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Challenges to Getting a Proper Hypothyroidism Diagnosis

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Updated May 15, 2014

Challenges to Getting a Proper Hypothyroidism Diagnosis

There are many challenges patients face in getting a proper diagnosis of hypothyroidism.

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We often hear doctors saying, "Thyroid disease is easy to diagnose and easy to treat." But the reality is that thyroid diagnosis can be complicated. Many doctors don't recognize thyroid symptoms at first glance, so patients who are struggling with weight gain, or fatigue, are told to eat less and exercise, or get more sleep, instead of getting thyroid tests. 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 thyroid blood work and thyroid imaging tests as needed.

Here is a look at some of the more common challenges to getting a proper hypothyroidism diagnosis.

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, as well as feeling the thyroid gland for enlargement and lumps, are only a small part of a clinical thyroid examination. A thorough clinical thyroid exam must also include checks of blood pressure, pulse, weight, reflexes, and evaluation of clinical thyroid signs. The doctor should then consider the findings, in addition to thyroid blood work results and personal and family medical history, to make a diagnosis. If you are seeing a doctor who thinks he/she can rule out thyroid disease based on looking at you, or just feeling your thyroid, it's time to get another doctor.

Difficulty Getting Tested

You may find that your doctor isn't even willing to run thyroid tests. 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 are hoping that thyroid drugs will help you lose weight. 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 truly uninformed things like:
  • "You're only in your 20s. 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 the words "fatigue," "weight gain," and "depression" to many doctors, you may leave the office not with thyroid tests but with a prescription for an antidepressant.

Or you may be told that it's your hormones (which is essentially true, but they're talking about the wrong hormones!) Or you may be told you're experiencing the effects of getting older, working too hard, postpartum symptoms, or 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 for your thyroid care, 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 10 hours a night instead of 8 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 4 hours a week on the treadmill, and 2 hours a week of muscle-building exercise, and I'm gaining 2 pounds a week."
  • Be persistent but unemotional. You may want to bring a thyroid risks and symptoms checklist to your doctor 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/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 charts, 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, direct-to-consumer laboratory testing service. These services allow you to select the blood tests you want, pay for them out of pocket, or even with insurance coverage-- 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 directly. 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

Your "Thyroid is Normal"

Frequently, even after being tested, patients are told "your thyroid tests were normal." This assessment is based on a controversial 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.

There is disagreement as to the "reference range" for the TSH test itself, and for a decade, doctors have disagreed over the guidelines, but they have not been formally changed. So, while the so-called "normal" reference range at many labs continues to be shown as from around .5 to 5.0, some endocrinologists use the range of .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.

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.

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. Think about whether you want to to accept 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 risks and symptoms checklist, and 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 have a fear that diagnosing and treating mild or borderline hypothyroidism will increase your 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 other 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. Some doctors have, unfortunately, employed faulty logic, and decided if a very low TSH level poses a risk, and treatment might pose a risk, then failing to diagnose hypothyroidism when TSH is high normal will avoid the risk.

Quality/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.

The time of day a TSH test is taken also affects the result. The highest TSH level is typically the level obtained from a first thing in the morning fasting blood test. TSH levels then start to drop significantly throughout the day. This results in as many as 6% of patients having a hypothyroid morning TSH, but "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 bloodwork 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/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 actual 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 levels of 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 even 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 and/or Free T3 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 - most commonly, Thyroid Peroxidase, or TPO, antibodies -- 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 can be supported by studies that show that treatment for "euthyroid" Hashimoto's autoimmune thyroiditis-where the 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 will not, however, 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.

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