One in 1.2 million: My hyperparathyroidism story

Hyperparathyroidism. It’s a bit of a mouthful, isn’t it? Put simply, it means you produce too much parathyroid hormone, as opposed to hypoparathyroidism, which involves producing too little. This year, 1st June is World Hypopara Day, an attempt raise awareness of this rare disease and its impact. This is welcomed by the many who suffer from this little-known condition with its variants.

Imagine growing up with a stone constantly in your shoe. Even when you change shoes, the stone was dutifully put in for you and eventually you learn to accommodate it. You walk with it, compensate for the limp it causes, try to get on as best you can, except perhaps you couldn’t run as fast as the others, if at all. The presence of the stone would become an accepted limitation, just as parathyroid is.

In my 50s, I was beginning to accept the inevitable changes that come with age. My motivation and concentration were down, and there was a sense of being less spontaneous in life. Over the years, I’d acquired a view that life was more of a struggle than a pleasure, chequered with only moments of occasional lightness. I watched other people’s motivation and energy, but it all seemed to be just too great an effort for me as the years went by. Of course, turning up to the doctor constantly saying that things just “didn’t feel quite right” inevitably made depression the prime candidate. It took years and insistence before, in my 58th year, I was diagnosed with norm calcaemic hyperparathyroidism. Joining the dots, many other conditions I’d had in the preceding 20 years, from palpitations through to the occasional bony lump, could be ascribed to the condition, after previously regarded as “idiopathic” in nature, symptoms without an obvious cause.

Confidence around the diagnosis was not strengthened, as after being pronounced clear, I was recalled to the surgery to told that was not the case and shown details of the condition on Wikipedia by an inexperienced locum. Given that parathyroid conditions are rare, they often hide in plain sight and are subject to misdiagnosis. If ever there was an argument for consistency in the relationship between patient and doctor, it is in the case of conditions such as these. Only knowledge of the patient over a long period of time, learning their medical history, can offer clues and allow for more subtle reasoning and investigation. The disjointedness within UK’s primary care as a result of retiring GPs and failed workforce planning around their replacements will leave many deprived of early diagnosis.

An eventual visit to a consultant endocrinologist made a huge difference and cast light on the condition, and stopped me feeling like a spent force. For years I’d been suffering from poor sleep, palpitations, and low energy. Most of all, being somebody who was regarded as a young man as “dynamic”, was the pain of believing I was over the hill, accompanied by a sense that old age would dampen my likely enjoyment of life. The cracks really showed about five years ago when on top of running a business, I started a doctorate. My focus, concentration and motivation were hit with a double whammy of disappointing course administration and my own lost volition, the latter a key symptom, hiding in plain sight whilst typically being attributed to age.

Various medical conditions suggested that I’d had the condition between 12 and 20 years. The normocalcaemic nature of the condition would have appeared to offer some protective factors, compared to those who have calcaemic conditions. My condition, it seems, is even rarer than hyperparathyroidism in its usual presentation. It usually affects around one in a thousand of the population, three out of four of which are female. I carefully selected a surgeon for my operation, which was portrayed as a complete cure in all but a tiny minority of cases, and had two glands removed with the hope that was an end to the matter.

Post-operatively, I felt great and like I was beginning to get my life back. It was short lived, however, as only six months later, my parathyroid levels began to rise again and are still currently under investigation as to whether a secondary condition accompanies the primary one, or if something has been missed. Not to have a cure places me in the fewer than 2% of cases that have postsurgical difficulties. My endocrinologist is dealing with 720 cases of hyperparathyroidism or hypoparathyroidism but only two, myself included, have this variant or circumstance. This puts me in the position of being one in 1.2 million, I am advised, in terms of both incidence and circumstance.

I’m currently undergoing a battery of tests, being referred to specialist professors and others, but I feel relatively well whilst I maintain high vitamin D levels. I conclude although I’m not out of the woods, chronic vitamin D deficiency as a result of the condition being around for so long was probably the culprit for 75% of my symptoms, with the problem of mutated glands contributing somewhat less directly but creating the vitamin deficiency condition.

Whilst these conditions are rare, they may account for a range of conditions misattributed to age, depression or other easier to explain ailments. Many doctors are unfamiliar with the more unusual conditions and its patients, therefore it’s important that we persist when things are not quite right, rather than simply accommodating our problems as an inevitable burden.

It’s also important for people to understand what it is to suffer from a rare and obscure condition. It is a tall order sometimes, as it takes some understanding by the patients themselves and so it is often hard to communicate just how it feels to those around you.The loss of interest and volition, the traditional “bones, moans and groans with psychiatric overtones” attributed to the condition diminish one’s enjoyment of life, make one feel non-functional and sometimes one is met with relatively little understanding by others, even when the matters is diagnosed. Let’s face it, how many people even know about the existence of the Parathyroid Glands, let alone their function/dysfunction?