Most patients with primary hyperparathyroidism have symptoms.
But often patients and their doctors will not realize that the symptoms are due to parathyroid disease.
Doctors, even good doctors, can miss the symptoms of parathyroid disease for two reasons:
1. Parathyroid disease in practice does not match what physicians learned in medical school.
2. The most common symptoms of parathyroid disease are non-specific.
To illustrate this, here is Ellen's story. Ellen is a fairly typical parathyroid patient. Before treatment, she had the classic symptoms of parathyroid disease. For several years, she had been telling her doctors that she didn’t feel quite right, that something was wrong. She was tired, with low energy and new body aches. She couldn’t concentrate or focus on her work, and seemed to be losing her memory. She was only 56 but thought she might be developing dementia. Her doctors ran every test they could, but couldn’t figure out the cause of her problems. They did notice one thing, a high calcium level, but told her that was a separate issue and did not need to be addressed.
Even after being told that all of her tests indicated that she was healthy, Ellen felt worse. She could no longer work full-time. She was always exhausted and weak; walking seemed to be getting more difficult. She started combing through her medical records, looking for any clues that might show her the cause of her mystery ailment. Again she noted the high calcium levels that her doctors had mentioned only in passing. After some online research, she learned that high calcium levels were almost always caused by primary hyperparathyroidism (pHPT). From other patients online, she also learned that her symptoms were not that mysterious; they were actually pretty typical. Elated at having figured out her issue, Ellen returned to her doctors. Once again, they told her that her calcium levels were not really the problem. She only had “mildly elevated” calcium, which could not cause symptoms.
Fortunately, Ellen decided to get her parathyroid disease treated anyway. She had a pretty typical parathyroid tumor. And within weeks after the tumor being removed, her symptoms had improved dramatically. Her body aches subsided, she started sleeping through the night, her energy level returned to normal, and she finally got back to her garden. This dramatic improvement was surprising only to her other doctors, who never quite believed that her symptoms were related to her mildly elevated calcium levels.
Parathyroid disease does not get a lot of attention in medical school, and what physicians often take away from the lecture on pHPT is “stones, bones, groans, and psychiatric overtones”. These refer to the manifestations of pHPT that doctors are taught to look out for: kidney stones, bone fractures and osteoporosis, abdominal pain (due to constipation, or possibly pancreatitis, an incredibly rare complication of pHPT), and severe nervous system disturbances like delirium or psychosis (also incredibly rare complications of pHPT). Medical students are not taught to look for non-specific symptoms, like fatigue, brain fog, or difficulty sleeping, even though these are much more common (for a full list of common symptoms, see the end of this article).
What we learned in medical school was incomplete. Parathyroid disease can cause kidney stones, but most patients with parathyroid disease will never develop kidney stones. And while a rapid rise in calcium can cause delirium, it is very rare for this to be the way that parathyroid disease presents. By looking only for the textbook symptoms, doctors are missing the most common complaints.
Doctors who look only for "textbook symptoms" of parathyroid disease will miss the most common symptoms.
In addition to “stones, bones, etc,” many medical students are taught that symptoms of high calcium do not start until the calcium is really high – way above normal range. According to many textbooks, someone with calcium levels that are just a little bit over normal should not have any symptoms. Doctors go into practice believing that only very high calcium levels need to be treated; the mildly elevated calcium levels can just be watched since they are not really causing problems.
This teaching is just wrong. Patients can have severe symptoms of parathyroid disease and have only mild elevations in their calcium levels. In addition to severe but non-specific symptoms, they can develop osteoporosis, fractures, kidney stones, chronic kidney disease, cardiac arrhythmias, and other ailments – with just “mild” calcium elevations.
Non-specific symptoms are symptoms that can be caused by many different illnesses – they are not specific to one ailment or group of ailments. Common non-specific symptoms include fatigue, insomnia, low energy, and brain fog. Having a non-specific symptom does not immediately point to one condition. Fatigue can be caused by anything from a cold to advanced cancer to simply not getting enough sleep. Based on just that observation of fatigue, I have no idea what the problem is. I have many more questions to ask before I can even venture a guess as to the reason for fatigue.
Non-specific symptoms are often frustrating for patients and their physicians, because there are so many illnesses that could cause them.
Contrast this with a more specific symptom, such as pain with urination. There are not that many illnesses that cause pain when urinating, so just from hearing that one symptom I already have an idea of what is likely going on. I know what to ask next. I don’t really need to ask about her sleep habits, or bone density scans, or muscle strength. I can go straight to asking more about the current problem and focus my tests on the short list of things that cause painful urination.
Non-specific symptoms are much more challenging. Because there are so many possible causes, it is difficult to even know where to start. Doctors will often order numerous blood tests, hoping that something abnormal pops up. Thyroid problems are common and known to cause fatigue, so thyroid function tests are frequently ordered. Vitamin levels are checked as well, since a deficiency is an easily solved problem. Too often, though, the labs will fail to show any obvious cause. The frustrated physician then needs to explain to the patient that she doesn’t have an answer. Often, patients will be told that their symptoms are just part of getting older, or for women, part of menopause. This is how many patients with parathyroid disease end up suffering for years with non-specific symptoms, believing incorrectly that this is just “how it feels to be 50.”
To the parathyroid patient with non-specific but debilitating symptoms, dealing with uninformed doctors can be extremely frustrating. Here is what you can do:
Fatigue, or feeling more tired than usual
General sense of being sick, "not feeling like myself"
Difficulty sleeping through the night, insomnia
Loss of interest in normal activities
Problems with balance
Hypertension, high blood pressure
Osteopenia or osteoporosis, thinning bones
Palpitations, feeling like heart is fluttering
Atrial fibrillation (cardiac arrhythmia)
Chronic kidney disease, even leading to kidney failure and dialysis
Hair loss in women