Looking for answers about thyroid eye disease (TED)?

Welcome to the Dear TEDe Q&A column for all who are affected by thyroid eye disease. Below you will find an entry form where you can submit your question and explain your situation, anonymously.

And you can learn about our Dear TEDe panel who will be answering questions.

When we have a reply to your question, we will notify you privately using the email address that you provided on your submission form. You get to decide if your question and the answer will be published on our website and social media, always anonymously.

Depending on volume, we may not be able to answer all submitted questions, although we will give it our utmost best!

*The Dear TEDe Q&A column is provided for timely answers to your TED questions. The answers reflect the experience of the panel member responding to the question. Replies to submitted questions are provided for your consideration, but they do not replace medical care or advice from a health care counselor. It is important to work closely with a healthcare provider to manage and treat TED. Please review our TED Community disclaimer.

I was diagnosed with graves disease mid July this year. Until now I don’t have any signs of TED (this is confirmed by my Eye doctor). How high is the chance that I will still develop it later? Normally the chance that people with graves get it is 25% to 50%, but the chance should be lower if you don’t have it at the time of diagnosis? Is there a timeframe after which I am more or less safe? I am a 37 year old male (nonsmoker) Also how is the chance to develop TED different for males and females that have graves. Thank you very much for your answer!

There is approximately a 50% chance of developing TED within 18-24 months of the onset of hyperthyroidism. There is still a very small chance, perhaps a few percent, of developing the onset of TED many years and even decades later. Although the incidence in women is greater, men can more often develop severe TED. The best thing is to keep your thyroid function stable and don’t take up smoking!


1. My specialist said that my eyes may return to normal in the inactive stage but will go back to double vision after the scar tissue forms shortly after. Is this correct in all cases?

Response: It is uncertain whether your double vision will remain constant, worsen or improve over time. Thus, one cannot predict the outcome at this stage.

2. Tepezza is not available in New Zealand. I have seen great research on Tocilizumab. Wondering if this can heal TED?

Response: Tocilizumab may improve TED but has not yet been tested adequately in clinical trials to determine how much improvement of the disease will be possible with that drug.

3. I have been on an anti-inflammatory diet for a year. Has anyone healed using natural methods or is surgery inevitable?

Response: Some patients have experienced near-complete resolution of their TED without specific medical or surgical therapies. Thus, continue with a good diet, avoid smoke and other eye irritants and follow your doctors’ guidance regarding your TED.


What’s the best help for dryness in my eyes?

I use Optase Intense Drops first thing in the morning and Systane Nighttime at night. I recently started using an electric eye mask instead of the Bruder mask on the recommendation of someone that also has TED. Mine has a built in timer and you can set the intensity of the heat.


Things that are recommended are the following:

– Warm compresses – the Bruder masks are great. You just heat them in the microwave for a few seconds and then put over the eyes for about 10 minutes.

– Over the counter artificial tears without preservatives – can use throughout the day. It’s especially good to use a gel drops at nighttime.

– Omega supplements – this works on the inside. It’s important to have a good quality product. I use Thorne supplements. I can send you my link if you’d like.

– Erythromycin eye ointment – your doctor can prescribe this. This works well for helping resolve inflammation or itching. We recommend usually doing the warm compresses first then applying a small amount of the ointment at bedtime.

– Another treatment is IPL treatments. This is intense pulse light treatments. It’s a little costly but you get great results.

Can use first name and initial. Or an anonymous name (ex. 33 year old with TED)


My journey with TED started just before the pandemic in February 2020. Working with a well-coordinated team, I was fortunate to start Tepezza treatments in October 2020 and finished my last infusion in June 2021. The results are dramatic.

I currently work for a cloud computing and virtualization technology company.  I live in Florida and enjoy spending time with friends and family, gardening, photography, Art therapy, walks on the beach and beautiful sunrises!

Jake is 70 years old and has been married to his wife Jan for 48 years. He was diagnosed with both Graves’ disease and Thyroid Eye Disease (TED) at age 39. Jake and his wife have been active in the Graves’ and TED community for over 25 years. Jake co-wrote “Graves’ Disease In Our Own Words” with Nancy Patterson PhD.

Jake has undergone 27 eye surgeries including a three-wall decompression of both eyes and 2000 RADS of orbital radiation. He chose RAI to treat his Grave’s Disease after trying for remission for 3 years.

He is retired from 38 years from the US Air Force as a civil servant. The last 27 years were spent working for the Air Force Space Command. He is also retired from the US Naval Reserve after 20 Years.

Jake is well-known and greatly loved by the TED Community!!

Trish Grigoleit is a Mastery certified professional Life and Health coach. She’s also Office manager with an ocular plastic surgeon. Trish enjoys helping others who are feeling overwhelmed, who lack energy or feel unmotivated in their lives. She specializes in helping those who suffer with thyroid eye disease. She gives her clients the skills to bring energy back, become more motivated, and bring balance back into their lives in small doable steps. Trish is excited to be a part of the TED community.

Matthew Kay, M.D., is a Neuro-Ophthalmologist specializing in patients  with various optic nerve conditions, double vision, among other entities. A significant portion of his practice is devoted to thyroid eye disease (TED) with which he has great expertise.

Matthew Kay, M.D. received his undergraduate degree from Northwestern University in Illinois, his medical training at Temple University, and his Neuro-Ophthalmoloy fellowship at the world renowned Wills Eye Hospital in Philadelphia. He then served as a full-time faculty member at the prestigious Bascom Palmer Eye Institute in Miami prior to initiating the first full-time private practice devoted exclusively to neuro-ophthalmology to cover the tri-county area in Southeast Florida, Dr. Kay frequently teaches and lectures to practicing ophthalmologists, optometrists, Ophthalmology residents for many years.

Matthew Kay Ophthalmology
6333 N Federal Hwy Ste 401
Ft Lauderdale, FL 33308-1909
(954) 463-4761

Frank Marshall is married to Christine, who was diagnosed with Graves’ Disease and Thyroid Eye Disease / TED in 2009. Frank considers himself as a “TED Care Partner.” He has walked with Christine through the long and arduous TED journey. Which in this case entailed providing a listening ear and emotional support, at times, insightful advice regarding treatment options, emotional challenges, and in his wife’s case, 7 surgeries to correct for TED. Frank enjoys helping other “TED Care Partners” as he provides compassion and understanding to others who are supporting a loved one with TED.

Dr. Nancy Hord Patterson holds a PhD in Counselor Education from the University of Florida. She is a Clinical Specialist in Psychiatric/Mental Health Nursing, and is a Nationally Certified Counselor. Following her own battle with Graves’ disease and thyroid eye disease, Dr. Patterson founded the Graves’ Disease and Thyroid Foundation (formerly the National Graves’ Disease Foundation) in 1990. Dr. Patterson has received recognition from the American Thyroid Association as a “Pioneer in Thyroid Patient Education.”

Gail has the lived experience of thyroid eye disease (TED) and has been active in TED patient advocacy for 3 years as part of an advisory panel and various TED support groups. Gail has firsthand knowledge about infusions and TEPEZZA® as a treatment for TED.

Dr. Terry J. Smith, the Frederick G.L. Huetwell Professor Emeritus in Ophthalmology and Visual Sciences at the University of Michigan, is an internationally-known endocrinologist who has studied Graves’ disease, its eye manifestations, and related autoimmune disease for over 20 years. Dr. Smith’s laboratory was first to describe the unique molecular attributes of tissue surrounding the eye that make it susceptible to inflammation in Graves’ disease. He has identified a novel autoantibody that binds to and activates a specific receptor, resulting in an exaggerated autoimmune response. His investigation of these mechanisms has yielded several potential therapeutic targets that may interrupt the disease process. These will provide the focus for future clinical trials.

Dr. Smith received his medical degree from the University of Missouri School of Medicine and completed his residency at the University of Illinois in Chicago and Sinai Hospital in Baltimore. He has completed fellowships in biophysics at the University of California School of Medicine, San Francisco, in molecular biochemistry at Columbia University in New York, and clinical endocrinology at the Pritzker School of Medicine, University of Chicago.

Dr. Smith is the author of over 275 articles and book chapters, and has been awarded five patents for his research discoveries. He has been elected to the Orbit Society, is chief scientific officer for the National Graves’ Foundation, and serves as reviewer for numerous scientific journals. Dr. Smith has been funded continuously by the National Institutes of Health and the Veterans Administration since 1983.

Read more about Dr. Smith’s groundbreaking research for treating thyroid eye disease (TED) here:


This page is made possible by the extensive work done by TED patient: Gail Smith.