Hypothyroidism is a condition that influences the release of your body’s thyroid hormones — in this case it doesn’t produce enough. According to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), thyroid hormone plays a vital role in metabolism; brain, heart, and liver function; reproductive health and fertility, and more. So, even subtle fluctuations in your thyroid can contribute to some big changes in your body. And that’s why living with a thyroid condition like hypothyroidism can be challenging on a daily — and even hourly — basis.
While nearly 20 million people in the United States have some type of thyroid disorder, according to the American Thyroid Association (ATA), hypothyroidism can be a misunderstood condition. Your coworkers, friends, and loved ones may not realize how much it can impact your everyday life.
Here, people with hypothyroidism describe what it’s really like to live with the condition. Share this list with the people in your life to help them better understand what you’re going through:
1. Coffee isn’t the answer. “I am tired ... all the time. It hits me around 2PM,” says Christina Nicholson, 33, from Coral Springs, Florida. She was diagnosed with Hashimoto’s disease — an autoimmune disorder that can cause hypothyroidism — at age 27. “Some people say, ‘oh yeah’, I get tired around then too and brush it off like I need a cup of coffee or something.” Talia Mariani, 27, from New York, also finds that other people don’t understand her fatigue. “I'll get asked often why I don't just drinkmore caffeine,” she says. “What people fail to recognize is that caffeine is anadditional stressor on the system, so for me, caffeine ultimately becomes more of a threat than ablessing.”
“The best way to combat fatigue is to do things to promote good health, such as eating healthy, getting regular exercise, and getting a good night’s sleep,” says Alan P. Farwell, MD chief of the section of endocrinology, diabetes, and nutrition and director of endocrine clinics at Boston Medical Center.
2. Going to bed on time doesn’t necessarily mean you’ll get a good night’s sleep. Getting enough sleep at night can be easier said than done. There are a number of factors that can affect your ability to get good sleep, including your thyroid medication. According to the Cleveland Clinic, taking too much thyroid medication can cause difficulty sleeping. “ When I was first treated, I would have to take a mix of different doses on different days to help find the right dose,” says Trish Hoffmanfrom Laguna Beach, California, who was diagnosed at 34 and has many family members who also have hypothyroidism.“One time I was overmedicated and couldn't sleep for three days.”
“If you’re unable to sleep through the night, you’re likely to be tired the following day,”Dr. Farwell says, so this can make symptoms of fatigue even more intense. “Sleep problems such as sleep apnea are becoming recognized as very common and can be evaluated with a sleep study that your doctor can order.”
3. To-do lists are your best friend … your brain fog is not. An underactive thyroid can cause problems with concentration and memory, according to the University of Maryland Medical Center. You may have difficulty concentrating at work or even at home while you’re talking to your kids. You may seem forgetful to your friend while chatting at lunch, or absent-minded to your boss at your yearly review. If you’re experiencing these issues, there are a number of strategies you can try to help improve memory and concentration, such as focusing on one task at a time, using written lists and reminders, and sticking to a schedule.
4. Your mind isn’t the only thing that’s blocked. Constipation is another common symptom of hypothyroidism, according to the NIDDK. You may find that even eating a fiber-rich diet or taking the latest probiotic pill doesn’t help you — you’re still constipated and uncomfortable. If this becomes a constant issue, work with your doctor to find ways to remedy and prevent constipation.
5. Even if you eat right and exercise, you may have trouble losing weight. “Keeping weight off is a challenge, even with exercising regularly and eating right as I do,” says Suzanne Andrews, a licensed occupational therapy practitionerfrom Ormond Beach, Florida. Mariani agrees. “I'm a personal trainer in New York and I was diagnosedwith Hashimoto's thyroiditis about four years ago,” she says. “People often ask me if I have ever thought about eating less and movingmore. It's a super frustrating andeven an offensive question on its own, but to throw in the fact that I'm aprofessional in this field takes it to another level.”
“The inability to lose weight in people with hypothyroidism doesn't follow the standard rules of cutting calories or exercisingmore,” says Westin Childs, MD, an integrative doctor who focuses almost solely on hypothyroidism. “Low thyroid leads to a decreased metabolic rate (which lowers overallmetabolism) and can make weight loss very difficult without appropriateintervention.”
“One mistake many people make is to set an unachievable weight loss goal (for example, to lose 50 poundsin 3 months) — that sets you up to fail,” Farwell says. “It’s better to set several smaller goals (for example, to lose a pound a week, or 2-3 pounds per month). This also allows diet changes that can continue long term.”
6. It can feel like you just ran a race … but you just woke up from a nap. “I know if I wake up sweatingor with heart palpitations, my medication dose is too high,” says Barbra Watson, 43, from Boston. “Changes in thyroid medication dosing take several weeks to get your thyroid levels to the new level,” Farwell says.“Some people have acute symptoms after changing their dose, but these subside over a few weeks.”
7. You miss the person you used to be. If you have hypothyroidism, you may find that you can’t fit into your old clothes, you don’t have the energy to play with your children like you once did, or you’re just not able to do the things you used to do. “The difficult thing about this condition is that the symptoms are often explained away — as if being a woman, a working mom, or in your 40s, is a reason these things are happening,” says Hollie Geitner, fromPittsburgh, Pennsylvania. Hollie was diagnosed in her mid-20s with Hashimoto’s thyroiditis and will soon be 42. “I suppose it has become a way of life for me.” But she goes on to share that the reality for her is that she’s had to learn to work through these changes — for better or worse. And with proper treatment, many of these hypothyroidism symptoms can be controlled, according to the ATA.
8. Gloves are a year-round accessory — so are socks and scarves and sweaters. Another symptom of hypothyroidism is the constant feeling of being cold. “People think I'm nuts when I say I'm cold,” Andrews says. “How can they relate when it's 74 degrees in the room and my hands are likeice?” In these situations, make yourself comfortable and forgo worrying about what others are thinking — gloves can be considered a classy fashion statement after all. Taking your thyroid medication can also help control cold intolerance and other symptoms of hypothyroidism.
9. You constantly feel like you have to prove you’re not lazy. “I think the biggest misconception is that those around you may just feel like you use this condition as an excuse for being tired or they may even think you're lazy,” Hoffman says.
Dr. Childs agrees. “I think the stigma surrounding weight and being lazy is a big one that wears on people with hypothyroidism,” he says. “This can be made worse by the fact that they almost always have fatigue with the weight-loss resistance.” Don’t let others get you down, do what you can, and be open with those you care about. Instead of making excuses for feeling tired or run down, explain that fatigue is a symptom of your condition.
10. Moody is your middle name. “I can tell if I feel likeI’m moody all month long, it's probably my thyroid,” Watson says. According to the British Thyroid Foundation, an underactive thyroid can cause emotional symptoms, such as mood swings. Try to keep mood swings from becoming a problem by explaining your situation to your loved ones and asking for compassion and understanding when you do experience them.
11. You feel sick, but look “fine.” While some hypothyroidism symptoms are obvious to the naked eye, like weight gain and hair loss, others, like joint pain and depression, are invisible. “I believe the most deceiving thing about this condition is that, for the mostpart, other people can't see your pain,” says Kylie Wolfig, 46, from Perth, Western Australia and founder of Thyroid School, who has lived with Hashimoto's thyroiditis for over 25 years. “They can't see your anxiety, yourconfusion, or that you’re overwhelmed.”
“I never appreciated how much your thyroid doesfor you,” Watson says. “It regulates so much.” Focus on taking care of yourself and let go of worries about other people’s judgements of you. Work on communicating with your friends and family so they have a better idea of the challenges you face. Chances are, they’ll do their best to treat you with compassion.
If your hypothyroidism symptoms are very persistent, “Seeing an endocrinologist can help if you’re not feeling fine after your first dose of medication, if there is some disagreement on whether you should be treated in the first place, if you are considering a pregnancy (or are pregnant), or if you simply want to know more about the condition,” Farwell says.