The 2021 Hypothyroidism Survey: Results
More than 500 hypothyroid patients shared their challenges, symptoms, and goals for 2022!
In early December of 2021, I shared a short survey on hypothyroidism with readers across social media, to gauge which issues and symptoms were the greatest challenge for patients, as well as knowledge about key topic areas, and goals for 2022. More than 500 hypothyroid patients responded in just a few days that the survey was open!
The following is a summary of the responses.
The One Biggest Challenge
When asked to choose their ONE biggest challenge from a list of 13 options, around a third of patients said difficulty losing weight, and a third said fatigue/lack of energy.
Other Big Challenges
I asked readers, “If your biggest challenge is not listed above, please feel free to share and describe YOUR biggest personal challenge with your hypothyroidism.” This was an open-ended question, where respondents typed in their own words. Many respondents repeated items that were in the “one biggest challenge” question. Here are a few notable quotes:
“Determining what is thyroid related and what isn't is a big challenge”
“Feeling like I will never feel well”
“Being taken seriously by the doctors”
“Finding a doctor who treats based on symptoms and not just test levels”
“Finding a good doctor. The functional medicine doctors have huge waiting lists, are out of pocket/very expensive and/or can't take any new patients!”
“I have no patience and it seems everything is overwhelming.”
“Lack of understanding from friends and family”
“Getting natural desiccated thyroid meds, due to recalls.”
Continuing Symptoms and Challenges
When asked to check off all the continuing symptoms and challenges from a list of 15:
Around 80% of respondents said weight loss, and fatigue/lack of energy
Next was dry skin, with around two-thirds.
Sleep problems and brain fog were reported by 58% of respondents.
Around half of those surveyed reported hair loss, anxiety, or low sex drive.
Knowledge About Key Issues
I asked respondents to rate their level of knowledge about various key issues, on a scale of 1 to 5, with 1 being “Expert,” and 5 being “I’m just getting started.” The five issues were:
thyroid blood tests and how to interpret them
levothyroxine options for hypothyroidism
natural desiccated thyroid (NDT) options for hypothyroidism
lifestyle choices to help support health with hypothyroidism
dealing with fatigue and exhaustion with hypothyroidism
Here’s a summary of the responses:
A few notable findings:
Around a third of patients feel they have "average" knowledge on thyroid blood tests, levothyroxine options, lifestyle choices, and dealing with fatigue/exhaustion.
Only 18% of respondents feel they have average knowledge of natural desiccated thyroid (NDT) options, and almost 50% report fair or beginner understanding of NDT options—compared to around 25% of respondents with fair or beginner knowledge about levothyroxine.
What Patients Want to Learn
I also asked respondents to share their own open-ended responses to the question: “Something else I REALLY want to learn more about regarding my hypothyroidism is...
The following are selected quotations from respondents:
“Is there hope?”
“Am I optimizing my meds and supplements?”
“How should I eat for optimal health with hypothyroidism?”
“I’m hypo without a thyroid. Where can I find information?”
“How can I stop and reverse hair loss?”
“How can I resolve my sleep issues?”
“What can I do about dry skin?”
“How can I counteract fatigue?”
“How do my antibodies affect my symptoms?”
“How can I communicate my needs effectively?”
“Can I heal my thyroid? Is this permanent? Am I on these meds forever?”
“Are there natural alternatives?”
“Can hypothyroidism be reversed?”
“How can I best stay in control of my test levels and keep them stable?”
“What exactly is a good range for my tests?”
“Can I keep my Hashimoto’s thyroiditis from becoming hypothyroidism?”
“What foods should I eat, and which ones should I stay away from?”
“Can I fix my hair loss?”
“How can I optimize thyroid function WITHOUT a thyroid?”
“Which supplements support my thyroid?”
“What’s Reverse T3 and how can I fix it?”
“Which diet is best to follow?”
“I’ve been on Synthroid for decades. Is there anything better than this?”
“How can I lose weight?”
“How can I get through perimenopause and menopause with hypothyroidism?”
“Where and how can I find better doctors?”
“How can I stand up for myself with my doctor?”
“What are optimal levels, and how do I get to optimal?”
Goals for 2022
Finally, I asked patients, “What are your thyroid goals for 2022?” This was an open-ended question, where respondents typed in their own words.
The top goal for 2022 from the survey was to lose weight, mentioned by a third of respondents. Next was to feel better and get healthier, at 18%, reduce fatigue, at 16% and optimize and stabilize treatment, at 15%.
The responses fell into a number of key categories, summarized here: