When My Doctor Didn’t Believe I Knew What Was Best For My Body

Last year my pediatric gastrointestinal (GI) doctor of over 20 years decided to push me out of the nest and transition me to an adult GI doctor. During my hospitalization last year, I faired well with the change in doctors, as my new doctor and I started the song and dance of a newly established patient-doctor relationship.

My doctor specializes in short bowel syndrome, which is one of my conditions courtesy of my surgeries related to familial adenomatous polyposis. At my appointment three months ago, my doctor explained that I have the proper sections of my small intestine required for absorption of iron and B12, and I therefore do not require these medications. My hair stood on end. I knew differently. I’ve been taking these medications since my first surgery at age 9. I knew better. However, in a stubborn fit of wanting to prove my self-knowledge and gaining my doctor’s trust in my knowledge, I agreed to forgo my medications for a three-month trial.

I was unable to complete the three-month trial without my B12. I began to experience exhaustion, sensitivity to light and numbness in my extremeties. I began to worry about the security of my employment under these conditions, as well as my daily ability to function. Two weeks prior to the end of the trial period, I restarted my daily B12 microlozenges and started to return to my previous state of health. However, I was able to forgo the iron the entire three months.

Lab day came, and it was a showdown between my doctor and me. Who would be right? Who knew me better? He argued my iron and B12 wouldn’t drop much in the course of three months from where my levels had previously been.

My B12 level was excellent — but I had also restarted my B12 two weeks earlier. With the results skewed, we’ll never know how low it had been. I’m OK with that. I was more worried about my iron at this point. Ding ding, we have a winner. Without an ounce of surprise, my body held true to its trends. I do require iron and B12 and was ordered to immediately restart my iron.

At my appointment I requested an ultrasound of my thyroid, as annual screening is recommended due to the elevated risk of thyroid cancer associated with familial polyposis. My doctor found annual screening to be overboard, but nevertheless consented. I’m grateful he proceeded to order my thyroid ultrasound for that day, as a small solid nodule was found in both lobes of my thyroid. Although most likely benign, it will be important to continue monitoring these nodules.

With my body following my expectations, I’m hopeful my doctor has gained trust in my self-knowledge and understanding of myself. My body doesn’t follow textbook protocols and never has. The sooner my doctors realize and accept this reality, the better it is for my care. Perhaps now he will listen to me more, with less argument about what my body does.

Sometimes doctor-patient relationships require give and take from both parties as the relationship grows into a partnership for care. Any new doctor-patient relationship may experience a few bumpy courses as both parties learn the ways of one another and progress towards a mutual understanding. If you are finding yourself on a bumpy course with your doctor, be open with your doctor about your concerns and work toward a compromise together. Although my doctor doesn’t always see eye-to-eye with me, I’m grateful he has been cooperative with my medical requests as our relationship becomes cemented.

Follow this journey on Life’s a Polyp.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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