The Graves’ Disease and Thyroid Foundation has posted informational “Bulletins” on Graves’ disease to our website.
These bulletins cover several areas of concern that are beneficial to patients and family members. The bulletins are in pdf form so they're printable from your home computer. If you have any suggestions on topics you would like information on, send us a message in the Contact Us section of our website.
Living with Graves’ Disease
Nancy H. Patterson, Ph.D.
Many people ask: “What can I do about my Graves’ disease”? When you feel helpless and powerless, a sense of hopelessness sets in. Although your Graves’ disease will not go away, there are many things you can do to have a greater sense of mastery in your life. What you eat, what you do, what you think and what you know – all of these things can affect your life.
First and foremost, adequate health care is a Must. Select your physician with care. Ask Questions. Although your physician may not be able to spend hours with you, your questions deserve answers. If there are no answers (which in many instances there are none), you deserve that information, too – after all, this is a team effort, and you are the captain.
Your medication is essential. If you are taking antithyroid drugs (Tapazole, methimazole, or PTU), your doctor will order periodic lab tests to ensure that you are on the right dose of medication. Read the materials from your pharmacist carefully and report any worrisome symptoms to your doctor’s office immediately.
Patients who have been treated with RAI or thyroidectomy will be prescribed a form of thyroid hormone replacement. It is a replacement for the thyroid hormone that your body once manufactured. When your thyroid was overactive, there was too much of the hormone circulating. That was the cause of your symptoms of insomnia, anxiety, jitteriness, changes in libido, heat intolerance, fatigue, heart racing and weight loss. When your thyroid was surgically removed or deactivated by radioactive iodine treatments, your body’s supply of thyroid hormone was instantly or progressively ended. Your doctor will perform the blood tests to determine the level of thyroxine you need. If your blood level is too high, you will begin to experience similar symptoms as when you were hyperthyroid. If the blood level of the hormone is too low, you will experience hypothyroid symptoms. These are slow heart rate, hair and nail changes, dry skin, sensitivity to cold, joint pains, hoarseness, weight gain, loss of appetite, difficulty concentrating, depression, constipation, changes in libido (sex drive), muscle weakness or muscle cramps, and puffy eyes. If you begin to feel any of these symptoms, contact your doctor. A simple blood test will clarify if your medication needs adjusting. You are not “bothering” the doctor. If your blood levels are satisfactory, there may be other medications or therapies that will take care of the symptoms. The remainder of your care, however, is up to you.
There are a number of nutritional concepts with which you need to become familiar and keep in mind when you plan your meals. Weight control is usually important to people with Graves’ disease. Your thyroid controls metabolism, and you may now have a tendency to gain weight. Eating to reduce caloric intake while maintaining high nutrition requires more effort than you may have done in the past. Focus on fresh fruits and vegetables. These will give you the most vitamins and minerals for your efforts and offer the balance you need. The preservatives (“sodium”) in canned and frozen foods may contribute to edema. Swelling is frequently a problem for Graves’ patients, you may now need to be more aware of your total salt intake. People with Graves’ disease sometimes develop problems with an elevated total cholesterol. You may have to become aware of your fat intake. Fish and chicken will be better for you rather than excessive amounts of pork and beef. Limit rich sauces and cheeses. Learn about nutrition. There are many resources. Both the American Heart Association and the American Diabetes Association have excellent, nutritional food plans, as does Weight Watchers, your local hospital dietitians, and registered dietitian consultants. Fad diets are not healthy – Avoid them.
You will feel better if you develop a regular exercise program. No one expects you to be an Olympic athlete. Exercises that strengthen your heart and improve circulation and muscle tone are needed to keep your cardiovascular system functioning well and keep you physically fit. The emphasis on exercise for Graves’ patients needs to be on weight-bearing exercise. This type of exercise has the most benefit to maintaining bone density. Studies show that exercise reduces appetite and increases your energy level. Concentrate on activities you already know how to do, as well as learning new ones. Have a variety of physical activities to avoid boredom, as well as the limitations of weather. Walking continues to be the most overall beneficial physical activity, and it is available to everyone. If you can’t walk, bike or swim – Rock! Vigorous rocking in a stable rocking chair uses all the muscles in the body!
Learning to relax refers to reducing the muscular tension in order to increase effective circulation, as well as mental calmness. It is not only an “attitude,” but a learnable skill. Relaxation is more than just “getting away”. It is a positive and satisfying experience that gives peace of mind. It is well documented that Graves’ disease is also a stress-related and stress-mediated illness. The “stress” is often simply a result of the fast-paced, action-packed lifestyle we lead. Relaxation may take many forms: learning new things, exercising, gardening, walking in the woods, creative activities, soft lighting, soft music, a bubble bath, a good book. Whatever is totally absorbing.
If you are interested in some of the mental exercises to create peace of mind and relaxed bodies, there are many to choose from. You might prefer the systematic tension and letting go of specific muscle groups, known as progressive muscle relaxation (PMR), or you might like imagining beautiful scenes. There is considerable research being done on the effectiveness of mental imagery (visualization) and its effect on the immune system. Yoga, Tai Chi, self-hypnosis and meditation are all ways to practice relaxation and visualization.
Relaxation exercises must be practiced daily. When you discover your favorite activities, plan to devote at least one half hour each day. You have to make a personal commitment to yourself. The National Institute of Mental Health says: “Remember, finding effective techniques for relaxation is not merely a pastime for the idle rich. It is essential for everyone’s physical and mental well-being.”
Another phase of relaxation is developing the ability to pace yourself. As a rule, people with Graves’ are the type that are intense, fast-paced, and accustomed to doing many things at once, and at full speed ahead. This is not conducive to maintaining a balance. There is the tendency that when one is “having a good day” to try to finish up everything that has been left unattended. The result is utter exhaustion the next day. This can be avoided by pacing your activities to make every day a productive day.
A support system may be defined as those caring and available people in your life who will listen, who will tell it like it is, and who allow you to reciprocate that caring, sharing dialogue. It is important that people in your support system be available, that is, live near you. Long-distance friends are good to have but do not substitute for a support system near at hand. Listening is important. Many times you do not need advice. You just need to say what you are thinking and feeling out loud, and have those thoughts and feelings acknowledged. You need to discuss things; not necessarily have problems solved. One of the purposes of the National Graves’ Disease Foundation is to establish support groups in as many places as possible. In that way, those with Graves’ disease can talk with others who understand. There is significant evidence that support groups are one of the most powerful institutions for specific groups. Support groups provide the essential ingredient that is needed for everyone who has to live with a disorder – hope and a sense of humor!
Used with permission of the author: Nancy H. Patterson, Ph.D. Executive Director, National Graves’ Disease Foundation President, Counseling Services, Inc.