Information For People With Cushing's Disease

Taking back control

Cushing’s disease may sometimes make you feel that your life is out of your control. But there are things you can do to help take back control.

Find the right doctor

It may be challenging to find the right doctors who can help create a comprehensive action plan for your Cushing’s disease. A primary care doctor may first identify the symptoms and physical features of Cushing’s syndrome—especially if you are aware of the symptoms that can be caused by excess cortisol levels and bring them to the doctor’s attention. Next, you will be thoroughly evaluated by an endocrinologist, a doctor who specializes in hormone disorders. Some endocrinologists work with patients with your medical condition more often than others, so they may be better able to help you. It is likely that the endocrinologist will refer you to a highly specialized center for additional procedures (more information about the diagnosis of Cushing’s disease can be found here). You should feel comfortable asking your doctors or other healthcare professionals any questions you have about your condition because this is an important way for you to do something about your disease.

Move forward with the course of action that is recommended by your doctor

Your doctor will recommend an appropriate plan of action after you are diagnosed with Cushing’s disease. Following through with this action plan and visiting your doctor regularly are the most important ways to get control over Cushing’s disease.

Talk to your doctor about symptom management

It can take several months or sometimes longer before you notice the beneficial effects on your Cushing's disease. In the mean time, be sure to ask your doctor about medicines you can take and other things you can do to relieve symptoms.

Always put yourself first

The most important thing you can do is to make sure that you put yourself first. It’s not easy, but keep Cushing’s disease from changing who you are by remembering that it causes an imbalance in your body chemistry.

Tips That Can Help You Minimize The Impact Of Cushing's Disease On Your Life
Write a list of things or situations that have become upsetting since you have had Cushing's disease	Think of ways to limit the effect of each thing or situation in your life Decide which of these you can learn to deal with and which should be avoided
Think of the things that give you pleasure and be sure to focus on them.	Make time in your life to enjoy these things Try to find ways of incorporating them into other situations
Take action to regain a sense of control	Taking care of your body leads to physical benefits and helps empower you to feel that you can do something about your situation Exercising or taking up a physical activity can promote weight loss and cardiovascular health, and can become a social outlet when done with a group Eating healthy and taking certain vitamin supplements can help prevent some complications Learn as much as you can about Cushing's disease to help you feel like you are in a better position to make informed decisions
Be patient with yourself and others	You don't have to let Cushing's disease take over your life, but you have to remember that it affects you Try not to get down on yourself and let others know when you could use an emotional boost Let people know how Cushing's disease affects you physically and emotionally so that they can better understand what you are going through

Learn all you can about Cushing’s disease

Although it is an uncommon condition, there is a lot of information about Cushing’s disease on the Internet (such as this Web site) and from other sources. By finding out as much as you can about these conditions, you will be a well-informed patient who can partner with your doctor to help get control.

Join a support group for people with Cushing’s disease

There are support groups that are dedicated to helping people with Cushing’s disease. Many of the people in these groups have or had Cushing’s, or have been a caregiver for a loved one with Cushing’s, and they can provide valuable insights and encouragement about living with this condition.

Take care of your body

It is always important to follow your doctor’s instructions regarding diet and exercise. There are certain nutritional guidelines that have been developed specifically for people with Cushing’s disease.

Some of the dietary tips include

• Beware of too much sodium, which can affect your blood pressure, cause swelling, and make you gain weight¹
• Be sure to get enough daily calcium because people with excess cortisol may often develop osteoporosis(fragile bones)^1,2
  • Calcium and vitamin D can be important in strengthening bones
• Try to keep cholesterol in check because Cushing's disease can cause cholesterol levels to go up
  • Try limiting your intake of fatty foods; eat dairy products (such as milk and cheese) that are low in fat

Consider dietary changes if you have high blood sugar (called hyperglycemia) because excess cortisol can cause blood sugar levels to increase.

As you can see, there are a number of ways to help you take control of your life if you are living with Cushing’s disease. Be sure to talk to your doctor about what you can do to start to gain control of your life, body and emotions.

Next, read about your nutritional health

References: 1. Patient information publications. Warren Grant Magnuson Clinical Center. National Institutes of Health. http://www.cc.nih.gov/cc/patient_education/pepubs/nutrcrush.pdf. Accessed January 25, 2011. 2. Calcium and vitamin D: important at every age. NIH Osteoporosis and Related Bone Diseases National Resource Center. http://www.niams.nih.gov/Health_Info/bone/default.asp. Accessed January 25, 2011.