“The impact of this paper is that it will be exceptionally important to reach out to primary-care doctors, to rheumatologists, and to fibromyalgia centers to present this information and experience and encourage them to do a screening. It’s not widely appreciated.” Dr. Mira Milas
The Vague Definition Syndromes
Symptom-based definitions involving pain and fatigue have a problem: they can fit a lot of people, and that means subsets abound.
If you have them and don’t get a thorough workup at your doctor’s office something could be missed. According to a recent conference report from Medscape News that something in Fibromyalgia includes a very treatable condition called hyperparathyroidism.
As with orthostatic intolerance, thyroid and adrenal problems, small fiber neuropathy, and other disorders, the symptom overlap between FM and hyperparathyroidism is huge. People with either disorder commonly experience fatigue, musculoskeletal pain, headache, cognitive dysfunction, and mood disturbance. Both disorders are more common in women, and both increase with age.
A large study of over 2,000 people found that 4% of people diagnosed with primary hyperparathyroidism or PHP also had been diagnosed with Fibromyalgia. Since many FM diagnoses are probably missed that percentage is probably low.
Another smaller study found that 10% of FM patients had hyperparathyroidism. With the average incidence of hyperparathyroidism in the general population of .5%, it appears that hyperparathyroidism is greatly over-represented in FM patients.
If these numbers are correct, from 240,000 to 600,000 people with FM in the U.S. could have a treatable condition, and treatment could decrease their symptoms or, in some cases, eliminate them.
An FM and ME/CFS Rule of Thumb
Because Fibromyalgia gets a lot more attention than Chronic Fatigue Syndrome, ME/CFS probably gets lost in the mix. The large symptom overlap between Fibromyalgia and ME/CFS and the tendency of some doctors to call all pain and fatigue disorders “Fibromyalgia” means any factor in FM may apply to a significant number of people with Chronic Fatigue Syndrome (ME/CFS) and vice versa.
The parathyroid glands are small endocrine glands found in the neck on the back of the thyroid gland, and their purpose is to regulate the amount of calcium and phosphate found in the blood and the body. A hormone they release called parathyroid hormone (PTH) breaks down bone to release calcium. Too much calcium release can cause fragile bones and a variety of other problems. The parathyroid also regulates calcium absorption in the gut by activating Vitamin D.
Besides the role it plays in strengthening bones, calcium also aids in the transmission of signals in nerve cells and in muscle contraction.
Hyperparathyroid symptoms are rather general, involve pain, and could easily lead to a misdiagnosis of Fibromyalgia. Note that FM patients also appear to have an increased incidence of hyperparathyroidism, and this may further confuse the diagnosis. Symptoms include excessive urination, abdominal pain, bone and joint pain, tiring easily, weakness, forgetfulness, depression, kidney stones, easily fractured bones, and nausea/vomiting.
Screening For PHP
“Look for PHP before diagnosing FM” Dr. McCoy
The symptoms in the FM patients with PHP were similar but a bit different from those found in people with PHP and no FM. People with FM had more musculoskeletal symptoms (100% vs 54%), fatigue (96% vs 57%), cognitive decline/memory loss (62% vs 31%), and headache (19% vs 10%). Thirty-one percent were taking FM drugs, 35% were on narcotic pain relievers, and 28% were on antidepressants.
Screening for PHP involves obtaining an initial serum calcium level. If the level is high, the patient has further lab work, including serum calcium, parathyroid hormone, vitamin D, and possibly a 24-hour urine calcium level.
People at higher risk include women past the age of menopause and people who’ve had prolonged, severe reductions in vitamin D.
The fix is an outpatient surgical procedure under local anesthetic which entails removing the glands that have become enlarged.
Results of the Study
“The key take-home message is that all patients who are potentially diagnosed with FM or carry that diagnosis, wherever they are in their course of treatment, should be screened for parathyroid disease. These patients are labeled as sick, and they may have something that we can fix. I think it’s really crucial to do a bigger study so we can get this out there.” Dr. McCoy
A followup questionnaire 14 months after the surgery found that about 90% of the parathyroid/FM patients reported improvement in at least one symptom, but that 25% reported improvement in cognitive functioning (80%), fatigue (71%), pain (55%), and mood (39%). Over 80% percent stopped taking at least one medication.
The medication most commonly dropped after the surgery were anti-inflammatories, followed by opioid pain drugs, anti-depressants, and FM-specific drugs.
That was pretty good, but the stunning statistic was that about 20% of the group were able to stop taking all their medications. These were the PHP patients misdiagnosed with FM. (Wouldn’t it be lovely to have your diagnosis switched from a chronic, difficult-to-treat illness to a treatable one?)
A Very Successful Surgical Procedure
If you simply associated success with a return to normal serum calcium levels, the surgery was stunningly successful with 97% of the patients’ calcium levels returning to normal. If you associate success with a dramatic reduction in prescription drug use then the surgery was a major success for about 20% of the FM patients. Most of the others had improvement in one or more symptoms and dropped one or more medications.
Anti-inflammatories were the most commonly dropped class of drugs, followed by narcotics, antidepressants, and FM-specific drugs.
These researchers may be coming to your clinic. Multi-center FM and PHP trials are planned.
A small but significant percentage of people with Fibromyalgia may also have a condition called hyperparathyroidism. This condition, which causes increased serum calcium levels, can produce symptoms similar to FM and is easily treated with outpatient surgery. This study found that 20% of FM patients with PHP were able to stop all their prescription drugs after surgery.
Thanks to Steve for the tip.
The high-dose (200/mg or more of oral thiamine daily) survey is closing soon – and will be open until Friday, May 7. If you are currently taking high-dose thiamine or have done so in the past, and feel comfortable sharing your experience, please complete the survey here. (Please do not start high-dose thiamine just to participate in the survey.) Find out more about high-dose thiamine in ME/CFS/FM here.
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