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My Journey with Thyroid Disease

According to the American Thyroid Association, nearly 20 million Americans suffer from thyroid disease. What’s most alarming is up to 60% of those with thyroid disease are unaware of their condition. Why? The symptoms associated with hyperthyroidism (overactive thyroid) – increased heart rate, irritability, nervousness, muscle weakness, weight loss, trouble sleeping, and vision problems – and the symptoms associated with hypothyroidism (underactive thyroid) – extreme fatigue, depression, forgetfulness, and weight gain – can be too vague for patients to seek medical attention. Patients may attribute these symptoms, like trouble sleeping, weight gain or loss, and irritability to other factors in their lives like family or work-related stress.

Patients with thyroid disease and who are undiagnosed are increased risk for serious medical conditions like cardiovascular disease, osteoporosis, and infertility. When initially diagnosed, patients will likely require several blood draws and medication dose adjustments to ensure the dose is appropriate for their body’s needs. If left untreated or improperly treated (i.e. not taking your medication properly or not checking thyroid levels from the blood), life-threatening consequences can occur like thyroid storm that requires immediate medical attention and hospitalization.

Thyroid disease remains close to my heart as I suffer from hypothyroidism and understand the struggles and difficulties with living with this disease. When I was 30 years old, I was diagnosed with hyperthyroidism and underwent multiple blood draws every two to three weeks for three months until my endocrinologist deemed my levels within normal range. Additionally, I also underwent several medication dose adjustments which can cause a lot of confusion for patients. Luckily, I was familiar with this disease and the medications used for treatment. Therefore, not only did I understand the importance of adhering to my medication regimen but also getting my blood draws to ensure my thyroid levels were within normal range. If my level seemed “off”, I would experience symptoms I had prior to my diagnosis – increased heart rate, trouble sleeping, severe fatigue.

As setbacks tend to happen, I unfortunately experienced an allergic reaction to my medication and developed hives after 9 months of treatment. At this point, there were two options: 1) switch medication therapy and start all over with blood draws and medication dosage adjustments or 2) undergo radioactive iodine treatment that would essentially get rid of my thyroid and leave me with permanent underactive thyroid (hypothyroidism). I was frustrated. Nothing seemed like a great choice. However, a few weeks later after my radioactive iodine treatment, I started a new medication for my hypothyroidism.

Have you ever seen the movie, “Groundhog Day” with Bill Murray? It was February 2nd for me again. Again, I underwent frequent blood draws and medication dosage adjustments to ensure my thyroid levels were within normal range. It seemed like I was stuck in this constant time-loop of always trying to make sure my thyroid levels were “perfect.” Unlike my medication for hyperthyroidism, this new medication had very specific instructions for administration: Take in the morning on an empty stomach with water. Do not drink or eat for at least 30-60 minutes after taking this medication. I can assure you these instructions are extremely important to follow. Food and beverages aside from water affect how the medication works. Blood draws must also be done prior to any food or beverage intake so it’s best to schedule these blood draws in the morning so you don’t have to fast all day.

Pregnancy requires additional blood draws and likely more frequent dose adjustments. Listen up ladies – it is absolutely imperative you remain adherent to your thyroid medication and get blood draws when ordered during your pregnancy. Your baby relies on you to provide the proper nutrients and resources for development. My endocrinologist joked with me one day in the office and said, “Once you get pregnant, I should be the first call you make to announce the news…well, I guess after you tell your husband, parents, in-laws, and siblings. Okay, I will be the fifth call you make.” I knew how important this was so when I found out I was pregnant, the second call I made was to the endocrinologist office to inform my doctor of the news so I could get a blood draw and ensure my thyroid levels were sufficient for mine and my baby’s needs. I underwent several dose adjustments during my pregnancy and was getting blood draws almost every month. February 2nd was happening all over again, but I was more than willing to relive this never-ending day knowing I would have a healthy baby.

It’ll be six years this month that I have been taking thyroid medication. I understand the struggles, frustrations, and difficulties with managing my thyroid disease. It can seem like reliving every day in Punxsutawney, Pennsylvania with the never-ending blood draws and medication dose adjustments to specific medication administration instructions. When life gets busy, I know how easy it is to skip the blood draw or forget to take my medication in the morning. I also know how difficult it can be to put your morning coffee on pause for 30-60 minutes so it doesn’t interfere with your medication (a very difficult morning routine adjustment for me!)

I share my story with you for a few reasons. First, I think it’s important to shed light on this disease that several people suffer from especially since a good majority of people don’t realize they suffer from the disease. This tiny organ does so much for our bodies, and when it’s not working properly, it affects several organ systems. It’s extremely important patient’s suffering from thyroid disease remain adherent to their medication and blood draws. Secondly, I know the patient experience with this disease. It’s a challenge to keep track of all the medication dosage adjustments and ensure proper medication administration. It’s difficult to schedule blood draws that align with your personal schedule. It’s frustrating to constantly feel “off”. With the right tools and resources, patients can receive the support they need to succeed with their medication regimen. Lastly, I want others to know that healthcare professionals like myself struggle with the daunting tasks of managing this disease. I have delayed blood draws and rescheduled doctor visits. I have unintentionally skipped doses of my medication or forgotten to wait 30-60 minutes to eat or drink after I took my medication. With the right balance, we can hopefully find a way to February 3rd.

The Author, Stephanie Hyslop, PharmD, MBA is a licensed pharmacist who received her PharmD from Purdue University in 2012 and her MBA from Butler University in 2020. Prior to joining Illuminate Health, Stephanie worked in both the retail and hospital settings for nearly 10 years. She has a passion for ensuring patients understand their medication regimens and the importance of taking their medications as directed. She strives to improve overall health outcomes for her patients, and her recent transition into the healthcare tech sector provides an innovative avenue to do such. Stephanie resides in Indianapolis with her husband Alan, son Amos, and beagle-mix Ernie.

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