“There are so many unhappy thyroid patients”; Traditional means for diagnosing and treating the condition don’t work for all patients who are calling for doctors to be open to other therapies

August 5, 2013, 8:14 p.m. ET

New Call for More Thyroid Options


Hashimoto’s disease, the most common cause of underactive thyroid, is easily treated with hormone replacement drugs. But it’s hard to spot and often misdiagnosed, as the symptoms can have multiple causes. Sumathi Reddy looks at efforts to improve diagnosis. 

Some people with hypothyroidism, or underactive thyroid glands, are organizing and agitating. Their complaint? That traditional means for diagnosing and treating the condition don’t work for all patients. Grass roots patient-activist organizations with names like ThyroidChange and Thyroid Patient Advocacy, and the doctor-founded National Academy of Hypothyroidism, say that the current screening test for hypothyroidism leaves out some symptomatic patients and that the main medication used to treat patients, doesn’t always alleviate many symptoms. They are calling for doctors to be open to other therapies, including a combination of synthetic hormones and the use of natural, animal-based ones.Hashimoto’s Disease: A Primer

How to spot and treat the leading cause of an underactive thyroid.

Who gets it?Some .1% to 5% of adults in Western nations are affected—especially middle-aged women.

Symptoms: Fatigue, hair loss, weight gain, constipation, dry skin, elevated cholesterol, concentration problems, depression, muscle aches and a visibly enlarged thyroid gland, or goiter.

Causes: Experts aren’t exactly sure, but believe it could be caused by genes or environmental factors, such as viral attacks.

Risks:Untreated, it can lead to birth defects in pregnant women, mental health issues and heart problems.

Diagnosis:A blood test measures the level of thyroid-stimulating hormone, or TSH, that regulates the gland’s functioning. A higher TSH signals a more underactive gland.

Common Treatment:A synthetic hormone called levothyroxine, which mimics thyroxine (T4), a hormone made by the thyroid gland. Some patients prefer combining T4 with T3, another thyroid-produced hormone.

SOURCE: MedlinePlus (A service of the U.S. National Library of Medicine and NIH); MayoClinic.com

“There are so many unhappy thyroid patients,” says Ridha Arem, an endocrinologist and director of the Texas Thyroid Institute, who founded the journal Clinical Thyroidology. He believes recommended screening and treatment options for hypothyroidism—which occurs when thyroid glands fail to produce enough hormones to keep the body’s metabolism working properly—aren’t always adequate.

Many of his mainstream medical counterparts disagree. “The vast majority of people are fine on the standard therapy,” says Jeffrey Garber, an associate professor of medicine at Harvard Medical Center and chair of the American Association of Clinical Endocrinologists Thyroid Scientific Committee. Still, he says, “there’s a whole group out there who just thinks we’re clueless.”

Dr. Garber, one of the authors who updated the clinical-practice guidelines for hypothyroidism last year, says while there have been some intriguing studies looking at different therapies, more research is needed.

Hypothyroidism, the most common thyroid disorder, is most often caused by an autoimmune disorder called Hashimoto’s disease, in which the body’s immune system attacks the thyroid.

The thyroid is a U-shaped gland composed of soft tissue that sits in the front lower part of the neck. The tissue releases chemicals, or thyroid hormones, that circulate through the bloodstream and affect the metabolic system, and other functions in the body. When thyroid hormone levels are too low, people start to feel sluggish and tired. Other symptoms can include weight gain, hair loss, constipation, muscle aches, high cholesterol and depression.

The wide range of symptoms, so similar to those of many other diseases, can make diagnosis tough. When testing the thyroid-stimulating hormone (TSH) levels—generally used as the deciding factor in putting patients on medication—higher ones signal a more underactive gland. But because TSH levels fluctuate within an individual, testing alone may dismiss worthy patients, says Dr. Arem of the Texas Thyroid Institute. He says he uses a more narrow range of TSH when diagnosing patients and looks at other factors, as well, such as family history and ultrasound tests of the thyroid gland.

Newborns and pregnant woman are routinely tested. Experts recommend screening all women over the age of 35 every five years.

For treatment, guidelines generally call for the prescription of levothyroxine, a synthetic version of a hormone called thyroxine, or T4, which is produced by the thyroid. The gland also produces one other hormone, Triiodothyronine, or T3.

Most doctors, says Dr. Arem, generally prescribe T4-only medications. But such medications may leave some patients with lingering symptoms such as fatigue and depression and, in some cases, low T3 levels.

Some patients go to alternative health professionals to get prescriptions for drugs such as desiccated thyroid extract (DTE) prepared from animal thyroid glands, which include a combination of T4 and T3.

The danger here, Dr. Arem says, is such patients could end up with an excessive amount of T3, resulting in symptoms of overactive thyroids, such as anxiety and a fast or irregular heart rate. He advocates a combination approach with amounts tailored to the individual.

Michelle Bickford, 36, co-founder of advocacy group ThyroidChange, was diagnosed with Hashimoto’s when she was 11. She was on levothyroxine for years, but found she still suffered from symptoms such as depression, anxiety and fatigue. “When I complained of these things to my doctors they generally just told me to go see a dermatologist or go see a psychiatrist,” says the adjunct communications professor at Montclair State University in New Jersey.

About six months ago, she got a prescription for a combination, animal-derived medication. “I feel much better,” she said. “I have a lot of energy, I started to lose weight.”

Most studies looking at combination approaches show conflicting results. One study, published in May in the Journal of Clinical Endocrinology & Metabolism, conducted a randomized controlled double-blind trial using levothyroxine and DTE.

About half the patients preferred the DTE therapy, which led to modest weight loss. But it didn’t result in a significant improvement in quality of life, as measured by a patient questionnaire. The study’s authors said in a news release that it showed DTE may be a good alternative therapy for a limited number of patients. Harvard’s Dr. Garber says there may be certain subsets who are genetically programmed to respond to such combination therapies.

Dr. Garber, like many endocrinologists, uses T4 medications with the vast majority of his patients. Occasionally he’ll also use conservative doses of a synthetic T3 drug, but he virtually never prescribes the animal-derived form, he says, because of complications that could arise for women trying to get pregnant or in early pregnancy, as well as individuals with heart disease.

About bambooinnovator
Kee Koon Boon (“KB”) is the co-founder and director of HERO Investment Management which provides specialized fund management and investment advisory services to the ARCHEA Asia HERO Innovators Fund (www.heroinnovator.com), the only Asian SMID-cap tech-focused fund in the industry. KB is an internationally featured investor rooted in the principles of value investing for over a decade as a fund manager and analyst in the Asian capital markets who started his career at a boutique hedge fund in Singapore where he was with the firm since 2002 and was also part of the core investment committee in significantly outperforming the index in the 10-year-plus-old flagship Asian fund. He was also the portfolio manager for Asia-Pacific equities at Korea’s largest mutual fund company. Prior to setting up the H.E.R.O. Innovators Fund, KB was the Chief Investment Officer & CEO of a Singapore Registered Fund Management Company (RFMC) where he is responsible for listed Asian equity investments. KB had taught accounting at the Singapore Management University (SMU) as a faculty member and also pioneered the 15-week course on Accounting Fraud in Asia as an official module at SMU. KB remains grateful and honored to be invited by Singapore’s financial regulator Monetary Authority of Singapore (MAS) to present to their top management team about implementing a world’s first fact-based forward-looking fraud detection framework to bring about benefits for the capital markets in Singapore and for the public and investment community. KB also served the community in sharing his insights in writing articles about value investing and corporate governance in the media that include Business Times, Straits Times, Jakarta Post, Manual of Ideas, Investopedia, TedXWallStreet. He had also presented in top investment, banking and finance conferences in America, Italy, Sydney, Cape Town, HK, China. He has trained CEOs, entrepreneurs, CFOs, management executives in business strategy & business model innovation in Singapore, HK and China.

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