What Do You Know About Thyroid Disease?

Let’s start with the basics:  do you even know where your thyroid is?

A small, butterfly-shaped gland located at the base of the neck (just below the Adam’s apple), the thyroid influences the function of the heart, brain, liver, kidneys and skin.  That’s why it’s so important to know if you have a thyroid problem – especially if you’re a woman.  Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.  Hypothyroidism can cause weight gain, miscarriages, forgetfulness, irregular menstrual periods and numerous other symptoms.

"I Am the Face of Thyroid Disease" Is the Theme of a Campaign Launched to Support Thyroid Awareness Month (Click Through to See Patient Videos and Stories)

January is Thyroid Awareness Month, which means it’s a good time to “check your neck.”  As many as 30 million Americans may have thyroid problems, but more than half of them remain undiagnosed.  To help combat this lack of awareness, two thyroid disease patient advocates – Mary Shomon and Katie Schwartz – have created a new campaign called “I Am the Face of Thyroid Disease.”  It features video messages and photos from around the world to “shine a spotlight on the diversity of thyroid patients and their practitioners, and help overcome the stigma and silence surrounding thyroid disease.”

This diversity can also be seen in PatientsLikeMe’s hypothyroidism community, where more than 2,200 patients (8% of whom are male) report the disease.  Some of the most commonly reported symptoms in our community include cold intolerance, dry skin and lethargy, while one of the top reported treatments is Levothyroxine (branded as Synthroid, Levoxyl, Levothroid and more), a synthetic form of the human hormone thyroxine.  190 patients with hypothyroidism have shared in-depth treatment evaluations of Levothyroxine, detailing their experiences with effectiveness, side effects, cost and more.  These evaluations also contain a wealth of tips and advice.

Some of the Commonly Reported Treatments for Hypothyroidism at PatientsLikeMe

Here’s what one long-time Levothyroxine user writes on her evaluation:

“I have taken this for 31 years now. If you do need to take this, please pay attention how you feel. If you have symptoms such as dry skin and feeling tired all the time, it might be that you’re not getting enough of it. You might need to up the dosage.  If you have heart racing and you’re losing lots of weight, etc., it might be you’re getting too much. Don’t forget to get a yearly blood test to make sure your dosage level is correct.”

We also have a little over 100 patients (12% of whom are male) reporting hyperthyroidism, a less common form of thyroid disease that occurs when the thyroid gland produces too much thyroid hormone.   Some of the most commonly reported symptoms include heat intolerance, excessive sweating and palpitations.  Along with those who have other forms of thyroid disease – including Hashimoto Thyroiditis – more than 8,000 members belong to the Endocrine, Metabolism and Nutrition Forum, where they can discuss their thyroid experiences with others like them.

Think you might have a thyroid problem?  Perform your own “neck check” at home (to detect any bulges or enlargement in your thyroid gland) and/or see your doctor for a thyroid evaluation today.  A simple blood test called the TSH test can tell you whether your thyroid gland is functioning normally.  If you’ve already been diagnosed, gain wisdom from connecting with thousands of others like you at PatientsLikeMe.

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5 thoughts on “What Do You Know About Thyroid Disease?”

    WOW! What a kind of ‘awareness’. . .

    Most of the people need t3 medicines like Desiccated thyroid and cytomel. . To gain their quality of life back. .

    Noone can feel perfectly well on t4 only. .
    I know you will not publish it. .but i just wanted to laugh on you people.

  2. Thanks for your comment. Levothyroxine is “one of the top reported treatments” in our hypothyroidism community. This doesn’t mean that it’s the top treatment or the only treatment that patients need, but rather that this treatment has received the most treatment evaluations from our members with hypothyroidism.

    In the chart above, you’ll see three treatments with the highest number of treatment evaluations – Levothyroxine (190 evaluations), Thyroid Extract (21 evaluations) and Cytomel (6 evaluations). Because Levothyroxine had by far the most evaluations, we thought it would be helpful to highlight an example of the valuable insight being shared about that particular treatment.

    We believe patients must work with their healthcare team to find the right treatment regimen for their individual case. Fortunately, it seems you have done just that. Thanks for sharing your experiences here in this comment and feel free to share the combination of treatments you’ve found most effective on your PatientsLikeMe profile. It may help many others like you to learn from your experiences.

  3. I was diagnosed 40 years ago with very high thyroid. I was treated with radioactive iodine to destroy part of thyroid and have been on Synthroid (levothyroxine) ever since. Dosages have changed depending on test results but haven’t varied too much until last few years. Went from 3.75 to 22.64 in 9 months. It has been fluctuating a lot for the past few years but never into the 2 digits. I also have fibromyalgia and am concerned that they are connected, along with my symptons of carpal tunnel, etc. I am currently awaiting a referral from my PCP and am hopeful that I will be able to find a doctor who can help me. This site has been very informative.

  4. Excellent website you have here buut I was wondering if you
    knew of any discussion boards that cover the same topics discussed here?

    I’d really like to be a part of roup where I can get suggestions from other experienced
    individuals that share tthe same interest. If you have anny suggestions, please leet me know.

    Thanks a lot!

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