Osteitis Fibrosa Cystica (OFC)

What is osteitis fibrosa cystica (OFC)?

Osteitis fibrosa cystica (OFP) is a bone disorder and a rare complication of hyperparathyroidism (when your parathyroid glands make too much parathyroid hormone, or PTH).

You need PTH for strong, healthy bones. But too much hormone can have the opposite effect — your bones can weaken, causing deformities and cyst-like holes in your bones over time. Excess PTH may result in high calcium (which can cause kidney stones) and hypertension (which can cause heart failure).

Other names for osteitis fibrosa cystica include:

• Von Recklinghausen’s disease of bone.
• Osteitis fibrosa.
• Cystica generalisata
• Osteodystrophia fibrosa.
• Brown tumor of bone. (This name refers to spots that form on the bones in people with OFC. But despite the name, the spots aren’t technically tumors — and they’re not cancerous.)

“Osteitis fibrosa cystica” means “cystic bone destruction” — and bone damage can occur any time you have elevated levels of PTH. But early diagnosis and treatment of hyperparathyroidism can help treat or prevent OFC.

How common is osteitis fibrosa cystica?

OFC is rare in countries with access to healthcare. In the United States, the condition affects less than 5% of people with hyperparathyroidism. It’s most common in those who’ve had untreated severe hyperparathyroidism for a long time.

OFC used to be more common. Fifty years ago, about 69% of people with hyperparathyroidism went on to develop the bone disorder. But medical advances like routine blood tests make earlier detection and treatment possible.

What are the symptoms of osteitis fibrosa cystica?

The main symptoms of osteitis fibrosa cystica are:

• Bone pain.
• Fractures (most commonly in your arms, legs or spine).

Early symptoms of OFC may include:

• Fatigue.
• Weakness.
• Nausea and vomiting.
• Constipation.
• Peeing more than usual (polyuria).

What causes osteitis fibrosa cystica?

Untreated hyperparathyroidism causes osteitis fibrosa cystica. There are two types:

• Primary hyperthyroidism. This happens when there’s a direct issue with your parathyroid glands, like a cancerous or noncancerous growth.
• Secondary hyperthyroidism. This occurs when another health condition (like a vitamin D deficiency) causes low calcium levels. Your parathyroid glands work overtime to boost calcium, resulting in osteitis fibrosa cystica.

What are the complications of osteitis fibrosa cystica?

Pain, deformities and fractures are all bone-related complications of untreated hyperparathyroidism and OFC.

Other complications can include:

• Kidney stones.
• Kidney failure.
• Low energy.
• Abdominal pain.
• Depression.

How is osteitis fibrosa cystica diagnosed?

A healthcare provider will start by reviewing your health history in detail. They’ll ask you how long you’ve had symptoms and whether you have other conditions that could affect your PTH levels. They’ll also do a physical exam to check for bone pain or deformities.

To confirm a diagnosis, healthcare providers may use:

• Blood tests to check for hormone and mineral imbalances.
• Imaging tests, like X-rays or CT (computed tomography) scans, to check for microfractures or areas of bone thinning.

How is osteitis fibrosa cystica treated?

If an abnormal parathyroid gland caused OFC, surgical removal (parathyroidectomy) is the standard treatment. This procedure can reverse bone thinning and help regenerate existing bone loss. Most people have four parathyroid glands, so if you remove the affected gland, the remaining ones can usually make enough hormone for proper function.

If surgery isn’t an option, other osteitis fibrosa cystica treatments include:

• Calcimimetics. These medications mimic calcium in your blood. Calcimimetics “trick” your parathyroid gland into making less parathyroid hormone.
• Bisphosphonates. These drugs work by slowing bone loss. They’re commonly prescribed for people with osteoporosis, but they can also offer short-term help for people with OFC.

Can osteitis fibrosa cystica be prevented?

Having routine blood tests can help detect high calcium before it results in severe damage.

In addition to routine blood testing, talk to your healthcare provider about managing calcium and vitamin D levels with lifestyle changes. For instance, if you live in a region where there’s minimal winter sunlight, you may need to take supplements. Your provider can also tell you how to get appropriate nutrition through the foods you eat.

The sooner you diagnose and treat hyperparathyroidism, the less likely you are to develop osteitis fibrosa cystica.

What’s the outlook for osteitis fibrosa cystica?

With appropriate management, the outlook is good. Treatment can stop bone thinning and help remineralize your bones.

When should I see my healthcare provider?

Schedule a visit with your healthcare provider right away if you develop bone pain or tenderness. If you have hyperparathyroidism, it’s a good idea to get routine blood tests to check your calcium levels.

What questions should I ask my doctor?

If you have osteitis fibrosa cystica, here are some questions you may want to ask your healthcare provider:

• How severe is my condition?
• What are my treatment options?
• Are supplements an option for me?
• Will I need surgery?
• Are there nutritional changes I can make that will help?

A note from Cleveland Clinic

Weak or painful bones can have a serious negative impact on everyday life. If you’re prone to fractures, it might be tempting to avoid certain activities altogether. Fatigue, weakness, nausea and peeing more than usual could mean you have hyperparathyroidism or OFC. If you notice any of these symptoms, talk to your healthcare provider right away. Early diagnosis and treatment can help minimize bone damage.