. I am learning the lesson not to continue to self-order labs, at the same time, the worry rash about that lipase has not completely disappeared.

    1. I really appreciate you sharing this. I can rant about this stuff all I want, but there’s nothing better than personal experience to communicate the pitfalls.

      1. Ok, but to push back a little bit – what was the pitfall here? Unnecessary worry? Bothering a busy doctor? If yes, then you are correct.

        But at the same time, a little nuance would have been appreciated! I still haven’t really resolved the elevated lipase. Why wouldn’t a doctor be concerned? I have the internet at my disposal yet I haven’t been able to figure it out. It doesn’t seem to be a test that commonly has lab errors associated with it.

        So what then? Just one of those things? I mean, not to pull a Woody Allen, but what if it really is some antibody associated with CD that has real ramifications for my pancreas and the hormones produced therein? Would you then concede I had done the right thing? I mean, an elevated lipase is not normal is it?

        Let me illustrate the bind patients feel they’re in further with a scenario of testing ordered by the doctor. During routine labwork, it’s happened FOUR different times that my potassium was elevated. The first time, I was a bit freaked. But with subsequent ones, I knew with a certainty I cannot convey that it was lab/phleb error and it was highly inconvenient for me to have to return to the lab to let a doctor off the (mental) hook. Each repeat potassium was fine. I now instruct the phlebs about my draw. It’s counter to correct procedure for people to be slapping veins and whatnot.

        Second, doctors miss shit all the time! Besides CD, I have another chronic but manageable issue that I had to figure out, with the ultimate help of doctors who are the ones doling out the diagnoses. And for Celiac, I had many repeat doctors’ appointments before it was finally figured out.

        One of the real culprits, in my opinion, is the jamming of patients into a doctor’s day. Given more time to spend with patients and to then to think about on his/her own, doctors would be much better diagnosticians.

        1. The pitfall is (presumably) unnecessary worry. I rarely order lipase levels, but my understanding of their purpose is: the evaluation of acute, severe abdominal pain with all the other signs/symptoms that point to a need to rule out pancreatitis – a life-threatening condition that will cause death if not promptly treated in a hospital.

          I don’t want to get into your clinical history in detail, but the typical outpatient should pretty much never need a lipase level. If they needed that, they’d be in the ER, at death’s door, and the ER doc would order it.

          Is it possible to have chronic, low-grade, smoldering pancreatitis? I’m not an expert in that area, but yes, I suppose it’s in the realm of possibility. But these people would still be pretty darn sick.

          My point is, nobody should go hunting for things where the pre-test probability of disease is extremely low, because any positive result is almost certainly going to be a false positive.

          Why is your lipase high? I have no idea and wouldn’t presume to guess. My point is, perhaps it would have been better to simply not have that number on a piece of paper.

  15. Hello and good morning,
    I thought I’d write to you to let you know that you have helped to open my eyes to the fallacies of Alt med. Sadly, what you describe in your blog about alt med is exactly what we have done. My wife has Graves disease and I’ve been trying to help guide her treatment, since she is too sick to do much, trouble concentrating etc. I didn’t start out trying to guide her treatment, but after going through a few quacks, I thought I needed to become more involved, although I didn’t know enough to run away from the naturopaths.

    I found your post about T3 several months ago when my wife started supplementing T3 with her Synthroid. She had RAI a year ago and is better than before but still quite sick. 

    So the not so funny thing is, your descriptions of alt med are exactly the routes we took and fervently believed. Starting with a quack chiropractor. We moved on, but were still convinced in alt med and so went from one quack to another for years! You’ll be horrified to hear this, but after a trial of NDT, her Graves got very angry and her levels got dangerously high. She was allergic to the antithyroid meds, so finally after 5 years, decided to do the RAI treatment.

    On her last visit to the endo, he said she was fine and to come back in 3 months. But she was still very sick, so we went back to the alt med practitioners once again and was prescribed a 5 mcg dose of T3 with her synthroid, with the idea of bringing down her,,,wait for it, RT3, under the assumption that RT3 inhibits T3 conversion. She had slowly raised the T3 dose to 25 mcg, but she always backslides and needs more after a few weeks. Actaully, she has the exact symptoms you describe in this article, facial droop, weakness, and trouble speaking, among other symptoms.

    So realizing this wasn’t working, I went back to your website, as well as reading more science based websites.  Eventually I came to the horrifying conclusion that I was encouraging my wife to believe this crap. Now, how was I going to un-do this fervent belief!

    During this time her practitioner wanted to test for Lyme disease because of her ongoing symptoms, while having thyroid hormones in range. The tests came back negative, but her practitioner still wanted to start her on a year long course of antibiotics! This to me, felt like a very bad idea, so I started reading everything I could find and discovered that this diagnosis and treatment was quite dangerous. Essentially she was diagnosed based off symptoms that are very similar thyroid symptoms and fairly vague at that.

    Now I had to convince my wife… And I wasn’t sure that I could. We argued for several days about it and came to a stalemate. Much of her reluctance is that she is so tired and foggy headed, that it’s hard for her to make important decision. Yesterday, I read for several hours and saved everything I thought she needed to read, to see where I was coming from. I bargained that I would clean the house and make breakfast, if she would sit down and read the 30+ science based articles I had open, including what long term antibiotics can do and all the horror stories that went along with it. Thankfully, she woke up to the same realization that I had. 

    So now we are going to make an appointment with an endo and try again. She may not get better with the endo, the last one seemed to think she was fine, even though she was very sick. But the alternative seems worse.

    Anyway, long way to say thank you for what your doing, you are making a difference.
    Very best regards,

  16. I think all doctors are threatened by the idea that the general public can order lab tests. It used to be we trusted our doctors to interpret tests for us, and in fact we did not even need to ask for copies of the results. Those days are over. We now have to keep track of all of our own health information because we have to be our biggest health advocate because doctors are “too busy to care” or they did not care in the first place.

    I wish Dr HD would comment about what his thoughts are when non-endocrinologists ACT like endos. My highly thought of DO misread my huge labs and prescribed thyroid medication because the computer put an H for High in front of my TSH, which was 5.5. He called me and said “I found it, you are hypothyroid, I’m calling in a prescription now.” Sounds pretty confident, right? I should have immediately demanded to look at the printed labs, because then I would have seen that all my free T3 and T4 and total t3 and t4 numbers were in the upper quadrants of the printed ranges. In other words, I did NOT lack for thyroid hormone at all. What I did lack for was estrogen, progesterone and testosterone and DHEA, all of those had tanked, due to menopause.

    I cannot tell you the damage that 5 days of prescription thyroid medication did to me. My 110 pound body went down to 92 pounds in less than 10 days. I could not sleep, I was running 100 miles per hour on the inside, lost my appetite, yet had to eat little tiny meals every 2 hours to just stay live. My heart felt like it too was going a million miles an hour. I was in a medically induced thyroid storm, that lasted more than a month.

    Sounds like malpractice to me! Ah, but the medical board only cares if- the patient DIES, or if the doctor has sex with the patient. There’s no recourse. I had confidence in my doctor because he said he would help you find specialists if the need came up. He was so confident, and I was so vulnerable because I felt so BAD.

    Tell me Dr HD, what would you have done? Do you even look at the womens’ hormones side of things, or is this something you don’t want to be bothered with?

    1. I think all doctors are threatened by the idea that the general public can order lab tests.

      I have to push back on this assertion. We are most definitely not threatened; rather, we want to protect you from ordering useless tests and making poor decisions based on the results of said testing.

      Tell me Dr HD, what would you have done? Do you even look at the womens’ hormones side of things, or is this something you don’t want to be bothered with?

      I can’t comment on your situation, but I can comment on “women’s hormones.” For postmenopausal women, there is usually no value in ordering “female hormone levels” because they are low – by definition – in menopause. For more, read:

      Why You Shouldn’t Care About Estrogen Dominance
      Are Bioidentical Hormones Safe?
      Salivary Testing for Bioidentical HRT: A Great Way to Waste Your Money

  17. I pursued additional testing on my own due to frustrations with lingering symptoms and T4/T3 labs historically not jiving with TSH. Good thing I did, it could have killed me. The problem? Testing interference. It may be cheaper and a quicker, but I no longer trust immunoassay testing. And I’m not the only one this is happening to, and it’s not just with thyroid hormones. The research is out there. I don’t expect the general practitioner to necessary know this stuff but I’m not sure how the 5 endocrinologists I saw missed it.

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