Tips for Finding the Right Doctor

Finding the right doctor can be challenging for anyone, but it seems especially challenging for those of us in the rare disease community who are looking for specialists to help us navigate our highly specific and often little-known rare conditions.

I feel fortunate to live in a large city with many specialists, yet finding the right fit still took me time and some trial and error. This can be a daunting process, but here are my tips for finding a new doctor or specialist.

Have a related condition? Ask your current specialist for referrals

I have Graves' disease, which is an autoimmune condition related to an overactive thyroid. When I suspected that I may have thyroid eye disease, a condition often associated with Graves' disease, my endocrinologist's office was able to give me a list of recommended specialists who treat thyroid eye disease.

Inquire with a local disease center

I also have celiac disease, and here in New York City, we are fortunate to have a medical center devoted to the condition. Many people with celiac disease also have thyroid conditions. My case of celiac disease has been very stable for a decade, so I don't necessarily feel the need to go to this center.

However, if I ever need a new endocrinologist, I may decide to call the center to ask if they can simply provide me with the names of endocrinologists they recommend to their regular patients. It doesn't hurt to ask. I could also reach out to friends in the local celiac disease community to ask if any of them have a doctor at the center and if they were referred to an endocrinologist who they might recommend.

Ask a trusted doctor

Ask any doctor you respect for recommendations (you might be surprised!). I was having a discussion with my endocrinologist about a potential hormonal issue, and we got into a discussion about my recent visit to my OBGYN. I explained that I was unhappy because he said something incredibly discriminatory and offensive, and I was beginning the search for a new doctor.

Instantly, my endocrinologist recommended the OBGYN she personally sees and had nothing but the highest praise. This is the best way to find new doctors, I thought. Of course, my very excellent doctors also have medical needs themselves, and I'm sure they have very high standards.

So whenever I'm looking for a new doctor and already have an appointment with someone (no matter their specialty), I'll casually ask at the end of the appointment, "Oh, by the way, I know this isn't necessarily related, but any chance you may know of a great (insert type of doctor)?"

Same doctor, new practice

Did your favorite doctor leave their practice? Don't immediately panic. A few months ago, I received a letter from one of my favorite doctors informing me that she would be leaving her current practice. Fortunately, I'm in the maintenance stage of the condition I see her for, but I dreaded the idea of having to begin my specialist search all over again.

However, I recalled that this had happened to me before. A previous primary care doctor had sent her patients a similar letter, but she wasn't moving out of the city. She simply got a new position at a different practice. So I waited 2 months, and sure enough, when I Googled her name, she was on the faculty list at a different medical center. Upon calling to set up an appointment, the receptionist kindly told me, "Oh yes, we're receiving a lot of calls from her patients! We're so happy you found us!"

Reach out to friends in the community

When I was first diagnosed with my rare disease, I didn't know anyone else with that medical condition. However, if I had known someone, I would have immediately asked them for help. Even if they didn't live in my city, they might have another friend who does.

What tips do you have for finding a new doctor? Share in the comments below.