Living with Cushing’s Disease

Cushing's disease is a rare hormone disorder caused by a brain tumor in the pituitary gland. Although the tumor is often benign (non-cancerous), it can release hormones that trigger excess release of the "stress hormone" cortisol. High levels of cortisol can lead to a range of symptoms, including weight gain, easy bruising, weakness, high blood pressure, and mood changes.

Treatment usually involves addressing the underlying cause, such as surgical removal of the tumor, and managing cortisol levels through medications. Most individuals affected by this disease are typically between the ages of 20 and 50.

How does Cushing's disease affect your overall quality of life and even life expectancy? How is life after Cushing’s disease? Here is a comprehensive overview of what living with Cushing's disease entails.

Since the tumor involved in Cushing's disease is often not cancerous, surgical removal of the tumor can provide a cure and resolve symptoms. However, while many individuals can expect to live a normal lifespan, delays in treatment and longer exposure to high levels of cortisol can cause long-term health complications that increase the risk for premature death.

The negative impacts of excessive cortisol on the cardiovascular system, metabolism, and insulin resistance can lead to high blood pressure (hypertension), narrowing and plaque buildup in the arteries (atherosclerosis), obesity, and diabetes. All of these conditions can increase the likelihood of a fatal event, such as a heart attack or stroke.

While treatment for Cushing's disease prevents worsening of these conditions, certain conditions may persist and require medical management. Thus, timely diagnosis, appropriate treatment, and ongoing medical care are crucial in mitigating the impact of Cushing's disease on lifespan and overall health.

Cushing's disease can lead to a variety of physical and emotional symptoms, which can vary from person to person. Some common symptoms include:

• Fatigue: Persistent and debilitating tiredness, even after sufficient rest.
• Muscle Weakness: Difficulty in performing everyday tasks due to weakened muscles.
• Easy Bruising and Thinning Skin: Skin becomes fragile, leading to easy bruising and slower wound healing.
• Mood Changes: Individuals may experience mood swings, anxiety, depression, or irritability.
• Bone Loss: Weakened bones, increasing the risk of fractures.
• Memory and Cognitive Issues: Difficulty concentrating, memory problems, and reduced cognitive function.

These changes can be subtle, vague, and often dismissed. However, its negative impacts on your daily life can be significant. Feelings of being isolated from friends and family, and a sense of hopelessness may arise.

Surround yourself with people who can provide support and understanding during these challenging times and seek help from your medical team to manage these symptoms.

Weight gain is a common and noticeable symptom of Cushing's disease. The amount of weight gained can vary widely from person to person and depends on factors such as the duration of elevated cortisol levels, individual metabolism, and other health-related variables.

In Cushing's disease, excess cortisol production can lead to a redistribution of body fat, resulting in weight gain, particularly in certain areas such as the face, neck, and abdomen. Some individuals may gain only a few pounds, while others might experience more significant weight changes.

Weight gain associated with the disease can sometimes occur gradually, making it challenging to identify when it began. Comparing pictures of yourself at various stages of life can help to remember your "normal" body features.

However, following treatment, it is important to recognize that fully returning to your previous body state may be difficult. Stay positive and celebrate the significant progress that you have made on your journey to health and discuss any concerns with your medical team

Managing diet and nutrition is an important aspect of Cushing's disease. While there isn't a specific "Cushing's disease treatment for weight loss," surgery is one of the primary treatment options for Cushing's disease and overall can remit weight gain symptoms.

Moreover, making healthy food choices can help mitigate some of the symptoms and potential complications of the condition. Here are some dietary considerations:

• Balanced Nutrition: Focus on a well-balanced diet rich in whole grains, lean proteins, fruits, vegetables, and healthy fats. This can help support overall health and manage weight.
• Low Sodium: Since Cushing's disease can contribute to high blood pressure, reducing sodium intake is advisable. Limiting processed and high-sodium foods can help manage blood pressure levels.
• Limit Sugar and Simple Carbs: Reducing consumption of sugary foods and drinks as well as simple carbohydrates can help control blood sugar levels and manage weight.
• Healthy Fats: Choose sources of healthy fats, such as avocados, nuts, seeds, and olive oil, while avoiding trans fats and excessive saturated fats.

Following successful treatment, symptoms often improve or resolve. However, the effects may not be immediately apparent. Depending on the duration of the disease, changes to your body may have accumulated over months to years. While treatment prevents progression, it can take time to regain your energy levels and return to your normal weight.

Regular medical follow-up appointments will also be important to monitor hormone levels and detect tumor recurrence. Patients with persistently elevated cortisol levels after surgery may require additional treatments such as radiation therapy and medications to manage symptoms.

Other conditions that may have developed or worsened due to Cushing's disease, such as high blood pressure and diabetes, will still need to be managed. However, their severity may also improve after treatment.

Overall, many individuals who receive appropriate and timely treatment can live long fruitful lives. Although recovery after surgery can takes weeks to months, truly finding yourself again after years of enduring this disease can take longer. Celebrate the significant strides that you have made in your journey towards health and take one day at a time.

• Recovery from Cushing's disease is a process, it can take substantial time and effort to return to your "normal" self
• After successful treatment, most patients report improved symptoms over time
• Even after treatment, conditions arising due to chronic exposure to high cortisol levels will still need to be monitored and managed

• Endocrine Society
• Pituitary Foundation
• Urology Care Foundation
• National Adrenal Diseases Foundation