Here some of our members share their experiences of being diagnosed with, and treated for, rare parathyroid conditions. If you’d like to share your story here please contact us.
There is still life with hypoparathyroidism. PTH (human parathyroid hormone) may not cure everybody, but it’s as close to it as I have come.
I asked my GP to refer me for a second opinion, knowing that I needed surgery, but he refused. I left the GP practice that day and joined my partners’ GP surgery. Within a couple of weeks, I had an appointment with my new GP who was very helpful and understanding
There are times, particularly when I have healthy periods, the last thing I want to do is to reflect on my chronic illness. But there are also times when I want to engage with people who understand—really understand—the unique challenges of this condition.
I hope my experience will inform others and make them more aware. Never be afraid to ask and voice your concerns about being pregnant and having hypoparathyroidism.
I had a blood test for vague symptoms, when my doctor noticed my calcium was slightly high. I was on the internet straight away looking for causes for high calcium, when I came across a site for hyperparathyroidism…. I couldn’t believe it when I read the list of symptoms … bones, stones, moans, and groans! Apart from kidney stones, I had the lot!
In April last year I was lucky enough to get funding to try this drug as I was so difficult to manage on the other drugs. I am happy to say that since starting the injections my quality of life is hugely improved. My calcium level is much more stable, and as a consequence I can do much more of what I have planned.
I decided to get a second opinion and after doing my own research online I discovered the Hypopara UK and this is where I received the most helpful, understanding and positive advice that I could have had. This led me to make a private appointment with a consultant in endocrine surgery at the Hammersmith Hospital in London.
Jan Cobley had surgery for hyperparathyroidism and now has hypoparathyroidism. But she doesn’t let it get her down, especially with her dog Cleo at her side! In 1999 Jan Cobley and her husband Jim had decided to invest in a rental property in Portugal when their plans had to go on hold while Jan was […]