Graves’ Disease
Years after being diagnosed with Graves’ disease, Martha Piñon suffered from double vision caused by thyroid eye disease. But thanks to a breakthrough new treatment, she now sees a bright and healthy future ahead!
CONTENTS
Health Monitor Living Graves’ Disease
THE BASICS
Getting the facts on Graves’ disease
Learn more about this autoimmune disorder, as well as thyroid eye disease, which impacts 50% of people diagnosed with Graves’ disease.
TREATMENTS
Understanding your options
Fight back against Graves’ and thyroid eye disease with the latest treatments.
TAKE CHARGE
Everyday tips for living with TED
Strategies to help make life with thyroid eye disease a little easier.
TRUE INSPIRATION
“We're getting relief!”
From soothing eyes with gel drops to being treated with an infusion therapy, Martha and Melissa offer their best tips for managing Graves’ disease and thyroid eye disease (TED).
Getting the facts on Graves’ disease
Graves’ disease—an autoimmune disorder that causes an overproduction of thyroid hormones (hyperthyroidism)—affects nearly 1 in 100 Americans, and is responsible for about 4 out of 5 cases of hyperthyroidism, according to the National Institute of Diabetes and Digestive and Kidney Diseases. Think you might have it? Read on for the facts about the condition, as well as the common symptoms and who is at risk.
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Graves' 101
In Graves’ disease, the immune system suddenly starts producing an antibody that causes the thyroid—the small, butterfly-shaped gland at the base of the neck—to produce too many hormones.
Because thyroid hormones help control many functions throughout the body, the symptoms can be wide-ranging, but typically include:
- Anxiety
- Irritability
- Fatigue and difficulty sleeping
- Shaky hands
- Heat sensitivity and sweating
- Rapid heartbeat
- Unexplained weight loss
- An enlarged thyroid gland
- Irregular periods
- Lowered sex drive
- Frequent bowel movements
- Bulging eyes (a.k.a. Graves' ophthalmopathy; read more on this below)
- Reddened skin on legs and feet (a.k.a. Graves’ dermopathy)
What's the cause?
Researchers still are unsure what triggers Graves’ in some people, but it’s likely a combination of genetics and environmental factors. Some risk factors are out of your control, such as:
- Family history. If another member of your family has had Graves’ or Hashimoto’s—another autoimmune condition that causes too little thyroid hormone—you are at increased risk.
- Gender. People assigned female at birth are much more likely to develop Graves’ than those assigned male at birth.
- Age. It is more common in younger people and usually develops before age 40.
- Having other autoimmune disorders. These can include type 1 diabetes, rheumatoid arthritis and vitiligo.
While other risk factors can be managed, including:
- Smoking. If you need help quitting smoking, visit SmokeFree.gov.
- Chronic stress. For help managing stress, consider relaxing activities such as meditation, acupuncture and yoga.
Graves’ disease also occurs in about 1 in 1,500 people who are pregnant, possibly due to a hormone produced by the placenta. If you’re already at higher risk for Graves’ due to other factors listed above, be sure to have your hormone levels closely monitored.
TED: A common companion
About half of people with Graves’ disease go on to develop a condition called thyroid eye disease (TED), also known as Graves’ ophthalmopathy. TED is also an autoimmune disease, but instead of the thyroid being under attack, in this case, it’s the muscle and fat tissue behind the eyes. As a result, inflammation and scarring occur, which can lead to eye changes, such as bulging eyes (proptosis), misaligned eyes (strabismus) and double vision (diplopia).
Symptoms of TED include:
- Dry, gritty eyes
- Red, swollen eyes and eyelids
- Watery eyes
- Eye pain
- Sensitivity to light
- Bulging eyes (proptosis)
- Double vision (diplopia)
- Eyelids unable to close properly (retraction)
TED can come on strong
TED often starts suddenly, causing symptoms like redness, dryness and swelling, and can quickly get worse, setting the stage for scarring and serious vision damage. This is known as the acute phase of TED, which can last anywhere from six months to two years. The acute phase of TED is followed by a chronic, or “inactive” phase, but that doesn’t mean the disease has gone away or that you won’t have symptoms. In fact, if it’s left untreated, TED can flare again when exposed to a trigger like stress or cigarette smoking.
What that means for you
Whether you have just been diagnosed with Graves’ or TED, or have been living with either or both for a while, it can be helpful to learn the latest about the conditions and how they can be managed. Click here to learn about the common treatment options, or here to get inspired by others living with the condition. And most of all, make sure you’re open and honest about how you’re feeling with your healthcare team—there’s no reason to suffer with the symptoms alone!
Understanding the treatment options
Treatment for Graves’ involves slowing down production of your thyroid hormones, or preventing those hormones from reacting with your body. They include:
Radioactive iodine therapy
For this treatment, you swallow iodine pills that are mildly radioactive. Iodine is absorbed by the thyroid, where it’s normally used to create hormones. The radiation slowly eliminates thyroid cells, leading to a lowered hormone production. This treatment can worsen thyroid eye disease (TED), so it’s typically not used if TED has already developed, nor can it be used by those pregnant, trying to become pregnant nor those breastfeeding.
Iodine blockers
These include propylthiouracil and methimazole, both of which work by interfering with the thyroid’s ability to use iodine to produce hormones. Propylthiouracil can cause liver damage and is less often prescribed, except in pregnant women, as methimazole can increase the risk for birth defects.
Beta blockers
These drugs block thyroid hormones from interacting with the rest of the body, but don’t treat the hyperthyroidism itself.
Thyroidectomy
This surgical procedure involves removing part or all of the thyroid, and will require you to take synthetic thyroid hormones indefinitely.
Thyroid eye disease (TED)
TED, which occurs in about half of those with Graves’, requires its own treatment—preferably in the acute phase. That’s the best way to minimize scarring and prevent serious eye damage. Current treatments can relieve the symptoms of TED, and one medication is now FDA-approved to address TED at the source. Options include:
Eye drops or gels
These can relieve the dry, gritty feeling that comes with TED, and in the case of eyelids that won’t close (retracted eyelids), lubricated gels can help keep eyes moist overnight.
Steroids
Although steroids can help bring down swelling, over the long term, they can cause weight gain and increase the risk of infection. So it’s common to start at a high dose and slowly taper off.
Orbital radiotherapy (ORT)
With this treatment, radiation is aimed at the inflamed area behind the eye to help reduce bulging and other symptoms.
Surgery
When TED is in the chronic phase, these surgeries may be performed in the following order: 1) Orbital decompression surgery to help the eyelids close better, minimize bulging, ease eye pain and potentially improve double vision; 2) Strabismus surgery to help correct remaining double vision after the first surgery and improve forward vision; 3) Eyelid repositioning surgery to return eyelids to a more normal position and relieve dryness; 4) Face sculpting to help the eyes and face look better.
Monoclonal antibody
One treatment has been FDA approved to treat TED at the source. It works by blocking the IGF1 receptor, a protein that allows the overgrowth of fat and muscle behind the eye. As a result, the bulging, redness, pain and swelling go down. The drug can improve double vision (in some cases, making it go away) and even help improve physical appearance so surgery isn’t needed. The medication is given by infusion, once every three weeks, for a total of eight infusions.
Everyday tips
for living with TED
If you developed thyroid eye disease (TED) due to Graves’, it can affect almost every aspect of your routine. However, just a few adjustments can you help you live more safely and engage in life more fully. Try these tips today!
At Home
Find a place for everything. Keeping things organized and always in the same place means you don’t have to search for items all the time. Ask other members of your household to respect the order and put things back where they found them.
Reduce tripping hazards. Tape down rugs, tuck away cords, stow shoes, keep walking paths clear of furniture and wear non-slip footwear.
Organize your fridge and pantry. Keep like items (dairy, fruits, cheese, jams and syrups) together in your fridge and try to stock them no more than one row deep, so you’ll never have trouble getting your hands on what you want.
Gain clarity with contrast. Whether setting the table or placing items around your home, using contrasting colors can help you identify spaces (bookcase or end table?), items (switch plate or outlet?) and functions (knife or fork?). Also, set the table with contrasting tablecloths and dishes so you can see edges of the plate and table more clearly.
Tape eyes for a good night’s sleep. If your eyelids won’t close all the way, gently tape them shut at bedtime with special medical tape to help you sleep better and prevent eyes from drying out.
Give vents the slip. Air conditioning, heat vents and fans contribute to a dry environment that can irritate your eyes. So don’t position your desk, favorite armchair or anything you will be in for long periods of time near a vent. In the car, position vents so they’re not directing air at your face. And if you have to be outside on a cold, windy day (Mother Nature’s air vent), wear large sunglasses that wrap around your eyes as much as possible.
Anywhere
Use voice-activated technology. Count on Siri, Alexa and the voice function on your smartphone to make tasks easier. Check out a free App like Evernote, that lets you record reminders, notes and lists using your voice and syncs across all your devices.
Rely on an e-reader. Try apps like Snap&Read and NaturalReader, which will read text aloud from websites, e-books, documents, photos and more.
Up the readability of your electronic devices. Increase the font size and adjust the brightness and contrast so you can text, navigate websites and email with less strain and pain. Also, place desktop computers in areas where there is little to no glare.
Running errands
Go at off-peak hours. Whether hitting the supermarket or the mall, pick a time when it will be less crowded.
Frequent your favorite stores. Being familiar with the layout means you’ll know where to find your preferred yogurt brand or shampoo. So you’ll streamline your shop and minimize stress.
Magnify anything with your smartphone. Can’t read a shopping tag or nutrition label? Use the camera function of your smartphone to enlarge the text so you can see it better.
Stash sunglasses everywhere. Keep extras in the car, your backpack and your desk at work so you’ll never be without!
Assess your road skills. Occupational therapists who specialize in driving can assess your ability to drive and work with you on skills that may be able to help you stay safe behind the wheel. To find a driving specialist near you, visit The Association for Driver Rehabilitation Specialists at aded.net
Can’t drive and need a lift?
Call Rides in Sight at 855-607-4337 or log onto ridesinsight.org. The organization helps arrange transportation options especially for people with vision issues.
“There is
literally a
light at the
end of the
tunnel!”
From soothing eyes with gel drops to being treated with an infusion therapy, Martha and Melissa offer their best advice for managing Graves’ disease and thyroid eye disease (TED). Ask your physicians if their personal strategies can also work for you. —by Amy Capetta
“I've finally found relief”
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MARTHA PIÑON
LOS ANGELES, CA
Martha Piñon doesn’t take any view for granted. Whether the 49-year-old married mother and licensed realtor from the Los Angeles area is giving her clients a tour of a luxury home, attending baseball games at Dodgers Stadium, cheering on the LA Rams at SoFi Stadium, hiking, camping, tailgating or traveling to different cities with loved ones, she truly appreciates the beauty of her surroundings.
After all, it was only a few years ago when Martha was suffering from severe eye issues—including double vision—due to thyroid eye disease (TED) that was linked to Graves’ disease. Her health journey began in her mid-20s when she was losing weight for apparently no reason.
“People kept telling me I looked so thin and healthy, yet I was living with heart palpitations and didn’t feel healthy.”
After undergoing a series of blood tests, Martha was diagnosed with Graves’ disease, an autoimmune disorder that is caused by an overactive thyroid. She was prescribed medication, which kept the condition under control for nearly two decades, but eventually required that her thyroid be removed.
Photo by Dana Fineman Photography
Photo by Dana Fineman Photography
“It looked like I was going cross eyed”
Within a year of surgery, Martha began noticing her eyes were red and swollen. “My family kept asking if I had been crying. I’d assumed it was allergies, lack of sleep or just me getting older that was causing the puffiness.”
Then, in early 2018, Martha searched for others dealing with eye issues on Instagram and came across a young lady who had TED and was being treated by Dr. Raymond Douglas, a board-certified aesthetic and reconstructive oculoplastic surgeon in Beverly Hills. “I immediately made an appointment, and I finally had some hope!”
During her first appointment with Dr. Douglas, Martha learned she, too, had TED, a condition that affects up to 50% of those with Graves’ disease and occurs when the immune system attacks the muscles and other tissues around the eyes.
Dr. Douglas recommended two surgeries (one performed by himself and one by Swaraj Bose, MD, a neuro-ophthalmologist and orbital surgeon at Cedars Sinai Medical Center), followed by a prescription for the first—and only—medication that treats TED at the source, not just the symptoms.
“There is hope”
After undergoing and healing from the two surgeries, Martha began the medication. Each treatment lasted about 90 minutes and the only side effect she dealt with was a little fatigue.
Along with going for the infusions, Martha took extra care of her eye health—actions she continues to this day. She wears sunglasses and a brimmed hat on sunny days and safety glasses that wrap around her face on windy days because her eyes are extra sensitive to being dried out. She also lubricates her eyes twice a day with over-the-counter eye drops.
In late 2021, Martha completed the medication course, and today she continues to feel (and look) fantastic. “I’m incredibly blessed, and it’s such an honor to have this opportunity to share my story,” she says with emotion. “I’m proud of how far I’ve come and I don’t take anything for granted. I want other patients with Graves’ disease and TED to know there is hope—and there is literally a light at the end of the tunnel!”
Try Martha’s top TED-taming tips
Put together your personalized healthcare team. Martha feels “extremely grateful” to have both Dr. Douglas and Dr. Bose on her wellness team. “It’s important to be your own advocate,” she stresses. “One of the first doctors I saw did not even refer me to an eye specialist; he just brushed off my symptoms. You know better than anyone if something is wrong with your health, so you have to be the one to push back.”
Try cold therapy. Pain, burning and discomfort in and around the eyes are common symptoms during the active phase of TED, which is why Martha recommends using a cooling eye mask or a facial ice roller. “I love these items so much that I’ll mail either the mask or roller to my Instagram friends who are suffering,” she says. “That coldness on the eyes can be very comforting.”
Eat wholesome foods. When it comes to keeping her thyroid health in check, Martha follows an anti-inflammatory diet that consists of plant-based foods free of dairy and white starches. “I’ve added a lot of lean proteins and vegetables to my meals and now I’ll drink a fruit smoothie for dessert.” Martha has also discovered a few healthy and delicious food substitutions, such as replacing white rice with quinoa, white flour with almond flour and opting for almond butter instead of peanut butter. Furthermore, selenium-rich foods (such as Brazil nuts) may help those with TED, according to research reported by the American Thyroid Association.
Connect with others. Since social media “introduced” her to Dr. Douglas, today she’s hoping to pay it forward. “The reason I started sharing my story on Instagram is because I felt that somebody else might need it,” says Martha, who can be found on the app @i_am_a_graveswarrior. “I have a sense of obligation to talk about Graves’ disease and TED because I don't want anyone else to feel alone like I did.”
Photo by Jennifer Denton
Photo by Jennifer Denton
“Don’t stop living your life!”
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MELISSA DAWN SMITH
SAN ANTONIO, TX
Melissa was prescribed medication for her Graves’ disease after she began experiencing an increase in heart rate during the COVID-19 lockdown. When she was diagnosed with TED in late 2021, she worked with an ophthalmologist who specializes in the condition, and they agreed on a new FDA-approved infusion therapy that is given once every three weeks for a total of eight treatments.
Luckily, Melissa saw a difference in her eye health after just the second session. “I didn’t realize how much pressure had built up behind my eyes until it started to go away.” She completed the treatment a few months ago and is thrilled with the results. “The double vision is gone! I have a little bit of an eye bag left, yet it can easily be hidden with makeup or a tightening cream.” Here, she shares the other strategies that helped her get the upper hand on her conditions.
Photo by Jennifer Denton
Photo by Jennifer Denton
Moisturize your eyes. During the active phase of TED, Melissa’s eyes were extremely dry and easily irritated. “The product I like is Refresh Optive Mega-3 Lubricant Eye Drops, preservative-free and enhanced with flaxseed oil, which is available on Amazon and in most pharmacies and grocery stores,” she says. “I still use these drops today, but my eyes are not nearly as dry anymore.”
Enjoy nutrient-rich foods. As a group fitness instructor, following a healthy eating pattern has been a part of Melissa’s lifestyle for years for general wellness. She limits highly processed foods (such as baked goods and fast food) while increasing intake of fresh fruits and vegetables, lean proteins and complex carbohydrates (such as brown rice and sprouted grain bread). “And I eat two to three Brazil nuts each day because they contain selenium.” Consuming high-selenium foods or supplements (with the approval of your doctor) may help people with mild active thyroid eye disease, according to the Cleveland Clinic. And keep in mind that according to the National Institutes of Health, eating foods rich in iodine, such as kelp and seaweed, could worsen hyperthyroidism in some people.
Keep moving. Being diagnosed with Graves’ disease and TED did not stop Melissa’s on-the-go schedule. Along with being a wife and mom of three children (ages 12, 10 and 6), Melissa—who can be found on Instagram @melissads_public—continued to be a member of the PTA and pursue her PhD in communications while also teaching exercise classes, including toning, Barre and yoga. “I was grateful that my HCP said I never had to cut back on my fitness classes.” The Cleveland Clinic reported on a small study where participants with thyroid issues who practiced yoga for one hour showed reduced side effects, including fatigue and constipation. However, the academic medical center adds that yoga cannot cure thyroid disease and, in particular because Graves’ disease can impact heart health, strongly suggests consulting with your physician before starting (or continuing) any fitness program.
How TED treatments are changing lives
Mayo Clinic ophthalmologist Lilly Wagner, MD, explains how TED treatments are changing lives.
Quiz
Special thanks to our medical reviewer:
Lilly Wagner, MD,
Assistant Professor of Ophthalmology Consultant, Ophthalmic Plastic and Reconstructive Surgery Mayo Clinic; Rochester, MN
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Michael J. Blaha, MD, Director of Clinical Research, Ciccarone Center for the Prevention of Cardiovascular Disease; Professor of Medicine; Johns Hopkins
Leslie S. Eldeiry, MD, FACE, Clinical Assistant Professor, Part-time, Department of Medicine, Harvard Medical School; Department of Endocrinology, Harvard Vanguard Medical Associates/Atrius Health, Boston, MA; Chair, Diversity, Equity and Inclusion Committee, and Board Member, American Association of Clinical Endocrinology
Angela Golden, DNP, FAANP, Family Nurse Practitoner, former president of the American Association of Nurse Practitioners (AANP)
Mark W. Green, MD, FAAN, Emeritus Director of the Center for Headache and Pain Medicine and Professor of Neurology, Anesthesiology, and Rehabilitation at the Icahn School of Medicine at Mount Sinai
Mark G. Lebwohl, MD, Dean for Clinical Therapeutics, professor and chairman emeritus at Kimberly and Eric J. Waldman Department of Dermatology, Icahn School of Medicine at Mount Sinai, New York
William A. McCann, MD, MBA
Chief Medical Officer; Allergy Partners, Asheville, NC
Mary Jane Minkin, MD, FACOG, Clinical professor in the Department of Obstetrics, Gynecology, and Reproductive Sciences at the Yale University School of Medicine
Rachel Pessah-Pollack, MD, FACE, Clinical Associate Professor, Division of Endocrinology, Diabetes & Metabolism, NYU School of Medicine, NYU Langone Health
Julius M. Wilder, MD, PhD, Assistant Professor of Medicine; Chair, Duke Dept of Medicine Diversity, Equity, Inclusion, and Anti-racism Committee; Vice Chair, Duke Dept of Medicine Minority Retention and Recruitment Committee; Co-Director for the Duke CTSI- Community Engaged Research Initiative
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