The Emotional Weight of Chronic Monitoring in Acromegaly

One aspect of living with acromegaly that’s often overlooked is the emotional toll it can take. Certain changes in your body are likely to persist even if you no longer have active disease, and ongoing monitoring can be exhausting. But by recognizing the signs of burnout, you can take steps to help get your mental health back on track.

Here’s why acromegaly can take a mental and emotional toll, along with strategies to address this burden.

The main treatment for acromegaly — which is typically caused by a tumor on your pituitary gland, at the base of your brain — is surgery to remove this tumor. After this, you’ll need a series of follow-up tests to see if your body is producing normal levels of growth hormone.

“Acromegaly is a chronic condition that requires lifelong monitoring,” says George Stamatiades, MD, PhD, an endocrinologist at Brigham and Women's Hospital in Boston. “Patients often undergo frequent blood tests, MRI scans, clinic visits, and ongoing screening for disease-related complications.”

• IGF-1 This blood test measures a hormone produced by your liver in response to growth hormone, and it is the most commonly used measure of growth hormone production.
• Growth Hormone In some cases, growth hormone in your blood may be measured directly, but this test is less widely used since levels tend to fluctuate over time.
• Magnetic Resonance Imaging (MRI) Imaging scans can show any residual tumor in the area of your pituitary gland.

Your doctor should also ask about any ongoing issues you’re experiencing. “Persistent joint disease, skeletal changes, sleep disturbances, fatigue, and metabolic or cardiovascular complications can continue even after normalization of IGF-1 levels,” says Maria Fleseriu, MD, director of the Pituitary Center at Oregon Health & Science University in Portland.

Generally, complications of acromegaly warrant the same treatment approach as in any other context, such as taking medications for high blood pressure or diabetes. But it’s also important to rule out mild active disease, meaning that your body is still producing too much growth hormone. In this case, you can take medications to reduce or block excess growth hormone.

Even if your IGF-1 falls in the normal range, “some of those people need medical therapies to improve quality of life,” says Lewis Blevins, MD, an endocrinologist at UCSF Health in San Francisco. “A normal result may not be entirely normal” for a given person, he says, especially at the higher end of the range defined by a laboratory as normal.

There are several reasons that people with acromegaly may experience burnout.

“The cumulative burden of ongoing medical care, uncertainty, and repeated healthcare interactions can contribute to emotional fatigue,” says Dr. Fleseriu. “Even when disease control is achieved, patients may remain concerned about persistent symptoms, possible recurrence, treatment effectiveness, or cost.”

Dr. Stamatiades's patients with acromegaly often report feeling worn down by the condition. “Many patients tell me that even when their acromegaly is under control, they never feel completely free from it because there is always another blood test, MRI, or follow-up appointment coming up,” he says. “Over time, that can become emotionally exhausting.”

Stamatiades says that daily medication injections, treatment adjustments, and insurance-related barriers can also significantly add to the feeling of being overwhelmed.

Even when someone is taking monthly injections, “I’ve had a number of people who say, ‘I miss two or three of those a year just because I’m tired of getting them,’” says Dr. Blevins. “It just becomes a heavy burden.”

When insurance companies deny coverage for needed medications or MRI scans, it can be especially frustrating, Blevins says: “Those hurdles just make life more difficult for our patients.”

Blevins can often tell when a patient with acromegaly is experiencing fatigue or burnout. “You can sense a change in personality, or you might see it in the labs,” he says — meaning someone isn’t taking their medications regularly. “Some patients come right out and say they’re tired of having this disease.”

The following signs can indicate burnout related to acromegaly, according to Fleseriu and Stamatiades:

• Avoiding appointments or blood tests
• Feeling overwhelmed by treatment
• Frustration with ongoing symptoms
• Feeling detached or apathetic about symptoms or treatment
• Difficulty keeping up with medications
• Anxiety about test results

You may also experience certain general symptoms or issues, even if they’re not clearly connected to your experience with acromegaly:

• Mental or physical fatigue or exhaustion
• Brain fog or difficulty concentrating
• Sleep disturbances
• Lack of motivation
• Feeling isolated

If someone experiences these issues, “They should discuss these feelings openly with their endocrine care team,” says Stamatiades. “Burnout is common in chronic disease management and should be recognized as an important part of the patient's overall health.”

Fleseriu notes that chronic disease care providers are used to seeing emotional difficulties, and they can give assessments to figure out what changes in your care could help. “A comprehensive assessment can help identify contributing factors, including persistent symptoms, sleep disorders, pain, depression, anxiety, and treatment-related challenges,” she says.

The best strategy for dealing with fatigue or burnout will depend on what aspects of your care are most responsible for your issues.

Blevins says that simply delaying a scheduled appointment for a treatment, lab test, or follow-up visit can sometimes help. “You have to try to help people live their best life,” he says. “I’m not going to require anybody to strictly adhere to any regimen, unless I think it’s necessary for survival.” In most cases, he says, a delay won’t meaningfully affect clinical outcomes.

Aside from any one-time delay in an appointment, Stamatiades says that sometimes it’s possible to simplify someone’s schedule for treatment or monitoring if they feel like the number of visits is overwhelming.

If you need more than just a break or streamlining of your acromegaly care, Fleseriu says the following measures can help:

• Patient education to better understand your care options
• Counseling or psychotherapy
• Screening and treatment for depression or anxiety
• Peer support groups

Talk with your doctor about what options are available if you think you would benefit from counseling, support groups, or mental health treatment.

“Mental and emotional health are part of acromegaly care,” says Stamatiades. “Addressing those issues is just as important as managing hormone levels.”