By Mary Shomon
A significant percentage of the more than 30 million people with hypothyroidism end up also being diagnosed with fibromyalgia, an important connection discussed in my book Living Well With Chronic Fatigue Syndrome and Fibromyalgia. Both conditions share symptoms, including fatigue , exhaustion, depression, brain fog , and varying degrees of muscle and joint pain . Some experts believe that like most cases of hypothyroidism, fibromyalgia is also autoimmune in nature.
Others believe that fibromyalgia may be one manifestation of an underactive metabolism – hypometabolism – and is therefore one variation on thyroid dysfunction.
Fibromyalgia, also known as fibromyalgia syndrome (FMS), fibromyositis, fibrositis, and myofibrositis, is characterized by widespread joint and muscle pain and tenderness, fatigue, and exhaustion after sleep and after effort.
Fibromyalgia affects as many as 8 million people in the U.S., occurring mainly in women of childbearing age. Symptoms usually arise between the ages of 20-55 years, but the condition also may be diagnosed in childhood. Among the entire population, it’s estimated that as many as 3-6% of the general population, including children, meet the criteria for diagnosis of fibromyalgia. This would make fibromyalgia over twice as common as rheumatoid arthritis. In general, fibromyalgia is strikes women seven times more often than men.
Some symptoms of fibromyalgia include:
- Feeling of pain, burning, aching, and soreness in the body
- Headaches, tenderness of the scalp, pain in the back of the skull
- Pain in the neck, shoulder, shoulder blades and elbows
- Pain in hips, top of buttocks, outside the lower hip, below buttocks, and the pelvis
- Pain in the knees and kneecap area
- Fatigue, unrefreshing sleep, waking up tired, morning stiffness
- Insomnia, frequent waking, difficulty falling asleep, or falling asleep immediately
- Raynaud’s phenomenon (where your hands feel cold, numb, or turn blue, when exposed to temperature changes)
- Irritable bowel syndrome, diarrhea and constipation, bloating, cramping
A formal diagnosis is confirmed using the official American College of Rheumatology criteria for fibromyalgia:
____ Widespread pain for at least 3 months. Pain should be on both the left side of the body and the right side, and pain both above and below the waist. Cervical spine, anterior chest, thoracic spine or low back pain must also be present.
Plus, pain in at least 11 of 18 specific tender point sites, which include:
____ The area where the neck muscles attach to the base of the skull, left and right sides (Occiput)
____ Midway between neck and shoulder, left and right sides (Trapezius)
____ Muscles over left and right upper inner shoulder blade, left and right sides (Supraspinatus)
____ 2 centimeters below side bone at elbow of left and right arms (Lateral epicondyle)
____ Left and right upper outer buttocks (Gluteal)
____ Left and right hip bones (Greater trochanter)
____ Just above left and right knees on inside
____ Lower neck in front, left and right sides (Low cervical)
____ Edge of upper breast bone, left and right sides (Second rib)
Fibromyalgia and chronic fatigue expert Dr. Jacob Teitelbaum, author of From Fatigued to Fantastic, who contributed the Foreward for the new book Living Well With Chronic Fatigue Syndrome and Fibromyalgia takes a more liberal interpretation. He believes that if someone generally fits the description of fibromyalgia, with symptoms including unexplained fatigue, plus any two symptoms from among brain fog, sleep disturbances, increased thirst, bowel dysfunction, and/or persistent or recurrent infections or flu-like feelings, then a positive diagnosis should be assumed.
The Hypothalamic Connection
Dr. Teitelbaum believes that at the core of thyroid dysfunction and fibromyalgia is a problem with the dysfunction or suppression of a master gland in the brain called the hypothalamus. Says Dr. Teitelbaum…
This gland controls sleep, your hormonal system, temperature regulation, and the autonomic nervous system (e.g. — blood pressure, blood flow, and movement of food through your bowel). This is why you can’t sleep, you have low temperature, you gain weight, and (because poor sleep causes immune dysfunction) you are prone to multiple and recurrent infections. The hypothalamic dysfunction by itself can therefore, cause most of the symptoms! I suspect that problems with the “energy furnaces” in your cells (called the mitochondria) often cause the hypothalamic suppression.
If you are a thyroid patient who has signs and symptoms of fibromyalgia, you should consider being evaluated by a practitioner with expertise in the condition, whether it’s a holistic or complementary MD, an internist or rheumatologist.
And, if you are a fibromyalgia patient, it’s also worth digging somewhat deeper to determine if you have an underlying thyroid problem that may be contributing to – or even causing – your fibromyalgia symptoms.
People typically have a thyroid TSH test to determine if they have a thyroid imbalance, but fibromyalgia expert Dr. John Lowe, who heads the Fibromyalgia Research Foundation, and is author of The Metabolic Treatment of Fibromyalgia, questions what he calls the four “conventional endocrinology mandates” —
(1) The only cause of thyroid hormone deficiency symptoms is hypothyroidism
(2) only patients with hypothyroidism “according to lab results” should be permitted to use thyroid hormone
(3) the hypothyroid patient should only be allowed to use T4 (levothyroxine) and
(4) the patient’s dosage should not suppress the thyroid stimulating hormone (TSH) level.
Dr. Lowe has had to challenge these preconceptions as part of his long-standing effort to learn more about treatment-resistant fibromyalgia. The result is a treatment protocol based on his findings that the unresolved symptoms associated with treated hypothyroidism and fibromyalgia are actually evidence of untreated or undertreated hypothyroidism, or partial cellular resistance to thyroid hormone.
A unique aspect of Dr. Lowe’s theories is his recognition that a patient with cellular resistance may have perfectly normal circulating thyroid hormone levels yet have the symptoms and signs of hypothyroidism. This is an important aspect of Dr. Lowe’s treatments that may point to the reason for his success. He has found, however, from his discussions with other fibromyalgia/CFS researchers, that most are unaware of such potential mechanisms. He says:
To them, if a patient has a normal TSH level, and especially if the patient’s symptoms don’t improve with replacement dosages of T4 (levothyroxine), her condition cannot possibly be related in any way to thyroid hormone. Recent scientific research, however, has shown this belief to be false.
If you have autoimmune hypothyroidism, it’s fairly common to develop some classic fibromyalgia symptoms — such as muscle/joint pain, aches, and sleep disturbances. According to Dr. Lowe, the conventional physician is likely to consider any new or worsened symptoms as evidence that the there’s yet another condition — such as fibromyalgia — in addition to the autoimmune thyroid problem. To Dr. Lowe, however, that means that the newly developing symptoms are likely evidence of undertreated hypothyroidism:
As thyroid hormone deficiency worsens, the number of tissues involved and the severity of the resulting symptoms increase. The patient typically experiences the worsening deficiency as an increased number of symptoms of greater severity. In most cases, such patients simply need a more appropriate dosage or form of thyroid hormone to recover from all their symptoms.
Dr. Lowe believes that rigid adherence to the so-called “normal range” does not show whether a patient has enough circulating T3 (the active thyroid hormone at the cellular level, which is produced in part by the thyroid, and in part by conversion of T4 hormone to T3) to maintain normal metabolism in cells. His research shows that safe but suppressive doses are often more effective at eliminating the associated health problems that are of greatest concern. T4 to T3 conversion can be impaired, so the fact that a patient has a normal TSH level does not mean that her tissue metabolism is normal.
According to Dr. Lowe, one study showed that replacement dosages of thyroid hormone– dosages that keep the TSH within the normal range — mildly lowered patients’ high cholesterol levels, but TSH-suppressive dosages lowered the levels significantly further.
Many published reports and our studies show that the TSH level does not correlate with various tests of tissue metabolism.
Dr. Lowe feels this is important because making tissue metabolism normal should be the goal of all treatment with hypothyroid patients. When the hypothyroid patient is restricted to a dosage of T4 that keeps the TSH within the normal range, testing will produce evidence of abnormal metabolism in multiple tissues.
Dr. Lowe has found that TSH-suppressive dosages of thyroid hormone can also reduce a patients’ risk for disease. Dr. Lowe finds that lower dosages of thyroid hormone have been found to be associated with progression of coronary atherosclerosis and higher dosages (including TSH-suppressive dosages) associated with a halting of the progression. In his studies, Dr. Lowe has extensively tested patients and determined that there is nothing harmful to patients in having their TSH suppressed by these dosages of thyroid hormone. Dr. Lowe sees the far greater danger being the clear adverse consequences of undertreated resistance, resulting in conditions such as fibromyalgia, CFS, and liver and cardiovascular diseases.
Dr. Lowe believes the hypothyroid patient has two options: She can submit to using a replacement dosage of thyroid hormone and remain symptomatic, thus risking premature death from cardiovascular disease. Or she can find a physician who will completely ignore her TSH level and find a dosage that produces normal tissue metabolism.
Some researchers dismiss thyroid hormone replacement as a possible treatment for fibromyalgia symptoms or CFS. According to Dr. Lowe, however, “replacement” as defined by these researchers typically doesn’t work because replacement means the use of only T4 to keep the TSH within normal range, and that is simply not enough to free most hypothyroid patients from their symptoms. The assumption that replacement dosages of T4 are the only acceptable treatment prevents other researchers from seeing the mechanism of most patients’ fibromyalgia/CFS — inadequate thyroid hormone regulation of tissues.
Dr. Lowe believes that the combination of T4 and T3 generally works better than T4 alone with hypothyroid patients, and in some cases T3 alone works best. Dr. Lowe found that when hypothyroid patients were treated with T4 first, gradually increasing the dosage, if it didn’t provide much benefit or any at all, patients were switched to T3. Many patients do not benefit from the use of T4, regardless of how high the dosage.
T4 alone is a poor option for many hypothyroid fibromyalgia patients, and it is useless for fibromyalgia patients with cellular resistance to thyroid hormone. Most of these patients, who make up about 44 percent of the fibromyalgia patient population according to our studies, benefit only from very large dosages of T3. Only a minority of hypothyroid fibromyalgia patients satisfactorily improved with the use of T4 alone.
For more in-depth information on the fibromyalgia/thyroid connection, read:
Pain/Fatigue Syndromes – Fibromyalgia and Chronic Fatigue Syndrome from Living Well With Autoimmune Disease