Patient Stories

This was written in response to the HypoPARA Association asking for experience stories to bring to the FDA so that more funding for research and treatment development can come about.

As a way of introduction, I’m a 58-year-old physical therapist, and an active, adventurous woman. I have always thought of myself as self-reliant, physically and emotionally strong, and resilient. Give me a challenge, I will find a way to make my way through it. So when I was diagnosed with Hyperparathyroid disease (an over active and enlarged parathyroid gland) in 2015 I was eager to treat it, recover, and continue as normal.

The most common treatment for Hyperparathyroid disease is surgery to remove the "bad glands." All four of my parathyroid glands were overactive leaving me with just a small piece intact, which was supposed to take over calcium regulation for my whole body on its own. This would work, I would be fine.

Well, a year later I was still hypoparathyroid. The standard of care of calcium and Calcitriol was not controlling my calcium level very well. I had resumed my full time job and started back to my active lifestyle but was suffering from multiple symptoms ranging from severe muscle cramps, tingling in my feet and hands, and twitches in my face. I also had difficulty focusing, memory issues, low energy, nausea and weakness.

Around this time I discovered that in addition to not controlling my symptoms well, the standard of care was allowing dangerously high levels of calcium to my kidneys. This occurring two years after my first diagnosis qualified me for a new medication called Natpara, a prescription parathyroid hormone used with calcium and vitamin D to control low blood calcium.

Natpara is only approved for once a day injections and that wasn't enough for me so I started using it off-label by injecting two times a day. This improved my muscle cramping but still was not perfect because my kidneys remained overburdened and at risk. To avoid needing a diuretic to protect my kidneys, Dr. Mannstadt, in 2019, was willing to let me try injecting three times a day.

My urine calcium was now in the low normal range! I felt much better and my calcium levels were more stable. Most importantly my kidneys were out of danger. It was hard to draw such a small amount of medication into the syringe from the pen that is used for Natpara, but I was able to go back to increasing my activity levels. I had figured out how to take my medication with me on backpack trips and long bike rides. I felt like myself again.

I had a few really good months, but in September 2019 Natpara was taken off the market due to a mechanical issue with the rubber stopper. It seemed to me this would be temporary. How hard is it to replace a rubber stopper?

Having to replace using Natpara I went on Forteo, a PTH hormone, which is designed to stimulate bone in people with osteoporosis. For some reason this medication was not working for me like Natpara. I was getting excessive calcium in my urine again even while injecting three times a day. I considered injecting four times a day, but that did not seem too practical.

The worst part for me was Forteo's impact to my quality of life both physically and mentally. I had a hard time focusing. I’m a physical therapist. I once assessed the right limb of a patient lying on a treatment table and then walked around the table to assess the left limb but forgot why I walked around the table! Worse, I said out loud, “I don’t know why I’m over here." My patient was extremely compassionate, but I was really freaked out. It is humiliating and starts to take a toll on your self confidence when you experience multiple episodes of your brain not working well. After eight hours at work I would be mentally and physically exhausted -- completely unable to function.

Forteo and my body were not doing well. At this point, I was often anxious before doing the fun activities I loved like hiking, biking, and running. I never knew if my level would drop and I would suffer weakness, pain, or foggy brain function. I was once doing some winter hiking in a remote area and I just got slower and slower until I simply couldn’t go any more. I couldn’t even lift my arms. I couldn’t speak well and only managed to cry. This was very scary. Thank goodness I wasn’t alone.

In the fall of 2020, Forteo was still causing excessive calcium in my urine. Dr. Mannstadt suggested the off-label use of an insulin pump delivery system. This worked great for three weeks; I had so much energy and was symptom free for the first time!

Unfortunately, after three weeks my calcium levels began to drop. It may have been that the low dose of Forteo was not stable as it entered my tissue and would break down before I could use it all. My calcium levels started getting very low. Eventually, after two months, my medication dose had doubled.

I had to get my blood drawn to check calcium levels several times a week. Initially I was going to the local lab waiting 2 days to get my result. That wasn’t very useful but I kept a log so I could correlate my symptoms to my level after the fact. While I waited for the results I would adjust my level blindly based on my symptoms.

I now drive 35 minutes so I can get my results in two hours allowing me to adjust my dose in real time. This is so helpful and I feel grateful for it, but it’s over an hour of driving. We are still working on getting the level right four and a half months since I started the pump. It takes several days a week of getting my blood drawn to check my levels and adjust my medication. At this point, my dosing is now going in the other direction and I’m constantly having high calcium levels. Why?

I can tell you that at the back of my mind I’m always wondering what my future life will look like as my condition is not under control. Will I have kidney disease, blood clots and stroke, a heart condition, even more severe memory issues? Selfishly, I want to be able to check my calcium level then head off on a six hour hike in the White Mountains confident that I will be just fine. I know some folks simply want to stay out of the ER. Obviously, having hypoparathyroidism means lives will always be altered from the norm, but having available to us the tools to manage our condition seems more than reasonable.

I plead with you to see that we need more funding for research. I believe this research will discover more effective treatments such as medication options to fit individual needs and a device to measure our calcium levels at home so we can adjust our medication as needed. I’m grateful for Dr Mannstadt and the others who keep helping and supporting us as we try off- label methods in order to get some quality of life back. Is it too much to ask for Natpara to be back on the market and devices that will tremendously improve the quality of life for myself and others with hypoparathyroidism to be approved? We would be so grateful and relieved if they were.

Thank you for the this opportunity to share my experience with Hypoparathyriod disease and its related treatments with you today.