"I have been able to continue working as an executive leader, pursue a side hustle and invest time and energy into my family."
Meet Ari. Ari was one of our speakers at the FDA listening session. Here is her story. Thank you Ari for being so brave and sharing your story.
Thank you for the opportunity to speak with you today.
Sixteen years ago, when I was twenty-nine, my life changed. After a routine thyroidectomy, I spent four days in the hospital with my calcium and magnesium levels crashing. It would take six months before I received a formal diagnosis of hypoPARAthyroidism, but in a matter of days I went from taking two pills a day to well over twenty; medication twice a day to six times a day, and needing to keep my own medication administration records just to keep track of them all. For the next three years, every day was a struggle.
My medical costs went up. Calcium, magnesium, vitamin d, and calcitriol were new expenses, but so were the anti-depressant/anti-anxiety medications I needed. I needed two new blood pressure medications. My doctor wrote standing orders for me to have my calcium levels drawn because I was rarely stable even with my strict compliance to taking medications on a schedule. I had trouble finding an endocrinologist who understood hypoPARAthyroidism or didn’t treat me like my symptoms were in my head, so I traveled out of state. Eventually, my now ex-husband and I filed bankruptcy due to medical debt.
The list of symptoms I experienced while on the standard of care treatment was long. There wasn’t a day that went by, even if my blood levels were normal, that I wasn’t symptomatic. For three years, I lived like this, and then in 2008, I found my way to Columbia, Dr. Rubin, and Natpara.
I was on Natpara in clinical trials until it was pulled from US markets in late 2019. Natpara was a game changer for me. The amount of oral medications I was on reduced dramatically. I was able to stop the two blood pressure medications that had been added since my diagnosis in 2005. My brain fog improved and I was experiencing less pain and cramping. I had a new sense of being able to live life. My injections were done in the morning, so I was able to plan each day. The dips in my calcium levels became more predictable and less severe. I often thought I would have been more stable if I had the option of twice a day injections, but because I was in clinical trials, this wasn’t an option.
Natpara allowed me the health to be able to work full time and finish my degree. Without it, I fear I would have ended up on disability. Instead, I was promoted several times at work, navigated a move to a new city, traveled alone, and most importantly, I got to enjoy my children.
When it was taken off the market, my life was disrupted. I took a month of FMLA while I tried to adjust to calcium and calcitriol again. I had weekly, or twice weekly blood draws and multiple alarms set for medications throughout the day. My thyroid levels became unstable. I had insomnia and excruciating fatigue. My muscles twitched, tingled, cramped, and my body was numb. My primary care doctor repeatedly tested me for UTIs, but I never had one. I was experiencing bladder pain with and after urination – something that only seems to happen when my calcium levels drop. My migraines got worse and my joints got stiff and sore.
Emotionally, I was exhausted and terrified; my depression and anxiety were getting worse.
Going back to work was a struggle. The strategies I had developed over the years for coping with minor drops didn’t work anymore. I was taking more time off, making mistakes, and not keeping up.
Early last year, I was accepted into the TransCon trial. In a very short period of time, I began to feel better than I had since my twenties. My mind was clear. Before long, I was off all oral medications, sleeping at night, and only had one timer set – for my nightly injection. I realized that I was holding long strings of numbers in my head and remembering them for long periods of time. With TransCon, I don’t experience any dips in my calcium levels, and for the first time in 16 years I am off magnesium. I have been able to continue working as an executive leader, pursue a side hustle and invest time and energy into my family. Just a few weeks ago, I was able to hike through Cuyahoga National Park with my son – something I never thought I would do again.