13 Thyroid Rules for Patients

Mary Shomon | Oct 10th 2017 Oct 13th 2017

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If you have a thyroid condition, there are some unspoken — and sometimes quite loudly spoken — rules that can make all the difference when it comes to effective thyroid diagnosis and treatment, and resolving your persistent symptoms. I asked my thyroid community to share their thoughts on some of their best rules for success when it comes to thyroid health. Here are 13 of the best ideas to help you thrive during and after your thyroid diagnosis.

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1. “Normal” thyroid test results may not be normal for you.

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Thyroid patients often have to go through several doctors and multiple tests before getting properly diagnosed and treated. Until then, they may have a “normal” thyroid stimulating hormone (TSH) level that is dismissed.

Sherry’s doctor asked her: “Have you seen a psychiatrist? Because your TSH is fine."

Ruth’s doctor decided that because her TSH results were normal: “Your symptoms are because you are just getting old.”

Cathy says: “Don’t let docs look at a lab slip and tell you all is ok.”

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2. We’re thyroid patients...NOT lab values.

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People with thyroid disease quickly learn that we feel differently at different test levels. What works for one person may not work for another. Some doctors, however, believe test results outweigh how we feel.

Danika’s doctor said, “Your numbers came back fine, so I’ll keep you right in the middle of the scale.” Says Danika: “I kept explaining that I still felt terrible!”

Esther sums it up well: “Lab tests are NOT the holy grail. Doctors need to treat the patient, NOT the lab results!”

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3. Borderline thyroid levels can still cause symptoms.

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Donna’s doctor told her: “‘A 5.0 TSH is borderline hypothyroid. But let me prescribe an antidepressant for your anxiety.’” According to Donna, she never went back!

Niki reports: “My doctor told me: ‘Don’t worry about it. It will eventually get worse and then we will put you on medication.’”

The rule for doctors may be: “We don’t treat borderline thyroid conditions,” but patients have a different rule: Even borderline hypothyroidism and hyperthyroidism can cause symptoms and deserve to be treated.

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4. There are more thyroid treatments than levothyroxine.

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As Susan explains, many doctors insist that: “There’s only one protocol for thyroid treatment. Nothing else exists or works.”

Joan states it simply: “Synthroid (levothyroxine) is NOT the only medication to use!”

People with hypothyroidism should be aware that while levothyroxine drugs (Synthroid, Levoxyl, Tirosint) are the standard treatment, some patients feel better after adding synthetic T3 (like Cytomel), or switching to natural desiccated thyroid (NDT) drugs like Nature-throid or Armour.

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5. Natural desiccated thyroid (NDT) is a solution for some thyroid patients.

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Jen’s doctor is not the only conventional physician or endocrinologist who categorically says: “You should NOT take natural desiccated thyroid medication." Patients, however, know that NDT can work best and safely for some of us.

According to Jen, “Synthroid never helped me and it wasn’t until I took Armour that I felt much better.”

Ruth says: “NDT is the only drug that allows me to feel semi-normal, but is the first medicine my doctors want to change when I ask about any other symptoms.”

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6. Don’t be afraid to find a new thyroid doctor.

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Doctors are experts you hire to solve a problem. If your plumber can’t fix a leaky pipe, you get a new plumber. If your doctor can’t or won’t help, it’s time to find a new doctor!

Judy says, “If your doctor refuses to help, find a new doctor who will listen. It’s your life and your body, and you are the boss!”

Keep in mind that you may not need an endocrinologist. According to Lorinda, “Every endocrinologist I have seen treats numbers. I have had better luck with my family doctor.”

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7. Take thyroid medication apart from iron.

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If you are taking thyroid hormone medication along with iron supplementation, you need to know how to take it correctly and put that into practice daily.

Sam reminds us: “If you have to take iron tablets, don’t take them at the same time as your thyroid tablets because they affect your thyroid tablet’s absorption.”

Note: You should wait 3 to 4 hours after taking your thyroid medication before taking iron.

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8. Don’t take your thyroid medication with coffee.

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Jenny discovered that avoiding coffee when taking her thyroid medication was a key to success. Says Jenny: “I changed the time I took my thyroid medication from morning to nighttime. Now, I love getting up in the morning and sitting down with a coffee, and I’m losing weight. Wish I’d done this years ago.”

Note: You should wait an hour after taking your thyroid medication before drinking coffee, as coffee impairs absorption.

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9. Don’t call thyroid cancer the “good cancer.”

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One rule that most thyroid cancer survivors agree on is well-stated by Kristin: “NEVER tell me I had the ‘good’ cancer. Thyroid cancer is still cancer!”

Even though most cases of thyroid cancer have a good prognosis and very high long-term survival rates, thyroid cancer patients still have to endure surgery, recuperation, lifelong monitoring, and a lifetime of hypothyroidism — not to mention a diagnosis of “cancer.” As one patient said: “Cancer is never good!”

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10. Thyroidectomy is not “easy.”

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Thyroidectomy — surgery to remove the thyroid gland — is not considered especially risky, has a low risk of side effects, and is even performed as an outpatient surgery. Still, after thyroid surgery, patients have to recover, deal with a scar, and need lifelong treatment for the resulting hypothyroidism.

Like many other doctors, Kathy’s doctor told her, “Getting a thyroidectomy is easy. Give yourself a few days to recover, then take your pills.”

Says Kathy: “This was NOT easy!”

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11. It may be your thyroid and not menopause.

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Fatigue, weight gain, and mood changes are often mistakenly attributed to menopause instead of thyroid problems.

Before her thyroid diagnosis, Raelene’s doctor dismissed her symptoms, saying: “There’s nothing wrong with your thyroid. It’s menopause.”

Lynn’s doctor echoed this. “But I was 62 and had a hysterectomy at 44. It was NOT menopause!”

Even though she was in her mid-thirties, Maureen’s doctor insisted it was menopause. “It took me over a year to finally get a thyroid diagnosis. Sigh.”

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12. Your thyroid DOES affect your weight.

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When it comes to the thyroid’s impact on weight gain, patients know the truth: Your thyroid affects your weight.

Irene’s doctor said: “You must be lazy and overly dramatic.”

Lois’s doctor asked: “Are you exercising and eating a clean healthy diet?" Says Lois: “I’m a FITNESS INSTRUCTOR! Read my chart!”

Before she was diagnosed, Kathryn was swimming six miles a week, and taking regular boxing classes, and gained almost 50 pounds in 3 months. Says Kathryn: “Weight gain is NOT always ‘limited to a few pounds.’”

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13. Research and advocate for yourself!

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While some doctors don’t agree, thyroid patients know the importance of researching information and advocating with health care providers.

Niki reports: “When originally diagnosed, I wanted to know the spelling so I could do my own research. The doctor said ‘Oh don’t do that! It will only scare you!’”

Susan says: “You have to be your own advocate! Read, research, go prepared, and don’t let anyone push you down! Be persistent, calm, and collected.”

Cathy sums it up well: “When it comes to dealing with doctors … and thyroid disease … insist and persist!”