Living With Hashimoto’s Disease: Mixing Science and Intuition
Key takeaways:
Victoria Neglia was 21 years old when she started having strange episodes of weakness and nausea.
She found out she has Hashimoto’s disease and began to look inward to learn what helps her feel better.
Today, she focuses on her quality of life.
Victoria Neglia was diagnosed with Hashimoto’s disease in the summer of 2012, after a strange few weeks.
She was 21 years old, busy working a new job, and leading a youth community group in her free time — volunteer work she loved. One afternoon, out of the blue, she was struck by a physical feeling she describes as “a mix of nausea and almost passing out.” It passed, but it wasn’t a one-time thing.
The “feeling of unwell” returned more frequently and intensely. Episodes began clustering around meal times. Victoria started staging long, drawn-out meals, starting and stopping eating to balance the hunger pangs and nausea. Finishing these meals made her feel a little better but drained and still nauseated.
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She knew something had to change.
After a few weeks of multiple daily occurrences, she made an appointment with her primary care physician. The day she met with her doctor, she was feeling at her worst. Her doctor listened, examined her and, based on his clinical opinion, immediately referred her for bloodwork to check her thyroid status.
“Off-the-chart” test results
She waited a day or two for test results, too ill to go to work. When results arrived, her doctor urged her to see an endocrinologist at once.
The endocrinologist was kind and reassuring. He shared the findings of the results and began explaining, but Victoria wasn’t understanding everything. She told the doctor that, and he explained more plainly: “He said he’d never seen a patient with levels like these,” she recalls. The numbers were, in layman’s terms, “literally off the charts.”
For Victoria, the bloodwork results were proof that something really was wrong, which she found both reassuring and scary. She began taking levothyroxine under medical supervision. She had blood drawn and levels checked on a regular basis.
For the first several visits, her provider increased the dose. A few years ago, things leveled out. Today, she’s on a slightly lower dose than the original one.
Trying to understand a disease with no known cause
Victoria was diagnosed with Hashimoto's disease. She understood from her doctor that Hashimoto’s disease is a disorder in which the immune system attacks the thyroid. But the fact that there is no clear understanding of what prompts the immune system to attack the thyroid in the first place was “upsetting and frustrating” to her.
Victoria says her doctors “help as much as possible” but lean on test results, whereas she focuses on her quality of life. Even after her thyroid levels came into normal range and she no longer had serious bouts of feeling intensely and suddenly ill, she had flare-ups that left her physically and sometimes emotionally exhausted.
“I felt like I had chronic fatigue, and sometimes my whole body just hurt. I’d stay awake only as long as I needed to get work done, and then I’d go back to bed,” she says. A vegetarian, she decided to try eating “a normal diet,” and started eating “meat, eggs, dairy, everything.” That didn’t help her feel any more energetic or better.
So, she began reading everything she could find on Hashimoto’s. She found a book by a clinical pharmacist with Hashimoto’s disease, who described experiences Victoria could relate to. Victoria took the book in to show her doctor and asked about a theory involving gluten, but her doctor suggested that eliminating gluten in the absence of celiac disease would be adopting a fad diet.
None of the resources that Victoria’s found through her own research seem “perfect,” she says. She’s learned to trust her “gut and science, and try to figure it out from there.”
Managing triggers including stress
Based on dietary information Victoria read about, she cut out gluten, dairy, and eggs. She says she felt better on a vegan diet, so she adhered to it strictly for 2 years. At that point, she experienced reactive hypoglycemia, which she has dealt with since middle school. She added dairy back into her diet — mostly cheese, which she loves. She asked her doctor about gluten again and, slowly, on her own, reintroduced products containing it such as bread.
So far, she’s experienced no associated adverse reactions. She says her doctor has agreed that the quantity or frequency of gluten, rather than the substance itself, may be the critical factors, so she continues to carefully limit her exposure.
Victoria says stress is a big trigger for her and has several strategies to manage it. Those include meditation, journaling, therapy, and exercising, she says. Making time for meaningful hobbies — in Victoria’s case, textile arts and other creative pursuits — helps by keeping her “cup full, so [she’s] not empty.”
A significant stress-related strategy involved rethinking her work life. Victoria was working in a busy call-service center when she was diagnosed, a job she found extremely stressful. Part of effectively managing stress for her ultimately meant choosing a lower-stress occupation with more flexibility for people with chronic illnesses. Her current role fits that bill.
Another major life impact was realizing the importance of a trusting and supportive partner. She removed herself from a relationship that she identified as a “huge stressor.” She now has a partner who “tries to help and support [her] any way he can” and is a positive influence in her life.
Good support is really important, she says, whether “that means a good team of doctors, or family, or friends. Therapists, if you’re able to — or even just online support groups and books.” She advises family and friends to “just listen to people who have Hashimoto’s. If someone is telling you that they’re struggling — even if you can’t see any symptoms — believe them.”
Less spontaneous but happier
Hashimoto’s disease has made Victoria more of a planner. The condition often wears her out, so she makes sure she has enough energy before agreeing to plans. A simple visit to the zoo can make her want to sleep all day for a day or two, she says. She generally skips spontaneous activities like road trips her friends might propose.
Hashimoto’s disease has “almost forced me to know myself better,” she says. “I’ve had to look inward so much to figure out how to feel better.” She prioritizes focusing on what makes her happy. “Because, at the end of the day, if I’m stressed out and not happy, I’m going to have a flare-up. I’ll feel worse, and I’ll be even less happy.”
Going through this process has made her appreciate how short life is, she says. She asks herself, “What will really make me happiest?” then makes sure the answer makes sense in the larger scheme of things.
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