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Working Together

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.

 

Hypoparathyroidism

(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.

 

Hypocalcaemia

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.

 

Working together

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.

 

Recognizing Symptoms

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.

  • Hypocalcaemic symptoms develop through a spectrum from mild to very severe: from tingling, muscle twitches, anxiety, cold, sudden diarrhea, numbness, blurred vision, dizziness, head pressure, irritability and auditory distortion, and the very unpleasant inner vibrating stage through to a full blown tetany which includes severe dizziness and disorientation, severe muscle spasms which affect the whole body, inability to communicate clearly, severe anxiety and eventually seizure. Some patients may only ever experience mild symptoms which come on slowly while others can have very sudden onset (from mild to severe within ten minutes).
  • Hypercalcaemic symptoms include a gradual fatigue, heat, thirst, heaviness of limbs, hip and bone pain and nausea through to a severe headache, vomiting and inabilty to stay awake. This is often harder to recognize at first and may take longer to resolve. Again patients may experience mild symptoms or very sudden rises.

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

  • Learn to identify symptoms. Keep a record of symptoms, test results and medication taken. Monitoring symptoms carefully, perhaps with a diary, can help to identify patterns, whether symptoms are of high or low calcium and identify a problem. Being able to identify symptoms means that you can prevent a crisis developing.
  • Factors affecting calcium levels are exercise, infections, other medication, anaesthesia ( including dental), oestregen, thyroxine, dehydration, diarrhea and vomiting, absorption problems, stress and diet. Alcohol, caffeine, too much wholemeal bread, spinach or tomatoes can all deplete calcium levels.
  • Eat regularly. A good diet, rich in calcium and vitamin D and eating something 3 hourly will keep up calcium levels and prevent drops occurring. Note that calcium is present in foods other than dairy as well.
  • Spread your dose out evenly over the day. This can make a big difference. taking your calcium and vitamin D tablets 3 or 4 times a day will keep your levels more stable.
  • Thyroxine. If you take thyroxine, take it at least an hour before your first morning dose of calcium. Also be aware that thyroxine levels and calcium levels are inter-related.
  • What to do in a crisis. Learn the signs. Test yourself – Chovstek’s sign, sharp knee reflexes, cold, pale, quivery, fingers, toes, stomach cramping up. Self medication should always be carried out with a doctors guidance but in an emergency you may need to take more calcium if you feel yourself dropping fast – and you are sure that your levels are going low. Try a glass of milk first or lump of cheese with apple juice. Keep calm, keep warm and keep still. If that doesn’t work after 30 minutes and your symptoms are getting worse take one extra calcium tablet and wait another 30 mins. This should kick in. If not another tablet may be necessary. If you don’t think it’s kicking in ( often tears are a good sign that the worst is over) you should then call your doctor or get to an A&E. Sometimes, you may just need to take some of your day’s dose early without actually taking any extra. Always get a blood test done to see what is going on for the next few days. You will feel quite tired afterwards. If you are having frequent drops, ask your GP/Consultant for a letter to carry, explaining your urgent need for a calcium test at A&E. Very often, such frequent drops are a sign that you need more Alfacalcidol to keep up your calcium level and you should talk to your doctor about adjusting your medication.

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.

  • 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 HPTH. Many patients are symptomatic within the ‘normal’ range and patients 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 calcium and/or vitamin D doses need adjusting.
  • Vitamin D deficiency. Difficulty in stabilizing an HPTH patient is usually due to low active vitamin D levels (1.25Dhydroxyvitamin D) which also need to be monitored. 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. 2.20 – 2 25mmol/L is the recommended long term goal but many patients may find this hard to achieve early on and/or if their vitamin D is low.
  • Urinary calcium and urinary phosphate need regular monitoring by 24hour urine test.
  • A PTH test is a useful diagnostic tool and also a fairly reliable indicator of whether this is going to a temporary or permanent state of affairs. Below 10, the parathyroids are unlikely to function sufficiently again.
  • Menstrual cycle. The link between calcium and oestrogen means that many women require one extra calcium tablet ( 400 – 500mg ) before or during their periods. This is usually enough to compensate for the drop. During the peri –menopause, calcium levels may become more unstable and again at the menopause or after a hysterectomy. HRT patches have been used to provide greater stability or extra calcium and/or vitamin D may need to be prescribed.
  • Magnesium. Magnesium helps to stabilize calcium and will help with twitchy muscles and anxiety too. Only 150mg daily to start (as a full dose may cause diarrhea) and regular testing is advised.
  • Need for blood tests. Most patients experiencing calcium swings can, in time, estimate quite accurately their own calcium level and take the occasional extra calcium tablet to redress the balance . However, this is not always possible ( it can very difficult to distinguish what is going on at times) or desirable as a mistake could be dangerous and no patient should feel that they are being left alone to deal with this difficult and frightening condition. It is therefore essential to provide a support service for those HPTH 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. In an increasing number of surgeries, doctors have made arrangements 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. 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 where the patient has not been monitoring their condition in this way. A phone call to the lab to advise them of this procedure is also good idea.

 

Useful research

  • Clinical Review: Hypoparathyroidism Dolores Shoback NEJM Vol 359:391-403 July 24 2008 no. 4
  • Review article: Vitamin D Deficiency Michael Holick MD NEJM 2007;357:266-81
  • Long-term treatment of hypoparathyroidism: a randomized controlled study comparing parathyroid hormone-(1-34) versus calcitriol and calcium. Winer KK, Ko CW, Reynolds JC, et al;J Clin Endocrinol Metab. 2003 Sep;88(9):4214-20

We hope you find this leaflet helpful. If you have any comments or suggestions please contact HPTH UK


   
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