How to choose a doctor for your Cushing’s disease care team
Finding new doctors can be a long and sometimes frustrating process
Choosing a doctor, or a team of them, is a personal decision. Finding them can be an intimidating process, and it’s exhausting when we have to deal with people who are dismissive, who engage in medical gaslighting, or who misdiagnose us. Throughout my diagnosis and treatment journey with Cushing’s disease, I’ve had to see several doctors before I found the right ones.
It takes time, and often several appointments, to build your care team. But when you get it right, those doctors often will remain by your side for years, especially if you have a chronic illness that requires constant care.
Based on my experience, I’ve compiled some tips I hope you’ll find helpful when meeting with and choosing new doctors.
Before an appointment
Before you go to an appointment with a new doctor, it’s important to evaluate your needs. I do this by creating a list of what I’m looking for in a doctor. Some examples include:
- Someone who knows what cyclic Cushing’s disease is
- Someone who is willing to conduct the necessary tests
- Someone who has a good bedside manner
- Someone who understands the difference between polycystic ovary syndrome and the symptoms of Cushing’s disease.
Another helpful tip when deciding on a new doctor is to ask your friends or members of your community for referrals. In the Cushing’s community, choices can be limited. I think it helps in the long run to be patient and find someone who truly understands the disease.
Another factor is logistics. I realize that many specialists aren’t located close by, but I think that at least one local doctor should be on the team. My endocrinologist, for example, lives on the other side of the country, but I make the effort because he’s an expert on cyclic Cushing’s disease. Meanwhile, my primary doctor and gynecologist are located near me. I think it’s important to have doctors nearby in case of a medical emergency or a Cushing’s flare-up.
During an appointment
As a patient, you can learn a lot during your first appointment with a new doctor. Some doctors take the time to listen to their patients, while others can be dismissive. It’s important to me to have a doctor who believes what I tell them.
Some red flags I’ve noticed during first appointments include:
- Blaming health problems on a person’s weight or mental health
- Conducting only one test
- Rushing through an appointment
- Questioning a patient’s understanding of their own symptoms.
Long term
Some doctors may be great during a first appointment but not over the long term. The most important factor for me is trust. Cushing’s disease entails myriad tests, treatments, and more. I must be able to fully trust my doctors, because I’m putting my health in their hands. I look for those who seem to have my best interest at heart, who thoroughly explain my treatment options, and who show me kindness.
Don’t be afraid to advocate for yourself while building your care team, and don’t stay with a doctor who simply isn’t working out for you.
You can also follow my journey on TikTok and YouTube.
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.
About the Author
Jackie Kipilo
Thank you for sharing your story. I'm sorry you have to go through this. I live in Pittsburgh and the endocrinologist I had originally gone to had diagnosed me with secondary adrenal insufficiency due to a Rathke's Cleft Cyst. He retired last year and I had to find a new doctor. This new doctor told me that I had a 4mm solid pituitary tumor. She took me off all of the meds that the previous endo had me on because she said I didn't need them as my levels were fine. Now I have all of the symptoms of Cushings, have had two of three 24-hour urine tests come back high. I had a dexamethasone test come back as not suppressed. She insists that I have pseudo-Cushings or PCOS. I have no ovaries, nor have I ever been diagnosed with PCOS. Now she is doing a DDVAP stimulation test on me. She told me that my pituitary tumor is not causing any issues because the ACTH was normal and one cortisol blood test was normal. Told me to lose weight and the symptoms will go away. Unfortunately, she is the only pituitary specialist around. The next closest one is at Cleveland Clinic. I wondered if you wouldn't mind sharing your doctor's name with me. My husband and I are willing to travel anywhere to get me better. Thank you. Good luck in your journey.