Support The Huntley Family

Hi, this is hard for me to share and ask for help for household expenses during the next few months, but here it goes...

I have hypoparathyroidism {Hypoparathyroidism is a possible complication after a total thyroidectomy} and can no longer work. I took a leave from work in February to seek alternate/better treatments with more knowledgeable doctors out of state. See, my condition is rare (approx. 70k in the US) and there is currently no treatment to replace the PTH hormone that is gone. Unfortunately, since there is no treatment at this time we can only treat some of the symptoms.

For 3 years, I have been pushing through living with chronic widespread pain; constant hand and feet numbness, random tetany in all extremities, depression, anxiety, brain fog, memory loss (long and short) just to name a few. My condition has progressed and gotten worse since 2021 when I had total thyroid removal surgery. The doctor wanted to remove my thyroid for a suspicious lump and also because I had Hashimotos.

After surgery, I was discharged within a few hours. Shortly after being home I began to have symptoms. Cramping in my hands and feet. Numbness in my face, hands, and feet. My calcium plummeted and I was not doing well. It took 6 weeks for me to get back to work.

{Hypoparathyroidism represents more than half of the complications of thyroidectomy, with rates ranging from 15 to 30% for short-lived hypoparathyroidism after surgery and from 1 to 7% for permanent hypoparathyroidism.

https://www.thyroid.org/patient-thyroid-information/ct-for-patients/august-2023/vol-16-issue-8-p-11-12/#:~:text=Hypoparathyroidism%20represents%20more%20than%20half,to%207%25%20for%20permanent%20hypoparathyroidism.}

My hope and what my doctor led me to believe this would be temporary. Fast forward to a year later of seeing him every other week for lab checks and medicine adjustments he advised this is now permanent. Very small chance of ever coming back. I spent the next year doing the same thing lab checks every other week and medicine adjustments. While never having one day without symptoms. Then at the two year mark I sobbed in my doctor's office telling him I don't think I can keep working with the way I feel everyday. He advised we were already doing everything we could be and he wish there was more he could do.

This is when I decided I needed more opinions. I saw the other three endocrinologists in my town. None of them knew much about my condition nor were willing to help me.

I pushed through working and being the provider for our family for another year and as long as I could. In February I decided I was going to have to go out of state for better help.

In March 2024, I flew to MN to see an Endo at Mayo clinic. He was super knowledgeable on my condition and gave me a lot of information, however to my disappointment he had the same thing to say. I was doing everything already and unfortunately until the FDA approves a medication there is no fully getting better. He was very excited that a new medicine(TRANSCON) would be approved in May. So I went home hoping the medicine would be approved come May.

In the meantime, April I got a call from a medicine trial(CALYPSO) I was accepted into the trial and started flying to Denver every two weeks in April. I flew to Denver twice but unfortunately they found an angiomyolipoma on my right kidney and was not able to move on in the trial to the medication phase.

In May the FDA announced they were extending their review of the Transcon medicine so we will not have a answer until August.

I have been on short term leave from work at a reduced salary, however my short term leave benefits are coming to an end in August and I will take another salary reduction. At this point my doctor has advised, until we have mediction there is no getting better. So until August I do not know or have an ETA on when I can return to work. We are just looking for some help to get us through the next few months.

My hope is they approve TRANSCON in August and I can get back to work by the end of the year. It is what my doctors are recommending. I miss my job, I spent years building my career. I miss the old me. This new life has been hard adjustment. Accepting my current capabilities has been difficult.

If you made this far, THANK YOU from the bottom of my heart for taking the time to read my story.

Thank you for sharing and donating to help my family until I can get back on my feet. EVERY SHARE, PRAYER AND CARE IS SO APPRECIATED.

Megan H.

Hypoparathyroidism resources:

https://www.hypopara.org/

The video is not mine, but included for hypoparathyroidism symptoms information. https://youtu.be/MHa3uX0fH-Y?si=myskt5y_WFBddE3J