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Old Tue, Apr-12-16, 06:14
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JEY100 JEY100 is online now
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Default Doctors Hear Patients’ Calls for New Approaches to Hypothyroidism

Doctors Hear Patients’ Calls for New Approaches to Hypothyroidism

Wider treatment options for a hormone condition easily mistaken for other illnesses

Quote:
Doctors and patients have been at each other’s throats for decades over how to treat a little gland in the neck—and patients may be gaining ground.

The butterfly-shaped thyroid gland produces hormones that regulate virtually every system in the body. Not enough production of thyroid hormones, known has hypothyroidism, can cause fatigue, weight gain, depression and other metabolic and fertility problems. Too much, the less common hyperthyroidism, can cause heart palpitations, tremors and bone loss.

Because those symptoms can have several other causes, many doctors diagnose thyroid disorders mainly with blood tests. Many also rely on a single form of treatment for hypothyroidism, which has made the synthetic hormone levothyroxine (Synthroid and other brands) among the most prescribed medications in the world.

But a vocal group of patients say they haven’t gotten better on levothyroxine, though their blood tests have returned to normal. They’ve banded together online to share their frustrations and promote alternative therapies.


Quote:

Some top endocrinologists are coming around to their view. Studies have confirmed that 5% to 15% of patients don’t get better on levothyroxine alone. Discoveries of gene variations may help explain why.


“More doctors are thinking, ‘Have we missed something? Could there be a role for combination therapy in some patients?’ ” says Jacqueline Jonklaas, an endocrinologist at Georgetown University Medical Center.

“I credit this to patients pushing doctors and saying, ‘You don’t know what you’re talking about. I don’t feel fine,’ ” says Antonio Bianco, president of the American Thyroid Association. Dr. Bianco, who is also chief of endocrinology at Rush University Medical Center in Chicago, says he has refocused the research to search for answers for such patients.

Dr. Jonklaas and Dr. Bianco co-wrote the association’s 2014 guidelines, which acknowledged that not all patients improve on levothyroxine. The guidelines said there was insufficient evidence to recommend other therapies, but many task force members thought they could be used on an individual basis, Dr. Jonklaas says.

Plenty of endocrinologists remain guarded about alternate thyroid treatments. James Hennessey, chief of endocrinology at Beth Israel Deaconess Medical Center in Boston, notes that a long list of other conditions have symptoms similar to thyroid disorders, including obesity, diabetes, sleep apnea, depression, kidney failure, congestive heart failure and chronic fatigue. He says doctors should investigate them all before trying alternative thyroid treatments.

Some patients want doctors to try more than one test:

A TSH test measures thyroid-stimulating hormone, or TSH, a signal from the pituitary gland that the body needs more thyroid hormone.

A Free T3 test measures triiodothyronine, or T3, the active thyroid hormone. High levels may indicate Graves’ disease. Low levels may signal thyroid deficiency.

A Free T4 test measures thyroxine, or T4, in the bloodstream that can be converted to T3 in the tissues. High levels indicate hyperthyroidism. Low levels indicate hypothyroidism.

Tests measure thyroid peroxidase antibodies, or TPOAb, or thyroglobulin antibodies, or TgAb. High levels indicate the autoimmune condition Hashimoto’s disease is affecting the thyroid.

A physical exam checks the thyroid gland for nodules or tumors.

An estimated 20 million Americans suffer from hypothyroidism, according to the American Thyroid Association. Other estimates run as high as 60 million, depending on the criteria used. About 80% are women and about 60% are undiagnosed, in part because the symptoms mimic other disorders.

Many endocrinologists urge primary-care physicians to check thyroid levels before treating patients for depression, bipolar disorder, diabetes, high cholesterol and infertility problems. But some patients say many doctors don’t.

Hypothyroidism was treated for decades with extracts made from dried, or desiccated, pig thyroids. Brands such as Armour Thyroid supplied both of the hormones secreted by the thyroid gland—thyroxine (T4) and triiodothyronine (T3).

For years, doctors adjusted dosages based on patients’ symptoms. But overdoses, leading to heart problems and bone loss, were common, experts say.

In the 1970s, researchers developed a test for thyroid-stimulating hormone (TSH), the signal the pituitary gland sends the thyroid to release more hormones. (An elevated TSH level means thyroid levels are low.) Scientists also discovered that the hormone T4 is converted to T3, the more active form, in the tissues. And they determined that giving patients synthetic T4—levothyroxine—was all that was needed to return TSH levels to normal.

Patient activist Mary Shomon says doctors too often dismiss the concerns of female patients with hypothyroidism.

But some hypothyroid patients didn’t feel better on levothyroxine alone—and couldn’t convince their doctors they still had thyroid issues.

Mary Shomon, who was diagnosed with hypothyroidism in 1995, became an early activist, writing on About.com on thyroid issues and later founding her own site, thyroid-info.com.

She says many women recognize their symptoms when they learn about hypothyroidism or have symptoms persist after they are treated. But all too often, doctors dismiss them as whiny or lazy if their TSH is in the normal range.

“It’s so much easier to tell a woman to get up off the couch or hand her a prescription for antidepressants,” says Ms. Shomon, who is based in Washington, D.C.

Despite the new approach by some doctors, she says she still hears from women who have trouble getting doctors to listen to their symptoms. “I’ve had people tell me they were ‘fired’ by their doctors for asking for T3,” she says.

She and other patient activists urge doctors not to test TSH alone, but also T4 and T3 levels, and thyroid antibodies, a sign of the autoimmune condition Hashimoto’s disease, in which the immune system mistakenly attacks the thyroid gland. “With Hashimoto’s, you can have the whole laundry list of symptoms and all your other levels will look normal,” she says.

Dana Trentini founded the website Hypothyroid Mom.

Another patient activist, Dana Trentini of Jersey City, N.J., was diagnosed with hypothyroidism after her first pregnancy in 2006. But her second pregnancy ended in miscarriage—in part, she believes, because her prescribed dose of T4 brought her TSH level only down to 8. Experts now recommend that pregnant women have a TSH below 2.5.

She has since founded a website, Hypothyroid Mom, which gets nearly 1 million unique visits a month. “I think my life’s mission is to get universal thyroid screening for pregnant women,” she says.

Some patients insist they feel better on Armour Thyroid and other natural thyroid extracts that deliver T3 as well as T4. But manufacturing shortages and industry consolidation have made such products difficult to find at times.

Many doctors are wary, because such animal thyroid extracts contains a higher ratio of T3 to T4 than humans have and could raise the risk of heart and bone problems.

Some doctors are more comfortable prescribing synthetic T3—brand name Cytomel—which comes in very small doses.

Giving Cytomel alone, or in combination with T4, has been tested in nearly two dozen clinical trials. Results have been mixed—in part, some researcher say, because T3 peaks and fades very quickly in the bloodstream, so it’s difficult to sustain therapeutic levels.

“It’s not the golden ticket,” says Elizabeth McAninch, an endocrinologist at Rush University Medical Center. “I have some patients who feel better on combination therapy and some who don’t.”

Dr. Jonklaas and other researchers involved in the 2014 guidelines also hope to do a clinical trial with 1,200 hypothyroid patients on either T4 alone, T3 and T4 in combination or desiccated thyroid extract. They also plan to test participants for genetic variations and hope to identify subsets of patients who respond better to one treatment or another.

Meanwhile, she and other endocrinologists say they are increasingly willing to try a small dose of T3 in patients who don’t feel better on T4 alone.

“I tell patients I don’t have a clinical trial that shows this is the right thing to do, but based on my experience, I suggest we try this for three or six months,” Dr. Bianco says. “If there’s no clear evidence of benefit, we’ll discontinue it.”

“The important thing is to try to make the patient feel better and do it in a safe way,” he says.

Write to Melinda Beck at HealthJournal~wsj.com



Lead story of the Personal Section today. There are charts, photos, etc but WSJ is a subscription.

Last edited by JEY100 : Tue, Apr-12-16 at 06:19.
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