Common Frustrations with Medical Providers

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.

A Few Years Out

I need to be more strict about taking my medication. My endocrinologist asked me to be "obsessive" about it. I've never had a doctor ask me to be obsessive about something before.

I take one pill every night, that's all I have to do to be okay most of the time. If I need surgery or if I got really ill I might need IV doses of the steroid, but otherwise just one tiny pill every night is enough. 

And yet I still sometimes forget to take it. When I get stressed, that's when I tend to miss taking it the most. It gives me a feeling of control in my life, when maybe at work things feel out of control or my commute is frustrating or I'm just tired. Taking my medication is a choice that I have. And when I just do what I'm supposed to do and take it, that doesn't feel like making a choice, even though it is. So sometimes I skip it. Sometimes deliberately but more often than not I just forget.

I was reminded of how important it was last week. I saw my endocrinologist for my yearly check up and I had been stressed a lot recently and not taking my medication. They always draw blood as part of the check up to make sure my hormones are in control. Everything was okay except for my 17-OH-progesterone was really high. 

For perspective, normal adult levels of 17-OH-progesterone are 200 ng/dL. Last year, my values were in the 300's, higher than the year before, but acceptable to my doctor. Again, I was missing my medications sometimes then too, but not as much as this year. This year, my values were in the 800's. My endocrinologist was alarmed until I admitted that I haven't been as careful with taking my meds as I should be. Now I have to go back in 3 months and have blood drawn again and hope that the values are better. If they're not, we'll have to change medication or increase the dose.

She explained that every time I miss a dose, my hormone levels move way out of control, even if I take the dose next time. In order to keep my body functioning in a stable manner, I have to take the pill every evening. In addition, my medication allows me to cope with stress physically, and when I fail to take it I open myself up to increased risk of illness and exhaustion. 

I didn't realize just how dangerous my decision to not take my meds, or at best my decision to not be careful about taking my meds, might be for my health. Hopefully my increased vigilance around taking my medication will help me have fewer infections and keep me from getting sick as readily as I have been this year. 

Soon I will publish a post on some common frustrations I have when interacting with medical personnel who don't understand what NCAH is or who don't understand the purpose of my medication and how it interacts in my system.