Advice for patients and GP’s on managing Hypoparathyroidism
from HPTH UK
Hypoparathyroidism UK (HPTH UK) is the only UK organization committed to Hypoparathyroidism and other rare parathyroid conditions. We have produced this leaflet to help doctors and their patients with Hypoparathyroidism who are working together to find a viable treatment.
(HPTH) is a rare condition which occurs where there are inadequate or ineffective levels of parathyroid hormone and may be due either to a genetic disorder or as a direct result of thyroid, parathyroid or laryngeal surgery.
Patients may suffer unstable calcium levels as a result of hypoparathyroidism in the same way that diabetics do with insulin, but they do not have home testers or replacement hormone to help them stabilize and manage their condition. Current calcium and vitamin D treatment is very hard to monitor and this leaflet is an attempt to address that difficulty. HPTH UK have been involved in bringing to the UK the first clinical trial of PTH 1-84 on Hypoparathyroidism, to begin in 2009 which he hope will provide a more appropriate treatment.
Dealing with a rare condition is often difficult for both doctor and patient as little evidence about successful treatment is available and as patients may experience many different symptoms. Sometimes, a patient will be more informed about a rare condition than the doctor but this should not be interpreted negatively by either party. With HPTH, it is important to be able to work together (on an ongoing basis as levels change over time) so that appropriate treatment may be found for what may be a very individual set of symptoms. While many patients will have mild symptoms, others will may experience continually unstable levels which are very distressing for the patient and can have a detrimental effect on their quality of life; some people become housebound as hypocalcaemic episodes can be so unpredicatable and hard to manage. Reaching a diagnosis may take time and learning how to manage medication once diagnosed can be very demanding so patience and tolerance is needed on both sides.
Many patients, particularly those who had neck surgery, can experience quite dramatic hypocalcaemia and hypercalcaemia episodes despite taking a regular dose of medication. These episodes are frightening and dangerous and their effect should not be underestimated.
Hypoparathyroid patients may experience both high and low calcium symptoms during the process of dose adjustment or in response to other factors. In either case, doctors and patients need to learn to recognise these symptoms in order prevent a serious outcome. They also need to work together to achieve stable levels as far as possible and to manage the condition on a daily basis.
HPTH UK has co-authored articles about Hypoparathyroidism for both patients and doctors at Patient UK
Managing calcium levels for patients
Patients: to discuss these and any other issues you may have about Hypoparathyroidism or Hyperparathyroidism, please visit our forum at www.hpth.org.uk.
Managing Calcium levels for Doctors
While many patients with HPTH will settle well on their medication quite quickly, others may take longer to stabilize and some never do. Some, like the ‘brittle’ types may experience lifelong unstable calcium levels. For the majority, however, there are a number of simple solutions that an be employed and which do help. All patients require careful, ongoing management and regular testing.
We hope you find this leaflet helpful. If you have any comments or suggestions please contact HPTH UK