Young patients who starve themselves risk bradycardia, anemia, bone loss—and even death. Yet few patients receive proper care, experts say.

She’s starving but not hungry and skeletally thin but says she feels fat. She talks about eating healthfully but may die of malnutrition—and she denies that anything is wrong. This is the portrait of the typical patient with anorexia nervosa, and she’s likely to be among the most difficult patients a primary-care practitioner will ever encounter. This disease, most often seen in young Caucasian females, afflicts 1%-10% of American teenage girls and now seems to be spreading to other groups.

To help primary-care clinicians better understand patients afflicted with this stubborn condition, The Clinical Advisor asked for guidance from Jill Shea, MSN, ARNP, a psychiatric specialist with the Hall Health Mental Health Clinic at the University of Washington in Seattle, and Martha Seagrave, PA-C, director of predoctoral programs in the Department of Family Medicine at the University of Vermont in Burlington. Both women have years of experience treating eating disorders. Here’s what they told us.

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Q: Who is most at risk for anorexia?
Ms. Shea: We still watch primarily for adolescents. In the 1970s, patients were almost always white, upper middle class, and intelligent. Now we see different races and ages. It is not unusual for women who had eating disorders as adolescents to have them again later in life. The change in the type of patients with anorexia is not a reporting bias. Society is moving faster, and there’s more focus on body image and weight.
Ms. Seagrave: Technically, nobody is immune. We’re also now seeing more anorexia nervosa in men. And individuals who participate in activities or sports in which weight has an impact on performance (e.g., jockeys, wrestlers, ballet dancers, runners, and skaters) are especially vulnerable. There is definitely a genetic predisposition as well.

Q: How do “anorexia” and “anorexia nervosa” differ?
Ms. Shea: In the psychiatric area, the terms are used interchangeably. Anorexia nervosa is the psychiatric diagnosis. Technically, anorexia is appetite loss.
Ms. Seagrave: Anorexia is a symptom. A person who has other conditions, such as pancreatitis, might have anorexia, in the sense of appetite loss. Anorexia nervosa is a Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) diagnosis with specific diagnostic criteria.

Q: Is anorexia nervosa a physical problem, a mental problem, or both? Is it an addiction?
Ms. Seagrave: It is both physical and mental, but there is a large psychological component. Affected patients are into maintaining unbelievable control over their bodies. Psychological supports make a huge difference in terms of how successful the treatment is.
Ms. Shea: The thoughts on addiction are varied. Anorexia nervosa is not an addiction in the classic sense, but there is an addictive component to starvation. Anorexia works via the same mechanism as addiction: It numbs out feelings and manages affect in the same way that substances do.

Q: Which symptoms should alert clinicians to the possibility of anorexia nervosa?
Ms. Seagrave: Certainly weight loss. Before that becomes apparent though, you can pick up anorexia nervosa in people who are talking about eating healthfully, starting to publicly limit high-fat foods, maybe going to a vegetarian or vegan diet, and very interested in exercising. You’ll hear this in a healthy population, too, but in the anorexic, it tends to be excessive.
Ms. Shea: You may also see amenorrhea, bowel problems (e.g., constipation or diarrhea), and headaches from poor nutrition.

Q: Many other conditions can cause weight loss. How can clinicians rule these out?
Ms. Seagrave: Start with physical findings: The hair gets thin and dry, and the skin gets thin, dry, and friable. Another physical finding is yellowing skin (carotenemia). Much of that comes with overingestion of fruits and vegetables containing beta carotene. Unlike jaundice, the sclera of the eye is white and the palms are yellow. For labs, you probably want to check thyroid-stimulating hormone and a complete blood count. It is amazing how quickly some clinicians want to check electrolyte levels, myself included. Unless the patient is bulimic or refeeding, these are usually normal.
Ms. Shea: From a psychological perspective, the clients’ thought processes are diagnostic. There’s the disturbed body image and a great deal of denial.

Q: Is there an algorithm for diagnosis or a standard line of questioning?
Ms. Shea: No, it’s pretty individualized. I’d start with the patient’s reason for coming to primary care (e.g., amenorrhea). A clinician would also notice the weight loss. But there isn’t always weight loss.
Ms. Seagrave: If anorexia nervosa is suspected, ask about her periods if she is of that age. Ask about her eating habits and how she feels about food. Anorexics usually love food, but they restrict it. The most difficult thing about diagnosing anorexia is that the patients typically feel really good early on. Ketosis actually brings a sense of well-being, and they don’t usually feel hungry.

Q: What are the medical consequences of anorexia nervosa?
Ms. Shea: Amenorrhea, bradycardia, low WBCs, and anemia are the primary consequences. Infertility and bone loss are longer-term concerns. I have seen clients with stress fractures and clients in their 30s with the bone density of someone in their 60s.
Ms. Seagrave: If a patient’s weight gets really low, they lose cognitive ability and the ability to see that they have a choice. This is a very late-stage effect of malnutrition. The body works hard to mobilize glucose to the brain, and it is one of the last things to truly physically alter.

Q: What is the best way to approach the patient and the parents?
Ms. Shea: The most important thing for the clinician to know is that patients are going to react with denial and anger. Clinicians need to expect that. Some patients become receptive to treatment only because it was brought up so many times. The clinician can say, “One of the reasons I’m concerned is your nutritional status.”
Parents often are the ones pushing the person toward getting help, but they can also be in denial. They do not want to think there’s a problem. In our health-focused society, six hours of exercise a day can be seen as a good thing.
Ms. Seagrave: The DSM-IV guideline for anorexia nervosa is 15% below the predicted weight for a given height. You can use the numbers to support your view: “Yes, I understand that everyone in your family is really thin, but I’m concerned that your weight is so low that you are going to start having some physical problems.” If a female has stopped having periods but is not yet at the DSM-IV cutoff weight, you can express concern about her not having enough nutrition to support her body without calling it anorexia. You can tell her that osteoporosis is a risk and that she may also lose muscle strength and not be able to do the things she wants to do.
As for parents, clinicians have to be very careful about communication and trust. While the primary focus has to be on the patient, you do want to engage the parents as often as possible. Always ask the patient’s permission first.

Q: What treatments are available?
Ms. Shea: Of course you need a decent medical workup to make sure nothing else is going on, but for the short term, most intervention is going to be psychological. I prescribe antidepressants, but psychotherapy is still the main treatment. If the patient’s weight is very low and she is at the point that she cannot think clearly, you will need to rehabilitate the nutrition. There are some good inpatient units in the country. Many times, the patient needs to be tube-fed very slowly.
Ms. Seagrave: Certain medications have been used with mixed results. Putting patients on birth control pills to provide some level of estrogen and maintain bone strength is not common practice, but it is one of the things we do. Some clinicians also use antidepressants and antipsychotics. For the anorexic, what really works best is a team approach. The more you can keep treatment on an outpatient basis, the better. In an inpatient setting, clinicians frequently do not get a commitment from the patient or the patient cannot continue the new patterns once she is on her own again.

Q: Is time a consideration?
Ms. Seagrave: Usually you’ve got time. The only problem is that the longer an eating pattern has been ingrained, the harder it is to treat. Before adolescent patients get into a true diagnosis of anorexia nervosa, you can work with them in terms of self-esteem and healthy exercise.
Ms. Shea: If there are any serious physical problems (e.g., bradycardia), the patient may require clinical attention. The chief reason for refeeding slowly is that patients who are in starvation mode secrete less insulin because their carbohydrate intake is lower. Instead, the body utilizes fat and protein stores for energy, which leads to an intracellular loss of electrolytes, especially phosphate, though serum levels may be normal.
During the refeeding process, secretion of insulin increases, stimulating the cells to take up phosphate, and the patient can develop hypophosphatemia, a phenomenon commonly known as “refeeding syndrome.” The end result can be heart failure.

Q: What misconceptions do patients and parents most often bring to their clinician?
Ms. Seagrave: People sometimes think this is something patients have brought upon themselves. Sometimes parents or people uneducated about anorexia come in with an attitude of “Why won’t they just eat?” Nobody chooses anorexia. And certainly in this disease, patients are under the major misconception that they don’t need any help and can do it alone.
Ms. Shea: I’ve seen parents who want to think the anorexia is just a phase. Sometimes that’s true, but many times it is not. As the patient gets sicker and sicker, it is important to take the condition seriously even though he or she is in denial.

Q: Do clinicians have misconceptions about anorexia nervosa?
Ms. Shea: Yes, primarily that the disease affects adolescent girls, but it can also occur in adolescent boys and adults of both sexes.
Ms. Seagrave: Many clinicians think they can’t treat this population. This is not a quick weigh-in, “How are you doing?” “See you later” group. These patients take time, and it is hard to see them frequently in a busy practice. The turnaround is slow, the condition is frustrating, there is almost always a relapse, and the clinician burnout rate is high. But I love working with these patients. They are usually intelligent, sensitive folks with enormous potential, and making a difference in their lives is hugely satisfying.
The need to go immediately into a high-calorie diet is another misconception. You don’t take an anorexic and put him or her on a 2,000-calorie diet.

Q: What happens during a follow-up visit?
Ms. Shea: It depends on why the patient came in. For amenorrhea, you will be doing a lot of education—continuing to talk about normal heights and weights and providing basic information. You will continue to ask the patient to try to turn the situation around on her own and convey the clinical message that doing so is really important. Avoid getting into any power struggles. These occur when there is too much challenge and confrontation by the provider. It can lead to the patient’s digging in her heels and remaining anorexic or leaving treatment. It is important for providers to join with clients around issues that concern them (e.g., finding out in what ways the eating disorder is a burden).
Ms. Seagrave: If your patient came away from the first visit with a diet plan and behavioral contract and has been keeping track of what she is eating, you will assess where she is now and increase the calorie intake. If her weight is very low, exercising is not safe or healthy and needs to be stopped. Stabilizing weight first establishes trust. Once weight has been stabilized, you can talk about gain.
When weighing a patient, try to do it at the same time of day each time. Before doing so, have the patient urinate, and weigh her wearing a consistent outfit (e.g., an exam gown, without shoes). I do not usually tell the patient what the weight is. I just say that I will let her know if she’s gaining too fast. On follow-up visits I also do a limited physical exam: BP, pulse, heart, lungs, skin turgor, and mental status.

Q: When is it time to refer?
Ms. Seagrave: Strive for a team approach right from the start. This should include a counselor, dietitian or nutritionist (unless you like putting together the eating plan), clinician, and anyone involved with the patient’s sports activity. When the patient gets into the anorexia range or cannot maintain a behavioral contract, the clinician will consult with the family doctor or other supervising physician. A patient with an extensive support group may not need to be hospitalized as quickly as someone living alone and cooking her own meals. But if hospitalization is necessary, the clinician will probably do the admit, though this varies from state to state.
Ms. Shea: I have no arbitrary thresholds. I tend to watch people over time.

Q: Are there any new theories about the cause of anorexia that clinicians should be aware of?
Ms. Seagrave: I wish there were.
Ms. Shea: Not that I know of. Researchers keep looking for a physiologic rationale but never find it.

Ms. Lippert is a medical writer and editor in the New York City area.