In 19 years of living with pulmonary hypertension (PH), the period of greatest illness I experienced was during my sophomore year in college. It was the only time in college that I was unable to live independently on campus and had to commute from my parents’ home nearby.
About four months into it, my feet were so swollen they didn’t fit into any of my shoes, due to a painful level of fluid retention. I remember forcing my feet into my mom’s worn-in moccasins every day, which wasn’t exactly the ideal choice of footwear during a cold Minnesota winter.
I also remember pulling into my secret handicap parking spot at 7:45 each morning to give myself 15 minutes for a two-minute walk to the building that housed our nursing school.
It was a period of incredible fear and extreme exhaustion. The scariest moment was the morning I checked my oxygen saturation levels before a full day of school and found the numbers in the 70s while I was at rest — some of the lowest numbers we had seen since my diagnosis. Nevertheless, I left home — and an extremely concerned mother — to spend nine hours on campus.
The dangers of thyroid disease
Ironically, this period of extreme illness wasn’t directly caused by PH, but rather was the culmination of years of struggling to manage thyroid disease.
January is National Thyroid Awareness Month, and I was caught off guard when I found myself feeling so passionate about the issue. After all, thyroid disease — which I was diagnosed with sometime around the age of 7, a few years after my PH diagnosis — wasn’t my most concerning diagnosis.
But thyroid hormones can greatly affect someone living with PH. Thyroid disease can cause fatigue, weight loss or gain, an abnormal heart rate, an irregular heart rhythm, and feelings of stress or anxiety. All of this in a PH patient can greatly aggravate PH symptoms, and even cause worsening illness if left untreated.
Throughout my childhood, medications had been effective in managing my fluctuating thyroid levels. But as I got older and began to face the reality of an impending transplant, my medical team thought it would be best to ablate my thyroid.
This meant treating me with radioiodine, which essentially would kill the thyroid, after which I would simply take thyroid supplements. This is considered a much more stable scenario than a diseased and unpredictable thyroid. My medical team believed that ridding me of my thyroid altogether would be a lesser evil to manage as I prepared for transplant.
My first ablation right after high school ended up being unsuccessful, and I returned to the medication regimen I had always relied on. After my freshman year of college, we tried again. This time, the ablation worked, ridding me of a functional thyroid altogether and landing me on a synthetic thyroid hormone called Synthroid (levothyroxine sodium).
More challenges ahead
While all of this was good news, it also sent me into one of the sickest periods of my life. Unbeknownst to us, during those months of my sophomore year in college, my medication dosage hadn’t been adjusted to an adequate level, and I experienced incredible hypothyroidism.
This left me with a heart rate as low as 40, worsening heart failure, severe edema, and terrible fatigue. After a scary winter and an overnight stay in the hospital at the end of January that year, my mom and I both broke into tears after my bloodwork confirmed that all of it was the result of my thyroid levels, rather than the rapid overall decompensation we had all been fearing.
My experience with thyroid disease has been a lesson in the fundamentals of cause and effect. While thyroid disease can certainly wreak havoc on the body of an otherwise healthy person, it has proven to be incredibly destructive for my already frail system.
As a result of this journey, I believe it’s important for PH patients to be aware of the issues that can put extra strain on the heart — not only thyroid imbalances, but also things like electrolyte levels and even stress and anxiety. With a progressive illness, it can be easy to assume that a problem is simply due to worsening disease. But it’s always worth investigating external stressors that could push someone outside their established baseline.
Following my heart-lung transplant in 2018, managing my thyroid levels became an intense task, as I wasn’t metabolizing medications well at the time. Even today, my symptoms worsen if my thyroid levels are slightly off. It’s something the members of my medical team and I will always keep a close eye on, as we know that small irregularities can have a great impact on this rare body that I occupy.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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