When Should Thyroid Patients Get A Second Opinion?

Drs. Richard and Karilee Shames Share Their Thoughts

This Q&A interview explores when it's time to get a second opinion, with thyroid experts Richard Shames, MD and & Karilee Halo Shames, RN, PhD, authors of two popular books for thyroid patients, Thyroid Power and Feeling Fat, Fuzzy and Frazzled?

Mary Shomon: From your book and prior articles, we know that you both have been involved with thyroid work for over 25 years -- personally and professionally.

What is your stance on patients getting a second opinion?

The Shames: As health professionals, we are extremely supportive of personal empowerment and self-care. In addition to books, friends, and the Internet, we feel it is essential to maintain a beneficial relationship with your doctor. A good practitioner can assist you in proper diagnosis and optimal management of your thyroid issue, saving you years of distress, expense, and hardship.

But, keep in mind that all doctors have their limits. Their time, knowledge, and clinical experience are not infinite. It is standard medical practice to call in another opinion when needed. Usually it is the doctor who decides when another view is needed on the case. In the thyroid arena, it is becoming more and more common that the patient is making this decision. As a doctor - nurse team, we are entirely supportive of this more recent and much-needed development.



Mary Shomon:What do you feel would make a patient start thinking along these lines?

The Shames: For thyroid patients, it generally starts early in the diagnosis phase, or later in the treatment discussions. For example, at the onset of a possible thyroid problem, a knowledgeable practitioner takes a complete history, listening carefully to nuances, and identifying patterns.

Then, he or she performs the proper physical examination and orders appropriate laboratory tests, to ascertain exactly what is causing the symptoms. In this way, you can accurately determine which treatments will be most helpful to you. Don't sell yourself short. Make sure from the beginning that your situation is properly diagnosed. If your regular doctor does not check for thyroid as closely or as carefully as you would like, by all means speak up. This is especially true if you have any thyroid disease in your own or any of your family's medical history.

If you have obtained information from friends or web sites related to your condition, it would be a good idea to share this with your practitioner to obtain further input. In these instances, be alert to the response of your practitioner. If your doctor acts as if your questions are a bother, or doesn't answer directly, consider whether you are receiving optimal treatment. You may need to augment this doctor's care with an additional opinion.

If your doctor doesn't know the answers to your questions, ask if he or she can find out for you, or direct you to the proper resource. You may need to shop for this additional attention, just as you would shop for the right mechanic, contractor, or other service you value.

Mary Shomon: Why do you in feel a prospective thyroid patients need to shop around?

The Shames: Many primary physicians do not seem to be aware of the excessive prevalence of low thyroid in the population, or of its collective toll on the nation's health. As we have noted in our book, investigations by university medical centers, as well as by the Mayo Clinic, have determined that the prevalence of thyroid conditions is quite high -- compromising the health of as much as 10% of the population, and appears to be very much on the increase. It has taken a long time for the medical commu nity, which is largely focused on critical care, to become aware of this dramatic situation.

Since the condition is usually not severe or life threatening, it may simply not grab the attention of busy doctors. Also, since the thyroid system controls so many aspects of physical and mental functioning, the patients' long list of complaints can seem unrelated and excessive to the clinician. The patient may have a skin problem, a stomach problem, fatigue, weight gain, hair or nail problems, emotional ups and downs, feel chilly some of the time, and hot at others.

When confronted with this seemingly global array of symptoms, the physician is often skeptical, and, rather than suspecting low thyroid, may believe that this patient may have a psychiatric problem like depression. Now the stage is set for a diagnosis of depression, or something similar, with a prescription for Prozac or Zoloft. This misses the true underlying diagnosis of low thyroid, which is causing the symptoms that include depression. If you feel strongly that you are one of the millions of thyroid sufferers being misdiagnosed in this way, then you may well need to shop around and get a more detailed second opinion.

Mary Shomon: What about a patient who perhaps has had a second opinion with a more open-minded doctor, has had a more complete panel of thyroid tests, is diagnosed (maybe for years already), and treatment still isn't going as well as she or he would like. What then?

The Shames: It is well known that this unfortunate situation of less than satisfactory treatment is all too common. Let's say your particular problem is not with the diagnosis of a thyroid issue, but with the ongoing interpretation of symptoms and tests that could result in more optimal management of the condition. When blood tests are read, the range defined as normal for thyroid is frequently so large that what is considered a satisfactory level can actually disregard the unique metabolic needs of an individual person. Such people can feel miserable for years with a variety of significant complaints, despite their lab work having returned to "normal". Regardless of the patients' protests, some doctors insist that if your TSH is fine, then your thyroid is fine. The thyroid patient, however, may be gradually feeling worse and worse, and perhaps eventually becoming despondent. If you are in this boat, you may want a second opinion from a doctor who considers lab work as only one part of the whole thyroid story.

Mary Shomon: Unfortunately, my readers and I have found that doctors like that are relatively few and far between.

The Shames: That may be true, but there are more and more of us. In our practice, we do primary care as well as second opinions. Lab tests are just one of the factors that go into our decisions and suggestions. There are plenty of other doctors like us. Patients just need to seek them out. Your Top Doctors Directory is an excellent place to start.

For example, consider the doctor's "bible", the Physician's Desk Reference (PDR) . In all the thyroid medicine sections, there is a subheading called "laboratory tests." Here physicians are advised not to rely solely on any one particular blood test for managing low thyroid. Instead, they are reminded to combine the knowledge obtained from laboratory evaluation with good clinical judgement. Yet, with managed care dictating protocol, physicians are by and large ignoring this advice. A few physicians, however, are indeed following this proper procedure; patients just need to find these doctors. Then the patients can obtain a second opinion that hopefully will inspire their primary doctor to be more open-minded about treatment discussions. It may be that a simple increase in medication dose or a simple change in brands of medicine will be a big improvement. Maybe the second opinion will suggest combining two thyroid medicines, which is sometimes better than any one medicine alone. An open-minded primary doctor then can utilize the second-opinion suggestions on a trial basis and see how well it works.



Mary Shomon: Many patients are not seeing the kind of doctors you are describing. Why do you think there aren't more physicians who take a similar approach to yours?

The Shames: Since the THYROID POWER book came out, we have been hearing from people all over the country, voicing dissatisfaction with what has been called "the tyranny of the test", or with the unwillingness of their doctor to try something new and different.



We can readily understand why many providers would not want to practice in this manner. It is extremely time-consuming, requiring an extra dose of patience to monitor each patient's fluctuating progress. The process demands that the caregiver walk side by side with the patient, educating and supporting the person who is in the midst of this (sometimes) roller-coaster existence. The managed care environment does not allow practitioners to devote the careful attention that is called for, to find just the right dose, of just the right medicine(s), for each person.

In addition, the patients aren't usually acutely ill. Their condition is more of a longstanding, chronic condition that moves slowly. Some health providers do not have strong interest in this mild situation.

It is also risky for the doctor to step out of the standard mold, to try something slightly different. Keep in mind that physicians are monitored, and are expected to practice in accordance with a certain community standard.

That means that if seven general practitioners in a given city never prescribe anything but synthetic thyroid, and the eighth GP sometimes uses synthetics and sometimes uses natural thyroid, that eighth doctor is not considered to be practicing in accordance with the standards of the community. The actual legal risk is minimal, yet it still discourages many doctors from innovation.


 

Mary Shomon: I can understand all that. What I, and many of my readers have trouble with, is when the doctor's seem haughty or obstinate.

The Shames: Oh, that's a much bigger issue. Health care in general is long overdue for a needed paradigm-shift in doctor-patient relationships. It needs to become more of a co-equal and mutually-sharing partnership for learning and healing. Many doctors are trained to think that an omniscient demeanor is most reassuring to the patient. In some cases this is true, perhaps mostly with older patients, who have been indoctrinated to believe the doctor is infallible. We believe, instead, that our job is to educate and motivate, rather than dictate. The doctor should be open-minded, willing to try a variety of different medicines, and to help the patients decide which one is really working best for them.

We consider that part of our role as caregiver is to empower and honor the individuals who seek our knowledge, wisdom, and support in safeguarding their health.

It is well documented that patients' beliefs play an integral role in healing. It is also well documented that an empowered patient does much better than one who simply follows orders.

 If a patient has had negative experiences with certain medications, we respect their concerns and experiences. We encourage health care consumers to be sure to articulate feelings and beliefs about treatment. If your health provider is not interested in hearing your feelings or beliefs, you may then definitely want to consider getting another opinion.

Mary Shomon: Can you sum this all up into a "nuts and bolts" recommendation list for patients?

The Shames: Absolutely. Here is when a thyroid patient should start thinking about getting a second opinion:

  • If your doctor does not explain your lab results or provide the actual numbers (this is especially true if you ask for results and cannot get them at all)
  • If your doctor or office representative will not return your phone calls
  • If your doctor says that all of this must be in your head, or be stress-related or PMS or menopause related (of course it's all related, but thyroid often needs to be considered as a primary cause)
  • When your doctor says a particular symptom you've seen on this website "couldn't possibly be due to low thyroid" (red flag)
  • When you've been on the same treatment for years and are still not feeling your old self, but your doctor is unwilling to change anything
  • If you are lucky enough to have a cooperative doctor, but he or she has been trying things that don't seem to be working, or are making you worse (your doctor may need some help to find just the find tweaking for you)

Mary Shomon: Finally, how can a second-opinion experience achieve a positive result for patients?

The Shames: Here's what we've found is most helpful.

  • It is best is to let your primary doctor know that you would consider attending to the second opinion suggestions as a "temporary" trial of something new. If it doesn't work, you'll be content to continue working with your doctor perhaps in another direction, or at the very least, going back to what you had been doing before.
  • Tell your primary doctor that you are willing to take full responsibility for any adverse outcome in trying out a second-opinion suggestion. In fact, you are willing to sign such a statement in the chart (this relieves a lot of pressure for the doctor, and puts you in the drivers' seat).
  • Let your primary doctor know that you understand that optimal thyroid management is a very individualized and sometimes "hit and miss" situation, that you are perfectly willing to engage in, and that - in fact - you consider it good medical care to engage this way because you are suffering with an "intractable" and perhaps unnecessary disability in your life (that medical lingo will get more of your doctor's attention than simply saying "I don't like feeling tired".)

Richard L. Shames MD & Karilee H. Shames PhD, RN are authors of two popular books for thyroid patients, Thyroid Power and Feeling Fat, Fuzzy and Frazzled? Both experts provide telephone coaching for optimal wellness. More information is available about their coaching sessions at their site.

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