A Doctor's Personal Experience of Hypoparathyroidism
by Dr Denise Adams, GP
Dr Adams is a member of our Clinical Advisory Team
My experience of Hypoparathyroidism
Four years ago I had a Thyroidectomy and Parathyroidectomy for thyroid cancer and Hyperparathyroidism (too much parathyroid hormone). I was warned that I might need treatment for Hypoparathyroidism (too little parathyroid hormone) after the surgery but I knew that most people recover and in my experience even if treatment was needed there were no problems. I was not concerned. Even when I developed post-operative hypocalcaemia, due to ‘hungry bones’, and needed intravenous calcium I did not worry. When I unexpectedly developed severe muscle weakness due to a combination of low calcium and not enough thyroid hormone I realized it might take years to recover, but I still thought I would be ‘normal’ again one day.
I was unprepared for the roller coaster of recovery. I was always tired. Some days I was plagued with buzzing and tingling and could hardly walk without my muscles hurting, burning or going into cramp. Other days I was suddenly better and amazed to find how much I could do. My guts yo-yoed between diarrhea and constipation. I found it impossible to control my calcium. I would spend weeks with symptoms of low calcium only to find that as I recovered I developed high calcium resulting in headache, nausea and drowsiness. My treatment was adjusted in a logical way, but the outcome was never predictable, and my symptoms would return when I least expected them. I found that it best to focus on improvements and ignore the troughs of worsening health that occurred in between.
What I have learned
I always thought that Hypoparathyroidism, although rare, was easily and successfully treated. This is true for many patients but not for me and I have come to accept that I am unlikely to be well in the sense that I was in the past. I still have little control over my calcium and although I hoped that when my muscles recovered I would find doses of treatment that would keep me ‘right’, this has not happened yet. The parathyroid glands are vital in the complex control of calcium metabolism. In comparison, control with drugs and diet is crude.
I have learned that calcium is a dynamic ion and realized that ionized calcium only indicates what the level is in my blood at the time it is taken. A blood test does not necessarily tell me whether it is on its way up or down or, for instance, how much there is in my muscles. I have had normal levels and felt terrible. I have had high and low levels and felt well. I have realized that symptoms may be due to rate of change rather than the absolute level of calcium. I have learned to interpret my blood tests in association with symptoms and previous levels, in order to make appropriate treatment decisions. Even then it is a ‘best guess’.
I have realized how difficult it must be for patients to continue to trust their doctors when faced with chronic illness. It was at least a year before tingling ceased being my constant companion and three years before I could get up out of a chair effortlessly. Without my medical knowledge I have wondered how I would have tolerated such prolonged ill health. Would I have lost faith in my doctors and thought I was receiving substandard treatment or that someone else could do a better job? Perhaps web sites like this will help patients to understand their illness and realistically assess their treatment. I have so far found nothing more useful than the excellent information available on this site.
The doctor-patient relationship
In my attempt to be a ‘good patient’, I combined my personal experience as a doctor, with the excellent examples set by my patients, and these are my suggestions: