Thyroid Eye Disease Management Tips for Patients

Thyroid Eye Disease may bring new challenges, but these tips can help you continue to live your life

The true impact of Thyroid Eye Disease (TED) goes well beyond the eyes. It can also have a big impact on all aspects of life. While these changes may not always be visible, they shouldn’t be overlooked. Along with learning how to speak up for yourself with your doctor, there are small adjustments you can make—in and out of the house—that can help manage your condition and help you live the life you want.

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What you may experience:

Pain and changes to your vision or how easily you can move your eyes can limit how well you do certain tasks. This can include:

  • Difficulty driving
  • Depending on others for care
  • Having to miss work because of symptoms

Ways to help:

  • Place furniture where you can see it
  • Put the TV and computer where there’s no glare
  • Try to always wear non-slip footwear
  • Use single-use products to avoid measuring
  • Have a designated place where you put things
  • If affordable, robot vacuum cleaners help reduce eye strain and tripping hazards while vacumming
  • Tape down rugs to avoid slips and falls
  • Tape or tuck away all cords to avoid tripping
  • Stay away from heavy air flow areas (like vents and fans)
  • Relieve swelling, redness, and irritation with a warm compress
  • Avoid eucalyptus as it can make eyes burn
  • Use saline solution or artificial tear drops as recommended by your doctor

Learn about a few apps that can help you manage living with vision changes

What you may experience:

Dealing with TED can be frustrating, and you may feel embarrassed about how it changes the way you look. It’s not uncommon to feel:

  • Depressive feelings
  • Anxious
  • Self-conscious
  • A loss of self-worth
  • Like you don’t recognize yourself in the mirror
  • Disconnected from friends, family, and hobbies

Ways to help:

  • Meditation and breathing exercises are great ways to reduce stress and anxiety. Consider downloading a meditation app to your phone
  • Be mindful. Acknowledge your feelings but don’t dwell on the negative. Instead, embrace the positives
  • Listening to audio books can uplift and empower
  • Professional counseling can help you cope with emotional challenges

Learn about some apps to help you with the emotional changes of TED

What you may experience:

How you live with Thyroid Eye Disease can change your social life and your relationships because you may feel self-conscious/embarrassed about the changes to your appearance. For example, you may:

  • Avoid other people and social events
  • Have a hard time making normal facial expressions
  • Have problems holding face-to-face conversations

Ways to help:

  • Shop at stores that you know
  • Run errands at off-peak hours to avoid busy areas
  • Know your limits. Be sure to take breaks in places without light glare, windows, or fans
  • Always have sunglasses available. Keep extra pairs in convenient places such as your car, bag or purse, workplace and at home near your car keys
  • When walking with others, sync your steps at a comfortable pace
  • If traveling, avoid carry-on items—check your bags instead
  • In hotels, put a towel over your pillow to avoid dust hurting your eyes
  • Always remember to bring your eye drops

Connect with others who understand what you’re going through

What you may experience:

If you’re like most people, your smartphone or another electronic device is never out of arm’s reach. But TED can cause vision changes that:

  • Make it harder to read on a small screen
  • Cause the bright light of a screen to be painful
  • Make it difficult to navigate a website or search for what you are looking for
  • Make you feel like you can’t participate in text message conversations with your friends or family

Ways to help:

  • Increase the font size on all of your devices. Most smartphones, tablets, and computers will let you do this from the Settings, Accessibility, or Display menu
  • Activate the Read Aloud function for websites, text messages, and email
  • Adjust the brightness on all of your screens so you can see with less pain
  • Download one of the apps below for people living with changes to their vision

See how Ron and LaQuilla went from discouraged to determined while managing their Thyroid Eye Disease

Video preview of TEPEZZA patient, Ron

“All is not lost, it’s just the beginning of a journey that can still be a pretty good journey.” - Ron, real TED patient

Video preview of TEPEZZA patient, LaQuilla

“Never give up. Don’t quit. Find out who you are, pull that strength from inside of you and say, ‘I can beat this’.” - LaQuilla, real TED patient