Sarah has as yet unexplained hypoparathyroidism which was diagnosed in May 2012, and may be genetic in origin.
I am a 24-year-old student. I first realised something was wrong in April 2012. I had a lot of strange symptoms including a tingly/numb face, blurred vision, lack of focus and memory, muscle weakness, spasms and twitching, mood swings and anxiety, lethargy, headache and dizziness, and pain in my jaw muscle when eating.
I went to the doctor six days after the symptoms started. I’d already had several visits to A&E in the previous ten years with unexplained tingling in my face, extreme muscle spasms, and anxiety problems but they had never tested my calcium levels. This time they gave me a blood test form for a full round of blood tests including calcium.
The results showed that my calcium levels were very low and I was admitted to hospital immediately for intravenous calcium treatment to raise my levels. During my stay in hospital they checked other blood levels including parathyroid hormone (which very low), magnesium, phosphate, vitamin D, thyroid and kidney function, which were found to be normal. They also tapped on my jaw muscles to see the reflex and put a blood pressure cuff on me for three minutes to see if my fingers twitched.
The specialist who had originally requested I be admitted to hospital also requested to take me on as a patient on a long term basis so I was lucky and there was no need to be referred. He is a specialist in metabolic medicine and takes a special interest in parathyroid problems amongst other things.
I was officially diagnosed with hypoparathyroidism in May, when I had my first appointment with the specialist. They are currently unsure as to what type of hypoparathyroidism I have, although there has been a suggestion of future tests into a genetic link. My levels of calcium were thought to have been low for a long time before being diagnosed.
My daily treatment currently consists of Alfacalcidol and calcium (Calcichew). I have learnt to take the calcium after a full meal to avoid some unpleasant side effects and to keep drinking plenty of fluids so any kidney discomfort is minimised.
‘Calcium levels should be one of the standard tests for GPs. I would have been diagnosed possibly years ago if this was the case.’
After three or four weeks my muscle twitching was no longer an issue. My memory and concentration problems haven’t improved yet, however, this is all very new and it will take time for my levels to settle down.
I am in my last year at university. This disorder has had a drastic impact on my ability to finish my final year as the memory, concentration and lethargy problems are affecting my ability to study and the anxiety problems are making it hard to complete the stressful practicals. I have also been having heart palpitations so I have to limit what I do and I am currently not driving as I have moments throughout the day when I don’t feel I am able to drive safely.
The message I would like to give on World Hypoparathyroidism Awareness Day would be that calcium levels should be one of the standard blood tests for GPs such as urea and electrolytes, as it would make it easier in detecting this disease. I would have found my condition out possibly years ago if this was the case.
Hypopara UK is doing a great job providing all the information and links to other people with the condition. However public awareness still needs to be greatly increased and other treatment options (such as parathyroid hormone) should be available.