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.

I have been a hypo parathyroid patient for 5 ½ years due to Papillary Thyroid Cancer in 2015. At the time of my cancer diagnosis, I was told by my oncology surgeon, primary care physician, and endocrinologist that I would be “just fine”. Little did I know, I would not be “just fine”. In the past 5 ½ years, I have been over medicated, under medicated, hospitalized for depression and threatening suicide, prescribed anti-depressants, prescribed anti-anxiety medication, worked with a therapist to ease my anxiety and depression. I have had to cancel family vacations, family outings and activities with my children and grandchildren. I had to leave my teaching career as a Special Education teacher for 7th and 8th grade students. I have had to give up running (3 – 5 miles at a time), riding my paddle board in the summers, riding my bike (5 – 6 miles at a time) and simple things like walking through the woods. Hypoparathyroidism has completely altered my life and my husband’s life. We need your help!! 

This disease has cost us thousands of dollars trying to find a therapy and/or a combination of therapies that would manage this disease and improve the quality of my life, our lives. We have spent thousands of dollars on prescriptions, different brands of calcium, different brands of magnesium, different brands of Vitamin D3, as over the counter supplements are not all equal in quality. We have spent thousands of dollars on trips to the emergency room for low calcium symptoms, 2 trips from Michigan to Mayo Clinic in Minnesota, numerous trips to Henry Ford Hospital in Detroit and now trips to Ann Arbor, Michigan. We need your help! 

The Standard of Care for Hypoparathyroidism does not work for me. I was prescribed Natpara. However, I could not continue taking Natpara, even before it was recalled, because it caused my body to go into hypercalcemia. I have been prescribed Calcitriol, from 1.25mcg down to 0.1mcg. I cannot take Calcitriol due to severe side effects. On Calcitriol, I have experienced heart palpitations, severe headaches, insomnia, fatigue, dizziness, muscle aches, bone pain, panic attacks and high anxiety. I need your help! 

Currently, I am taking 3200mg of calcium carbonate, 3200 mg of calcium citrate, an additional 4 - 5 (1000mg) Tums, 200-300 mg of magnesium, 2000mg of over-the-counter Vitamin D3.  These supplements total about 30 pills that I swallow every day. I wear a Fitbit with 8 alarms set to keep me on track with taking all these pills each and every day! I need your help! 

Today, my kidneys are managing the high amount of calcium with no problems. But, over time my kidneys may not be fine. In the back of my mind, I am constantly stressing about when my kidneys will develop kidney stones? When will my kidneys fail due to the amount of calcium that I take each and every day? I need your help!

 We need your help!

I have begun using a Vitamin D UVB lamp, in hopes that it will help me. This is an unproven and unresearched method to improve Vitamin D levels in hypo parathyroid patients. I have now begun stressing about developing skin cancer from the UVB rays. So, I have added a dermatologist into my care plan. This disease has become a no-win situation for me. However, I have no other options available to me. I need your help!