A Doctor’s Personal Experience of Hypoparathyroidism
by Dr Denise Adams, GP
Dr Adams is a member of our Clinical Advisory Team. She is a GP as well as a patient with Hypoparathyroidism. She hopes that sharing her experience in both roles will help others with this rare, chronic disease cope with their illness and their doctor.
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 realised 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 websites 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:
- Always carry a list of medication and medical problems with you and make sure they are both up to date when you see your doctor. My medical history is now so complex that, despite being a doctor, I have difficulty remembering everything.
- It is virtually impossible to keep medical records in a way that makes treatment decisions easy. Consider organizing your own database of drug dosages and blood test results in relationship to your symptoms. Keeping this information updated is surprisingly time consuming and it is no wonder that doctors’ records can never be as good.
- Make suggestions about treatment even if in the end you follow alternative advice from your doctor. Thinking about the management of chronic illness is part of the learning process. The more you have learned, the more you will feel in control when problems occur.
- Take a list of questions, in order of importance, when you go to see the doctor. I know some doctors do not like lists but I think it helps focus the discussion on the main problems.
- There is no doubt that it is best to be well informed about this rare illness. Many doctors know very little about it and if you need to seek help you may have to tell the doctor what to do. Remember that doctors interpret symptoms starting with the most common explanation. Hypoparathyroidism is not common and it is important to make it clear that you have this rare problem.
- Do not hesitate to tell the doctor if you think an error of any sort has been made. We all make mistakes and you can help to prevent them.
- When traveling carry plenty of medication. It is not always possible to get the same drugs in other countries. I have seen patients who put their medication in their check-in luggage only to find that it did not arrive at their destination with them. It has taken hours to replace their loss and sometimes, less than ideal alternatives, have had to be used. To avoid this problem always carry more than enough medication for your travels in two separate places.
Communication problems
It is very apparent from this web site that some patients have unsatisfactory interactions with their doctor. Unfortunately neither doctors nor patients are perfect. If you have problems communicating with your doctor then it might be worth considering a few points.
- Was your interpretation of the discussion accurate? I am constantly astounded at the many ways doctor-patient interactions can be misinterpreted. If in doubt ask to have any problems clarified.
- Use your list of questions to focus on your most important problems. Often the aspect of the illness most vital to the patient is of little importance to the doctor. Doctors tend to focus on the problem they think they can help and sometimes completely miss the point. Mismatched expectations lead to misunderstanding and frustration. Be assertive and never hesitate to discuss what bothers you most.
- Individuals with the same illness may have many different symptoms and doctors often lack explanations for all of them. As a consequence some patients feel their doctor has not listened to them. This may be true or, as with any rare disease, it may be that the doctor is lacking in specialist knowledge. However, although it can be disappointing not to have an explanation, many symptoms are never really understood but disappear with the passage of time. It can be very important to just be patient.
- If you usually have good interactions with your doctor try to be forgiving if you have an unsatisfactory session. Doctors have bad days too. Also remember that consultations are two-way interactions. I have noticed that as a patient I become prone to misinterpretation of information. Somehow being ill makes me feel vulnerable and I tend to interpret actions and information in an irrational and usually negative way. If there is a problem try to discuss it with your doctor. You may find that all is not as you thought.
- If at the end of the day you find that you do have an unsatisfactory relationship with your doctor then, if possible, find another one. The treatment may be the same but the way it is communicated to you may make all the difference.
Hypoparathyroidism is a rare, chronic disease that is usually easily and successfully treated. However, there are a number of causes, each patient is different, and some have more problems than others do. As individuals we have to work out the best way to deal with our illness with guidance from our doctors. Be assertive and take an active role in the management of your illness and in time I hope you will find that your doctor-patient relationship transforms into an empowering doctor-patient partnership.