I like this lady's incisiveness in analysing and commenting on the BMJ paper and thyroid matters generally. It's from the Canadian Thyroid Patients Campaign site. It's a bit long but worth the read:
AN UNREACHABLE DIAGNOSIS
This newly published guidelines document by Bekkering and team are based on a 2018 research review article that analyzed of 21 previous studies of subclinical hypothyroidism. (Feller et al, 2018).
Bekkering and colleages aim their attack “against thyroid hormones” in adults with Subclinical Hypothyroidism:
“The guideline panel issues a strong recommendation against thyroid hormones in adults with SCH (elevated TSH levels and normal free T4 (thyroxine) levels).
It does not apply to
women who are trying to become pregnant or
patients with TSH >20 mIU/L.
It may not apply to
patients with severe symptoms or
young adults (such as those ≤30 years old).”
We know what this means. Our modern medical systems are excessively focused on numbers, not careful reading, so it will be misinterpreted even more strictly than it is written here. Merely mentioning symptoms and age will not help patients whose doctors are focusing on the convenient number 20.
The >20 mIU/L cutoff will likely deny even “severe symptoms” the honor of being called “hypothyroid symptoms.” Even the younger adults will be told “you’re too young to have thyroid gland failure. You’re not in your 40s yet.”
Bekkering’s guideline-writing team had little basis to make this category so large.
Feller’s review article, the main research basis of Bekkering’s guidelines, listed no less than ELEVEN limitations of their review as various populations to whom their review may not apply, and yet Bekkering only gave FOUR exclusions.
Feller and team said quite explicitly in their “Limitations” section that because only 2 of the 21 studies focused on people with TSH higher than 10, the findings of their review “may not be generalizable to people with subclinical hypothyroidism and a [TSH] level higher than 10 mIU/L.”
— And yet the diagnosis was generalized to >20 mIU/L anyway!
DISMISSAL AND DELAY
Some of us thyroid patients have suffered years or decades being untreated because our Thyroid Stimulating Hormone (TSH) level did not rise high enough to qualify for thyroid hormone therapy.
Those of us who have finally attained optimized therapy look back with anger and disillusionment at the system that imprisoned us for so many years of our lives.
We could have listened to with compassion, we could have had access to a combination of relevant, cheap and available thyroid tests, and once we were finally treated, we could have had more effectively optimized therapies that made it more worth the long wait.
We could have been set free earlier.
Subclinical hypothyroidism has been defined variously in different times and places. The most permissive definitions define it as an elevated TSH concurrent with a Free T4 level that is within reference range. The most restrictive definitions have raised the TSH bar to 10 mU/L, which is far above today’s upper cutoff of approximately 4 mU/L.
And now the guidelines say doctors should delay treatment even longer for millions like us by raising the bar to more restrictive levels!
These new guidelines want to raise the TSH cuttoff from >10 mIU/L to >20 mIU/L.
Over our years or decades of suffering, while our TSH was not high enough, our symptoms were continually dismissed as being non-thyroid related.
According to the scripture of modern therapy guidelines, our symptoms are not truly thyroid symptoms unless the TSH rises high enough to declare that they are.
TSH IS NOT THE JUDGE
The problem all along is that the TSH is NOT the cause of hypothyroidism in organs and tissues. But the TSH is being used to judge our eligibility for thyroid hormone therapy because it happens to be tied to T4 hormone.
Anyone who knows the basics will understand that TSH is a secretion that calibrates itself in inverse proportion to T4 levels in blood.
But neither TSH nor T4 are capable of entering thyroid hormone receptors in the nucleus of cells to activate genomic action there. Only T3 hormone can do that.
The invisible cause of our suffering is a reduction in the most essential thyroid hormone of all, the T3 hormone, which never gets noticed. Blood levels of T3 stay within reference range during untreated subclinical hypothyroidism. In a medical system that only judges a lab test result by being “in or out of range,” a T3 deficit lies hidden. Our drop in Free T3 is relative to our individual body’s needs, not relative to a range statistically derived from a larger population. Not even the physiological effects of tissue hypothyroidism like ankle reflex get tested anymore, though it’s a very affordable test.
Reduced below our personal set point, yet statistically “normal,” our T3 levels in blood and tissues render us progressively more and more symptomatic, fatigued, and depressed, with a huge list of additional symptoms, unable to function normally and sometimes unable to earn a living and maintain relationships.
In autoimmune thyroid disease, it can take decades for a thyroid gland to die an excruciatingly slow death from antibody attack. As the thyroid gland is gradually wrangled into a fibrosed mass of inert tissue, the TSH level creeps slowly higher, but often too slow to satisfy our medical system. Our T4 remains stubbornly in reference range, so we don’t look hypothyroid there, either.
This form of hypothyroidism is not so “mild.” Some of us collect additional autoimmune disorders to think about, and hypothyroidism can worsen other chronic diseases like chronic heart disease. We can become a costly burden to our society, our families and friends, and ourselves.
It is a horrid existence to be imprisoned within your body and have your medical system dismiss your suffering because your TSH is not high enough nor your T4 low enough to qualify you for rescue and the real reason for your suffering is beyond the detection of modern medicine.
This arbitrary diagnosis barrier is so high because the TSH test and the T4 reference range that define “subclinical hypothyroidism” are very blunt instruments, unable to identify patients whose glands have suffered enough autoimmune destruction. We suffer a hidden hormone deficit. (Hoermann et al, 2016)
TREATMENT WITH (ALL) THYROID HORMONES?
Secondly, Both Bekkering and the research by Feller falsely overgeneralized about all thyroid therapy modalities being equally ineffective in addressing hypothyroid symptoms and health problems.
Bekkering continually uses the phrase “treatment with thyroid hormones,” plural. Feller says “thyroid hormone therapy.” But thyroid hormones used in therapy could involve T4, T3, or a combination of the two hormones, and they are very different in their effects.
All 21 trials reviewed by Feller were about ONE form of thyroid therapy alone — synthetic T4 hormone (levothyroxine).
Neither research article mentioned the hormone medication “T3,” (liothyronine) nor desiccated thyroid extract (DTE / NDT) which contains T3 and T4.
Neither the review article nor Bekkering’s guidelines mentioned that T4 is the largely inactive hormone that the body must convert into T3, the active hormone, and that T3 is a far more potent and potentially far more effective medication.
Neither the guideline nor the research review had the right to generalize beyond the ineffectiveness of levothyroxine monotherapy in the treatment of thyroid disease.
Only the BBC article writer happened to mention T3 therapy, but in a limited manner, as a “more expensive drug,” not mentioning anything about its greater potency and effectiveness in therapy.
These guidelines are part of a huge, systemic problem that all hypothyroid patients, not just those with subclinical hypothyroidism, face, with regard to our pharmaceutical options and the effectiveness of our therapy.
T3-based therapies were once the gold standard of thyroid therapy until the 1970s when levothyroxine took hold of the market and the minds of endocrinologists. Since then, the medical professions have made it difficult to reintroduce these pharmaceuticals.
Most hypothyroidism therapy guidelines deny T3 hormone therapy to the vast majority of patients. This is largely based on endocrinologists’ pharmaceutical prejudice against desiccated thyroid extract, fear of T3’s potency, and preference for synthetic T4.
As a result of these modern restrictions, patients are told that they can’t expect relief from symptoms and chronic health problems, only normalization of TSH, from today’s “standard of care.”
THYROID HORMONES ARE INEFFECTIVE?
Let’s think about this critically. All our advanced science and pharmaceutical technology assures us that even the synthetic thyroid hormones we obtain from pharmaceuticals are truly bioidentical to naturally secreted and converted hormones. So, why on earth would they all be ineffective in therapy for people who can’t make enough thyroid hormone?
Obviously we’re not getting the right combinations, ratios and amounts of thyroid hormone. Something is wrong with the therapeutic system. Don’t throw out the hormones!
May we as patients point out the ways your system is rendering our therapy ineffective?
Medical prejudice against the larger T3-T4 ratio in an effective, historic thyroid pharmaceutical, desiccated thyroid extract, has led to a series of limited-ratio LT3-T4 combination therapy trials. Unsurprisingly, these limited ratios are limited in effectiveness at resolving hypothyroidism. These limited results have limited the number of T3-based therapy prescriptions. This has led to the removal of limitations on the market price of synthetic T3 (liothyronine), especially in the UK. And ultimately, this means that “costly” T3 is being denied to many patients.
If the system keeps on limiting access to thyroid pharmaceuticals and limiting its T3 ratios, what can they expect other than limited effectiveness?
If the tiny amount of T3 that has been permitted to date in clinical trials is going to be effective on any hypothyroid patients, why would it not be effective in the treatment of milder forms of subclinical hypothyroidism?
So now, it’s time for even more of a limitation.
Let’s make guidelines that use sweeping language that would damn ALL “thyroid hormones”, even T3-based therapies, to futility, and even worse, unmentionability.
DON’T LIMIT OUR THYROID HORMONES
This is a slap in the face of suffering thyroid patients:
“Thyroid hormones do not lead to important benefits for adults with subclinical hypothyroidism for quality of life or thyroid related symptoms including depressive symptoms and fatigue.”
No, we know this is false. We see something else among our peers.
Some thyroid patients have actually suffered long and fought hard to seek out and obtain a thyroid hormone therapy that is effectively optimized to our T3 hormone requirements.
Your increasingly restrictive diagnosis guidelines and your refusal to even mention the existence of T3-based therapy options are part of the system that is denying superior, effective therapy to millions of suffering patients.
Hypothyroidism: The difficulty in attributing symptoms to their underlying cause
