Health rising blog post by Cort Johnson, 24 October 2016: The thyroid question in Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)
Fatigue, lethargy, mental sluggishness, difficulty tolerating heat and cold, depression, joint pain, headaches, morning stiffness…the list goes on and on. It’s almost a perfect match for chronic fatigue syndrome (ME/CFS) or fibromyalgia (FM) but it’s not either – it’s hypothyroidism; one of the trickiest conditions that people with either disease have to deal with.
If a hypothyroid diagnosis was done purely symptomatically, most if not all people with ME/CFS and FM would be considered hypothyroid. Dr. Teitelbaum’s description of the thyroid gland as the body’s “gas pedal” regulating its metabolic rate resonates strongly with ME/CFS and FM. Few studies on this have been done in FM and almost none have been done in ME/CFS.
Most perplexing for the patient is the considerable disagreement among doctors regarding what constitutes low thyroid and how to treat it. The problem is that giving thyroid hormone to someone who doesn’t need it is can cause their thyroid gland to shut down, leaving them dependent upon thyroid medication for life. Plus, other factors such as low cellular energy production or autonomic nervous system problems can cause similar symptoms.
MD’s with an holistic health slant including prominent ME/CFS/FM practitioners such as Dr. Jacob Teitelbaum, Dr. Kent Holtorf, Dr. Sara Myhill and Dr. Ginerva Liptan – argue that flawed thyroid tests vastly underestimate the amount of hypothyroidism present, and by doing so, keep patients from potentially helpful drugs. Dr. Teitelbaum in a blog titled “The High Cost of Missed Hypothyroid Diagnosis” calls hypothyroidism “horribly under-diagnosed”. He believes that undiagnosed or poorly treated thyroid problems contribute to unnecessary disability in millions of people with fibromyalgia, chronic fatigue syndrome, and chronic pain.
Most doctors, however, probably believe hypothyroidism is rare in ME/CFS and thyroid supplementation is unnecessary and possibly harmful.
A few simple concepts:
- Thyroid hormones – affect the activity of virtually every cell in the body. They regulate the basal metabolic rate, protein, fat and carbohydrate metabolism, bone growth, affect protein synthesis and others. Low thyroid levels can lead to fatigue, mental slowness, pain, depression, weight gain and more.
- Thyroid Stimulating Hormone (TSH) – is produced by the pituitary gland to stimulate the production of thyroid hormones by the thyroid.
- Thyroxine (T4) – is a prohormone produced by the thyroid gland which is broken down by deiodinase enzymes to produce the active form of thyroid hormone.
Triiodothyronine (T3) – The active form of thyroid hormone
Dr. Holtorf’s View of Hypothyroidism
Hormones in Wellness and Disease Prevention: Common Practices, Current State of the Evidence, and Questions for the Future. Erika T. Schwartz, MDa,*, Kent Holtorf, MDb
“Thyroid Disorders” by Kent Holtorf in The LDN Book, ed. by Linda Elsegood
Dr. Holtorf has probably done more work in the area of hypothyroidism than any other ME/CFS practitioner. Please note this overview presents one view of this subject – other doctors will have other views.
Most if not all, patients who suffer from chronic fatigue syndrome, fibromyalgia, diabetes, insulin resistance, depression and stress have immune dysfunction that results in low tissue levels of thyroid hormone. Kent Holtorf
Most doctors rely on TSH and/or T4 test results to determine if thyroid levels are normal. Testing for TSH is an indirect measure of thyroid status but since TSH regulates thyroid production, testing for it makes sense. If TSH levels are high, then thyroid is probably low. In that case doctors will then test for T4 – the inactive form of thyroid; if T4 levels are low then thyroid hormone is needed.
Not so fast says Dr. Holtorf. Holtorf believes that, at times, serum thyroid levels tell us little about thyroid levels in the tissues and cells. Two of those times are when people have fibromyalgia and/or chronic fatigue syndrome.
TSH, Holtorf asserts, is produced by the one organ in the body – the pituitary gland – which is able to maintain its thyroid at normal levels while thyroid levels in the tissues around it are plummeting. If that’s so, then assessing thyroid hormone levels by measuring TSH is like measuring the temperature of your refrigerator by measuring the temperature of the kitchen.
The pituitary/thyroid issue revolves around the enzymes which activate and deactivate thyroid hormone. Two of these enzymes, D1 and D2, convert the inactive form of thyroid hormone (T4) to its active form (T3).
While most of the body uses D1 to convert inactive thyroid hormone (T4) to its active form (T3), the pituitary gland uses D2.
Dr. Holtorf believes conditions like fibromyalgia, chronic fatigue syndrome, stress, pain, autoimmune diseases, inflammation, depression, toxins, etc. suppress and down regulate D1 levels in the tissues, causing the levels of the active form of thyroid hormone to plummet. These conditions don’t affect D2 levels in the pituitary at all.
Because women tend to have lower levels of the enzyme (D1) that converts the inactive to the active form of thyroid, they’re more likely to suffer from hidden thyroid problems. Holtorf noted a typical patient of his: a woman suffering from what appears to be the symptoms of hypothyroidism (fatigue, inability to lose weight, cold intolerance, etc.) who often has low-normal TSH, high-normal free T4, low-normal free T-3, high normal reverse T-3, plus markers of thyroid resistance and low resting metabolic rates.
As active levels of thyroid hormone in the body decline, they may actually increase in the pituitary.
The pituitary gland, remember, produces thyroid stimulating hormone (TSH) which tells the thyroid gland to produce more hormones when levels of pituitary T3 decline. If pituitary levels of the active thyroid hormone (T3) are unaffected by conditions such as fibromyalgia and chronic fatigue syndrome, TSH readings could falsely suggest that thyroid levels are fine, when tissue levels are, in fact, low.
TSH, of course, is what most doctors first test for to determine thyroid hormone status.
Reverse T3 (RT3)
A third enzyme, D3, complicates matters further. D3 converts the inactive form of thyroid hormone (T4) to a form of thyroid called reverse T3 when levels of T4 are too high. Holtorf, however, believes that in some conditions such as fibromyalgia and ME/CFS, RT3 becomes pathological as it blocks the active form (T3) from binding to thyroid receptors in the body.
Higher RT3 levels and/or higher RT3/T3 ratio’s may indicate poor availability of the active form of thyroid (T3).
The pituitary gland is also the only tissue in the body which does not contain D3, the enzyme which converts inactive thyroid hormone (T4) to a form of the hormone (reverse T3).
TSH levels, then, have no bearing at all on reverse T3 levels. RT3 levels can be high even when TSH levels are normal. Most doctors, however, do not test for RT3.
Reverse T3 is actually an “antithyroid” — T3 is the active thyroid that goes to the cells and stimulates energy and metabolism. Reverse T3 is a mirror image — it actually goes to the receptors, sticks there, and nothing happens. So it blocks the thyroid effect. Reverse T3 is kind of a hibernation hormone, in times of stress and chronic illness, it lowers your metabolism. So many people seemingly have normal thyroid levels, but if they have high Reverse T3, they’re actually suffering from hypothyroidism. Holtorf
Because even small increases in reverse T3 can block the active form of the thyroid hormone from having an effect, Holtorf believes that severe hypothyroidism can be present even when standard thyroid tests are normal.
Transport in the Cells and Stress
Holforf also cites culture work indicating that physiological or emotional stress can inhibit the transport of inactive thyroid hormone into the cell. This suggests that T4 levels can be normal or even high when little T4 is making it into the cells. At these times neither T4 nor TSH levels reflect this reduced uptake into the cells.
Besides, inflammation, physiological stress and glucocorticoid drugs such as prednisone also suppress the levels of active thyroid hormone in the tissues and increase levels of reverse T-3.
Testing
Dr Holtorf on Thyroid Testing
“…. extreme caution should be used in relying on TSH or serum thyroid levels to rule out hypothyroidism in… A wide range of conditions including stress, chronic fatigue syndrome, fibromyalgia, inflammation, autoimmune diseases, depression, diabetes, insulin resistance, and systemic illnesses.” Holtorf
More traditional sources of medical information such as WebMD mention only TSH and T4 testing. The Mayo Clinic suggests that most doctors will stop at TSH testing if TSH levels are normal.
Dr. Liptan tests for TSH, T3 and T4. Dr. Holtorf includes these tests as well as a variety of others to assess thyroid functioning.
Dr. Holtorf’s Indications of Low Thyroid Activity
- TSH – >2 = low tissue thyroid levels (Increased TSH can reflect an attempt by the brain to prod the thyroid gland to produce more thyroid. Holtorf believes TSH levels, however, are poor markers of thyroid problems in ME/CFS and FM.
- T4 – high – may be associated with low levels of active thyroid (T3) if problems with transport into the cells are present.
- T3 – generally T3 should be in the upper 25th percentile of normal range.
- Reverse T3 should be less than 150.
- Free T3/Reverse T3 – >0.2, when the Free T3 is measured in picograms per milliliter (pg/mL).
- Sex hormone binding globulin (SHBG) – a marker of thyroid tissue levels in women – if <70, low cellular thyroid levels are likely.
- Leptin – > 12 may indicate leptin is suppressing TSH production.
- Iron / Iodine – check for deficiencies (ferritin should be above 70)
- Basal Metabolic Rate
- Relaxation Phase of Tendon Reflex – Holtorf believes this test is a more accurate measure of thyroid functioning than serum tests; should be above 110 msec
- Reverse T3 level above 150 — or a Free T3/Reverse T3 ratio that exceeds 0.2 [when the Free T3 is measured in picograms per milliliter (pg/mL)] — may indicate hypothyroidism.
Treatment
If reverse T3 levels are high, then Holtorf believes that thyroid preparations containing the inactive form of the thyroid hormone (T4) should not be given. Instead, only preparations of the active form of time-released thyroid (T3) should be given.
In general, Dr. Holtorf finds that T4 preparations such as Synthroid and Levoxyl rarely work and Armour thyroid, a pig glandular product, is somewhat better, but not adequate for most patients.
That leaves combinations of T4/T3 or straight T3. Holtorf reports that T3 works the best for many of his patients, but that the main source of T3 – Cytomel, a short acting T3 drug, is a poor choice. Instead he usually recommends compounded timed release T3. He believes, though, that standard blood tests are not a good way to assess T3 dosing regimens.
Other Factors
Reducing Inflammation – Because serum thyroid tests may be inaccurate in inflammatory states which alter the levels of thyroid in the tissues, lowering inflammation and normalizing immune function can help with thyroid problems. Holtorf has found that low dose naltrexone is able to normalize thyroid functioning at times.
Because gluten can be such a potent inducer of inflammation, Dr. Liptan recommends that everyone with low thyroid embark on a gluten free diet for 8 weeks.
Iron Deficiency – Because iron deficiency impairs thyroid activity, iron levels should be checked. Dr. Liptan wants ferritin levels to be in the 50-100 range; Dr. Holtorf wants them above 70. (Note that both are well above what is often considered “low-normal” (10-50) by many doctors.)
Recovery Story
While thyroid supplementation, when needed, is usually just one part of a treatment plan, occasionally it turns out to be the missing factor in a person’s search for health. Check out a recovery story on the Health Rising website where this turned out to be true.
