Learn More ♥ Live Healthier
Journey through Levothyroxine
by Nikki and Anne Heart ♥ August 27, 2026
*Although we wrote this post together, we have chosen to present the following journey through Nikki’s eyes.
Nikki’s Story: Journey through Levothyroxine
By the time I began my journey with Levothyroxine, I had already spent years on mental health prescription medications and navigating the difficult process of withdrawing from them.
Shortly after discontinuing my final medication, I began experiencing shooting pains throughout my body. I struggled to slow down, to sleep, and to regulate extreme irritability and excessive hunger. At one point, my neck became so swollen that I could not swallow food.
A standard blood test ordered by my primary care doctor revealed that I had hyperthyroidism.
Many people—and many healthcare providers—assume thyroid disease is simple to treat. A blood test for your thyroid level and a pill is all that is needed.
However, in my experience, regulating thyroid levels has been anything but simple.
My first challenge was finding an endocrinologist willing to treat my hyperthyroidism, as several dismissed me because of my mental health prescription drug history.
My second challenge came after my thyroid was ablated. The doctor who ablated my thyroid was unwilling to acknowledge that I could not tolerate higher doses of Synthroid® without adverse reactions. In fact, he was reluctant to discuss any other thyroid hormone medication.
At this point, I decided to obtain treatment advice from another endocrinologist. Still not fully understanding my own sensitivities to preservatives and other ingredients commonly found in medications, finding an endocrinologist willing to explore different medication options was no easy task. Many brushed off my adverse reactions as impossible; and in fact, one doctor stated I would die if I didn’t increase my Levothyroxine dose.
Awareness to different levothyroxine brands
After months of trying different common brands of levothyroxine prescribed by numerous endocrinologists with no real improvement, my parents started researching thyroid medications for people with sensitivities and discovered Tirosint®.
Tirosint®, a levothyroxine brand, stood out because it contains none of the additives found in many other formulations—no sugar, dyes, gluten, alcohol, or lactose. For someone like me, that mattered.
What still shocks me is that even after seeing several endocrinologists, not one ever mentioned Tirosint® as an option.
When I brought it up to my current endocrinologist, she wasn’t very familiar with Tirosint® (FDA approved 2006) and was hesitant to prescribe it. It was discouraging, but unfortunately not surprising.
With the new thyroid hormone, Tirosint®, my thyroid levels were finally beginning to level out.
Recognizing change
Unfortunately, when my lifestyle changed, I needed a different dose of medication. That’s when everything changed. I began experiencing severe eczema on my arms, sudden jolting shocks throughout my body, and other symptoms that had no clear explanation.
As time went on, the symptoms progressively got worse. After seeking numerous doctors, my mom suggested it was the new dose of Tirosint®. But no healthcare provider acknowledged this.
I suggested taking Tirosint® SOL, liquid form of Tirosint®, thinking it can possibly be the gel cap causing the reaction.
I could feel the difference immediately with the new liquid formula. Not only did I feel better, my TSH, T3, and T4 were all within range.
But then, something shifted again. Even though my levels were still in range, my body again didn’t feel well. When I brought this up to my endocrinologist, he had no answers. He told me the pharmaceutical rep hadn’t mentioned any changes.
My mom, once again determined to find an answer, started researching and contacted the manufacturer IBSA. The representative informed her that they had changed one of the inactive ingredients—and that they weren’t required to notify patients. The new formulation included coconut oil.
Suddenly everything made sense. I have a sensitivity to coconut oil, and my body was reacting to it. Once again, I found myself dealing with symptoms of an ingredient.
Without knowing where to turn next, my mom went back into research mode. She remembered a doctor mentioning a compounding pharmacy years ago—without giving any information—and decided to start there.
What she found surprised her. Not only was there a compounding pharmacy nearby, but they were able to give her clear, straightforward information right away. They explained that they could compound Tirosint® SOL using only three ingredients: levothyroxine, distilled water, and a simple cane‑sugar syrup.
I reached out to my endocrinologist and informed him of my allergic reaction to the coconut oil and the information regarding the compounding pharmacy. Without questioning, he provided the prescription the pharmacy needed.
Whether this compounded levothyroxine will be the answer is something only time can reveal. But I do know this: the compounding pharmacist has been open and patient with every question we’ve asked, offered guidance on how to take the medication, and talked through the side effects I had with past levothyroxine brands.
Most importantly, I won’t have to worry about the medication changing without my knowledge.
Learn More
♥
Live Healthier
“Knowledge becomes wisdom only after it has been put to good use.”
-Mark Twain –
Finding Wellness Tips
Hidden Triggers
Finding Your Balance
Weekly Posts Every Thursday
DON’T FORGET TO VISIT OUR NEW TIP PAGES EVERY TUESDAY
Note: All information in “Nikki’s Story and Mom’s Story” are based on detail journals covering seven years of Nikki’s life on prescription drugs.
Medical Disclaimer: We share informational resources that are intended to help you with your self-care plan. We are not professionals. We write based on personal experience and personal research.
Nothing on this Website is intended to be taken as medical advice. The information provided on the Website is intended to encourage, not replace, direct patient-health professional relationships. Always consult with your doctor before altering your medications. Adding nutritional supplements may alter the effect of medication. Any medication changes should be done only after proper evaluation and under medical supervision.
General Disclaimer: This site contains links to other internet sites. We are not endorsing any products or services in these sites nor are we endorsing or did we approve information within these sites. Each site contains its own “Privacy Policy”,