THE HASHIMOTO’S EXPERIENCE
I was born with a genetic predisposition for thyroid disease. I knew this before I saw reports generated by analyses of my DNA. Both my father’s mother and my own mother had thyroid disease. My paternal grandmother’s goiter is clearly visible in the picture below. I saw my mother’s goiter with my own eyes but have no pictures from that period of her life.
As a child I hypothesized that their goiters were the result of insufficient levels of iodine. (Yes, I was that child. I spent my early childhood in a segregated community in the U.S. South without routine access to physicians. My maternal grandmother was a healer. She allowed me to follow her around until I started asking inappropriate questions about sexual and reproductive issues. I paid attention. I think this is where I was introduced to the value of traditional knowledge and self-care. The more I learn from modern medical science, the more I know that my grandmother was a brilliant woman, even though she thought my curiosity about reproduction required an exorcism.)
My own experiences, as I spent decades coping with undiagnosed and misdiagnosed thyroid disease, do not support the “lack of sufficient iodine” hypothesis. Those were very difficult years characterized by a wide array of painful and energy draining symptoms. My thyroid disease was not diagnosed until the gland stopped functioning, knocked out by a medication prescribed for a condition that I do not have.
Hypothyroidism (underactive thyroid) https://www.mayoclinic.org/diseases-conditions/hypothyroidism/symptoms-causes/syc-20350284
Many people with lupus have stories about the horrors they experienced before being diagnosed correctly. My initial lupus diagnosis came quickly. My horror stories revolve around years of undiagnosed and misdiagnosed Hashimoto’s Autoimmune Thyroiditis. I lost my left knee to Hashimoto’s at age 40. But the most nightmarish part of the experience was being misdiagnosed with bipolar disorder when the changes in my energy levels and moods were in fact caused by the Hashimoto’s.
Is it Mental Illness or Hashimoto’s Disease – https://www.holtorfmed.com/mental-illness-hashimotos-disease/.
These experiences also highlighted my genetically based hypersensitivity to antidepressants. Several years ago, decades after I knew better, I succumbed to pressure from a pain management physician to try Duloxetine as a treatment for neuropathic pain. I expected to experience a brief period of hypomania which would convince my physician that it was not a good idea for me to take the drug.
Instead, the side effects were devastating. Not only did I experience a very unpleasant period of hypomania. I also experienced lightheadedness and a loss of balance. It was during this process that I fell and traumatically injured my brain. Even though I went to urgent care the day after my fall, it was more than a month before my traumatic brain injury was diagnosed.
Traumatic Brain Injury – https://www.mayoclinic.org/diseases-conditions/traumatic-brain-injury/symptoms-causes/syc-20378557
Then I tried stopping the medication. The effects of Duloxetine withdrawal sent me into a life altering downward spiral. The “brain zaps” hit me hard. I reached out on Facebook. Instead of offering me help, most of my friends and relatives ignored me. A few made fun of me. (BUNDLE UP CHILDREN: SOME OF US LIVE IN A COLD, COLD WORLD).
Cymbalta Side Effects – https://www.drugwatch.com/cymbalta/side-effects/
The physician who had prescribed the medication told me that what I claimed to be experiencing was impossible. He lashed out at me by telling me that I needed a psychiatrist. Since I am always open to that possibility, I called the psychiatrist who had been with me through the process of establishing that what appeared to be a mood disorder was in fact an autoimmune disorder of the endocrine system.
My former psychiatrist returned my call even though he was retired and was in the process of closing his office. His response was empowering.
“Ann, you do not need a new psychiatrist. You need a new pain management physician. You are an intelligent woman. No good physician is going to ignore what you have to say about your own medical history.”
I decided to tough the withdrawal out on my own. After talking to my daughter, who works in a microbiology laboratory, I bought myself a set of Norpro Mini Stainless-Steel Measuring Spoons – http://amzn.to/2MN7x2E and some Micro Scoops – https://amzn.to/2IgVFCV. While dealing with a traumatic brain injury, the side effects of Duloxetine, and Duloxetine withdrawal symptoms, I used these tools to titrate off the drug by gradually removing beads from the capsules.
One of the things that I learned from this experience is to never take drugs prescribed by a physician who has not thoroughly studied and accepted my medical history. This experience has also played an important role in the philosophy that I bring to my work as a health educator. I believe that people should know as much of their family health history as possible. They should be able to present that history in ways that health care professionals must respect. And they should be able to provide themselves with appropriate self-care. Maybe they need to consult with someone who has a graduate degree in health and nutrition education and some first-hand experience.
MY GOALS AS A HEALTH EDUCATOR
To assist people with claiming their own health history.
To assist people with understanding the value of appropriate self-care.
STILL CARING FOR MYSELF
My health history dictates that each morning, as soon as I climb out of bed, I take my thyroid hormone replacements. The failure to take them has such severe repercussions that I have put a great deal of effort into building this habit. I require a replacement for T3 as well as the standard prescription for T4. And of course, I have my favorite books.
Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A revolutionary breakthrough in understanding Hashimoto’s disease and hypothyroidism
Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment
GRATITUDE AND COMMITMENT TO TRUTH
I still have pain and fatigue. I visit an ophthalmologist for routine hydroxychloroquine toxicity screenings. That is why my cataracts were diagnosed prior to surgery and why I was recently lectured on the need to provide better care for my dry eyes. Sjogren’s adds to the pain and fatigue and to steps in the daily routine of self-care.
However, given that I was born with several skeletal defects and that my genetic propensity for autoimmune diseases was triggered in 1956, I am grateful to still be alive, upright, and moving under my own power. This has been a life long war. I survive by confronting the issues realistically. I will not be bullied into a conspiracy of silence and denial. I will not be seduced in telling lies. I will speak my own truth.
If you think that every mention of pain is indicative of powerlessness, failure, and negativity, I could probably help you too.