Patients Share Their Worst Symptoms of Thyroid Disease

Patients Speak Out About Their Key Thyroid Symptoms

survey of thyroid patients

In an informal survey of thyroid patients conducted by Mary Shomon, patients were asked what they felt were the worst symptoms of thyroid disease. More than 700 patients shared their responses. 

Survey Results

Fatigue and exhaustion: The top vote-getter was fatigue and exhaustion, cited by 34 percent of the respondents. 

Weight concerns were the next most commonly cited problem, cited by 29 percent of the respondents.

Depression, anxiety, and brain fog were key problems for 23 percent of the respondents.

Hair, nail and skin problems were the top complaint for 6 percent of respondents.

Other issues was selected by 8 percent of the respondents. 

Among the other issues were the following symptoms and concerns that the survey respondents attributed to their thyroid conditions: 

Comments from Thyroid Patients

Muscle/Joint Paint & Fibromyalgia

Pain in muscles and joints, along with fibromyalgia, were key complaints in the "other" category. 

Michelle said:

"Fibromyalgia. . . the worst thyroid thing for me had to be fibromyalgia. Pretty bad when you hurt going to bed, hurt worse getting up in the morning and can't get comfortable no matter what."

Sheffie said:

"I would say my "worst" problem is muscular pain and joint pain. I hurt all over, and I'm not even sure where or why. I've been told I don't have arthritis or fibromyalgia, but I just ache and hurt most of the time."

For Lulu, chronic inflammation takes the lead:

"I have inflammation as a response to everything. If I hurt my shoulder, I end up with pleuritis on the same side as the injury site. If I hurt my spine, I end up with costochondritis or a similar inflammatory condition. It is ongoing. I have chronic hip pain, and pain in my feet and hands. What would be a minor injury for others always ends up to be a big deal for me."

Menstrual Problems

Leslie said that menstrual problems were her number one complaint:

"Even while medicated on thyroid hormones, my periods are killers, requiring many strong painkillers, and involving brutal cramps, huge clotting for 3 to 4 days, and a period that lasts 7 days. I need a week of recovery time, and then during ovulation period, I often have cycles where I don't ovulate, and have bloat, achiness, headaches, mood swings and hellish PMS. I have about 3 days a month when I feel okay, but of course, I have no libido even those days."

Jacquie also felt that menstrual periods were her main complaint:

"I have very heavy, frequent, and excruciatingly painful periods, to the point that I can't function. I have terrible cramping and a bad headache for the whole week before it starts. Then I start bleeding so heavily that I have to change my tampon every 1 to 2 hours, and sometimes when I stand up it's like I am hemorrhaging. I get my period every 19-22 days so as you can see, I don't get too many days in between until it starts all over again."

Stress, Emotional Impact

Susie felt that dealing with stress was her worst symptom:

"I'll be fine and then something triggers stress and I have trouble speaking (slurring, rambling,) and I become embarrassed and/or frustrated. I am aware of what is happening and if it's family I'll just tell them I'm 'showing symptoms' and they know I'm working through a situation. If it's somebody I don't know I just handle it the best I can. If they think I'm tired, or have a communication problem, so be it."

Jo also felt that emotional issues and reactions of others were key problems:

"I had a complete loss of confidence and spent ten years single and alone, dealing with my Graves' disease, especially given how my eyes changed. People had hostile reactions to my exopthalmic thyroidal look and bulging eyes. Then, to top it all off, after treatment, I became hypothyroid, and put on weight. ...then to top it all, going hypo and putting on weight. In short, any thyroid condition can be a disaster for a single person without a family for support."

A Word from Verywell 

While this was an informal survey, the results correlate to other surveys, and it's clear that symptoms such as fatigue, weight gain, depression, anxiety, brain fog, hair loss, skin and nail problems, and other concerns are top of mind for many thyroid patients. 

If you can relate to some or many of these symptoms, your thyroid treatment may not be working well for you. A key next step is to explore the many things you can do to optimize your thyroid treatment