When Thyroid Disease Is Difficult to DiagnoseI am sitting on the edge of an exam table, a little giddy because I believe I have found an endocrinologist who will diagnose and treat me for the chronic fatigue, 30-pound weight gain, excruciating migraines, and other symptoms that have been holding me hostage in my own body for years. Seconds later I am weeping, face in my dripping hands, as she tells me that my blood tests are normal, my thyroid is normal; “there’s nothing wrong with you.” The long list of symptoms I brought with me is arbitrary and irrelevant to her.

She is Dr. #3. It won’t be until Dr. #6 that I will stop the tears and the exhaustion and the mental fog that have robbed me of most of the last decade of my life.

An estimated 10 to 15% of Americans—that’s 30 or 40 million people—have poorly functioning thyroid glands and don’t know it. Some suffer from a combination of debilitating symptoms that include chronic fatigue, migraines, muscle weakness, hair loss, unexplained weight gain, inability to concentrate—the list goes on and on—but are turned away by doctor after doctor with the assurance that their blood tests are normal.

Why do mainstream doctors miss the diagnosis so often? “Their training teaches them to place a secondary value on their own clinical observations,” says Dr. Steven Lager, a board-certified physician specializing in thyroid disorders. “If a sophisticated lab test tells them otherwise, they don’t need to rely on their patients’ symptoms and their own judgment.”

I am one of the millions with multiple symptoms and a family history of thyroid disease whose TSH blood test is within “normal” range…If we are middle-aged and female (as many of us are), we are likely to be told that our symptoms are perimenopausal and be handed an Rx for an antidepressant.

I couldn’t even make the five-minute walk from the train station to my home without having to stop to rest. My daughter didn’t think there was anything unusual about a mom who seemed to be lying down all the time. But, according to my doctors, I was fine. When I finally made it to Dr. #6, I discovered that the revolutionary solution is totally retro: a return to a prescription drug made from dessicated pig thyroid that had been used successfully for 100 years. The treatment went out of favor after the introduction in 1973 of the TSH (thyroid-stimulating hormone) blood test, with its wide and sometimes shifting range for normal. Even patients whose TSH test results earn them a diagnosis often continue to be symptomatic on the standard drug, Synthroid.

I am one of the millions with multiple symptoms and a family history of thyroid disease whose TSH blood test is within “normal” range. We try our best to keep up with our jobs, our spouses, our children. We may fall asleep at the wheel or slip away from the family party to lie down. If we are middle-aged and female (as many of us are), we are likely to be told that our symptoms are perimenopausal and be handed an Rx for an antidepressant.

Conventional doctors easily confuse the once-classic symptoms of hypothyroidism (a thyroid gland that is producing little or no thyroid hormone) with vague problems associated with stress or aging. If it goes untreated long enough, your adrenal glands will try to pick up the slack. When they’re shot, too, you will be functioning at a very low level indeed.

The trick is to find a doctor who will test you for Free T3, Free T4, and thyroid antibodies. This will rarely be an endocrinologist—more likely an osteopath or integrative practitioner (you may have luck finding one here). The “Free” levels measure the amount of thyroid hormone actually in your cells—not just circulating in the bloodstream, where it may never finish its journey to do you any good. Thyroid antibodies may be more commonly tested, but their presence may not be the cry for help it should be. The first endocrinologist I was referred to by my PCP (when he noticed a swelling on both sides of my throat, long after I had complained to him of fatigue and a headache about 80% of the time) found plenty of antibodies—meaning my immune system was attacking my thyroid as a foreign invader. His response? None. My TSH fell within range. It would be over a year before any treatment would begin, a year in which my thyroid gland would busily continue to destroy itself and sprout multiple nodules.

With today’s mind-set, a blood lab would trump a patient’s self-report. If the concept behind the lab test is faulty, as many say it is for thyroid testing, no amount of symptoms or suffering will persuade a mainstream doctor to treat you.

What happens when your thyroid—a small, butterfly-shaped gland located at the front and center of your neck—is not functioning normally and you don’t get proper thyroid replacement treatment? Seeing as how the thyroid is considered the gas pedal for the entire body, you will not be surprised to learn that the symptoms can include all the ones I suffered from, in addition to a score of others, including muscle weakness, hair loss, mild depression, cold hands and feet, constipation, PMS, and dry skin and hair. Oh, and high cholesterol. In fact, testing for cholesterol used to be the way thyroid disease was diagnosed. (Since I began thyroid treatment, without any change in diet or exercise, my cholesterol level has dropped 54 points.)

For 100 years, up until the 1970s and the introduction of the one-size-fits-all approach to thyroid management, patients had been treated with the natural thyroid hormone replacement Armour. Thyroid sufferers were treated based on the symptoms they described to their doctors. With today’s mind-set, a blood lab would trump a patient’s self-report. If the concept behind the lab test is faulty, as many say it is for thyroid testing, no amount of symptoms or suffering will persuade a mainstream doctor to treat you.

Over many months, I slowly increased the Armour until I reached the optimal dose for me. I lost the 30 pounds and gained a normal level of energy and concentration. I am grateful to have my life back, but it shouldn’t have taken several years and several doctors to get the help I needed. There is a grassroots movement to bring patients the information and resources we need. Spread the word to anyone you know who is still suffering.

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Read about Linda Carbone.

5 Comments

  • Kathleen
    Posted October 20, 2013 9:19 am 0Likes

    Thank you, Ms. Carbone, for writing this article and sharing your experience. This is such valuable information. The traditional medical response to this issue us maddening. Hopefully this article will help a few folks who are also suffering. I am going to share this info. With my friends.

  • Sue
    Posted October 20, 2013 10:26 am 0Likes

    Good, informative article. I too have been going through the same problem and finally found a nurse practitioner who specializes in this area. I’ll be sharing this article with friends. Thank you!

  • Pamela
    Posted October 20, 2013 11:28 am 0Likes

    I’m sharing this article on all social media sites. Very helpful information….have already seen plenty of feedback from only the first two “shares.” Thank you for writing this piece.

  • Violet
    Posted October 20, 2013 6:32 pm 0Likes

    Such an inspiring tale about the struggle for recognition of a very debilitating and very real problem for so many Americans! This information is so valuable for those who are suffering with this. Thank you for bringing awareness.

  • Maggie
    Posted April 5, 2022 8:32 pm 0Likes

    I have been suffering from tiredness, dry skin, and hair loss for decades. My gynocologist prescribed a low dose thyroid pill right after my second pregnancy–it meant a world of difference. Later physicians decided I didn’t need this treatment, relying solely on the TH3 thyroid test. A few years ago my endocrinologist ordered a scan of my thyroid which showed five ‘spots.’ I took this scan two years in a row, she then discontinued it because she determined that the ‘spots’ weren’t growing. But they were still there… Doctors need to learn that a simple TH3 test can be wrong and when the patient keeps reporting classic symptoms perhaps some other kind of testing would be
    more appropriate than just relying on that TH3 test. My comments today are much the same as the above which were posted in October 2013. Thank you for bringing this issue to the forefront, I will print out your comments and share them with my doctor.

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