By Mary Shomon | Reviewed by Richard N. Fogoros, MD
It’s significant that a significant number of the estimated 27 million people with hypothyroidism end up also being diagnosed with fibromyalgia. Both conditions share many similar symptoms, including fatigue, exhaustion, depression, brain fog , and varying degrees of muscle and joint pain.
Some experts theorize that that like most cases of hypothyroidism in the United States, fibromyalgia is also an autoimmune disease.
Others theorize that the group of fibromyalgia symptoms are actually symptoms of hypothyroidism itself. But there is no question that there is a great deal of cross-over between the two conditions.
Fibromyalgia is also known as fibromyalgia syndrome (FMS), fibromyositis, fibrositis, and myofibrositis. Fibromyalgia is characterized by widespread joint and muscle pain and tenderness, fatigue, and exhaustion after sleep and after you make a physical effort.
Fibromyalgia affects as many as 8 million people in the U.S., occurring mainly in women of childbearing age. In general, fibromyalgia strikes women seven times more often than men.Symptoms usually arise between the ages of 20 to 55, but the condition also may be diagnosed in childhood. Among the entire population, it’s estimated that as many as 3 to 6 percent of the general population, including children, meet the formal criteria for an official diagnosis of fibromyalgia.
This would make fibromyalgia over twice as common as rheumatoid arthritis.
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, constipation, bloating, cramping
Diagnosis of Fibromyalgia
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 Jacob Teitelbaum, MD, author of From Fatigued to Fantastic, 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.
The Thyroid Connection and T3
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 the late fibromyalgia expert Dr. John Lowe, who headed the Fibromyalgia Research Foundation and wrote The Metabolic Treatment of Fibromyalgia , questioned what he calls the four “conventional endocrinology mandates.”
The only cause of thyroid hormone deficiency symptoms is hypothyroidism
only patients with hypothyroidism “according to lab results” should be permitted to use thyroid hormone
the hypothyroid patient should only be allowed to use T4 (levothyroxine) and
the patient’s dosage should not suppress the thyroid stimulating hormone (TSH) level.
Dr. Lowe had to challenge these preconceptions as part of his long-standing effort to learn more about treatment-resistant fibromyalgia. The result was 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 was his recognition that a patient with cellular resistance may have perfectly normal circulating thyroid hormone levels yet have the symptoms and signs of hypothyroidism. He found, however, from his discussions with other fibromyalgia/CFS researchers, that most are unaware of such potential mechanisms. He has said:
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, conventional physicians are 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. Dr. Lowe, however, interpreted that as evidence that the patient was showing 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 believed 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 showed that safe but suppressive doses were 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.
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. He felt that was not enough to free most hypothyroid patients from their symptoms.
He also believed that assuming that replacement dosages of T4 are the only acceptable treatment prevents other researchers from seeing the cause of most patients’ fibromyalgia was inadequate thyroid hormone regulation of tissues. Dr. Lowed believes that the combination of T4 and T3 generally works better than T4 alone with hypothyroid patients, and in some cases T3 alone worked 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.
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.
A Word from Verywell
If you have hypothyroidism with symptoms that suggest fibromyalgia, or you have fibromyalgia, you may want to consider seeing a practitioner with expertise in both conditions, who views them as having an underlying connection. A good starting point for finding the right practitioner is at the websites of the National Fibromyalgia Association and the National Fibromyalgia & Chronic Pain Association
Haliloglu S et al. “Fibromyalgia in patients with thyroid autoimmunity: prevalence and relationship with disease activity.” Clin Rheumatol. 2017 Jul;36(7):1617-1621. doi: 10.1007/s10067-017-3556-2. Epub 2017 Feb 7.
Lowe, John. “The Metabolic Treatment of Fibromyalgia.” McDowell Publishing Company; 2000.
Nishioka K, et al. “High prevalence of anti-TSH receptor antibody in fibromyalgia syndrome.” Int J Rheum Dis. 2017 Jun;20(6):685-690. doi: 10.1111/1756-185X.12964. Epub 2016 Nov 30.
Selmi C et al. “The 2014 ACR annual meeting: a bird’s eye view of autoimmunity in 2015.” Autoimmun Rev. 2015 Jul;14(7):622-32. doi: 10.1016/j.autrev.2015.03.003. Epub 2015