This series of 6 blog posts tells my story and outlines the six challenges I’ve faced.
This post focuses on the delayed diagnosis of hypothyroidism.
At almost every turning point in my experience with Hashimoto’s thyroiditis, I have had to do my own research and take initiative to ask my doctors for tests that should have been done years earlier.
On top of my hypothyroid symptoms (during treatment as well as pre-treatment) and the fact that chronic hypothyroidism increases risk for other health issues (such as heart problems), I have struggled with systemic barriers in the health care system:
- Delayed diagnosis of hypothyroidism
- Misdiagnosis of thyroid-related depression
- Ignorance of Hashimoto’s autoimmunity
- Lack of regular (or any!) thyroid ultrasound testing
- Lack of testing for Free T3 and Reverse T3 levels
- Lack of referral to an endocrinologist who understands
Issue 1. Delayed diagnosis of hypothyroidism
As far as I am aware, my thyroid gland was largely killed off during years of inflammation of the thyroid that I experienced approximately between the years 1998-2002.
At the time it was happening, I did not know what it was. I was enrolled in graduate studies in a foreign country (the US) and I was struggling with other health issues (major joint inflammation from my Ankylosing Spondylitis). I thought perhaps the difficulty swallowing, the feeling of a lump in my throat, the symptoms of sleep apnea, and the deep fatigue, was related to my arthritis condition, or perhaps the oral steroid treatment I was on for my joint pain.
Since it didn’t hurt (not like my arthritis hurt!), I thought it was probably not important. The thyroid inflammation lasted for months at a time, on and off for years.
Crying in the closet
Finally, in 2003 after I had moved back to Canada and got a good academic job at a university, I suspected I might be hypothyroid … when I found myself crawled up in a closet crying for no good reason.
Why was I in a closet crying? I decided to go into the closet to somehow externally symbolize the way I was feeling, perhaps in a subconscious attempt to understand what was going on with my emotions and tears. As I sat in the closet, I reflected on my life, and realized that my life was wonderful in every objective way, by every measure that was personally meaningful to me, and therefore I had no emotional reason to cry.
So then, why did I feel so physically and mentally compelled to sob? The reflex was so overpowering it was like the need to vomit. It shook my whole body with convulsive sobs. But if you were to tell me a joke, I could laugh through the tears. I was not truly depressed, though I looked like it from the outside. My body and mind behaved like it to my subjective experience.
In the midst of this very strange and violent pseudo-emotional reaction, wouldn’t you try to figure out what disturbance might be causing it? I had always believed that moods were in the control of one’s conscious thoughts and feelings. As I found no psychological cause, I thought to myself, maybe it’s a neurochemical cause. Something biological might be tricking my brain into this mood and sobbing reflex that makes no emotional sense whatsoever.
So I did what most people do, I googled my symptoms. I came up with the strong suspicion that I might have hypothyroidism.
Asking to be tested for hypothyroidism
I took myself to a doctor and requested a thyroid blood test. After the test, I was called into the office. My TSH was astronomical, like in the 150+ mU/L range.
My doctor said “how have you been able to even walk around?”
Truthfully, looking back on my experience with hypothyroid symptoms, I wondered the same thing. I reflected back on
- my need for 2-3hour mid-day naps,
- the many times when I woke up from a sleep apnea episode gasping for air … or perhaps my pulse rate had gone too low while sleeping (bradycardia)
- the times when I laid in bed or on a couch feeling so low-energy I was not just “tired” or “drowsy” but almost comatose.
I remember my close friends telling me that I seemed to have become “arrogant and aloof” when that was not really the cause: it was just that I didn’t have the energy to smile and show active engagement on my face and vocally participate as much in conversation. It is not good for social and relational health to be hypothyroid.
I remember almost falling asleep while waiting at red traffic lights. No, it’s not good for public safety to have a hypothyroid driver on the road. I tried to nap more, even on the floor of my office when needed. To save energy for driving, I remember walking from my office to my car with my eyes closed as much as possible, opening my eyes to peek once every ten or fifteen paces.
Even more puzzling, how did I complete my PhD degree during these years, 1998 to 2002? I remember times when I would write and re-write a single paragraph and realize that 4 hours had gone by in a daze. It’s truly a miracle that my dissertation got written pre-diagnosis, pre-treatment. How can humans accomplish so much despite such serious obstacles to basic cognition and cellular energy?
Alas, why didn’t I do the symptom research earlier? (Well, as I mentioned, I was also going through an arthritis ordeal… and I was pursuing advanced studies or in the first years of my academic career, which engrossed most of my attention.)
The problem with the system
And alas, in the Canadian health care system, why don’t women get tested routinely for thyroid disorders, not even once, before the age of 35? I was 28 when I first had symptoms of an inflamed thyroid.
Thyroid disorders were not part of public education or health education classes. I was never told that thyroid disease was something I should be aware of, especially as a female, yet it is so common among women. No wonder I didn’t recognize the symptoms until my hypothyroidism was extreme and I was compelled to investigate it myself.
See the next post in this series: Issue 2. Misdiagnosis of thyroid-related depression