The test of a first-rate intelligence is the ability to hold two opposed ideas in the mind at the same time, and still retain the ability to function.” – F. Scott Fitzgerald
Using thyroid hormones , while giving me initial relief, eventually caused me to have more problems than it fixed. They caused wild pendulum swings in my metabolism and neurotransmitter levels pushing me from chronic fatigue into hyperthyroid depression and hyperadrenergic POTS.
The thyroid wars are in full swing. Let’s take a quick overview at how thyroid hormone is currently being used to treat a wide spectrum of different conditions.
Synthetic thyroxine: The conventional medicine approach.
This is the conservative, tried and true approach that traditional medicine and 99% of the world’s endocrinologists follow to the tee. My impression from medical school was that there is no organ more simple than thyroid gland, and no condition that’s more simple to treat than hypothyroidism. All you do is check TSH which stands for Thyroid Stimulating hormone. If it’s high, that means that thyroid is struggling to produce enough thyroid hormone. If people have symptoms that are consistent with hypothyroidism, of if their thyroid hormone is low, they get a prescription for a synthetic thyroxine (also known at T4). The body will convert levothyroxine as needed to the more active form called tri-iodothyronine or T3 (T3 is about 3-4 times more active than T4). Easy peasy problem solved. During my years of traditional internal medicine practice, I have checked TSH hormone numerous times, and I have started many people on thyroxine. I don’t really remember anyone who complained, and also nobody who really noticed a big different, at least not in the short term that I followed them (as most of my practice was as a hospitalist). It seems that the vast majority of the world is quite on par with this treatment approach. It wasn’t until I developed ME/CFS that I learned that while it was most of the world, it wasn’t all of the world. Which brings us to another group.
2. The Natural Desiccated Thyroid and the Fringe Radical Movements.
These were hypothyroid patients who did not do well on levothyroxine. They discovered that in order to feel well they needed the old fashioned natural thyroid extract also known as desiccated thyroid which is a 1:4 mix of T3:T4 as well as whatever else happens to be in thyroid gland (or by brand names which include Armour thyroid, Naturethroid or Westhroid). This medication largely fell out of favor after levothyroxine was invented. While it is true that pharma industry probably played its part in that while the patent was still hot, there was also a solid scientific rationale to that.
I remember that during my training, my residency director – who was old and probably prescribed his fair share of desiccated thyroid during his early days – threatened that he will fail anyone who will prescribe Armour thyroid under his watch. If the patient were to come in on Armour, we were instructed to discharge them on the corresponding dose of levothyroxine, despite the patient’s protests. “It’s the worst drug ever” claimed my attending. His reasoning was that it didn’t produce predictable and reliable levels of thyroid hormone. Being a logical man of science, he could not comprehend why some people – usually women – were so desperately clinging to their Armour and insisting that it made them feel much better than levothyroxine. The only explanation he could come up with was that they were brainwashed and hysterical. (Sadly, this is the kind of black and white reasoning that’s common in conventional medicine).
Do not seek the truth, only cease to cherish your opinions. (Zen proverb)
This is what I was taught and this is what I believed and practiced. During my short stint as primary care doctor back in 2010, I gave a talk on fatigue in the hospital where I worked. Because I presented myself as someone who was knowledgeable and compassionate to the issue, as a result, I’ve attracted a few patients who were taking natural desiccated thyroid. As these women – who did not strike me at all as brainwashed or hysterical but rather smart and knowledgeable I realized that the “one shoe fits all” approach that I was taught in residency (which everyone is taught in residency) may not have been the right one. I realized that they were going to great length to find both the right dose that worked for them and a rare physician who would be willing to prescribe them. When I decided to leave the practice and go back to being a hospitalist, some of them were devastated because they did not know where they will get their next refill.
The clinical studies have now consistently shown that about one third of hypothyroid patients do better on desicated thyroid, on third do better on synthetic thyroxine and the rest can’t tell a difference.
Despite of that most endocrinologist and internal medicine doctors still refuse to prescribe natural thyroid extract. They do not feel comfortable with it. Fortunately, now a decade later, medicine has become much more consumer driven and socially connected, there are now many more who are willing to give patients what they want (for better or worse). They are even willing to prescribe thyroid to those who have normal TSH (something that back in the day could get me kicked out of the residency program!)
But the frustration that was – and still is – felt by the one third that was ignored for so long has given rise to dangerous opposition. The fringe thyroid movements. These are the online groups that advocate treating people with normal TSH with increasingly large doses of NDT (larger than maximum doses recommended by the manufacturer). They claim that the goal is to suppress the TSH completely and to push T3 in the upper quartile. I will attest that doing so can produce miraculous results – I have experienced this miraculous results (many patients with ME/CFS have). The problem is that these results most often don’t last and often go from miraculous to horrendous.
The websites that advocate this approach will advertise the success stories – and I think these people are sincere and are trying to help. They really do believe in what they preach because of their personal experience. But the truth is that there are at least as many people who eventually become debilitated by this approach. It may take days or it may take years but it seems to backfire sooner or later. It sure did for me. (In addition, even in those who can tolerate this kind of treatment, a recent study showed that T3 levels in upper quartile are associated with decreased life span.)
The proponents of natural desiccated thyroid are just as opinionated and vocal about their belief in the superiority of natural desiccated thyroid over the synthetic one as was my residency attending was opinionated about its inferiority. They want levothyroxine erased from the face of the planet (because it’s pure evil!), and they want everyone to be on natural thyroid extract, even those who say they don’t like it. In fact, when someone doesn’t do well on their suggested protocol, they will usually explain it in terms of the person not having enough of some nutrient and suggest pushing that nutrient to the dangerously toxic games. Either you need to push your iron levels or Vitamin D to toxic levels (because not only TSH range but all the other ranges are wrong too).
Alternatively, they will claim you are failing the thyroid treatment because you have the so called “adrenal fatigue” and you need to take cortisol (which is something I used to believe in my early days of illness but I will later explain why its an accurate description of a syndrome with a bullshit outdated explanation. I will also explain why glucocorticoids/cortisol work in this situation). The greatest issue I have with thyroid fringes, is that it’s suggested that you have “to feel bad before you can get better” which can be a rather dangerous internet advice for desperate people.
Their enthusiasm is contagious, their success stories make you feel jealous. I am embarrassed to admit that I’ve fallen into this trap and listened to this sort of false advertisement. Being used to “just pushing through” for most of my life I ignored the clues from my body and nearly killed myself. This is why I’m writing about it – to warn others from repeating my mistakes.
However, I will admit that despite the nightmare that thyroid treatment has been for me, I did carry out a useful piece of knowledge from this circles – the importance of deoidinase enzymes, which convert T4 to T3. Remember this name, we’ll get back to it later.
Kenneth Blanchard MD, an endocrinologist and out-of-the box thinker who wrote “Functional Approach to Hypothyroidism” tells in his book that he built most of his practice on “resuscitating” victims of TSH suppression protocols. The doses he found most useful are in fact so low that virtually everyone in his endocrine circles would call them “homeopathic”, e.g. they would claim that the only logical explanation why someone would respond to doses this low is because of the placebo effect. And yet, the patients flocked to him from all over the country. We could once again go the easy route of my residency director and claim that they were responding to the placebo, or we could believe Dr. Blanchard and his 1000+ patients and admit that maybe there is something to the whole thyroid business that we don’t understand. Because I’ve tried doses of slow release T3 as low as 0.1 mcg (the lowest dose Blanchard would start off with, and I definitely could tell that it had an effect on me that was not a placebo, I chose to believe the latter.
Another dangerous fringe movement that I want to mention are those who advocate high dose iodine treatment of thyroid disease, which again can be a huge hit or miss for patients with. I believe that if you are very fragile ME/CFS or POTS patient, it literally has a potential to kill you if you’re not careful and take 50 mg loading dose of iodine as those groups advocate.
3. T3 only (Psychiatry, Wilson Syndrome, Paul Robinson)
Then there is a third group of patients who seem to do well on T3 only. This was discovered long time ago by psychiatrist as a very effective treatment of depression, particularly bipolar depression. It often seems to work when everything else fails. It is used as “augmentation therapy” and usually added after the person is already on some psychiatric medication, such as SSRI and lithium.
There are also people who have primarily ME/CFS/dysautonomia presentation, rather than psychiatric presentation of their illness and found out that they could cure himself with T3. Dr. Wilson, a Florida physician who practiced in the 90s and eventually lost his license due to his method, has treated hundreds if not thousands of people by doing exactly opposite of what Dr.Blanchard is doing – putting them on extremely high doses of T3 only, and even coined the term “Wilson syndrome”.
I’ve been down that road too, and for me it was also nothing but disaster but I do believe that it worked for those who were helped by it. Paul Robinson is a very intelligent hypothyroid patient who wrote a book called “Recovering with T3” where he described the method he developed over the years his own method of timing it to certain periods of the day. I’m pretty sure that Paul has what I have – and I’ll get later to what that is. To be fair, I think that his method is probably the most grounded one as it’s rooted in both solid knowledge and personal intuition but I believe it is much more likely to work in men or postmenapausal women when the estrogen is taking out of equation.
The main difference between depressed patients who respond to T3 and people like Paul Robinson or Dr.Wilson’s patients here is that psychiatric patients seem to be much more sturdy when it comes to thyroid. They can start at high doses and take it any time of the day. Patients with ME/CFS, on other hand, are very finicky and fastidious, and need to time their thyroid to the tee.
Now, let’s summarize what we got here:
Some patients do well on T4 alone. Some patients do well on combination of T4/T3 known as natural dessicated thyroid. Others do well on low doses thyroid. Then there are those who need a customized ratio of T3 and T4. There are those who do well on miniscule doses of T3. And there are those who do well on massive doses of T3.
What the hell is going on here? This is a freaking mess!!!
How can we explain such wild discrepancy if we were to believe all of those experiences to be true? (and I do choose to believe that everyone out there is telling their truth).
That was the question that kept me awake at night… Ok, not really, it was my POTS induced insomnia that kept me awake at night but you know what I meant. Somehow I just knew that this was “the money question”. I felt deep inside that if only I could understand my mysterious and conflicted relationship with thyroid hormone then perhaps I could understand the true nature of my illness. Because deep inside of me there was a lingering suspicion: what if this wasn’t really about T3 and T4 ? What if this is was about something else? Something that none of us yet fully understood or knew about?
I wondered about this a lot. Like the Grinch, “I puzzled and puzzled till my puzzler was sore” (my daughter and I love Dr. Seuss!). And frankly I was about to give up because I thought I’d never get to the bottom of it… And then one, I came across the concept of trace amine receptors and from there came the revelation. My inner hunch was right. This wasn’t about the thyroid hormone. At least, not the thyroid hormone I learned about in school (the one that was supposed to be super simple, remember? Except that nothing is ever simple in the body, it is only our limited knowledge that makes it seem so).
It turns out that all this mess, all this suffering I’ve been through was about the other thyroid hormone. The one I didn’t learn about in medical school. The one that virtually no one in the medical world knows about.
And that was the moment when I finally broke through the fog. READ NEXT CHAPTER.
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