Thyroid Tips for the Newly Diagnosed Patient

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Thyroid patients at the Thyroid Support community at Facebook were asked what they wished they'd known when they were first diagnosed. They also were asked to share their favorite tips for newly diagnosed thyroid patients, based on their own experiences.

What do current patients wish they'd known earlier? Based on their input, here are their answers. 

Lab Tests and Results: "I Wish I Had Known That..." 

Many doctors only test the TSH level, and TSH may not be enough to properly diagnose or manage a thyroid condition.

Free T4 and Free T3 may reveal more relevant information than a TSH test alone.

Lab test results in the "normal range" (reference range) do not necessarily mean that symptoms are relieved.

The goal of my thyroid treatment should be "optimal" levels, and not just normal levels.

Even if I have to insist, I should have thyroid antibody tests done.

I should always ask for the actual test result numbers, and always get copies of the blood test results.

Reverse T3 exists, it can be tested, and can have a negative impact on my thyroid health.

Doctors: "I Wish I Had Known That..."

The best doctor for my care might not be an endocrinologist.

There are resources to find doctors for different types of thyroid disease, including the Thyroid Top Doctors Directory, other patient lists, and rating services like HealthGrades.com.

There's no reason to be afraid to switch doctors.

Integrative and functional medicine doctors have a different approach to diagnosing and treating thyroid disease, and might be a better choice for me.

Some thyroid doctors are unduly influenced by drug companies, and their recommendations may reflect that bias.

Some general practitioners and primary care doctors are simply not knowledgeable about thyroid issues.

The doctor works for me; not the other way around.

Food: "I Wish I Had Known That..." 

I should be careful about the thyroid impact of goitrogenic foods and soy.

Some autoimmune thyroid patients go into remission when following a gluten-free diet.

A "Paleo," anti-inflammatory, or autoimmune diet might help relieve my symptoms

Thyroid Medications: "I Wish I Had Known That..." 

 

There are other thyroid medications besides levothyroxine. Doctors may not tell me about natural desiccated thyroid (NDT) drugs such as Armour, Nature-throid and Thyroid WP.

I should not just stop taking thyroid hormone replacement drugs.

Taking thyroid medication properly means avoiding coffee until an hour after taking the medication, and not taking thyroid medication with calcium or iron (wait at least 3-4 hours after thyroid medication to take calcium or iron.)

Taking levothyroxine at night might help absorption, and allows you to have breakfast, coffee, iron and calcium supplements first thing in the morning.

Generic levothyroxine may cause some fluctuations in my thyroid levels and symptoms.

Levothyroxine can cause hair loss in some patients.

Graves' Disease/Hyperthyroidism: "I Wish I Had Known That..." 

 

There are options to treat Graves' and hyperthyroidism besides Radioactive Iodine (RAI)

Some cases of Graves' disease go into remission with medication.

Before rushing into surgery or RAI, a second opinion can be helpful

RAI is likely to leave me hypothyroid and dependent on a thyroid hormone replacement drug for life.

Autoimmune Disease: "I Wish I Had Known That..." 

If I'm diagnosed with a thyroid condition, I should also be tested right away for thyroid antibodies to determine if I have Hashimoto's or Graves' disease.

Even with normal TSH levels, elevated Thyroid Peroxidase (TPO) antibodies can be indicative of disease, and warrant treatment.

Having one autoimmune disease means that I'm at higher risk for another autoimmune disease, and also means my first-degree relatives (siblings, parents, children) are at higher risk.

Thyroid Symptoms: "I Wish I Had Known That..." 

Undermedication or overmedication can cause a variety of symptoms.

Undiagnosed or poorly treated thyroid disease can cause:

Thyroid Surgery: "I Wish I Had Known That..." 

I should pick an experienced thyroid surgeon to minimize risks of complications

The parathyroid glands can get damaged in surgery.

Vitamins/Minerals: "I Wish I Had Known That..." 

It's important to test for and treat Vitamin D deficiencies.

Selenium is important to autoimmunity, and may help lower antibodies.

Thyroid Nodules: "I Wish I Had Known That..." 

There is no reason to have thyroid surgery based on an indeterminate or inconclusive fine needle aspiration (FNA) biopsy of the thyroid. The Veractye Afirma Thyroid Analysis can eliminate most indeterminate results, and prevent unnecessary thyroid surgeries.

Thyroid Cancer: "I Wish I Had Known That..." 

Thyroid cancer is not the "good cancer."

After thyroid cancer, it can be a challenge to get levels normalized, and eliminate thyroid symptoms after thyroid cancer treatment.

Iodine: "I Wish I Had Known That..." 

Having an imaging test (like a CT scan) using an iodine contrast can sometimes trigger thyroid issues.

Get the urinary iodine clearance test to assess iodine deficiency.

Establish iodine deficiency before taking supplemental iodine.

Mental Health: "I Wish I Had Known That..." 

Anxiety and depression can be symptoms of a thyroid problem — or symptoms of mistreatment. Trust my instinct, and if a doctor says my symptoms are evidence of a mental health problem, get a second opinion.

Fertility/Pregnancy/Post-Partum: "I Wish I Had Known That..." 

Fertility problems can be caused by elevated thyroid antibodies or TSH levels

Getting the thyroid back on track can restore fertility in some cases, even in the late 30s or early 40s.

It can be harder to get pregnant and have a healthy pregnancy with a thyroid condition.

It's important to confirm pregnancy as early as possible so that thyroid medications can be adjusted as necessary.

Postpartum thyroid problems can cause difficulty with breastfeeding.

Thyroid Awareness/Empowerment: "I Wish I Had Known That..." 

Some people will not be supportive of me because my disease is "invisible."

Thyroid disease runs in families, and a family history means that I was more at risk to develop thyroid issues myself.

I know my body best, and if I feel like something is wrong, it probably is.

It's important to be positive, and realize that even if I can't be cured, I can still be healed, and feel well.

It's important to read reputable books, and visit trustworthy sites for information on thyroid disease.

It's essential to keep records of lab tests, lab results, medications being taken, diet, supplements, and symptoms.

The Future: "I Wish I Had Known That..." 

I would eventually feel better again!

I could live a healthy and happy life.

I will have some tough days, but I don't have to let my thyroid problem define me or feel defeated.

I am not alone

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