Life with Hyperparathyroidism part 1

Five years ago, I was diagnosed with Hyperparathyroidism. I went to see my family doctor because my life-long insomnia was getting worse to the point that I couldn't sleep without taking sleep aids and was more like dropping from exhaustion than sleeping. Also, my scolosis pain was getting worse and I was starting to feel serious pain in my left hip and achy pain in every other joint. My family doctor noticed in my chart that I'd never complained of these problems before other than the scolosis, so he became concerned and ordered a comprehensive blood test which showed blood Calcium and Parathyroid Hormone (PTH) levels way above normal for my age and gender. My Vitamin D was a little low as well. He referred me to an endocrinologist.

At first, my endocrinologist hoped it was the secondary type which can be reduced and controlled with vitamin D supplements and a low Calcium diet. After three years of this diet and of tests every three months, they determined that it was primary rather than secondary and surgery would be necessary.

It took another two years of tests, scans, imagery and arguing with insurance before the endocrinologist and the surgeon decided which parathyroid gland was causing the problem, how bad the problem was and what type of surgery to do to remove it. Also, during this time, they found a tumor on my thyroid which had to be biopsied twice before they decided that it was benign and only needs monitored every few years rather than removed.

During these past five years, my joint pain got worse to the point that every joint and major muscle group started hurting very badly. I started losing the feeling in my fingers and toes, especially my right side. By the time we had the surgery, I'd lost the feeling in most of my right hand. It felt like I was wearing a rubber glove. I could detect the pressure of touching things, but couldn't feel the texture of anything.

I also started having brain fog, poor memory recall, severe indigestion, mood swings, worse than usual anxiety and depression. Even my life-long double vision caused by Strabismus with a weak set of left eye muscles was getting worse to the point that I couldn't control it with eye exercises anymore. In short, I was so miserable that I didn't care too much if the surgery was life threatening or not and wasn't nervous about it by the time they scheduled it.

I had the surgery in July of 2023 and have been very gradually feeling better. The progress has been quite slow and the doctors say that it will take a couple of years for all of the symptoms to go away. It's also possible that some of my nerve damage could be permanent, we'll see. At least I'm no longer getting worse.

It's important that everybody knows about Hyperparathyroidism. Heck, many of us, including me up until five years ago, don't even know we have parathyroid glands to start with. It's a serious condition that can be life threatening if you let it go on too long.

I highly recommend checking out parathyroid.uk for more information about this.