Now in my fourth year of blogging about the intersection of Endocrinology and quackery, the threshold for triggering my outrage meter is higher than at the beginning of this endeavor. I suppose my desensitization is a natural reaction to the research I do for my posts, which often requires me to help you ford rivers of alt med-inspired obfuscation – strewn with garbage and feces – to reach what I hope is clarity on the opposite bank.
That said, there’s still plenty of spark in my battery, which brings me to the recent stimulus that fired my action potential1.
Alicia, a podiatrist2, wrote me after receiving some mildly abnormal lab results from her primary physician. She had scheduled an appointment with a so-called functional medicine (FM) doctor to discuss the results in more detail, but then she started digging deeper into FM and developed misgivings:
I just started reading your blog and now I’m really second guessing my decision to go to a functional medicine doctor… I don’t know how to tell if they’re good or bad…and don’t know what to do.
What is Functional Medicine?
That’s an important question, but the answer will be different depending on one’s perspective. In my experience, FM is simply a marketing term – a rebranding, if you will – to make the usual approach to care favored by naturopaths and chiropractors3 appear legitimate.
The scary thing about FM is that the “field” is comprised of many healthcare professionals who hold an MD or DO degree – you know – actual doctors. Some of them, including the one Alicia ultimately saw, have even done an Integrative Medicine (IM) fellowship.
Wow, HD, a fellowship in Integrative Medicine? That sounds like a real thing… I mean, didn’t you do a fellowship in Endocrinology? Isn’t that kind of certification regulated by some sort of Medical Board?
About that…I can understand why you would perceive implied legitimacy here. While I’d be more than happy to spend a few thousand words on how Integrative Medicine came to be and what it is today, that work has already been done – comprehensively and to brilliant effect – by the good folks over at Science Based Medicine. I recommend starting with “Integrative Medicine:” A brand, not a specialty. If that introductory article piques your interest, then you can really dive down the IM rabbit hole with a huge number of posts spanning years at SBM. Here are just a few of my favorites:
- Integrative Medicine finally admits it’s attracting bad apples
- State Medical Boards should not recognize board certification in “Integrative Medicine”
- The Harm of Integrative Medicine: A Patient’s Perspective
- Functional medicine: The ultimate misnomer in the world of integrative medicine
If you don’t have the time or inclination to dig deep into IM, FM, or any of the other brands/iterations of alt med, here’s the TLDR version: IM offers the veneer of legitimacy by claiming to integrate evidence-based therapies from the alt med world into your conventional care plan. In large part, unfortunately, IM ropes in reiki, aromatherapy, acupuncture, homeopathy, and other theatrical placebos that have no solid evidence base, nor any scientifically plausible mechanism to work for the conditions they are intended to treat.
FM is a bit cagier. Ask an FM practitioner to show you the evidence for their recommendations, and they will respond that clinical trials aren’t that helpful. After all, a trial can’t account for the myriad ways in which one individual’s body will respond to a specific combination of herbals, vitamins, minerals, and medications – which, coincidentally, the FM practitioner will likely sell you from their shelf of goodies or infuse directly into your veins before you leave the office.
Alicia’s FM Experience
Alicia, a well-educated professional in the healthcare field herself, decided to go ahead with the visit to the Functional Medicine doctor, as she really wanted to explore all options. Happily for blog readers, she granted me permission to share it with you (edited for length, minor grammar, and identity protection):
When I walked in, I was warmly greeted, but immediately saw that she had advertisements for all sorts of supplements, red light therapies, a molekule air purifier, and piles of LifeExtension supplement magazines. I thought these were all red flags. But, I thought, give her the benefit of the doubt because I have yet to meet her.
When she came into the exam room, we covered my medical and social history extensively – more extensively than I have ever had. Of course, having a doc sit down with you and actually take the time to listen to your story and try to collect as much data to build a case and cause for your symptoms feels promising. It was really appreciated. Then after 45 minutes of discussion, she had me sit on the table and she listened to my heart, lungs and performed abdominal and neck palpations – all very normal for a routine checkup or new patient appointment.
Then, she immediately jumped to testing. She took the time to review all of my labs from this past year, but never really discussed them. She said that she thinks Hashimoto’s is causing some of my symptoms but not all. She’s concerned about gut dysbiosis and mold toxicity. She suggested two tests – GI-MAP and a Mycotoxin urine test.
I’d honestly probably be interested to hear what the heck is living in my gut. I’ve had stomach problems for as long as I can remember. I’ve tried elimination diets, FODMAP diets, AIP diets, gluten free, dairy free, etc and haven’t seemed to ever completely crack the code. Plus, the gut does perform a lot of important functions and gives a lot of cues to the rest of the body on how to behave.
She recommended the Mycotoxin urine test because she was concerned with my living conditions – an old, historic apartment that’s been renovated. She said it could have mold. Again, she is not saying this is the cause of the Hashimoto’s, but maybe a multifactorial rationale for my symptoms (I’ve only been on levothyroxine for 8-10 weeks and haven’t dialed my TSH or FT4 to ideal levels quite yet, so having less frequent but still noticeable symptoms would make sense to me).
After researching the urine test, I saw a release from the CDC that these urine tests are highly unreliable and take advantage of the fact that our bodies almost constantly will have some level of mycotoxin present due to the foods we eat and the air/pollutants we unavoidably breathe. This test bragged about being highly sensitive. Personally, I wouldn’t want a highly sensitive test for a highly sensitive body…I’d want a test that tells me if I’ve reached a toxic level over just some low level. I don’t know.
She then suggested Lyme testing from Igenex, stating that the Western Blot I had performed back in December might not have been sufficient because Igenex uses humans to read the test while QuestDiagnostics uses a computer system to evaluated the bands. She said that some bands that are not black or white but rather gray could be positive markers that the computer is missing. Again, I’m not quite sure I buy that. But that test is $1300, so I get it.
She then suggested the possibility of a nutritional assay. Ok.
She then suggested sauna therapy in an infrared sauna 3x/week for 15 minutes at a time, then working my way up to 30 minutes at a time to detox.
She then suggested that NDT was superior to synthetic T4 or synthetic T3.
After all of this, I told her that $800 to spend on those first two labs was a little out of my reach. I told her, “You and I were both trained to be evidence-based first and foremost. Do you have any literature behind the theories, methods, and reliability of these tests you’re recommending? I trust you as a medical provider, but this could possibly be a big investment financially and I want to make sure that I fully understand the investment I’m making in my health.” She got slightly defensive and asked me what I thought the literature was going to solve. [HD: Bolding is mine.]
We then had an uncomfortable moment when she asked me about my approach, as a podiatrist, to certain foot and ankle issues. She scoffed at my answer, suggesting that many of my patients would be better served by something akin to chiropractic manipulation.
Finally, she did give me a lab order to send to my regular doctor’s office to get them to run the labs. She requested the following: Glutathione, Total GGT, Copper, Zinc, B1, Magnesium, Iron, TIBC, Ferritin, B6, Urine Iodine, B12, FT3, FT4, rT3, TSH, hsCRP, Homocysteine, Selenium, MMP-9, TGF-b1, HNK1 (CD57) Profile.
So, all that to be said…some interesting stuff that we talked about, but a lot of red flags. I think that this really kind of rubbed me the wrong way.
How to Know if your FM/IM Doc is a Quack
When I re-read Alicia’s email, the red flags for quackery leap off the page and bat me about the face. I feel like I should simply present the email to you and then mic drop like we used to at the end of a mathematical proof in my high school AP Calculus class: QED4. But, I realize that I live and breathe this stuff, while laypeople may not have picked up on all the red flags – demonstrated by both the FM doctor and Alicia.
I’m sure you noticed that the doc is advertising products in her office, which is an obvious red flag. But did you pick up on the fact that she recommended thousands of dollars worth of testing, most of which is well-known to have either no clinical validity or unproven validity? While this isn’t news to me, what I find compelling is that Alicia – despite knowing that gut microbiome testing is a mostly unproven diagnostic measure – still seems open to the concept of testing.
This, my friends, is the kind of mindset on which alt med preys and of which it takes advantage. Alicia has had years of unresolved gut symptoms but no answers, so of course she’s open to new ideas. It makes perfect sense, and I’m not knocking her. However, the argument in favor of this unproven testing is a straw man argument: “Nothing else has led to a solution, so why not test the gut microbiome, which hasn’t yet been done?” Sure, that would make sense if we knew what to make of the test results. Unfortunately, there is no accepted, standard reference range for the number and type of various bacteria that comprise one’s gut microbiome. If you’re “low” in one strain and “high” in another, does that mean that you need raise the low one? Lower the high one? Both? Is balanced better, or is it beneficial to have greater numbers of certain types of bacteria? Is it possible to dial in “treatment” with expensive probiotic/prebiotic pills sold by the doctor, or would you have just as much luck eating more fermented foods and taking an over-the-counter probiotic/prebiotic from a reputable manufacturer?
Spoiler alert: I don’t know the answers to these questions, and neither does your FM physician. Is the gut microbiome important? Yes. Is it a fascinating new frontier that we need to research extensively? Absolutely. Is it ethical to order this test for patients and present the results as clearly indicative of a treatment plan that is going to help? Hell, no. If the FM doc really wants to sell some fancy probiotics out of her office, she can do that without the expensive gut tests.
The other concept I’d like to highlight is that a visit to an FM practitioner will typically result in a concussion from having the kitchen sink thrown at your head. Did you see the breadth of recommendations for testing and treatment? I realize that many people will view this as the doctor being thorough. I know this because I have had countless people come to my office for a “third opinion,” openly wondering why “nobody has ever checked these things before?” People get upset when they think their regular doctors have been negligent in exploring every avenue to attempt diagnosis and treatment of their health concerns. I have written entire posts about this issue, including Dear Alternative Medicine – Stop Testing! and Top 5 Reasons Why You Shouldn’t Order Your Own Blood Tests. Suffice it to say, competent physicians don’t order tests unless there is a solid evidence base for them and we know what to do with the results. Not only can we not interpret the results of nonstandard testing, but it is often expensive and billed directly to you. I’m not sure I can communicate the inadvisability of this testing any more clearly.
Ethics, or Lack Thereof
Shortly after Alicia regaled me with the details of her visit, she forwarded me an email that the FM doc sent to her patients, at the beginning of the coronavirus crisis. Read this excerpt, and see if you can spot the questionable ethics:
If you are looking to get tested for COVID-19, please contact our office so that we can assist you.
There is value in knowing if you are positive because there can be treatment measures taken… We are staying up on cutting edge research that has proven helpful for treating this virus in other countries. We will also be getting a specific herbal kit directed towards COVID-19. Please call us for further details if you would like to purchase (these have been on backorder and we are hopeful to have these ASAP, we suspect they won’t stay on the shelf long!).
Please don’t panic! All of you that are patients at [redacted] are already supporting your immune system, which is key to help fight COVID-19. Eat clean, have clean air, clean water, and a calm mind. Wash your hands frequently, with soap and warm water for at least 20 seconds. Use an alcohol based non-toxic hand sanitizer to clean your hands if soap and water are not available. In general, to support your immune system, make sure you are taking your vitamin C, vitamin A, zinc, vitamin D3 and monolaurin which are all good for immune support and addressing viruses. If you haven’t already, make an appointment for a Myer’s cocktail which has vitamin C in it and is great to fight viruses (we are also running a March special on infusions!), please call for an appointment.
Does anyone else need a shower after reading that? Look, I realize that many readers of this blog have had terrible experiences with their mainstream medical providers; that isn’t lost on me. But getting your care from a “functional medicine” doctor who preys on pandemic-induced fear to sell you placebos in the form of herbal kits and IV vitamin C – that is not a sensible alternative.
By reading this site and interacting with me and others in the Comments, you agree to abide by my Disclaimer.
Image Credit: Photo by Mpho Mojapelo on Unsplash
- Pretty sure I’ve drained multiple metaphor-cows of every last drop of milk! [↩]
- Not her real name or profession. [↩]
- I’m referring only to chiropractors who foray outside their realm of training in musculoskeletal manipulation. [↩]
- Quad Erat Demonstrandum, roughly translated as “thus it has been proven.” [↩]
38 Replies to “The Dysfunction of Functional Medicine”
Interesting you should note the high dose of IV Vitamin C. My sister said her naturopath was giving it to her and she felt better on it. I told her I didn’t think there was any scientific evidence for that and she said I was wrong and that if there wasn’t they wouldn’t give it to cancer patients.
I looked it up and it turns out it is promoted even on the cancer.gov web site.
I was wondering what your take on it was.
My previous impression of high-dose vitamin C for cancer is summed up well in this 2014 article on SBM: https://sciencebasedmedicine.org/the-return-of-the-revenge-of-high-dose-vitamin-c-for-cancer/
According to the more recent article you linked to, the authors conclude with language that, to my ear, should temper most people’s enthusiasm. Vit C for cancer sounds like something that shows some type of promise in combination with standard therapy. But I can see how an alt med enthusiast would extrapolate the findings inappropriately, and use that article to justify an infusion “to feel better:”
Thank you for taking time to respond – as always, I love reading your blog and seeing what you have to say.
Quackery exists in every facet of healthcare. Many great functional docs were once western docs that got so fed up with the US system of “health care” that in order to help patients they had to go another route. HD I’m not sure if you are in the US; sometimes I think the UK based on what you say, sometimes the US…?? Anyway, basically, our US health care system is completely broken. I think the gap functional med doctors often bridge, is they at least TRY, they actually LISTEN for more than the average 15 minute, $500+ appointment slot you get with western docs here in the US.
Yes, often functionals will try to coax you with needless supplements and silly tests but they also often recommend valuable lifestyle changes and other options vs. needless surgeries and scripting pharma pills for which many western docs are “bonus-a-fied” for doing. For the record, GI Map is actually a great, accurate, affordable GI test! After losing my colon to “colitis”…zero, nada, ziltch western gastros would even test my gut for anything other that the “ten most common pathogens possible in American citizens” (eye roll). They did NOTHING to help me figure out what was really going on…but they were happy to put me on the latest and greatest “MAB” immune modulator at 5K a month (out of pocket cost with no insurance to help) which I actually did try to no avail. GI Map revealed a pathogen probably contracted from living overseas. It is now cleared from dosing REAL antibiotics (LOL) that a functional doc scripted (not herbs and magical tinctures ;).
My point is, there IS value in looking outside of the western medical box! Listening only to western docs would have made me sicker 🙁 What are we patients to do when we are constantly failed by the system? We need to, we are FORCED to, look elsewhere to regain our vitality and avoid medical bankruptcy.
I can imagine how frustrating it is for you in the western endocrine doc world to constantly deal with hormone quackery as there’s a lot of it in the functional world for sure but I think that you have to give functional docs cred for at least trying to find answers where western trained docs did not. There are sh*t doctors in all veins of medicine…and there are also great docs in all veins of medicine.
Also, please consider, it’s different for you, you are a doctor whom appears to be healthy whom has probably never been to a functional doc based on your opinion of them. Usually, as patients, we are ill…we are seeing you because we don’t feel well. Here in the US, we often have to wander other paths to find affordable, better options. KNOWLEDGE is power and whether you get that from ANY kind of doc, you still (as a patient) need to research, to know your body first and foremost, to gather facts, DIG deeper, read medical trial reports, know your sh*t so you can take control of your health on your own; no doc, western or otherwise will do that for you!
BUT…we do (I DO) appreciate the science (fact) based information you provide 🙂 (hearts and flowers!!!)
Cor, I definitely understand where you’re coming from, but I must push back on several of your points.
That statement is misleading. Are there crap doctors in all facets of mainstream medicine? Yes. Are the majority of doctors in mainstream medicine crap? No, I don’t think so. Are the majority of the doctors who are crap crap because they’re selling snake oil; or are they crap because they lack the knowledge, time, people skills, and/or critical thinking skills to treat people well? I believe it’s the latter. When you say there’s quackery everywhere, it implies equivalent risk between getting your care from an FM doctor versus getting your care from a mainstream doctor. The risk is most definitely not equivalent, in my experience. I have not come across a single FM doc yet who delivers what I consider to be high quality, cost-effective care. The one thing they may do well is listen, as they do often have much longer appointment times. You know how they can afford to offer such long appointment times? In part, they make up the deficit by selling you all sorts of worthless supplements out of their office.
So how is the average layperson supposed to know what recommendations are needless and which tests are silly? Sure, the FM doc may recommend valuable lifestyle changes; that’s great. I agree that mainstream medicine has done a generally poor job of educating people about appropriate lifestyle modifications, so alt med has swooped in to claim that territory. But no, Cor, doctors do not receive bonuses for prescribing pills. And as for GI Map, there is no need to order that test on someone suspected of having a pathogen that would be amenable to an antibiotic cure. A simple stool NAAT (nucleic acid amplification test) panel (a much more modern and sensitive test than stool culture) could detect that. While I don’t know how much GI Map costs, it gives a ridiculous amount of superfluous information, so I am guessing it’s pricier than a stool NAAT.
No, I do not. The FM docs I’ve come into contact with try to “find answers” by blasting you with a bazooka of every possible test and therapy in their armamentarium, regardless of your presenting problem. That is not cost effective, nor is it likely to find any treatment that will provide a durable response. Rather, their patients will have temporary, placebo effects from whatever is the treatment du jour, which then wane over a few months.
Anyway, I appreciate that people want answers, but I cannot advocate going to anyone in the realm of alt med for those answers.
HD – Your reply to Cor is respectful and courteous . I think about these topics almost every day as I am still a full time primary care doc after 34 years of practice.
And PRACTICE is an important word . No one masters medicine – it is too hard. I believe that many patients think doctors make money on meds they prescribe or tests they order. Ironically, it is the opposite . The more tests I order the less money I am making – it takes me more time to explain this or that abnormal value .
Thanks for taking the time to do your blog – I recommended it just today to a very pleasant and intelligent patient that has health ideas that are … well contrary to many that I hold from experience. But I have confidence she might use her smarts and with some good explanations we can change her mind a bit.
Mike McEvoy MD
I agree with you Cor about quackery in every facet of healthcare.
Conventional docs wanted to perform a hysterectomy on my mom because she would not stop bleeding due to menopause. She went to an alternative practicioner who gave her herbs that stopped the bleeding.
Her conventional doctor was surprised that the bleeding stopped and confirmed she no longer required the hysterectomy.
It is absolute quackery (lightly put) to remove an organ when something simple like herbs can fix the problem.
My personal bellwether is if ANY doc tries to sell me supplements not available on Amazon or lab tests not available in a govt hospital at reasonable cost. It boils down to profit. Avoid the greedy docs (of all stripes) and find a doc with the right chemistry for you.
Interesting post that tracks my wife’s experience with Alt med. She’s seen 6-8 different alt docs. I believe that many of them were disingenuous and are con artists. And some are not, they’re true believers. I think some of them should have said the obvious, which is they can’t treat hyperthyroidism! They acted as if her condition was a great puzzle to solve, when a few basic tests told the whole story. And they don’t have a treatment for this that will work. We brought the previous blood work to appointments. We asked every practitioner if they had treated thyroid dysfunction and what was their success rate was. Several said 100%,… wait for it. If they stay with the treatment. I found it interesting that more than one claimed 100% success. My wife did not find success with any of these practitioners. Just 10’s of thousands of dollars in appointments and supplements.
We did wise up to this eventually and went back to an endo. But it was very rushed and usually his answer was let’s wait and see and make an appointment for 3 months later. (same as her first endo) This while my wife is very sick, can’t stand or walk very much, panic attacks and all the rest, completely dysfunctional and desperate for help! Let’s wait and see…. This is why people seek out help! Maybe misguided, but what is a person to do?
I’ve heard many things from her current endo that I don’t believe to be true and some that were flat out wrong. Like when recommending RAI. He said, just take a little pill and it’ll all be over. Hardly! We knew this wasn’t true at the time and it’s become a running joke to this day. I guess he was trying to persuade us on the treatment, but we had tried everything else at this point and RAI was her last resort, which is why we were there. It’s now been 1 year and 3 months since her RAI…
On the other hand, I think this endo is very knowledgeable and probably over worked. Experts are wrong about things all the time, even when they know better. I see it everywhere in the building trades. I don’t fully believe what anyone has to say at this point, until I understand it for myself, and even then, I could misunderstand what I think I know. The medical world is a dangerous and mysterious place and we proceed very cautiously these days. My wife is still recovering and not quite there yet, even with conventional medicine. But she’s closer than before!
For those looking to save themselves time and $, here is my standard alt med checklist:
1. Hypothyroid despite normal labs. Must start with the “full panel” and make sure that you are within tight optimal ranges
2. Adrenal Fatigue
3. Genetic screening for MTHFR
4. GI Mapping and/or testing for micronutrient deficiencies
5. Mold toxicity testing (genetic screening and some online vision test??)
6. Urine hormone testing and then optimizing hormones with pellets
The testing for all of the above come with pretty impressive looking graphs, a high price tag (and most likely not covered by insurance), and a treatment plan consisting of expensive supplements that happen to be sold in office. One must keep taking them for them to be effective. However, since the provider spent more than 20 minutes with the patient, worked to find the “root cause” of their issues, and eschews prescription meds and academic studies, b/c “big pharma,” they feel better about taking unregulated supplements w/out a robust body of evidence backing them up.
I could not possibly have said it any better.
We as hashimoto’s patients are easy prey for shady functional medicine doctors. None of the ones I went to were good. The first one I went to was very similar (actually much worse) than your friend’s above. The second wasn’t as bad, but still didn’t seem very good. The third was better than the other two (and much better than the above one), but still not great. She sold her own supplements and they didn’t work well for me. However, she was really low cost and only gave a few supplements at a time. And didn’t push testing. Anyways that’s the last ones I went to. However, I’m sure there are good ones out there that focus on diet, exercise, sleep, stress reduction (important things to work on).
All that being said, I do think many endocrinologists do not dig deep enough. Hashimotos is more complex than it’s given credit. I think there is room to be somewhere in the middle of the (just take a pill and you will be fine) and the extreme testing, 30 supplements a day, foot baths. It took me 5 endocrinologists to find one that was personable. That does appear to be a common theme from what I have seen. So there is certainly some work needed on the endo side of things.
I know for me personally, diet has played a role. Meditation and deep breathing has been another key (stress reduction). Dealing with trauma and stress in general very important. Focusing on balanced nutrition and eating enough food every day another key. And getting my TSH below 2.5 yet another key. And I had to change endocrinologists to get that last one accomplished.
I really hate that quacks have turned the word “support” into a red flag.
Well I will make sure that I go by Family Physician rather then Family Medicine from now on. I would really hate to give the wrong impression :p
I cannot believe how much I agree with your posts. But they give me so much angst while reading them. Real catch 22. I imagine you must be a very patient and caring physician. Keep up the good work!
Thank you for finding these gems!
Thanks. Some days I do better than others…
Do you feel like you have changed a bit since writing your blog? I have seen a bit more empathy over the years of your posts and comments. One thing I think would surprise people without hypothyroidism, is what it feels like with it. Ok, that’s not a very profound statement…but it really is a weird thing to experience and goes well beyond what most people likely think. This post is a good example of what the thyroid patient has to go through. Because they can’t get things figured out with normal treatment, they search for possible help through alternative treatments. This is so common, it’s pretty clear something is wrong for treating a good amount of people. I believe that’s because it’s more complex then it’s given credit.
Oh, absolutely. When I first conceptualized the blog, I intended to be the educator, dispensing wisdom to those who have been misinformed by alt med. I never expected to learn so much from my readers, which has definitely increased my empathy. While I continue to believe that people have massive blind spots and can be their own worst enemy when it comes to managing their health, I have significantly more empathy when confronted (by my readers) with how they have gotten to where they are.
At this point in my blogging “career,” I reserve the majority of my scorn for purveyors of quackery, and I try to be much more understanding and patient with the victims of quackery. In real life, however, it’s still very tough to counsel people who come in to my office toting their pages of “abnormal” but meaningless labs from their naturopaths. I have a limited amount of time with them, and I have to waste so much of it waiting for them to finish regaling me with details of their medical workup to date, most of which is completely worthless.
For example, I had several visits this week for “abnormal cortisol levels,” which I never would have ordered in the first place, because my clinical suspicion for cortisol excess or deficiency was fairly close to zero. But, either the naturopath decided to order it, or the patient demanded it from the naturopath, and then these folks wound up in my exam room. When it’s a new patient consult appointment, I have more time to listen to the whole story and try to figure out if there is any other avenue for me to pursue for their symptoms, knowing that the cortisol issue is a non-issue. But the “followup” patient who comes in for one thing and then tells me halfway through: “Oh, by the way, I got all these labs from my naturopath…” is hard to manage. If I tell them too quickly that the testing they had is worthless, they feel dismissed. But if I let them go on about their “fight or flight” response being “activated all the time” and their anxiety, etc, the end result is: their appointment runs way over time, I tell them the testing was worthless and this isn’t at all suggestive of a cortisol problem, and they want to know “then what is it?” And, of course, I can’t answer this question to their satisfaction, because there’s almost never a quantifiable, hormonal diagnosis in these cases.
Just as this situation is frustrating for the patient, I hope you can also see how challenging it is for the Endocrinologist, who has been set up for failure by the naturopath. The naturopath ordered a bunch of non-indicated labs, which resulted in numbers on paper, with all the implied significance that comes with that official-looking report. The patient may even have done some internet “research,” gotten even more invested in the diagnosis of a cortisol problem (for example), and come to me for my expert opinion regarding how to fix it. So now, I have to essentially tell the person: your naturopath doesn’t understand endocrinology, you read the wrong stuff on the internet, your testing doesn’t mean what you think it means, and I have nothing to offer you other than to say that “feeling like your adrenals are working overtime” is probably more of a brain chemistry issue than an adrenal issue, and I don’t know much about treating anxiety and depression.
Professionally, that is extremely unsatisfying, especially when I have to get all this done in such a short period of time, that I’m not sure I was able to finesse my delivery enough to make the patient feel heard and not dismissed. If they don’t feel heard by me, then why would they trust anything I’ve said? I hate that alt med medicalizes symptoms of life and then drops their victims in my lap to undo their damage. It’s not fair to patients, nor does it enhance my job satisfaction. Rant over.
Good points and I can imagine it’s not going to get any easier. I was happy that my endocrinologist was upfront with me that her approach for Hashimoto’s and Hypothyroidism was evidence based. She made it clear she was not into alternative treatments and she follows the ATA. She made it clear she would not order NDT, but was open to adding T3. She could tell I had dabbled in that with some of my lab results. Of course it would have helped if I found your blog before that visit, as I would have known to leave out most of that stuff. I think if someone is going to see both types, they need to understand that Endocrinologists are not going to act like a naturopath and vice versa. And maybe that’s the important part of this. Maybe letting them know that those types of tests should stay with the Naturopath (unless something was seriously wrong). Of course anxiety and depression do have relation to thyroid hormone amounts. Initially when I started on Levo my anxiety went through the roof, way more than I have ever experienced in my life. My PCP wouldn’t lower my dose, but the Endocrinologist he referred me to quickly lowered it and the anxiety went back down. So I think in conclusion, as an Endocrinologist, what is the best way to handle patients that dabble in alternative medicine? That is something that I think should be taught and studied a bit. I do think my current endo’s approach was sound. At the least you knew what to expect. I believe a lot of people are like me and didn’t know the online stuff was alternative and completely different approaches from Endocrinologists. Are there any evidence based facebook groups for Endocrinologists and Hashimoto’s patients? That’s an area that could have some real impact.
In theory, Mike, that sounds good. In my experience, however, it doesn’t work well. I can’t co-manage a patient’s endocrine issues with a naturopath, as the naturopath often wants to tinker with things that should be left alone and test things that shouldn’t be tested. If I tell the patient that anything they do with the naturopath should stay with the naturopath, then it sets up a situation in which I have to decide how much of the naturopath’s treatment plan I need to dismantle and revamp at any one visit. The only way this has ever worked is when I see the patient for something like a thyroid nodule, and they make it clear that the naturopath is managing their hypothyroidism. At that point, I can more or less ignore all the labs, as my job is very focused – unless the patient is clearly thyrotoxic on the NDT the naturopath prescribed. In summary, co-managing a patient with an alt med provider is like chasing a destructive toddler around the house – the kid is knocking things off of shelves and messing up the throw pillows, while I frantically try to restore order in his wake. The main difference is that you can’t fire your kid.
Yes, this should be taught, as it is a difficult skill to perfect. I attempted to teach this during my talk at a national conference of Endocrinologists last year, and I think it needs to be presented regularly to those in my profession. We cannot simply say “my way is better” and expect people to fire their naturopaths and listen to us – it’s way more complicated than that.
I really enjoyed reading this post, and it’s been a wake up call for me. I’ve been planning on dumping my “functional medicine doctor” for a while now since I’ve found this blog.
He isn’t nearly as bad as the one in Alicia’s story….he does push supplements but no wacky tests, mostly just diet changes (but then you can’t eat for your thyroid as I’ve learnt here…) and he is open to T3 therapy but not NDT.
Late March he reduced my T4 by 50mcg while keeping the dose of “slow release” T3 the same….my TSH shot up to 11 which explains the lethargy that has crept in over the past few weeks.
Upon seeing my blood test results he has suggested doubling the T3 for two weeks as a trial….I think that’s the final straw.
Hmm. US or UK (or somewhere else) is an interesting question, as I’ve heard a lot of bad stuff about FM from America, but had a great experience with a (UK) NHS FM doctor who I was referred to by my GP.
I’m chronically ill and have longstanding major depression, generalised anxiety and PTSD. I was in the mudst of a year-long odyssey with the benefits system which was causing me very severe stress (lost disability benefit, resulting in not being able to afford healthy food and severe exacerbation of my mental health problems). I had lost a lot of weight, my insomnia/hypersomnia (I get both) were ridiculous, my fatigue and pain levels were much worse, I felt very weak, and I had started running out of breath after climbing 1 flight of stairs (slowly). In addition, over aboutv1.5 months I had norovirus, influenza and 3 colds, and had my first bout with shingles. My immune system has never been great, but damn. I’d started taking iron, as I get anaemic from time to time, but after several weaks there was no difference. Friend dragged me to the GP. GP tested iron, Vit D and thyroid, recommended a meds check w/ MH services (been waiting for months) and recommended that I see the new FM doc in the surgery.
She was great. She went through my medical and MH history efficiently; explored my (rather exciting) history of infectious illnesses; raised an eyebrow at the number of prescription meds I was on; asked about recent stressors (and validated my feelings about them!); checked the labs (thyroid fine, iron low, Vit D very low); explored my diet, routine and social life; and physically examined me. It took about an hour, which is way more than the usual 10 min.
I felt listened to, heard, and cared for (my GP is great, but always v. rushed). She also:
– Asked my GP to poke MH services about the med review and talked to me about her and my concerns
– Suggested future referral to immunology
– Advised more oily fish, dark greens and nuts
– Prescribed course of supplements (vit D, folic acid).
– Ordered labs for magnesium and a few other vits/minerals (magnesium was very low and she called to advise on cheap supplements to buy at pharmacy) – Asked about MH support and wrote to my counsellor
– Suggested CBT book on insomnia
– Showed me very simple exercises to begin strengthening my (deconditioned) core
– Sent a referral for physio.
That was more care than I’ve had in several years. It also really helped. I’m sure that was partly placebo due to feeling cared for, but I did improve my diet, slowly. My vit and mineral levels improved (supplements down to occasional maintenance levels), my fatigue and breathlessnesd improved a lot, and my pain a little. My core strength improved slowly, as did my mental state (noticeably in the next couple of months, but only to a reasonable level when I got my benefits back).
Sleep still borked, alas. Was still waiting on physio, med review and immunology when Covid blew up the world.
I paid nothing except to buy the magnesium supplements (£25?), and not from her.
So is FM different in the UK? Was it just her? Who knows? The surgery laid her off a couple months later innfavour of another GP, as the surgery got more patients.
Sorry about the typos (on phone). And the length.
I think FM docs are a very mixed bag, just like all docs. We tend not to see their needs, just our own.
You were lucky to get a tender, caring and knowledgeable doc.
Here in Thailand, we have only one FMD. He owns his own small hospital and has many overseas patients. While he knew what I was talking about, I didn’t feel any love. On the way out, problems not solved, he tried to sell me supplements at double-price.
I’d try another, if there were one but, for me, it’s all out-of-pocket which limits my options.
Wishing you good health.
Anti-ageing/functional doctors exist in Europe as well. There are several ones trained at “Dr. Hertoghe´s Hormone Academy” in Belgium (Dr. Hertoghe is Thierry Hertoghe MD, author of “The hormone solution”).
These doctors all have the same approach:
– all hypothyroid patients should take T3 in addition to T4, and most of them prefer NDT to synthetic drugs as NDT is said to be more natural and therefore easier for the body to absorb and use. NDT is not covered by health insurance and very expensive;
– all women over 40 need estrogen and all men over 40 testosterone;
– all persons over 35 should consider adding human growth hormone to slow down ageing; this is not covered by health insurance and the minimum cost is 500 euro/month;
– everyone over 40 needs DHEA and pregnenolone;
– most hypothyroid patients also suffer from adrenal fatigue and need to take HC or prednisolone for that, often permanently.
I could go on for ever.
I went to see such a doctor and ended up with symptoms that I did not understand. Although on NDT for my Hashimoto´s, I gained weight and ended up with borderline diabetes 2. I then read about estrogen dominance and weaned off estrogen which I had taken along with progesterone. The reason I suspected estrogen dominance was because my SHBG levels went from 65 to over 100 on HRT and should not be >75. When I mentioned this possibility to my doctor, I was offered testosterone as a way to balance E and P levels…that´s when I decided to go off the hormones altogether. Also, I later found out that DHEA and pregnenolone convert to other sex hormones but you have no way of knowing which ones or in which quantities…so you can easily end up overmedicated.
I will need thyroid hormone replacement for the rest of my life because of my Hashimoto´s, but adding prednisolone to NDT did nothing for me weight-wise or otherwise. The sex hormones that were supposed to make me feel better after 40 ended up making things a lot worse. I have now weaned off all drugs except levothyroxine (which I found another doctor to prescribe) and I feel a lot better without this hormone cocktail. To be honest, it felt like I was poisoned by this doctor whom, due to the geographical distance, I only saw once a year, and who kept increasing the dosages and adding new hormones to deal with the side effects of the ones I was already on…a truly vicious circle…not to mention an expensive one…!
My impression is that those doctors take advantage of the fact that many thyroid patients feel ignored and dismissed by their doctors. Many are desperate to lose weight and are told it will be easier once on NDT and once your “adrenal fatigue” has been cured which will enable your body to use thyroid hormone properly. You are constantly told you need to add hormones to fight off signs of normal ageing. I have come to believe some patients can become dependant on hormones, and those doctors only make matters worse.
I never tried HGH though, for cost reasons and because the side effects sounded scary to me. For which I am very grateful today. It took several months to wean off all those hormones which I now believe were unwarranted. The prednisolone definitely shut down my own adrenal glands although I was told this would not happen with “physiological doses”. It took months before I felt better once I had weaned myself off the prednisolone, and I was “only” taking 5 mg daily…
True, sex hormone levels decline with age, but that does not mean we should replace them to reach youthful levels. Why would a 60-year-old want the estrogen or testosterone levels of a 20-year-old…?!
Thanks so much for sharing your experience. Sadly, I see this play out in the same way here, quite regularly.
Where you been HD? I think the above story is a good lesson in how messing with hormones is something to be very careful with. Of course those of us with hypothyroidism need to do something, but even with that it can be a bit difficult to get right. And I do know both doctors and endocrinologists are not perfect on this one. Based on my own experience and seeing the comments of many other folks. I don’t think people who have not had hashimotos and hypothyroidism truly understand what it’s like to not be in the sweet spot needed to feel normal. At least for me it appears to be a very narrow window and it’s taken a long time for my body to get used to that window. Doing better though, but my Endocrinologist is moving somewhere else. I may ask her if I can stay with her wherever she is heading. Let me know if you need ideas for new topics. I can try and think up a few which would be interesting.
Mike, I suspect you’re right that people without hypothyroidism don’t fully appreciate how important it is for some folks to be in that sweet spot.
Feel free to email me some topics that you find controversial or simply haven’t had enough treatment in the blogosphere.
I haven’t written much this past year, for a variety of reasons. But if I stumble across a topic that gets me fired up and/or piques my intellectual curiosity, I will write again.
I thought of one that maybe interesting to discuss. The proliferation of online forums with thyroid patients in them. Especially Facebook groups. I was on a few of these over the years, but I got too stressed out dealing with all the craziness. It was just too much for me to take after awhile. And that’s not to say they are not always helpful. However, I will say they are 80% alternative and 20% a mix of conventional and semi-alterative. The 20% groups are somewhat interesting and probably better than the hardcore alternative ones. Those can be a bit exhausting with the mixed opinions on every topic. There are many groups with 80K+ members, which is a sign to me that people are not getting great care and are looking into alternative help. On one hand I have seen people get help and get better. For example, often nutritional deficiencies are not looked into with doctors (Vitamin D, Iron, B12 are some common problems for hashimotos patients). Also, people are usually under treated and doctors are ok being “in the range” on TSH as such. But as a thyroid patient, having a 4.5 TSH is a recipe for a lot of symptoms (almost all patients I’ve talked to seem to agree on that one). Many patients feel dismissed of their symptoms and find some hope on these forums. However, as you have discussed in the past, there can be dangerous advice also. I’ve seen that over and over. I’ve seen people subscribed 30 supplements at a time and strange doses of them (even high doses of Iodine). Functional doctors charging $5000 for 6 months of treatment. And sometimes people on these forums defend those situations. I do think there are some doctors that can help, and if they are trained MDs who search deeper than most doctors (from what I’ve seen), this could be life changing. So I have very mixed opinions of these groups. Overall I’m not impressed on the whole. I’d love to see a group that had a mix of conventional doctors and some functional input. I tried to seek out endocrinologist groups but they were not many of them. The ones I was on seemed pretty mainstream on the thyroid stuff. I challenged some of the items when I felt they were not providing good advice. And mostly they were receptive to some of those. Anyways, something that could be interesting to discuss. I know you have covered a lot on alternative stuff, but I don’t recall seeing anything talking about the proliferation of large Facebook groups which tend to be very alternative.
The FB group thing is interesting. As someone who spends 0 time on FB, I have no real experience, but I think it would be interesting to see a pre/post survey of people who spend 6-12 months in one of these groups. Do they have lasting, tangible benefits from their participation in one of these groups? Or do they tend to leave just as – or more – frustrated than before they started?
A suggestion for a topic and just because I’d like to hear more about it, is fine tuning a T4 dose. My wife , who has Graves and is now recovered, couldn’t get the correct dose because it was given in 12 mcg changes. We finally started adjusting the dosage ourselves based on tests. It took a while, but on her last dose change by 1 mcg took her from the top of the range to the middle and she’s been great ever since. Of course, this dosage was done by averaging the doses. So for her 88mcg x 3 and 100mcg x 1.
Hopefully there’s not some pitfall we’re not aware of, but it’s been over 6 months and she’s gotten her life back after 5 years of sickness and alt quacks, some of which were MD’s. Your blog is what snapped me and then her back to reality. As well as her not getting better under their treatments.
I like your suggestion Arthur. Dialing in the T4 only treatment can be difficult and probably depends on the person (and how much thyroid function remains). The sweet spot can be tricky. So, I’ve always felt going by symptoms in addition to test results is a good way (especially if you are pretty sure it’s the thyroid). I feel like it’s worth trying to get T4 dialed in before attempting combination therapy. What I think may complicate matters is when you are hypothyroid, your body isn’t working optimally and thus other parts of you are having issues (making things worse). But once you find the sweet spot your body functions start working again (at least mostly). Go too far the other way and it causes a whole host of other issues. Again, symptoms can give you a clue here too. I had all the hyper systems initially and my doctor wouldn’t lower my dose. Luckily he was willing to send me to an Endo who quickly lowered my dose after seeing I was shaking in my hands, crazy anxiety, night sweats, etc. Same stuff you see as a side effect on the T4 websites.
I think A LOT of patients are saying I told you so here. But this is very interesting. Especially because it was presented at Endo 2021. I haven’t read the study yet, but I can tell you what’s been written up in the news articles I’ve heard over and over again. So maybe it should get A LOT more research and consideration.
From the article and lines up with what I have seen over the past 3 years talking to different patients: “Among the study participants, 45 percent reportedly preferred DTE over the other two treatments, 32 percent preferred the levothyroxine-liothyronine combination, and 23 percent preferred levothyroxine alone. Patients were more likely to prefer combination therapy if they had Hashimoto’s disease, an autoimmune disease that is the most common cause of hypothyroidism in the U.S.”
Mike, as you have done before, you got my creative juices flowing with one of your comments. Here’s my response to your comment in the form of a full-length post: Pig Thyroid is Best?
HD, I could give some limited insight, as I was very active with one of the largest facebook groups and many others as well. With the big one, I was banned after questioning some advice that was given. Apparently that’s why everyone is so enthusiastic. They don’t tolerate dissent. Really they’re very cult like.
It was a real eye opener, really. This poor women who had been advised to take large amounts of T3 had been diagnosed with osteoporosis and was asking if it was from the T3. I said their are studies that show a correlation. The moderator deleted my comment, but the OP had also responded with another question to me. So I said apparently this group isn’t into an open exchange of idea, but that she should look into what I said more carefully. That was also deleted with a comment about me not knowing what I was talking about and something about people like me didn’t believe and they had 10’s of thousand of patient reported case studies to show their success.
So I asked why those studies weren’t available to review? As well as, “studies” of random facebook posters was silly if you don’t know the specifics of their condition and that they were being irresponsible and possibly harmful to people. I also suggested that maybe they have millions of followers is because people aren’t getting well with their protocol. Btw, they have a very detailed protocol listed out on many web pages. If curious look up STTM
What a sad – but not at all surprising – experience. It can be very difficult to reach people who have been programmed by their cult, as deviation from the party line is not tolerated, as you discovered.
Authur, I was also banned from one of those groups (probably the same one).
Ha, I’m not surprised! It really didn’t take much, I always speak respectfully, they just didn’t want some things questioned.