Medical Hero Spotlight: Kimberly Dorris, Graves’ Disease Patient Advocate

Diagnosed with Graves’ Disease

In 2007, during a routine checkup, Kimberly Dorris received abnormal bloodwork results indicating lower-than-average levels of thyroid stimulating hormone (TSH). She was referred to an endocrinologist who, after conducting further tests including an ultrasound and radioactive iodine uptake and scan, diagnosed her with Graves’ disease.

“At the time, the diagnosis was surprising,” Kimberly recalls. “But looking back, I realize I had many of the classic symptoms but attributed them to other causes.”

At the time, Kimberly had been struggling with insomnia and tremors, which she chalked up to stress from her fast-paced job and too much caffeine consumption. She also experienced muscle weakness and weight loss but had not thought they were caused by an underlying illness.

Later, Kimberly would learn that this is a common experience for people living with undiagnosed Graves’ disease. Many mistake the symptoms for stress, menopause, or other illnesses – while others are misdiagnosed with depression or anxiety.

Choosing a Treatment Plan

Graves’ disease is an autoimmune condition where the immune system mistakenly attacks the thyroid’s TSH receptors. This causes an overproduction of the TSH hormones, resulting in hyperthyroidism and its associated symptoms.

Treatment options for hyperthyroidism caused by Graves’ disease include medication to regulate thyroid hormones, surgical removal of the thyroid, or radioactive iodine treatment to destroy thyroid tissue. At the time of Kimberly’s diagnosis, antithyroid medication and radioactive iodine were the two primary treatments. “Nobody was talking about thyroidectomy as a front-line treatment option back then.”

“Neither option sounded great,” Kimberly says. “The antithyroid medication came with potential side effects. My doctors made radioactive iodine sound easy: ‘destroy your thyroid, so you’ll have hypothyroidism instead, and then take another pill to balance out your levels.’ However, the reality is more complex for patients. The connection between RAI and thyroid eye disease wasn’t widely known back in 2007.”

When it came time to choose between medication and radioactive iodine treatment, an unlikely factor influenced the decision: Kimberly was about to leave on a vacation. Before scheduling an RAIU test or radioactive iodine treatment, Kimberly’s doctor required a low-iodine diet (LID) for two weeks. This diet is standard for differentiated thyroid cancer patients prior to treatment with RAI, but is not as commonly recommended for Graves’. The diet deprives the thyroid of iodine so that it is more receptive to treatment when it begins. For two weeks prior to the RAIU test, Kimberly prepared all her meals from scratch to ensure minimal iodine consumption. Kimberly told the doctor that she wouldn’t be able to start the LID until she returned home. She was given a prescription for a generic antithyroid medication for the duration of the trip to stabilize her levels, which gave her time to consider long-term treatment options.

“The methimazole started as a temporary treatment, but it turned out to be a really good thing,” Kimberly recalls. “The medication got me to a place where I felt better and could think more clearly about my treatment. I was doing very well on the medication, so I chose to continue with it after coming home and stayed on the drug for seven years.”

By 2014, Kimberly was successfully weaned off treatment, achieving normal thyroid levels. However, this stability only lasted for two years before she began experiencing symptoms of hypothyroidism.

“I have been having a long, slow slide into hypothyroidism for the last several years, which happens to about 15% of patients,” Kimberly explains. “Managing Graves’ disease becomes a balancing act where we are constantly being monitored to ensure we stay between hyperthyroidism and hypothyroidism without sliding into either.”
Becoming A Full-Time Advocate

About a year after her diagnosis, Kimberly attended a large patient advocacy conference from the National Graves’ Disease Foundation (now the Graves’ Disease & Thyroid Foundation) to learn more about Graves’ disease and connect with others in the community. From there, she became an active member of an online message board, sparking her interest in deeper involvement. She eventually became a support group leader for the GDATF and established a local group in her home state of Arizona.

In 2010, Kimberly took on an opportunity to do contract work for the foundation and later transitioned into the full-time role. Today, she serves as the Executive Director & CEO of the GDATF.

“The foundation has really grown since its start in 1990, now serving as a supportive community for newly diagnosed patients and as a credible resource of information,” Kimberly says. “Many people who find out they have Graves’ disease or thyroid eye disease will immediately turn to Google for answers, but wading through so much information can be overwhelming – and in many cases, can be dangerously inaccurate. GDATF ensures all the information shared with patients is vetted and recommended by doctors.”

Exciting projects are underway at the GDATF, including the completion of a 24-page print newsletter, intended to share with community members and distribute at conferences. Kimberly recently co-hosted a two-part webinar with the foundation’s founder, Nancy Hord Patterson, focusing on patient survey results about thyroid eye disease. Funded by Amgen (formerly Horizon Therapeutics), the survey explored patient experiences with various treatment options and the emotional impact of the disease.

“The survey findings shed light on the emotional challenges faced by thyroid eye disease patients, which is something physicians must acknowledge and address,” Kimberly notes. “For many, the physical changes caused by the disease can make social interactions stressful and exacerbate mental health issues like anxiety and depression.”

Advice for Patients

Drawing from her personal experiences navigating the healthcare system and her ongoing work supporting the Graves’ disease and thyroid community, Kimberly offers valuable advice to patients:

Know your family history.

“After my diagnosis, I learned my grandmother had a thyroid issue earlier in her life,” Kimberly shares. “I also had a cousin diagnosed with thyroid cancer. Patients struggling to receive a diagnosis should share as much information as they can about family history, even if it seems unrelated. I didn’t know then, but Graves’ disease and other autoimmune disorders tend to cluster in families, so if there is a history of different autoimmune disorders like rheumatoid arthritis, multiple sclerosis, and lupus among your family members, that is important to tell doctors.”

Understand your treatment options, including the risk and benefits of each option.

“Make sure your doctor is thoroughly explaining all treatment options, including their risks and benefits,” Kimberly advises. “Patients who educate themselves early on about their condition and treatment options are better equipped to understand their doctors’ recommendations and to make the decision that is right for them.”

Ensure your information comes from a credible source.

“With countless opinions and alternative treatments promoted online, newly diagnosed patients should consult their doctor or reputable organizations like the GDATF or the American Thyroid Association for reliable information,” Kimberly recommends.

Don’t be afraid to seek help for mental health issues.

“A Graves’ diagnosis can be emotionally challenging. Symptoms often mimic anxiety, depression, or panic disorder,” Kimberly acknowledges. “It’s essential for individuals living with Graves’ disease to seek mental health support if needed, rather than attributing all symptoms to their thyroid. Whether through an experienced counselor or participation in support groups, patients should not hesitate to seek help.”

Resources:

https://gdatf.org/ 

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Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org