Let me preface this by saying that my endocrinologist is wonderful. She is incredibly smart, efficient, and it helps that she understands what I do for a living and is supportive of my specialty in the medical field. I would, and have, highly recommend her to anyone seeking an endocrinologist in my area.
My pulmonologist is similarly very supportive of my condition and understands it. He makes sure he works around the condition and has a great rapport with my endocrinologist.
My primary care provider, and those in her practice, have been less supportive. The biggest problem is that they have maintained my misdiagnosis of PCOS in my chart as an active problem, and they have also not updated my actual diagnosis in my chart. This has happened with other diagnoses as well in the past.
The other big problem is not unique to my PCP, but has been an upsetting attitude from a multitude of healthcare providers, is that they look at my treatment for NCAH and make assumptions. This varies from assumptions that I gain weight because I'm on steroids, to assuming that I am prone to infections because I'm on steroids. And the worst part is that when I try to educate the providers they blow me off in a condescending manner. This leads to inaccurate information being included in my charts and a lack of appropriate response to my concerns.
At least the last time I went to my endocrinologist I got a great new line to use in those situations. In case anyone else has similar problems, here is the response my endocrinologist gave to the idea that I might be getting infections from being on steroids.
The steroid dose is not exceeding physiologic need, therefore it will not cause infections or any other issues. It simply brings my steroid level back to normal levels like the humans around me. It would be like arguing that having a normal limb causes a gait change. It would, but only if my normal gait was an abnormal gait to start with.
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