Chapter 2
Thyroid Diagnosis and Its Challenges

Don’t defy the diagnosis, try to defy the verdict.

—NORMAN COUSINS

For some readers, just recognizing the symptoms of a thyroid problem will trigger a visit to your doctor, conventional tests will reveal your thyroid problem, the doctor will give you a thyroid prescription that works for you, and you’ll be on your way to feeling better and normalizing your metabolism and weight. Yes, it truly may be as simple as that!

Unfortunately, for others, getting a doctor who will actually test, diagnose, and properly treat your thyroid condition may not be as smooth a process as you’d hope. Let’s take a look at the diagnosis process and some of the inherent challenges.

THE DIAGNOSTIC EXAMINATION

A thorough diagnosis of thyroid problems should always include a clinical examination by a physician. The following is a recap of the components of a clinical thyroid exam.

Hands-on examination of the thyroid. The doctor should palpate (feel) your neck looking for a goiter, which is an enlargement of the thyroid, as well as nodules or lumps in your thyroid. Your doctor should also be feeling for increased blood flow in the thyroid (known as “thrill”) on palpation.

Stethoscope examination of the thyroid. The doctor uses a stethoscope to listen for what is known as “bruit”—the sound of increased blood flow in the thyroid.

Reflex check. Hyperresponsive reflexes can be a sign of hyperthyroidism, and slow reflexes may point to hypothyroidism.

Heart and blood pressure check. Very high or very low blood pressure can be signs of thyroid problems. Other heart-related issues the doctor should look for include:

•  Abnormal heart rate: fast but regular heartbeat (called atypical sinus rhythm or sinus tachycardia), over 100 beats per minute (normal heart rate is 70 to 80), or a very slow heart rate (bradycardia), under 60 in a nonathlete

•  Ventricular tachycardia: rapid heartbeat, felt as palpitations and sometimes also pounding

•  Atrial fibrillation: inconsistent rhythm in which the upper chambers of the heart (atria) beat faster than and the lower chambers (ventricles)

•  Mitral valve prolapse: felt as palpitations or heart flutters

Skin and hair examination. Your skin and hair should be examined for visible signs of a thyroid condition, looking specifically for:

• Loss of outer edge of eyebrow hair

• Hair loss on the head or body

• Yellowish, jaundiced cast to the skin

• Warm, moist hands and palms

• Hives

• Lesions on the shins (pretibial myxedema, dermopathy)

• Blister-like bumps on the forehead and face (milaria bumps)

• Onycholysis (separation of nails from underlying nail bed; also called Plummer’s nails)

• Swollen fingertips (acropachy)

Eye examination. Your eyes should be evaluated, and your doctor should be looking for the following possible signs of a thyroid problem:

• Bulging or protrusion of the eyes

• Red, inflamed, dry, watery, or bloodshot eyes

• Stare in the eyes, retraction of upper eyelids, infrequent blinking

•“Lid lag”—when the upper eyelid doesn’t smoothly follow downward movements of the eyes when you look down

• Swelling or puffiness of eyelids

• Twitching in the eyes

• Uneven motion of upper eyelid

• Uneven pupil dilation in dim light

• Tremor of closed eyelids

Other clinical signs your practitioner should look for include:

• Tremors

• Shaky hands

• Hyperkinetic movements (table drumming, tapping feet, jerky movements)

• Enlarged lymph nodes

• Dull facial expression

• Slow movement

• Slow speech

• Hoarseness of voice

• Edema (swelling) of the hands or feet

THYROID BLOOD TESTS

Blood tests are an important part of the process of diagnosing thyroid disease, and a number of different blood tests are typically used to diagnose a thyroid condition.

(An important note: In some cases, I’ve included normal ranges and values associated with different tests, but keep in mind that normal ranges can vary from lab to lab, and may be expressed quite differently in various countries. So be sure to get a printout of your lab test rests, along with information from the lab and your practitioner on what the reference range is for each test—most lab reports will provide this along with the results—so that you can review where your tests fall according to your particular lab.)

Thyroid-Stimulating Hormone (TSH) Test

Most conventional doctors rely on the thyroid-stimulating hormone test to diagnose an overactive or underactive thyroid. The TSH test is a blood test that measures the amount of TSH in your bloodstream. (The test is sometimes also called the thyrotropin-stimulating hormone test.)

When the pituitary detects that there isn’t enough circulating thyroid hormone, TSH is released. TSH is considered a messenger that tells the thyroid to produce more hormone. So TSH goes up when you don’t have enough thyroid hormone. A higher TSH indicates low thyroid hormone production, or hypothyroidism. Conversely, with hyperthyroidism, where there is too much thyroid hormone circulating, TSH drops, and low TSH levels are indicative of hyperthyroidism.

The TSH level typically remains in what is called the normal reference range when the thyroid gland is healthy and functioning normally.

You’ll need to know what the normal values are for the lab where your doctor sends your blood because what’s considered normal varies from lab to lab. Thyroid normal ranges are in tremendous flux right now. Throughout the 1980s and 1990s in North America, the normal TSH range was from 0.3–0.5 at the bottom end to 5.0–6.0 at the high end. At the lab where they sent my blood, for example, a TSH of over 5.5 was considered hypothyroid, and under 0.5 was hyperthyroid. Anywhere in between was considered normal, or euthyroid.

Values below the low end of the TSH normal range usually indicate hyperthyroidism. Values above the top of the normal range can indicate hypothyroidism, an underactive thyroid. The higher the number, the more underactive your thyroid is considered to be.

In November 2002, the National Academy of Clinical Biochemistry (NACB), part of the Academy of the American Association for Clinical Chemistry (AACC), issued revised laboratory medicine practice guidelines for the diagnosis and monitoring of thyroid disease. Of particular interest was the following statement in the guidelines:

More than 95 percent of rigorously screened normal euthyroid volunteers have serum TSH values between 0.4 and 2.5 mIU/L. A serum TSH result between 0.5 and 2.0 mIU/L is generally considered the therapeutic target for a standard L-T4 replacement dose for primary hypothyroidism.

Based on these findings, in January 2003, the American Association of Clinical Endocrinologists (AACE) made an important announcement:

Until November 2002, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range. Now AACE encourages doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0. AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now.

In the years since the original NACB guidelines were released, most laboratories have not yet adopted these new guidelines, and the medical world is still not in complete agreement about changing the guidelines.

This continuing debate between practitioners who are using the new range and labs and doctors using the older, wider range means that for patients who test below 0.5 or above 3.0, getting diagnosed and treated for a thyroid condition depends on how up-to-date your laboratory and practitioner are and whether they are using the new, narrower standards.

* As of 2011, many laboratories and practitioners are still using these outdated guidelines, and all evidence indicates that this will continue.

Total Thyroxine (Total T4)

T4—known as thyroxine—is the storage hormone produced by the thyroid. Total T4 measures the total amount of circulating T4 in your blood. Total refers to a combination of both the T4 bound to protein and the T4 that is free, or unbound to protein. A high value can indicate hyperthyroidism, a low value hypothyroidism. Total T4 levels can be artificially high, however, because both pregnancy and estrogen (including the estrogen in hormone therapy or birth control pills) raise thyroid binding globulin (TBG), and TBG elevates total T4 even when the actual levels of T4 circulating in your bloodstream are normal. When bound, thyroid hormone is not available to the cells, so most practitioners prefer to use the free (unbound) T4 test.

Free Thyroxine (Free T4)

Free T4 measures the free, unbound thyroxine (T4) levels circulating in your bloodstream. Free T4 is typically lower than normal in hypothyroidism and higher than normal in hyperthyroidism. Free T4 is considered a more accurate and reliable test than total T4. Some practitioners consider optimal free T4 during hypothyroidism treatment to be in the top half of the normal reference range.

Total Triiodothyronine (Total T3)

Triiodothyronine, or T3, is the active thyroid hormone at the cellular level. Total T3 is a measure of the combined T3 bound to protein as well as the free (unbound) T3. The total T3 level will typically be lower than normal in hypothyroidism and higher than normal in hyperthyroidism.

Free Triiodothyronine (Free T3)

Free T3 measures free unbound triiodothyronine in your bloodstream. Again, the free levels are considered more accurate than the total levels in the case of T3. Some practitioners consider optimal free T3 during hypothyroidism treatment to be in the top 25th percentile of the normal reference range.

Thyroglobulin or Thyroid Binding Globulin (TBG)

Thyroglobulin, also known as thyroid binding globulin or TBG, is a protein produced by your thyroid primarily when it is injured or inflamed due to thyroiditis or cancer. The normal thyroid produces low or no thyroglobulin, and so undetectable thyroglobulin levels usually mean normal thyroid function. But when TBG is leaking into the bloodstream and becomes detectable, it indicates some sort of thyroid abnormality. Thyroglobulin is typically elevated in Graves’ disease, thyroiditis, and thyroid cancer.

Thyrotropin-Releasing Hormone (TRH)

The TRH (thyrotropin-releasing hormone) test is a “stimulation” or “challenge” test rather than a measure of circulating hormones. It’s much like a three-hour glucose tolerance test to diagnose diabetes versus a fasting glucose level. The TRH test is considered a particularly good blood test for detecting subtle underactive thyroid problems. The time and cost involved in the test and the difficulty of getting the drugs needed to perform the test, however, have made it hard to get from most physicians.

Reverse T3

When the body is under stress or there are nutritional deficiencies or other issues impairing the thyroid’s ability to function, instead of converting T4 into T3—the active form of thyroid hormone that works at the cellular level—the body conserves energy by converting T3 into an inactive form of T3 known as reverse T3 (rT3). Elevated levels of reverse T3 can reflect a thyroid problem at the cellular level—a condition that Kent Holtorf, MD, calls “cellular hypothyroidism”—even though TSH, free T4, and free T3 values may well be within the normal reference range. The value of measuring and treating reverse T3 is controversial among conventional physicians, but this test has become commonly used by integrative physicians who are looking to assess a person’s full range of thyroid function.

Holistic gynecologist and hormone expert Sara Gottfried, MD, has integrated reverse T3 testing into her practice.

I used to order reverse T3 in a patient if I’d optimized the TSH and free T3 but the patient still had hypothyroidism symptoms, but now I order it more often at the start, because I think it’s informative in deciding about the formulation. For example, if a patient has high reverse T3, I’m more likely to use the compounded, time-release T3 as part of their treatment.

Some practitioners feel that reverse T3 should be below 150 for optimal hypothyroidism treatment.

Thyroid Peroxidase Antibodies

One of the most common thyroid antibody blood tests is thyroid peroxidase or TPO antibodies (TPOAb; also known as antithyroid peroxidase antibodies, or anti-TPO). This test is often done as a first step in diagnosing autoimmune thyroid disease. Thyroid peroxidase antibodies attack thyroid peroxidase, an enzyme that plays a part in the conversion of T4 to T3. TPO antibodies can indicate that the thyroid tissue is being destroyed, such as in Hashimoto’s disease and in some other types of thyroiditis such as postpartum thyroiditis, and TPO antibodies are detectable in approximately 95 percent of patients with Hashimoto’s thyroiditis. It’s thought that among patients with Graves’ disease, 50 to 85 percent will test positive for these antibodies.

Antithyroid Microsomal Antibodies or Antimicrosomal Antibodies

Antimicrosomal antibodies (also called antithyroid microsomal antibodies) are typically elevated when you have Hashimoto’s thyroiditis, and it’s thought that as many as 80 percent of Hashimoto’s patients have elevated levels of these antibodies. However, measurement of antimicrosomal antibodies has been replaced, for the most part, by the more state-of-the-art TPO antibody test.

Thyroglobulin Antibodies

Testing for thyroglobulin antibodies (Tg antibodies; also called antithyroglobulin or anti-Tg antibodies) is common. Tg antibodies are found in about 60 percent of Hashimoto’s patients and 30 percent of Graves’ patients.

Thyroid-Stimulating Immunoglobulins

Thyroid-stimulating immunoglobulins (TSI) can be detected in the majority of people with Graves’ disease—some say as many as 75 to 90 percent of patients. Their presence is considered diagnostic for Graves’ disease. The higher the levels, the more active the Graves’ disease is thought to be. The absence of these antibodies does not mean that you don’t have Graves’ disease, however. Some people with autoimmune hypothyroidism also have TSI, and this can cause periodic transient hyperthyroid episodes.

Thyroid Receptor Antibodies (TRAb)

TSH receptor antibodies (TRAb) are seen in most patients with a history of or who currently have Graves’ disease. TRAb may be:

• Stimulatory, in which case they cause hyperthyroidism (TSH stimulating antibodies, TSAb)

• Blocking, in which case they prevent TSH from binding to the cell receptor, and cause hypothyroidism (TSH receptor blocking antibodies, TBAb or TSBAb)

• Binding, in which case they interfere with the activity of TSH at the cell receptor

Patients with Graves’ disease tend to test positive for stimulatory TRAb, and patients with Hashimoto’s disease tend to test positive for blocking TRAb.

Thyroid Imaging Tests

In addition to blood tests, a variety of imaging and evaluation tests are sometimes used to make a conclusive diagnosis of thyroid disease, including:

•  Nuclear scan (also called radioactive iodine uptake, RAI-U): used to help differentiate between Graves’ disease, toxic multinodular goiter, and thyroiditis.

•  Computed tomography (CT) scan: a specialized type of X-ray that is used—not very frequently, however—to evaluate the thyroid, and frequently to diagnose a goiter or larger nodules.

•  Magnetic resonance imaging (MRI): done when the size and shape of the thyroid needs to be evaluated.

•  Thyroid ultrasound: done to evaluate nodules, lumps, and enlargement of the gland. Ultrasound can also determine whether a nodule is a fluid-filled cyst or a mass of solid tissue.

•  Needle biopsy (fine needle aspiration, FNA): done to evaluate suspicious lumps or cold nodules and assess whether a nodule is cancerous.

DIAGNOSING A THYROID PROBLEM

Based on the results of the patient history, review of symptoms, clinical examination, and blood imaging tests, doctors should be able to make an accurate diagnosis.

Diagnosing Hypothyroidism

To diagnose hypothyroidism, in addition to the history, symptoms, and clinical examination, conventional doctors consider the TSH test results. A TSH level above the reference range is considered hypothyroid, and will be flagged as “high” on test results. Remember, however, that there is controversy over the reference range, with some groups recommending the new range of 0.3 to 3.0, and many labs and doctors still using the old range of 0.5 to around 5.5.

Other blood tests that are typically done to help diagnose a straightforward case of hypothyroidism include:

•  Free T4 (free thyroxine). A low level along with an elevated TSH may indicate hypothyroidism.

•  Free T3 (free triiodothyronine). A low level along with an elevated TSH may indicate hypothyroidism.

In some cases, additional tests can be helpful. Kate Lemmerman, MD, is my doctor, and she works with many thyroid patients. I asked her to describe some of the key tests she uses to diagnose hypothyroidism:

To begin with, I order a panel of labs, including TSH, free T4, and free T3. If these are normal but the patient has a number of symptoms pointing to thyroid disease, then I will add the more expensive tests for thyroid antibodies and reverse T3, as well as cortisol and DHEA-sulfate. But the most important part of the diagnosis is a thorough history: What is your family history of thyroid disease and autoimmune diseases? Did your symptoms begin at a time of other hormonal changes, such as childbirth or menopause? (These periods can affect the thyroid, as the whole endocrine system is interrelated.) Is there a history of radiation to the thyroid area? (I have seen women become hypothyroid after radiation for breast cancer, especially those cancers high on the chest wall). The physical exam is also very important. Dry skin, thinning hair, puffy eyes, fluid retention, overly slow or overly fast reflexes—the latter often shows up when people have a combination of hypothyroidism, low magnesium, and adrenal dysfunction.

Diagnosing Hashimoto’s Thyroiditis

Hashimoto’s thyroiditis is the autoimmune disease that is the most common cause of hypothyroidism. The characteristic Hashimoto’s thyroiditis patient would have high or high-normal TSH values and low or low-normal free T3 and free T4 levels. The greatest distinguishing feature for Hashimoto’s is a high concentration of thyroid autoantibodies—anti-TPO antibodies in particular. (Some patients have elevated antibody levels for months or even years before the TSH level changes. But elevated antibodies can cause symptoms. And there is some evidence that treating elevated antibodies with a low dose of thyroid hormone medication may help reduce antibodies and prevent progression to overt hypothyroidism.)

Occasionally, fine needle aspiration biopsy of thyroid nodules or lumps will reveal evidence of Hashimoto’s disease, but FNA is not typically done just to diagnose Hashimoto’s disease.

Diagnosing Hyperthyroidism

A diagnosis of hyperthyroidism is usually made by means of a thyroid-stimulating hormone (TSH) test. Levels below 0.3 may be considered hyperthyroid.

Other blood tests that may be done to help diagnose hyperthyroidism include:

•  Free T4. A high level along with a low TSH may indicate hyperthyroidism.

•  Free T3. A high level along with a low TSH may indicate hyperthyroidism.

Diagnosing Graves’ Disease

In addition to hyperthyroid TSH levels (typically, a TSH level below 0.3) and high-normal or high free T4 and free T3, the thyroid-stimulating antibodies (TSAb) or thyroid-stimulating immunoglobulin (TSI) in your blood may be measured to diagnose Graves’ disease, the autoimmune condition that frequently causes hyperthyroidism.

A radioactive picture of the thyroid, made by ingesting a small amount of radioactive iodine by mouth, may also be taken to see if the thyroid gland is overactive. This overactivity of the thyroid gland is a hallmark of Graves’ disease.

Diagnosing Goiter

Several steps can be involved in diagnosing the enlarged thyroid known as goiter:

• Examining and observing your neck enlargement

• A blood test to determine if your thyroid is producing irregular amounts of thyroid hormone

• Antibody testing, to confirm that autoimmune disease may be the cause of your goiter

• An ultrasound test to evaluate the size of the enlarged thyroid

• A radioactive thyroid scan to produce an image of the thyroid and provide visual information about the nature of the thyroid enlargement

Diagnosing Thyroid Nodules

Nodules are usually evaluated by:

• A blood test, to determine whether your nodules are producing thyroid hormone

• A radioactive thyroid scan, which looks at the reaction of the nodule to small amounts of radioactive material

• An ultrasound of your thyroid, to determine whether the nodule is solid or fluid-filled

• A fine-needle aspiration or needle biopsy of your nodules, to evaluate whether the nodules may be cancerous

Diagnosing Thyroid Cancer

The main diagnostic procedure for suspected thyroid cancer is a fine-needle aspiration (FNA) of the thyroid nodule. In an FNA, a needle is inserted into various parts of the nodule, fluid and cells are removed, and these samples are then evaluated. Sometimes FNA tests are done with an ultrasound to help guide the needle into nodules that are too small to be felt. Between 60 percent and 80 percent of FNA tests show that the nodule is benign. Only about one in twenty FNA tests reveals cancer. The remainder of cases are classified as “suspicious,” and frequently a surgical biopsy or thyroidectomy is needed in order to rule out or diagnose cancer.

CHALLENGES TO GETTING PROPERLY DIAGNOSED

While it’s common for doctors to say, “Thyroid disease is easy to diagnose and easy to treat,” the reality is that diagnosis can be complicated. Many doctors don’t recognize thyroid symptoms, so patients who are struggling with weight are told to eat less and exercise more, instead of getting a thyroid test. Once thyroid problems are suspected, some doctors will perform only one test, the thyroid-stimulating hormone (TSH) test, and then base their diagnosis only on that result. This narrow approach misses patients who otherwise would be diagnosed by a thorough thyroid evaluation, such as one that takes into account clinical examination, review of symptoms, a thorough family and personal history, and other blood work and imaging tests as needed.

Uninformed Doctors

Surprisingly in this day and age, there are still practitioners who believe that they can simply look at a patient or feel her neck and rule out thyroid disease. Looking at the patient and feeling the thyroid gland for enlargement and lumps are only a small part of a clinical thyroid examination. As noted, a thorough clinical thyroid exam must also include a blood pressure and pulse check, weight check, evaluation of reflexes, and careful evaluation of clinical thyroid signs, such as loss of outer eyebrow hair, swelling in face and limbs, unusual skin patches, and other skin and hair disturbances. The doctor should then consider the findings, in addition to blood work and medical history, to make a diagnosis. If you are seeing a doctor who thinks he or she can rule out thyroid disease based on just looking at you or feeling your thyroid, get another doctor.

Ali Jagger, a thyroid patient, life coach, and weight-loss expert in the United Kingdom, explains her experience:

I intuitively knew something was wrong but my doctor had other ideas, accusing me of overeating and drinking too much. The most desperate time for me was when he said to me, “You know you’re really not doing yourself any favors looking like that!” I was feeling very lethargic by this point and had almost given up. My doctor didn’t recognize my classic symptoms and instead decided to focus on the fact that I had had a miscarriage six months earlier. He referred me to a private specialist, and I paid £500 to see a gynecologist who of course could find nothing wrong. The saddest thing for me was at the height of my illness I had absolutely no fight left in me, I was permanently exhausted and thought I was dying. I think that before I got ill—and I had never been sick previously—I had faith in the National Health Service and their staff . I now feel that there are many GPs practicing in the UK who are ignorant about this condition or just go by blood test results rather than listening to patients.

Over the course of two years, Kanya went to six different doctors complaining of weight gain.

I gained sixty pounds over two years, plus I had fatigue and depression. And every one of those six doctors said the same thing. “Yes, you have an enlarged thyroid, but the symptoms you are experiencing are a result of stress.”

Nikki Hundt-Prohaska is a thyroid patient advocate who runs online thyroid support groups at MedHelp and hears hundreds of stories each week from fellow thyroid sufferers.

One of the most upsetting complaints I hear about is the initial visit that brought them in to see their doctors. They complain about not feeling well and can’t quite put their finger on the cause or why. The discussion includes many things. Fatigue, foggy head, cold all the time, achy joints etc. Then the dreaded remark, normally filled with tons of emotion: “I’ve been gaining unexplained weight!” What I hear is that frequently, after weight gain is mentioned, it’s as if the appointment is practically over, because far too often the physician concludes that this patient may not have a real clinical thyroid issue, but instead is a fat, lazy couch potato or an inactive or depressed housewife. Many patients leave the appointment with a limp pat on the back and prescriptions for antidepressants and a water pill as the doctor says, “Diet and go to the gym.” Worst of all, sometimes the doctors say, “Well, you’re not getting any younger, you know!”

Difficulty Getting Tested

You may find that your doctor isn’t willing to test your thyroid. Sometimes it’s because the test was your idea, which can be a threat to an insecure doctor’s ego or sense of control. Or your doctor may be afraid that you are asking for a thyroid test because you think thyroid drugs are glorified weight-loss pills. Some HMO doctors face restrictions or financial disincentives to order laboratory tests. Finally, some doctors are simply not particularly aware of or informed about thyroid disease. I’ve even heard from patients that their doctors refused to perform thyroid tests, saying totally off-base things such as:

• “You’re only in your twenties. Only older people get thyroid disease.”

• “You just had a baby, and if you had a thyroid problem, you wouldn’t have been able to get pregnant.”

• “You’re a man, and men almost never get thyroid problems.”

• “You’re just looking for an excuse for being overweight.”

You may also find that you describe thyroid symptoms but end up with another diagnosis. If you say “fatigue,” “weight gain,” and “depression” to many doctors, you’ll leave the office not with a thyroid test but with a prescription for an antidepressant. Some researchers estimate that at least 15 percent of those diagnosed with depression are actually suffering from undiagnosed hypothyroidism.

Or you may be told that it’s your hormones—which is essentially true, but they’re talking about the wrong hormones here! Or you may be told you’re experiencing the effects of getting older, that you’re working too hard, that these are normal postpartum symptoms, or that it’s the result of a lack of exercise. If you describe feelings of anxiety and weight loss, you may, as some young women with hyperthyroidism have experienced, even be diagnosed as anorexic or bulimic.

When faced with a doctor who is oblivious or resistant to what may be very obvious thyroid symptoms, or won’t test when asked, the best option is to find another doctor, even if you have to pay for it yourself. But if you have no options, here are a few tips:

• Quantify your symptoms as much as possible. Many people go into the doctor saying, “I’m just so tired, and I can’t stand it. I’m gaining weight!” The doctor’s response is likely to be, “Get more sleep, get off the couch, exercise, and don’t eat so much.” Rather than saying, “I’m tired,” explain that you need to sleep ten hours a night instead of eight hours, and you’re still exhausted by dinnertime. Instead of saying, “I can’t lose weight,” say, “I’m eating 1,500 calories per day on a low-fat diet, doing four hours a week on the treadmill and two hours a week of muscle-building exercise, and I’m gaining two pounds a week.”

• Be persistent but unemotional. You may want to bring your Thyroid Disease Risks and Symptoms Checklist to your doctor (see chapter 1) and go over the key points with the doctor.

• If your doctor reviews your checklist and refuses to order thyroid tests, ask that a copy of your checklist be included in your medical chart after the doctor signs and dates it, indicating that he or she has read and discussed it. Keep a signed copy for yourself. Send a copy to the HMO or insurance company’s consumer liaison, along with your request that testing be approved.

• Write a letter that states the various reasons you have requested thyroid testing and the fact that this doctor has refused. Insist that the doctor sign it, place a copy in your chart, and give you a copy. (You can then use this copy with the HMO to argue for a referral to another doctor if needed.)

In today’s lawsuit-laden environment, doctors are especially concerned about officially documenting controversial medical decisions, so you’ll probably get the tests you need. It may seem ridiculous that you have to struggle to get standard medical tests and treatment, but it’s your health that is at stake, so keep fighting.

If you are unable to get your own physician to order the appropriate tests, then consider having your tests done through a patient-directed testing service. These services allow you to select the blood tests you want, pay for them out of pocket—usually at costs that are close to the wholesale rate and not the marked-up consumer rate—have the blood drawn at nationally certified laboratories, and the results sent back to you. You can then use this information as part of your criteria in choosing a new doctor, or you may find that the test results allow you to reopen the dialogue with your existing physician. There are a number of these services available—the one I have worked with for years is MyMedLab. More information is available in the Resources section.

TSH Is “Normal”

Frequently, even after being tested, patients are told, “Your thyroid tests were normal.” This assessment is based on a misguided practice some doctors have of diagnosing hypothyroidism based only on the thyroid-stimulating hormone (TSH) test. These doctors believe that if the TSH test result shows you as being within the TSH reference range for normal that they subscribe to, then you do not have a thyroid dysfunction.

As noted earlier, there is disagreement as to the reference range itself, and for almost a decade doctors have disagreed over the guidelines. The upshot? While the so-called normal reference range at many labs continues to be shown as from around 0.5 to 5.0, some endocrinologists use the range of 0.3 to 3.0 in their practice, and a subset of practitioners believe that the top end of the range actually should be lowered even further, to 2.5.

Adrienne Clamp, a McLean, Virginia–based physician who now works extensively with thyroid patients—and is a thyroid patient herself—explains:

I myself suffer from hypothyroidism and it was difficult for me to get help with it because my numbers were “normal,” even though I did not feel well. There is nothing like personal experience to teach one about an issue in a whole new way. I think that often patients are not taken seriously when they express how poorly they feel. In my experience, most thyroid patients have a very difficult time being taken seriously if their numbers are normal. They are often offered antidepressants and psychotherapy when what they need is optimization of their thyroid hormone levels.

Any way you look at it, according to the narrower recommended range, millions more people are considered hypothyroid and could qualify for treatment.

Still, many doctors are operating according to the old normal range and therefore will inaccurately rule out thyroid conditions. Get a copy of the guidelines online at ThyroidDietRevolution.com and share them with your doctor.

And if your TSH is borderline—or what some physicians refer to as subclinical—your doctor may refuse to treat you, or suggest that you wait until the TSH goes up further before you get treatment. Don’t accept a response of “wait and see.” Ask for the actual number, and ask for the normal range for the lab where your blood was tested. Show your doctor your Thyroid Disease Risks and Symptoms Checklist and ask about a trial course of treatment to see if your symptoms improve. If your doctor is so number-obsessed that it’s like talking to an accountant instead of a health care practitioner, start looking for a new doctor.

Fear of Osteoporosis

Some practitioners fear that diagnosing and treating mild or borderline hypothyroidism will increase the risk of osteoporosis. This fear is based on studies that have shown that extended periods of hyperthyroidism—and in particular, extremely low, suppressed TSH levels—can be a risk factor for osteoporosis. There are also several inconclusive studies that suggest that long-term treatment of hypothyroidism may increase the risk of osteoporosis. At the same time, there are many studies that show that thyroid treatment does not increase the risk of osteoporosis, and that treatment may in fact assist with bone growth and help halt or reverse osteoporosis. One important study looked at more than sixty studies of the thyroid-osteoporosis connection that were published throughout the 1990s. Ultimately, this meta-review found no association between the duration of thyroid treatment and an associated reduction of bone mineral density.

Some doctors, unfortunately, employ faulty logic and decide that if a very low TSH level poses a risk, treatment might pose a risk, so failing to diagnose hypothyroidism when TSH is at high-normal levels will avoid the risk.

Reliability of the TSH Test

There is also a question as to the reliability of the TSH test itself. Dr. Richard Shames, a noted thyroid practitioner and author of a number of books on thyroid disease, has found that the practice of allowing TSH blood samples to sit for hours before they are collected and shipped to a laboratory for analysis can result in degradation of the sample. Says Dr. Shames, “A TSH that might have been measured at a 6.0 or 7.0 can degrade so that by the time it’s measured, it actually ends up in the normal range.”

The time of day a TSH test is taken also affects the result. The highest TSH level is typically the level obtained from a fasting blood test first thing in the morning. TSH levels then start to drop significantly throughout the day. This results in as many as 6 percent of patients having a hypothyroid morning TSH but a normal reference range TSH later in the day.

Getting a proper diagnosis sometimes means you will need to be careful when and where you have your blood work done, and ask about whether the sample will be properly refrigerated and stored before it’s sent to the lab for analysis. Given the significant questions about the TSH reliability overall, you may also need to see a physician who does not base his or her entire diagnosis on this test alone.

Overreliance on the TSH Test, and Failure to Test Free T4 and Free T3

Another challenge for patients who have a TSH that is normal—even if by the new standards—is that a normal TSH may not reflect what is actually going on in terms of the circulating levels of thyroid hormone in the body. To measure the thyroid hormone, the free T4 and free T3 tests are performed. (Note: The total T4 and total T3 are considered less useful by many practitioners, because they include bound thyroid hormone that is not usable by the body, while the free levels do not.)

Many practitioners and patients feel that the thyroid treatment is optimized when TSH is within the reference range but free T4 and free T3 are at the middle of the normal range or higher. Some practitioners feel it is especially important that the free T3, in particular, be in the upper end of the normal range for patients to feel well. In some cases, patients have been able to make a case to a physician for thyroid treatment even with a so-called normal TSH when free T4 and free T3 levels were on the low end of normal or below normal.

What this means is that if you have a normal TSH but your free T4, free T3, or both are in the lower half of the normal range, you may want to discuss treatment to help resolve this imbalance.

Failure to Test for Antibodies

Even though autoimmune problems are most frequently the cause of thyroid conditions, many physicians do not routinely conduct the antibody tests that diagnose autoimmune thyroid disease. This presents a problem because elevated thyroid antibodies, even in the presence of normal TSH levels, mean that you have autoimmune thyroid disease and that your thyroid is suffering from autoimmune dysfunction. The dysfunction may not be significant enough to register as an abnormal TSH level, but the presence of antibodies may generate symptoms and is predictive of thyroid problems down the road.

The practice of treating patients who have Hashimoto’s thyroiditis but normal-range TSH levels is supported by studies that show that treatment for “euthyroid” Hashimoto’s autoimmune thyroiditis—where TSH had not yet elevated beyond normal range—can actually reduce the chance and severity of autoimmune disease progression. The researchers speculated that such treatment might even be able to stop the progression of Hashimoto’s disease or prevent the development of hypothyroidism.

Many doctors, however, will not treat patients who present clinical symptoms of hypothyroidism and test positive for Hashimoto’s antibodies but have a normal TSH level. You may have to actively interview endocrinologists, as well as holistic doctors, osteopaths, and other practitioners, to find one who will treat you if you have a normal TSH level with thyroid antibodies and symptoms.

Failure to Test for Reverse T3

One of the most difficult situations is having an underlying thyroid problem that does not show up on standard thyroid blood tests. You may have a family history of thyroid disease or a number of thyroid symptoms—even a low basal body temperature—but you have TSH, free T4, free T3, and antibody levels that are normal. What you may be experiencing is thyroid hormone resistance, where your body is capable of producing thyroid hormone, but nutritional and metabolic dysfunctions have made your tissues unable to properly absorb and respond to it. This is similar to the better-known concept of insulin resistance, where your body produces enough insulin, but your cells become resistant to it, so your body loses its ability to respond to it.

You may also have thyroid hormone conversion problems, where you have enough T4 and T3 in the bloodstream, but the organs and tissues are not effectively converting the inactive T4 into the active T3 that you need at the cellular level. In both cases, you may show normal circulating levels, but you are hypothyroid at the level of your tissues, organs, and cells.

Thyroid hormone resistance and conversion problems are very difficult to diagnose with blood tests. The thyrotropin-releasing hormone (TRH) test—the one laboratory test typically able to detect this sort of dysfunction—is generally not being done anymore. Some practitioners perform a reverse T3 test, which measures the conversion of T4 to reverse T3—an inactive form of T3. This typically occurs when the body is under stress and is cause for treatment according to some practitioners. This test is considered irrelevant by many mainstream practitioners, however.

The bottom line is that if you suspect thyroid resistance or conversion problems, you will need a practitioner who is skilled in clinical, observational diagnosis and who, in the face of normal blood test values, will still be willing to try you on a course of thyroid treatment if you have observable signs of hypothyroidism. Typically, this would be a holistic or alternative medicine physician with expertise working with thyroid disease and other difficult-to-diagnose conditions.