Informing & Supporting Thyroid Patients Since 1985
Informing & Supporting Thyroid Patients Since 1985
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What you should expect
You would think it is all quite simple. The thyroid gland is a small organ, located in the front of the neck. It is a factory that is designed to produce one product - thyroid hormone. It usually makes just the right amount of hormone to meet the body's needs. Occasionally it can make too much hormone. More often, it can produce too little hormone. It can grow lumps, some of which can contain thyroid tumors, including thyroid cancer.
It all sounds very simple, and so it seems, until you suddenly discover that you or someone you know has a thyroid problem. Then you realize that what sounds so simple at first actually can be quite complicated and very confusing.
The purpose of this article is not to advise you what to do about any specific area - there have been, and will continue to be, informational articles on this website addressing all of these areas - but to help you understand the nature of the relationship between you the patient, and your doctor.
Nowadays, the traditional role of "the doctor" may seem different, especially to those of you who remember the "good ol' days of medicine," back before health insurance marketplaces existed, when your doctor was your friend, took lots of time with you, got to know you and your entire family, took care of all aspects of your care, saw you when you were sick in the hospital, maybe even came to your house for a house call, and, certainly, never hesitated to refer you to a specialist. Things are just not that way any more.
Whether it was caused by the rising cost of health insurance to employers, or the total cost of health care to the government, or the influence of profit-driven "big business" into the health care industry, or some other cause, there is a very different approach to health care today. The influence of Managed Care has greatly changed the doctor-patient relationship of years ago. Doctors are constantly scrutinized over how much they are spending to evaluate a patient's illness and treatment. Hospital stays are shorter, and fewer tests are ordered. The overhead of a medical practice is constantly rising, yet doctors in most parts of the country are not able to raise fees because of contracts with insurance companies or with Medicare. There is the tendency for doctors to have to see more and more patients each day to cover their office overhead. There is great pressure on primary care doctors to "do everything" including, often, holding back early referral to specialists.
In the area of thyroid disorders, this fact is very evident. Often patients are referred very late in the course of their illness and often with many inappropriate (and expensive) tests having already been done. Who suffers the most when this style of medicine is continued? The patient is always the victim.
Nowadays, I personally recommend that the patient become her or his own advocate in her or his relationship with the physician. I hope to provide some tips to improve this relationship to seek the ultimate endpoint of a satisfied and healthy patient.
Patients deserve to know what is wrong with them and deserve to have all their questions answered in a prompt manner. The word "doctor" is derived from the Latin word "docere," or, "to teach." The primary role, therefore, of a physician is to teach his or her patient what is wrong and how to improve or fix the problem.
It is said that the three major complaints that patients have about their doctors are that:
Perhaps you should anticipate these three areas and be prepared to deal with them individually or change doctors if you cannot find one who meets these needs.
Doctors, especially primary care doctors who work in large clinics, are often forced to see large numbers of patients per day. The amount of time you need might not fit into the doctor's schedule. Thyroid diseases can often be very complicated, involving undergoing many types of evaluations, including physical examinations, blood tests, nuclear tests, ultrasounds, and biopsies, and often require detailed explanations.
Many doctors who do formal training (i.e., residencies) in either family practice, general practice, or internal medicine do not spend much time in the Endocrinology Department. In addition, most patients with thyroid problems do not have to enter the hospital for anything except thyroid surgery, so young doctors who have learned mostly from hospital experience often have not had much experience in diagnosing or treating thyroid problems.
If you sense that you are not getting your questions answered, your doctor seems defensive in answering your questions, defers the answers to her staff, does not supply you with written material when you ask for it, does not know what websites contain the most reliable patient information, gives advice that seems farfetched or confusing, perhaps it is time to seek consultation with a specialist. This is always a very delicate and sensitive issue, but sometimes patients just have to yell and scream loud enough to be heard.
I personally advocate early referral to a specialist for all forms of hyperthyroidism, all thyroid lumps (nodules) all pregnancy-related thyroid problems, all cases of thyroid tumors, and any time the thyroid blood tests are confusing. Specialists (i.e., endocrinologists or thyroidologists) should be able to do all of the above. The specialist should have the time and experience to answer all your questions, explain to your understanding even the most complicated thyroid problems, be able to aranged the best place for your diagnostic tests, hospitalization, lab testing, and surgeon if you need thyroid surgery (within the limitations of your insurance company). He or she should provide you with written material, recommend support groups (like the TFA), inform you about websites, and make notes for you to explain to your family at home. You are entitled to all of this.
In addition, I feel that your doctor should help you make decisions. You come to your doctor to understand what is wrong, be tested (but not too much), and to feel better. Your doctor should keep up on all the latest developments in the field. Your doctor should provide for you the treatment options, where they exist, but should not turn to you to make a decision without your being properly informed. It is my personal feeling, that patients come to medical doctors for advice on what to do. Doctors should be expected to provide guidance to the proper decision, not leave it to the patient to decide alone.
It is hard to predict how often thyroid patients need to be seen by an endocrinologist. Certainly, it depends on the activity of the disease, whether the problem was newly discovered, partially treated, or recurrent. The frequency may depend upon the age of the patient, as well as how compliant the patient is. A rough guide might be:
Please be on time for the visit, or call if you know you are going to be late, to see if rescheduling is appropriate. If you must have an authorization number or form before you can see the specialist, make sure that the specialist has this paper, or you should stop by your primary care physician's office to pick it up.
If you are supposed to be on medications, please take them at the proper time every day. They are for your own good. If you are not so good at taking medicine, please inform your doctor. Sometimes the strength of a drug is readjusted based on the assumption that you are compliant. If you do have a problem remembering to take the pills, perhaps a simpler schedule can be arranged.
If you have a lot of questions, please write them down on a list and have it ready for the doctor when she or he enters the examination room. Sometimes seeing the list makes it easier for the doctor to answer the questions.
If you become sick, require an operation, or other members of your family are concerned about you and want to speak to the doctor, please designate one family member to be the spokesperson for the family. Try not to make the doctor have to go over the same explanations and facts on several occasions. If possible, try to have someone at the patient's bedside when the doctor makes rounds, if the questions are about a hospitalized patient.
Cooperate with your physician when she or he recommends a test which cannot be done at the doctor's office and have it done promptly. Make sure you tell the hospital or diagnostic center to send a copy of the results to your primary doctor, and also to the specialist.
If you are seeing a specialist for the first time, try to gather up copies of all your recent lab results and bring them with you to your appointment. In addition, if you have had any recent thyroid scans, sonograms, or CAT scans, please bring the original x-ray films with you. Call ahead to the hospital or diagnostic center. They should release them to you.
Please learn as much as possible about your thyroid disorder, because the more informed you are, the easier you can be treated.
Patients, nowadays, deserve to be better informed than they used to be. There are many resources available (including the TFA). But use the resource most easily available and the one that you need to trust the most - your doctor. In turn, cooperate with the doctor so that you can return to good health as quickly as possible.
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