When the Doctor Won't Listen
Updated: Dec 13, 2018
Through my years of being a dietitian, I regularly encountered patients who were there to see me as a referral from their doctor, or as a last resort in their health journey. More often than not, I would hear stories of doctors telling patients that if they just ate right and exercised that their ailments would go away. My patients would start crying when telling stories of doctors assuming that they lead an unhealthy lifestyle and that is why they felt fatigued, couldn't sleep, had digestive problems, etc. Of course, in some cases this may have been true, it is not always the answer. I never truly understood this until recently when I experienced my very own doctor-patient bias.
I have always been thin, ever since I was a child. I actually had trouble gaining weight and people in high school would accuse me of being anorexic because of my size. This led to body image issues that did later lead to disordered eating in college and graduate school. And after becoming a dietitian, these body image issues remained and I did everything I could to eat clean and run regularly to keep my weight down so I could be a healthy image to my future clients. I started training for marathons around 2009 and ran five marathons in the following six years. As of Spring 2016, before moving to Oregon from Maryland for my husband's job, I was 119 lbs and 19% body fat with more energy than ever.
After moving to Oregon, I was out of work from April to October 2016, but tried to get out and run or walk most days of the week. I had been suffering from chronic hives that started in October 2014 after stopping my long-term birth control though, so I started going to an acupuncturist. I also started a new doctor at this time and was found to have low vitamin D levels, which was very common in Oregon. After starting a high dose of vitamin D, I gained 10 lbs in 2 weeks. I called my doctor and she took me off the high dose vitamin D immediately and started me on a lower dose. The weight stayed on and started going up.
Fast forward to February 2017, I started going to a naturopath for chronic constipation and digestive cramps I was dealing with. I was up to 137 lbs and felt anxious and so tired I sometimes had to literally crawl up the stairs to put away clothes or go to bed. After a battery of labs on my thyroid, antibodies, and adrenals, my naturopath diagnosed me with stage 1 adrenal fatigue and put me on an elimination diet that was gluten-free, dairy-free, egg-free for three months. TSH, or thyroid-stimulating hormone, was normal at 1.2. During this time I miraculously lost 8 lbs and started to feel more energy. That didn't last long.
Back in March 2017, my husband lost his job and developed depression. Finances were strained and needless to say life was stressful. I started writing and doing remote jobs in the evenings when I came home from work at my full-time job as a bariatric dietitian. I was sleep-deprived, tired as ever, and had no energy. I lived on caffeine, but still managed to track my eating every day and try to get my walks in during my lunch break at work. In July 2017, I had a colonoscopy as part of my GI consult, and a polyp was found and removed.
This led to more tests and a diagnosis of IBS-C, or irritable bowel syndrome with constipation in October 2017. Around the time of this diagnosis, the weight started piling back on with a vengeance. I went from 129# in Aug/Sept. 2017 to 136# by November 2017, and 143# by January 2018. With no change in my diet or exercise routine and a cleaner diet than ever, I reached a high of 153# by September 2018.
Rewind back a few months to May 2018 when I visited my mom in Maryland. She looked at me and said, "I didn't want to say anything, but your neck looks like you have a goiter. You should get that checked out." I responded in hesitation that she was overreacting. Its probably just from my recent weight gain, I thought. However, I decided to get it checked out anyway after my friend, who I met with later that day, said that another friend of hers had a swollen neck and it turned out to be a thyroid tumor that she had to have removed. So, I went to the doctor.
May 2018: I go to the doctor and she says that my thyroid is swollen. She orders a thyroid panel. TSH, or thyroid-stimulating hormone, was normal at 2.09. I tell her all of my symptoms: insomnia, fatigue, low energy, thinning hair, unexplained weight gain. She puts me on a thyroid support supplement for 30 days to see if the swelling goes down. Energy improves a bit while on the supplement, but does nothing for my neck. She recommends an ultrasound on my neck.
June 2018: I get an ultrasound on my neck. They found two thyroid nodules. One was about 9.5mm, slightly below the 1cm cutoff for a biopsy. I ask to be referred to an endocrinologist. My doctor refers me to an endocrinologist.
August 30, 2018: I go to the endocrinologist and as soon as I sat down a medical resident talks to me for a few minutes about my symptoms. I get my blood pressure, temperature, and weight checked, and they rub my neck a bit to check my thyroid. The doctor then comes in, says that "weight gain is not related to the thyroid and can be caused by a number of different things." She then proceeds to do a fine needle aspiration biopsy on my larger nodule. Test results come back benign, which is good. But the only follow up that was done was a phone call from the receptionist saying I needed to have a follow up ultrasound in a year. So, I continue to live with the symptoms and they keep getting worse.
September 12, 2018: I get a second opinion from another endocrinologist. The reviews online about her were very good. She had helped other people that needed second opinions, so I made the appointment. She listened to my concerns, I told her my symptoms, and she said "Looking at your labs, it looks like you have metabolic syndrome. Your HDL is below 50 and your triglycerides are above 150, and your BMI is in the overweight range." She said she assumed I ate healthy because I was a dietitian, so urged me to keep doing that. I asked her about my neck and she said that my thyroid was very large, but that she was positive I had metabolic syndrome. I asked for a cortisol test because I suspected I might have Cushing's syndrome. She agreed to one 24-urine cortisol test, ordered a new panel of labs, put me on a low-dose prednisone prescription for 5 days to try to reduce my neck swelling, and told me to wait until after the cortisol test to start the metformin and prednisone. I followed instructions.
September 13, 2018: I had my labs done. All labs were normal, HgA1C, blood glucose, cholesterol, HDL. The only thing slightly abnormal were my triglycerides (normal =150 or less; my lab=165). TSH, or thyroid-stimulating hormone, was "normal" at 2.9 (up 1.7 from last year). Urinary cortisol was normal. IThe prednisone made my insomnia wayyyy worse, and I barely slept the whole 5 days I was on it. So I emailed my doctor about my concerns and next steps hoping for some follow up testing since urinary cortisol was supposed to be repeats 2 to 3 times and serum tests were suppose to be done to correlate with these tests for potential diagnosis. The only response I got was "eat plenty of fiber, exercise 30 minutes a day, start on the metformin, and see [me] in a few weeks for follow up."
I was so upset by the lack of followup care that I called my mom and just cried on the phone for about 30 minutes. I felt like doctors were just disregarding my concerns because they assumed that I just had a poor diet and needed to get my butt moving to lose this weight. And even though my TSH had been slowly trending up over the past year, it was still considered "normal," so they ignored it. I wasn't going to wait a year until I had full-blown hypothyroidism to get treatment. I wanted answers.
Because of these developments, I have decided to extend my upcoming visit to Maryland with my family so I can see a specialist at Johns Hopkins Hospital. I have decided that I am not leaving the doctor's office until they order every test and scan possible to find out what is causing my symptoms. I feel sometimes like I am going crazy and that maybe the doctors are right and I am fine. But in my heart I know that is not true. I eat no more than 1500 calories a day, am always on the go, and the weight is not moving. I went to the hair stylist the other day to get my hair cut and did not recognize the woman in the mirror. There are moments I think that my old body image issues are coming back, but then I remind myself that my swollen thyroid is not normal.
I am excited to share this journey with you and will be posting weekly updates. I hope that somewhere out there I can help someone else who is reading this remember that you are your best advocate. Doctors are human and can make mistakes. You know your body best. Fight for your best health. You deserve it. Until next time...