Taking an Active Role

Taking an Active Role

It's common for those suffering from Cushing's syndrome to go undiagnosed for years. Some symptoms associated with Cushing's syndrome, such as obesity, fatigue, and depression, are commonly found in the general population. Additionally, people with conditions such as hypertension, osteoporosis, diabetes, or polycystic ovarian syndrome (PCOS) may have a higher likelihood of having Cushing's syndrome as compared with the general population.1

That's why it's important to be examined by a healthcare professional who can perform the proper testing. Since Cushing's syndrome is rare, your healthcare professional may not test for it.2,3 If you suspect you have Cushing's syndrome, taking an active role will be an important step toward getting the tests you need so that your healthcare professional can make the proper diagnosis.

Get organized and do research
Present your symptoms and medical history in an orderly manner in order to maximize the time with your healthcare professional. If you're using our Symptom Tracker, you can share your results as well. Otherwise, create a timeline and list of symptoms for your healthcare professional to consider.

Tips for working with your healthcare professional
Whether you are seeking an initial diagnosis or going in for follow-up after surgery, it's important to know how to approach your healthcare professional.

Communicating effectively can help you form a good relationship. More importantly, this partnership can help you get the best care possible for your condition.

Before your visit:

Be prepared with questions.
Come prepared with questions to make sure your concerns are addressed. Whether you've done a lot of research or not, asking questions is part of the learning process. Don't be afraid to ask.

Don't do it alone.
If possible, ask a supportive person to go with you. Cushing's syndrome is complex and, even when treated, can create challenges in daily living and in communications with others. A family member or friend can support you and help keep you focused during your appointment.

During your visit:

Be prepared.
Your healthcare professional may have limited time and needs the most relevant information to make an informed decision regarding your care. Plan ahead what specific information to share with your healthcare professional.

Be clear.
Speak with your healthcare professional clearly and precisely regarding your symptoms over time. Express any concerns or anxiety you might have. It's OK to let him or her know your state of mind. Don't be afraid to speak up.

Be accurate.
Keeping a record of your symptoms in a systematic way is very helpful for your healthcare professional. Communicating an accurate timeline of symptoms, testing, and recording a list of providers you've recently seen will help your healthcare professional better understand your situation. For example, it may feel as if you have seen a hundred healthcare professionals, but creating a comprehensive list will demonstrate that you are an accurate historian, and promote a more relevant dialogue.

Keep your emotions in check.
You may be dealing with a lot of emotions when you speak with your healthcare professional. That's understandable, especially since irritability, depression, and extreme mood swings are symptoms associated with Cushing's syndrome.4 Do your best to remain as calm as possible during your visits. Remember, you're both on the same team. Not being overly emotional can help you communicate more effectively.

Ask questions.
It's important to respect your healthcare professional, but it's also important to advocate for your health and well-being. Ask your healthcare professional if you might have Cushing's syndrome and talk about the next steps in your care. If you don't agree on the plan, ask them to reconsider, or consider obtaining a second opinion. Asking them to reconsider is not a sign of disrespect. Rather, it shows that you are serious about your health. If you don't feel comfortable with the care you are receiving, it's perfectly acceptable to seek out another healthcare professional.

Stay positive and find support people to help you.
Don't get discouraged if your healthcare professional doesn't react immediately to your concerns. They often need time to think things through, do research, and process the information.

At the end of your visit:

Review your lab tests.
It's often helpful to review lab results with your healthcare professional, even if they are normal. Depending on the results, retesting may be appropriate and necessary. Repeated lab tests may be required to rule out other conditions and to gain a better understanding of what is occurring.

Ask for a copy of your lab results.
Keeping records of your lab results is important in managing your condition, especially if you've seen multiple healthcare professionals. If a copy isn't provided, don't be afraid to ask. Your medical records belong to you, and your healthcare professional must provide copies upon your request. You may be asked to pay for copy costs.

Talk about next steps.
Be sure to ask about the next steps for your care, such as follow-up appointments and anything else you can do to relieve your symptoms.

Be an empowered and informed advocate for yourself!
Don't be afraid to communicate with your healthcare professional, as this will help create a partnership-like rapport. Keep in mind that some healthcare professionals may be unfamiliar with Cushing's syndrome and may respond by recommending you change your diet and exercise habits or suggest you return in a month or two to revisit the idea of testing. If this happens, it's important not to give up and continue to keep tracking your symptoms systematically.

Remember, you know your body better than anyone else. If you still feel your healthcare professional is not addressing your concerns, it's OK to ask for a second opinion. If this is the case, be sure to look for someone with extensive experience in treating Cushing's syndrome.

Need help finding a healthcare professional with Cushing's syndrome experience? Sign up for the Cushing's Patient Advocate Program for guidance and advice.

  1. Nieman LK, Biller BMK, Findling JW, et al, eds. The Diagnosis of Cushing's Syndrome: An Endocrine Society Clinical Practice Guideline. Chevy Chase, MD: The Endocrine Society; 2008. https://www.endocrine.org/~/media/endosociety/Files/Publications/Clinical%20Practice%20Guidelines/Cushings_Guideline.pdf. Accessed April 13, 2013.
  2. Adrenal diseases: Cushing's syndrome. The facts you need to know. National Adrenal Diseases Foundation Web site. http://www.nadf.us/diseases/cushings.htm. Accessed April 13, 2013.
  3. Cushing's Syndrome and Cushing's Disease: Your Question's Answered. The Pituitary Society Web site. http://www.pituitarysociety.org/public/specific/cushing/cushings.pdf. Accessed April 13, 2013.
  4. Cushing's syndrome/disease. American Association of Neurological Surgeons Web site. http://www.aans.org/en/Patient Information/Conditions and Treatments/Cushings Disease.aspx. Accessed April 13, 2013.