You get a painful kidney stone and get treated, and your doctor tells you to drink more water to prevent another one.
You break a bone, and it turns out that you have osteoporosis, so your doctor talks to you about diet, exercise and prescriptions.
You’re feeling nauseous, don’t feel like eating and are experiencing constipation and diarrhea. Your doctor suggests various tests to see if you have a gastrointestinal condition.
You have trouble concentrating, find that your memory isn’t as good as it used to be and, in general, feel like you’re experiencing brain fog. Your doctor asks if you’ve been sleeping well lately.
But what if all these symptoms were caused by a little known disease…one that’s entirely curable with surgery?
It’s called primary hyperparathyroidism, a disease of the parathyroid glands, and it can cause havoc to the bones, kidneys and even the brains of sufferers.
In a sense, you’re lucky if you have symptoms. Some people have no symptoms at all even as the disease is causing serious harm. Fortunately, a common blood test for calcium levels that your regular doctor may routinely order can pick up the earliest signs. That’s the first step to identifying the condition.
Unless you have symptoms, however, your doctor may not suggest surgery right away. Some physicians recommend watchful waiting for asymptomatic patients. But waiting while the disease may be damaging your body is controversial, even among experts.
Fortunately, the most current guidelines make it clear exactly who should get treated right away. Here’s what you need to know.
About one in 1,000 Americans have primary hyperparathyroidism, three times as many women as men. It’s becomes increasingly more common over age 60. (Primary means it’s not caused by another disease.)
A little background: Primary hyperparathyroidism is not a problem with the thyroid gland. Rather, it affects the tiny pea-size parathyroid glands on or near the thyroid. There are four of them, but usually only one is overactive, signaling excessive release of parathyroid hormone. That hormone’s purpose is to maintain the right level of calcium in the blood, and when it’s overactive, it signals the body to pull too much calcium from the bones into the bloodstream. That can weaken bones and lead to osteoporosis and fractures…cause kidney stones…and create neurological issues that affect concentration and memory and lead to depression.
Until the 1970s, people with primary hyperparathyroidism would be diagnosed when they went to their doctors with serious complaints—bone pain, broken bones, abdominal pain and kidney stones. (Other symptoms of severe disease may include nausea, vomiting, loss of appetite, constipation and an increased need to urinate.) Since that time, the disease is generally caught earlier through calcium tests, which are now part of the routine blood test you get during an annual physical.
If you have any of the symptoms or conditions mentioned above and you haven’t had a checkup recently, ask your doctor for a blood test. If the result shows a high calcium level in your blood, your parathyroid hormone level will be tested…and if it is high, you’ll likely be diagnosed with parathyroid disease. It’s usually caused by a noncancerous tumor on one of the glands.
Although medication is sometimes prescribed to manage the disease, there are no medications that can cure it or treat all of its effects. The only way to cure it is through surgical removal of the overactive gland or glands. Within the first year, your bones become stronger, kidney stones wane and you may find that the brain fog and mood issues get better, too.
But what if you get the diagnosis after a regular checkup but don’t have any symptoms? Should you still get your diseased parathyroid gland removed?
Most people who show up at the endocrinologist with primary hyperparathyroid disease don’t have any obvious symptoms, says Shonni J. Silverberg, MD, professor of medicine in endocrinology at Columbia University College of Physicians and Surgeons. When the calcium test was added to routine blood tests in the 1970s, patients began to be diagnosed when they were asymptomatic. The number of people diagnosed with the disease rose by a factor of four to five times.
Experts disagree about what to do if you don’t have symptoms. Some recommend waiting because not everyone does develop clinical problems, and the disease progresses at different rates in different people…and more slowly in older adults. Other experts are concerned that those who don’t receive surgery are needlessly putting themselves at risk for complications down the road.
Recently updated guidelines from an international group of experts can make that decision easier. Unless you are too frail for surgery, even if you have no clear symptoms you should have surgery if you are diagnosed with primary hyperparathyroidism and have any of these factors…
• Very high blood calcium levels. A normal blood calcium level for an adult ranges from 8.5 milligrams per deciliter (mg/dL) to 10.2 mg/dL, although there are slight variations based on different labs. If your calcium level is 1 mg/dL above the normal range, it’s not just slightly but significantly elevated.
• Silent kidney stones. If you have kidney stones, you should have the surgery. When they’re painful, you’ll know you have them. But the new guidelines acknowledge that some people may have “silent” stones, meaning that they’re there but not causing any symptoms. One study found that 15% of patients had kidney stones that were not causing symptoms. An ultrasound or other imaging test is recommended to detect any silent stones, and if any are found, you would be a candidate for parathyroid surgery.
• Kidney trouble. If your kidneys are not working well (impaired kidney function) for any reason, that’s another reason to have surgery. This can be detected by a routine blood test as well.
• Osteoporosis or fractures. Patients with osteoporosis have low bone density and are at risk for fracture. Primary hyperparathyroidism can affect your bones, making them weaker. If you have low bone density, you should have surgery. Your physician can use a bone densitometry machine to noninvasively measure the density of your bones. The new guidelines now also recommend imaging of the spine to look for compression fractures, which can go undiagnosed but indicate that the bones are already fragile enough to have fractured…and support the need for surgery.
• Early onset. If you’re under 50, you should have surgery because you are likely to develop symptoms in your lifetime.
Unlike many illnesses, primary hyperparathyroidism can be cured with surgery more than 95% of the time, so experts tend to recommend it. In most cases, you can go home the same day that you have the surgery, although it takes between one and three weeks to heal fully. Most of the time, you won’t need any medication or further treatment (since you’ll still have some working parathyroid glands) although you will have to have your blood calcium levels checked regularly and may need to take calcium/vitamin D supplements.
If you do opt for surgery, finding an experienced surgeon is key. The area is delicate and sometimes the glands are hard to find (or more than one is involved), so surgeons need to know how to respond in those circumstances. In general, a surgeon should do more than 50 parathyroid operations a year to be considered an expert. Don’t be shy or embarrassed to ask how many of a certain type of operation a surgeon has done and if his/her complication rate is above the average, which is less than 1% for an experienced parathyroid surgeon.
