SELF-HELP LEAFLET NO.

KEY POINTS IN MANAGING HYPOPARATHYROIDISM

Medical Disclaimer: The information contained in this leaflet is given in good faith and intended for information purposes only and should not be used as a substitute for professional medical or psychological treatment and care.

Managing Hypoparathyroidism
Whether your diagnosis of Hypoparathyroidism was because of a congenital or autoimmune disorder or acquired as a result of thyroid or other neck surgery it is a condition which is likely to be with you for the rest of your life. Learning to understand and deal with how Hypoparathyroidism affects you personally is the key to enabling you to live as normal as life as you can with the condition. Normally the parathyroid glands will automatically act to ensure that the calcium level in your blood is precisely controlled within a narrow normal range but in Hypoparathyroidism you do not have this automatic control, so with the help of your doctor you have to learn how to deal with and manage your own calcium needs. Physicians who understand Hypoparathyroidism prefer to maintain their patients calcium levels high enough so that they dont experience any of the physical symptoms associated with the disorder and as low as possible to help reduce the potential long term risks to their kidneys arising from calcium deposits or stones. To achieve this balance most doctors favour keeping blood serum calcium levels at the lower end of the normal laboratory range which in the USA is between 8.5 to 10.3 mg/dL and in the UK between 2.12 to 2.65 mmol/L and would prefer patients to limit their daily calcium intake to a maximum of about 2000 mg.

Remember everyones metabolism is uniquely different and what works for one person may not necessarily work for another even when they have the same medical condition and treatment regime. Normal is individually relative to you alone and your symptoms at that particular time. Your doctor will tailor your treatment regime to meet your specific calcium and vitamin D needs after consideration of your medical history, any current symptoms of Hypocalcemia and the results of laboratory blood and renal health test.

Educating yourself
Knowledge is the key to successfully understanding and managing Hypoparathyroidism

Finding credible and reliable information to help you understand and work with your doctor to manage your rare medical condition can be both time consuming and frustrating. The Hypoparathyroidism Association hopes to address this through their website. Founded by Jim Sanders, who together with his five sons are all fellow Hypoparathyroidism patients, the Hypoparathyroidism Association is totally dedicated to improving the lives of people with all forms of Hypoparathyroidism. The website not only offers a worldwide network of family support it also provides access to many articles or research written

by doctors or other medical professionals about Hypoparathyroidism and its treatment or management, as well as links to other websites maintained by medical organizations. The informative quarterly newsletter is written by the President of the association Jim Sanders with contributions from columnists and Hypoparathyroidism members from around the world.

access to occasional emergency care and fast track blood tests and laboratory results.

Finding out what works for you

Knowledge about Hypoparathyroidism and how it affects you is the key which empowers you to help yourself. Keeping a daily diary The best way to keep track of how your symptoms of Hypocalemia are responding to the treatment regime recommended by your doctor is to keep a detailed daily diary. List Symptoms Medications and times of doses Make a database or list of blood test results. The contents of the diary will provide you and your doctor with some very useful information about your condition of Hypoparathyroidism and how the treatment regime is progressing. It may also help to pinpoint the reason your Hypocalcemia symptoms are either getting better or worse.

Hypoparathyroidism support
groups Having a rare condition like Hypoparathyroidism which requires a large amount of self-regulation and management can be very demanding and leave you and your family members feeling isolated and alone. You can make contact with others who have Hypoparathyroidism with online support groups. Here you can post questions or make a contribution to questions from others who need support. Many support groups have the benefit of advice from in house doctors or pharmacists who kindly offer their time and advice to members. HPTH Association forum: www.hpth.org HPTH International Support group: www.groups.yahoo.com HPTH UK forum: www.hypoparathyroidism.org.uk

Calcium levels and hypocalcemia

Calcium is an essential mineral which provides our body with the electrical energy it needs for the smooth running of our nervous system and muscle contractions, including our heart. It also provides the strength and maintenance needed for healthy bones and teeth and is involved in the clotting process of our blood and our feeling of well being. Normally the calcium levels in our blood are automatically and precisely controlled by the actions of four very small, but blood rich parathyroid glands in the neck. In Hypoparathyroidism this automatic control is missing so when the calcium levels in our body begin to get low there will be insufficient electrical charge for our nervous system or muscle contractions to work properly. The body will respond by sending out warning signals that blood calcium is getting low and we begin to develop symptoms of neuromuscular irritability called Hypocalcemia. Equally when the level of calcium in our blood is too high the body will also send out tell tale signals too.

Choosing the right primary care

doctor Although the main treatment for your rare metabolic disorder will usually be overseen and managed by a Consultant Endocrinologist it is the primary care doctor who you will have the most contact with and who will be responsible for the day to day management of your care and treatment. It is important for patients who have a rare disorder, such as Hypoparathyroidism, to choose a primary care doctor who understands the serious nature of a calcium disorder and the patients high dependency on medications. The doctor should also understand the need for extra support and

How do I know if my calcium is high or low? The best way to recognise if your calcium levels are beginning to go out of balance is to learn to listen to your own body. Sometimes other conditions such as thyroid problems, stress or anxiety states or even normal everyday twinges or aches and pains can be similar to symptoms of falling calcium levels. By learning to listen to your own body and recognise how you feel on a good day when your calcium levels are stabilized and the difference in how you feel when your calcium levels are dropping can help you to recognize the symptoms early and avoid a calcium crash situation. Symptoms of Low Blood Calcium levels (Hypocalcemia) Tingling of the lips, fingers and feet. Muscles twitches or spasms Fatigue or weakness Irritability, mood swings, anxiety or depression Foggy brain or dizziness Symptoms in extreme Hypocalcemia can include Seizures Heart arrhythmias Severe muscle or laryngeal spasms Symptoms of High Blood Calcium levels (Hypercalcemia) This is called Hypercalcemia and occurs when the level of calcium in the blood is too high Headaches or dizziness Stomach ache, nausea or vomiting Extreme thirst A need to pass more urine than usual. Restlessness or confusion If you experience any of these symptoms you are advised to consult your own doctor for advice and to discuss a treatment plan in the event of any calcium emergency.

Keep your daily intake of calcium to below 2000mg daily if possible to help avoid any long term compromise of renal health. Divide your daily calcium intake into equal amounts of not more than 500mg each because it is better absorbed. If more calcium than this is taken at one time the body will be unable to use it all at once and it will be excreted in your urine which could compromise your renal health. Calcium is better absorbed if it is taken with meals Be aware of the content or ingredients in all foods and medicines such as over the counter vitamins or stomach medications as they may contain calcium or vitamin D which could adversely affect your calcium stability. High phosphorus is also a feature of Hypoparathyroidism so avoid food with high phosphorous content such as sodas or hot dogs and use milk sparingly.

Calcium absorption problems Inadequate or poorly managed treatment

with Vitamin D analogs could be responsible for poor absorption of calcium. Illnesses which induce vomiting or diarrhea can also deplete calcium and electrolyte levels. If you have a chronic medical condition such as Celiac or Crohns disease or Irritable Bowel syndrome talk to your doctor about a long term strategy in the management of your calcium treatment. Medicines that reduce stomach acid in the treatment of reflux or hiatus hernia or taking antacids which contain aluminium may interfere with the absorption of some types of calcium check with your doctor or pharmacist as to which one yours is.

Timing of medication and conflicts To help avoid large fluctuations in blood

calcium which precipitate symptoms of Hypocalcemia and to keep your calcium levels consistent throughout the day it will help if you divide your total daily calcium intake into equal amounts of not more than 500mg. Calcium is better absorbed if taken with meals. Read all the patient literature given with each prescription or over the counter

Dietary Information Eat a wise and healthy diet. Monitor the amount of daily calcium you
are consuming from both food and tablets.

medication. Be aware of the recommended time span between taking doses of medications that conflict with calcium absorption or alternatively medications which calcium will bind to and prevent from being absorbed properly. These are notably, Thyroxine, Iron, Estrogens, diuretics or steroids. If in doubt seek advice from your doctor or pharmacist.

understood by the medical staff; have the words Hypocalcemia engraved on your medic alert item as opposed to the term Hypoparathyroidism, which is not so easily understood. Calcium Emergency plan As a matter of priority discuss with your doctor a plan of action for treatment in the case of any calcium emergency. Always carry some form of calcium and/ or vitamin D when you are away from home even for a short time.

Looking after yourself

Visit the dentist regularly As calcium can have an effect on the condition of your teeth it is advisable to visit your dentist regularly to ensure they remain healthy and strong. Inform your dentist about your condition of Hypoparathyroidism and ask for advice on the maintenance of your teeth and gums. Stress and lifestyle Stress or anxiety is a symptomatic part of the Hypoparathyroidism condition. Develop your own strategy for dealing with any stress such as meditation, yoga or reflexology. Listening to relaxation tapes or soothing music can lighten the mood and relieve stress. Take time out every day for yourself or take up a new non-competitive hobby. Holiday preparations In the summertime, especially if you intend to holiday in a hot climate or to sunbathe, the vitamin D naturally formed by our bodies from the ultraviolet rays of the sun may alter your calcium balances and make you feel unwell. Discuss any worries with your doctor before you go on holiday and make a plan for any calcium emergency while you are on holiday. Dehydration Strenuous exercise or dehydration can deplete or upset calcium balances. Carry some form of extra calcium such as Tums for any symptoms of tingling or numbness you may experience. Medical Alert Invest in medical alert jewelery to make medical staff aware in an emergency situation that you have a rare calcium disorder. To ensure that the seriousness of your medical condition is more readily

This leaflet was prepared by Alice McGladdery in Northern Ireland for the Hypoparathyroidism Association Inc, with the acknowledged help and advice of Dr Simon Pearce, Consultant and Senior Lecturer, Clinical Endocrinology, Institute of Human Genetics, Newcastle upon Tyne, UK and medical board advisor to HPTH UK. We would also like to acknowledge the help and advice in the final preparation, updated content and approval of the patient information leaflet content by the members of the Hypoparathyroidism Association Medical Advisory Board. Website References: www.parathyroid.com www.endotext.com www.patient.co.uk References: Various Hypoparathyroidism newsletters; Walker, B.E., Payne.R.B. (1979) Adjusted calcium conflict resolved? Journal of Clinical pathology (1979) 488-491. HPTH Association P.O. Box 2258 Idaho Falls, ID 83403 USA (866) 213-0394 (toll free) Email: hpth@hpth.org Website: www.hpth.org 2008 Hypoparathyroidism Association Inc.