"Sometimes I feel defeated by HPTH and sometimes I feel like freaking Wonder Woman. Life is a roller coaster."
My HPTH story started as many do, with a surgery gone wrong. In February 2015 I had my thyroid removed due to papillary cancer. I was discharged and within 10 hours my husband was rushing me to the ER in full body tetany. I remained hospitalized for 17 days as they figured out how to stabilize me and what supplements I needed at home to stay alive. It turns out it was a boatload.
I consider myself a pretty tough and resilient woman. I was born with Ollier’s, a rare bone disease that continues to cause me pain. I also deal with Lyme Disease, scoliosis, kyphosis, osteoarthritis, osteoporosis, chronic anemia, a few other conditions and I’ve endured 14 surgeries over the course of my life. I am no stranger to pain and adversity.
I was pretty determined not to let HPTH be the thing that stops me from living my life with joy, gratitude and gusto! Early on I joined all the HPTH Facebook pages and learned as much as possible about this condition. The PTSD from my 17 day hospitalization and numerous Tetany episodes reared its ugly head occasionally and so did the anxiety but I was so determined to conquer this beast.
In March 2016, thirteen months after thyroid surgery I started an Emergency Babysitter Service. I soon found myself working for 10 families and spending my days playing on the floor with toddlers, picking kids up from school and shuttling them to their various activities. I was so busy I had to turn down jobs. It was perfect for me. I loved being spontaneous, every day was different from the last and I got to spend my days playing with kids! I was energetic and focused on living my best life.
I was fairly well controlled with supplements but still ended up in the ER with Tetany a few times and dealt with the daily cramps and tingling. Mostly I was worried about my kidneys because I was taking 7,000 milligrams of calcium everyday along with 30 other pills. I searched and found an Endo who had patients on Natpara and in October 2016 I had my first injection. It helped me reduce my calcium to 2,000 milligrams and 5-10 pills a day. Having had Gastric Bypass surgery in 2000 which caused severe absorption issues, I was a perfect candidate for Natpara. Due to my bypass I have to use easily absorbed powdered calcium citrate which I weigh out in lidded cups on a jewelers scale. I’m very precise and OCD about my dosing hence my scale goes to a thousandth of a gram!
For unexplained reasons after 14 months on Natpara in December 2017 I became less stable and experienced numerous crashes and new symptoms like neuropathy in both feet and traveling shooting pains throughout my body. I kept working but in April 2018 I had to retire from babysitting all but one child who I continued to sit for until this past July. After COVID I hope to return to that job which is only 10 or so hours a week.
After the Natpara recall I immediately transitioned to Forteo. It’s taken a lot of tweaking over the last 15 months but my levels are fairly stable with extra calcium as needed. I had about 10 months of severe bone and muscle pain but that seems to be subsiding. A good day is when I don’t have to go down the stairs one step at a time. I have to be careful not to overdo it because now it takes me days to recover.
I look forward to the day TransCon becomes available and hope it works as well for me as it does for my HPTH friends who are in the study. It sounds like a game changer! One thing I’ve learned is that as I age, this condition is constantly changing and you have to be ready, willing and able to adapt. I’m 65 years old and hope to have a lot of productive, happy years ahead. Sometimes I feel defeated by HPTH and sometimes I feel like freaking Wonder Woman. Life is a roller coaster.
I want to thank all my HPTH FB friends who have been my lifeline these past 6 years. Your strength, courage, knowledge and wisdom has been insurmountable to my journey.