People say I’m a happy and energetic person. Those traits serve me well in my job with Highmark Health community affairs. Our team coordinates a variety of events and programs. We work with hundreds of nonprofits to improve the health of our community. Our days and nights are filled with meetings and events of every type and scale. It’s a job where you’re “on” all the time.
What people don’t see behind the scenes is that I often feel the exact opposite of that public persona. Chronic fatigue, frequent migraine headaches, high anxiety and brain fog are just a few of the issues I battle every day as a result of an autoimmune disease.
According to the American Autoimmune Related Disease Association (AARDA), more than 75 percent of the 50 million Americans with an autoimmune disease are women.
I have the first autoimmune disease ever discovered, Hashimoto’s thyroiditis, named after the specialist (Hakaru Hashimoto) who identified it in 1912. This condition means that my immune system attacks my thyroid, causing my thyroid to work too slowly. (The thyroid gland produces hormones that help regulate breathing, heart rate, body weight and much more.)
Diagnosis can be difficult for most autoimmune diseases, because the symptoms are often multiple and vague, and they can vary significantly from person to person.
For me, the first sign of trouble came in my early 30s, when I began gaining weight that I couldn’t take off. Growing up as a dancer, I had always been able to lose pounds easily when needed.
At first, I attributed my weight gain to being recently married and attending a lot of special events with great food as a part of my job. But after following the SlimFast diet to a “T” didn’t result in any weight loss, I knew something was wrong and scheduled a visit with my family doctor.
He ordered blood work that indicated an underactive thyroid. Also known as hypothyroidism, a slow thyroid can mean many conditions — Hashimoto’s is the most common cause of hypothyroidism. My doctor ordered more blood work to test for the antibodies that are an indicator for Hashimoto’s thyroiditis. I tested positive — and was sent to an endocrinologist.
For the next seven years, I was poked and prodded on a regular basis. A standard treatment for hypothyroidism is to use a synthetic thyroid hormone (Synthroid in my case — or its generic version, levothyroxine), but getting the levels right often requires ongoing trial and adjustment. I had to have blood work every few months.
As is sometimes the case, there were also overlapping issues to pay attention to. For example, I had to have ultrasounds to measure goiters and nodules — growths on the thyroid gland that can be painful, push on your windpipe and in some cases turn into cancer. I was also sent to a nutritionist to help get my weight down while my Synthroid doses were being adjusted.
To gauge whether hypothyroidism is under control, a common test measures the level of thyroid-stimulating hormone (TSH) in your blood. TSH is produced by the pituitary gland, but it rises when your thyroid doesn’t produce enough thyroid hormone. After losing 20 pounds and achieving good TSH levels for two years in a row, I was considered “stable” — which meant I only had to have blood work done annually.
I’ve been living with Hashimoto’s for 12 years now. There is no cure for the disease. Causes and risk factors for the disease are not fully understood — although women are about seven times more likely to develop it than men, and genes appear to play a role. Perhaps most frustrating: Symptoms can change daily and worsen at any time.
The challenges are … many. For example, a recent round of blood work showed that I was in a rare stage where my thyroid had become overactive — instead of underactive. As a result, my TSH was practically nonexistent. While that has meant I have more energy and my migraines have disappeared, low TSH for a prolonged period of time can cause heart palpitations and bones to weaken. So, I continue to have an open dialogue with my endocrinologist to adjust medication and other variables to get to the TSH levels that are good for me.
Like anyone living with an autoimmune disease, I’m also more prone to sickness and to developing additional chronic diseases. Since being diagnosed with Hashimoto’s, I have also developed arthritis, asthma, allergies, vitamin D deficiency (common with Hashimoto’s) and most recently, endometriosis. When I developed bronchitis and a sinus infection not long ago, I needed three rounds of antibiotics and prednisone over three months. Flu shots are a must.
It’s frustrating when you don’t know how you’ll feel each day. But I’ve found that focusing on each day and pushing through the challenges one at a time is the best path to take with an autoimmune disease like Hashimoto’s.
In addition to having a good relationship with my endocrinologist, there are a number of online support groups and resources (see sidebar) that I have found helpful. My favorites are former Baywatch star Gena Lee Nolin’s Thyroid Sexy page on Facebook and her website. Both offer a wealth of balanced information from a variety of sources.
Living with Hashimoto’s has taught me to be kind to my system — from diet and exercise to allowing more recovery time after events. I have also learned to be patient and to compromise with myself — two very hard things to do for a type A personality. I’ve had to accept that I can’t “do everything” every day. So, when I feel great, I do as much as I can. When I don’t, I allow myself that nap on the couch!
In future articles, I’ll talk more about my current treatment plan, new therapies and support groups that I’ve found, and other topics. If you have any questions or suggestions for the series, please share them through the blog’s Comments form.
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