Hypoparathyroidism is a difficult condition to manage. While many patients with hypoparathyroidism will settle well on their medication quite quickly, others may take longer to stabilise and some never do. ‘Brittle’ types may experience lifelong unstable calcium levels.
For all of us, however, there are some facts worth knowing and some tips which really help – we have tried and tested them over the years. As this is a rare condition that you may not see very often we have compiled this list and hope you will find them useful. These are the things we need you to know.
All patients require careful, ongoing management and regular testing.
- Different strokes for different folks.
It is important to know that different people will experience different symptoms at the same levels – this is an extremely individual condition.
- Symptoms within the normal range.
As the normal reference range for calcium was set up using healthy people, it does not always apply to those with hypopara. Many patients are symptomatic within the ‘normal’ range and most also have an individual range within which they feel comfortable. These parameters are often very small. When reading test results, please remember that patients can and do experience symptoms within the normal range and that this is usually a sign that their medication needs adjusting.
- Vitamin D deficiency.
Difficulty in stabilizing a hypopara patient may be due to low ordinary vitamin D levels. A patient may also be more symptomatic when Vitamin D levels are low despite apparently ‘normal ‘calcium levels.
- Aim to keep levels high enough for the patient to be symptom free but low enough to keep the kidneys safe.
2.00 – 2 20 mmol/L is the recommended long term goal but many patients may find this hard to achieve especially if vitamin D and magnesium levels are too low.
- 24 hour urine test.
Urinary calcium and urinary phosphate need regular monitoring. Hypercalciuria can be reduced by cutting calcium supplements.
- Calcium supplements are bad for the kidneys. Sufficient levels of Alfacalcidol, vitamin D3 and magnesium can maintain calcium levels with a good diet without the need for calcium supplements. These can be just used for occasional top ups and emergencies.
- Menstrual cycle.
The link between calcium and oestrogen means that many women require extra calcium before or during their periods. One tablet (500mg) is usually enough to compensate for the drop but this is very individual. During the peri –menopause, calcium levels may become quite unstable and extra calcium and/or vitamin D may need to be prescribed. After a hysterectomy HRT patches have successfully been used to provide greater calcium stability but should only be used short term. After the menopause calcium levels tend to increase so less medication will be needed.
Magnesium is crucial in helping to stabilize calcium and will help with twitchy muscles and anxiety too. 150mg daily to start (increase to 300mg if not causing diarrhea) and regular testing is advised. Serum levels don’t move much but magnesium is still needed.
- Need for blood tests – and same day results.
Most patients experiencing calcium swings can, in time, estimate quite accurately their own calcium level and will take the occasional extra calcium tablet to redress the balance . Self management is necessary i hypopara to avoid crises. However, this is not always possible ( it can sometimes be impossible to to work out what is going on at times, even for the most experienced patients) nor desirable as a mistake could be dangerous. No patient should feel that they are being left alone to deal with this difficult and frightening condition. INo diabetic would be left to cope alone. It is therefore essential to provide a support service for those hypopara patients who need it, in the form of regular blood tests. This will help the patient confirm their suspicions that their calcium may be rising or falling and help you to adjust their dose more accurately. It will also give you a clearer picture of what is happening over time.
- Blood testing arrangements.
Surgeries are best placed to assist the patient as testing may need to be quite frequent at times, particularly while adjustments are being made to medication. A successful protocol in West Sussex : doctors made arrangements with the practice nurses to take blood from the patient when necessary (this may rise from monthly to 2 or 3 times weekly in the most urgent cases) and to call the lab to ensure an urgent same day result. (A phone call to the lab to advise them of this procedure is also good idea) This means the patient can call the surgery for the result later that day and then adjust their dose safely. This procedure has helped to prevent the need for A&E visits and urgent IV treatment for hypocalcaemia which occur when the patient has not been regularly monitored.