Early diagnosis Early thyroid eye disease symptoms

Early diagnosis of TED: Staying ahead of the damage

Under-diagnosis of TED may be a result of the subtlety and misleading nature of its earliest signs and symptoms. TED can first present with photophobia, erythema or redness of the eyes or eyelids, a feeling of grittiness, excessive tearing, or dry eyes.7 However, these are often confused with other conditions, such as allergies or dry eye symptoms of other origins. Eyelid retraction in a resting state and lid lag in which there is a delay of the eyelid to follow downward gaze are also early signs.7,15

The challenges of diagnosing and monitoring TED make improved co-management between endocrinologists, opthalmologists, and oculoplastic surgeons a key need in the evolving field of TED care.

Thyroid eye pain icon Thyroid eye pain icon

Photophobia

Photophobia, or light sensitivity, is often due to upper eyelid retraction and the resulting corneal exposure. Evidence shows up to 80% of patients develop upper eyelid retraction in early TED.16

Gritty eyes thyroid icon Gritty eyes thyroid icon

Dry eyes and grittiness

Dry eyes and grittiness are frequently under-recognized as signs of TED, but have been shown to impact both patient quality of life and visual function. In a long-term follow-up study in a single US county, 72% of patients with TED said dry eyes were their most frequent source of eye discomfort.17

Thyroid watery eyes icon Thyroid watery eyes icon

Redness, swelling, and excessive tearing

Erythema (redness) and edema (swelling) of the eyelids were the two most commonly reported signs in a pilot study of a tool designed to help non-eye specialists detect early TED.18 Corneal exposure due to eyelid retraction can lead to excessive reflex tearing.7

Click to enlarge
Thyroid Eye Disease Symptoms Icon Thyroid Eye Disease Symptoms Icon

Overlooking any of these early signs and symptoms
can lead to permanent physical sequelae and
unnecessary patient suffering due to delayed diagnosis.

Up to 50%of patients
with Graves' disease will
report symptoms of TED.1

Graves Disease statistics: Approximately 50 percent of patients with Graves’ develop TED Graves Disease statistics: Approximately 50 percent of patients with Graves’ develop TED

All Graves' Diagnoses Should Be
Followed by a Baseline Eye Exam for TED

TED specialist Dr. Ray Douglas describes the
importance of early diagnosis and how to correctly
identify these first signs and symptoms

Read the full video transcript

I described thyroid eye disease to my fellows as an immunologic process. The real underlying molecular mechanisms are from the immune system attacking the tissue around the eyes and that includes the muscle and fat that explains much of the symptoms and signs that we see in this disease such as expansion of the adipocytes, expansion of the muscles from the fiber blast activation. So it really begins to put the disease into perspective and also how we have to treat it separately from the thyroid.

The earliest signs of thyroid eye disease are often centered around the eyelids, so when you have eyelid erythema, eyelid edema, even lid lag or eyelid retraction, and especially in the staring appearance on photographs or during conversation, especially if there's lateral upper eyelid retraction, that can be a very, very characteristic sign of early thyroid eye disease. As the disease progresses, these symptoms and signs may get worse over time. Patients will notice symptoms such as photophobia with dryness, irritation of their eyes, even changes in vision and these are all signs that could be worrisome for active thyroid eye disease. Thyroid eye disease is commonly misdiagnosed because so many of the symptoms and signs overlap with common disorders. so, some of the symptoms that can lead to misdiagnosis are the feeling of changing or blurring vision and also orbital aching and pain. Both of these can be very common in thyroid eye disease, but they overlap with other disorders and many clinicians are not accustomed to thinking of these in terms of thyroid eye disease.

Differentiation between active and inactive TED can be quite a challenge. Active TED is marked by eyelid erythema eyelid retraction and is often a progressive process. Inactive disease retraction and is often a progressive process. Inactive disease tends to have a diminution of the active disease including the eyelid erythema, eyelid retraction and eyelid edema. The process in inactive TED does not change any further. Early identification of active TED is important because it really represents a window of opportunity for treatment. We have a very limited window in active TED often from months to a couple of years, and during this window of opportunity, it probably is the ideal time to treat with medical treatments, to limit the changes that we would see in the tissue surrounding the eye and the worsening of the proptosis and Strabismus.

This site is dedicated to advancing the understanding of thyroid eye disease.
Find useful information and resources on the signs, impact, risks, and mechanisms
of thyroid eye disease to support you in your conversations with patients and caregivers.

Sign up for updates

Stay connected with the latest science
and available resources

References:
  1. Bahn RS. Graves' ophthalmopathy. N Engl J Med. 2010;362:726-738. 
  2. Mamoojee Y, Pearce SHS. Natural History. In: Wiersinga WM, Kahaly GJ (eds): Graves’ Orbitopathy: A Multidisciplinary Approach – Questions and Answers. Basel, Karger. 2017:93-104.
  3. Bartley GB. The epidemiological characteristics and clinical course of ophthalmopathy associated with autoimmune thyroid disease in Olmsted County, Minnesota. Tr Am Ophth Soc. 1994;92:477-588.
  4. Laurberg P, Berman DC, Pedersen IB, Andersen S, Carlé A. J Clin Endocrinol Metab. 2012;92(7):2325-2332.
  5. Perros P, Crombie AL, Matthews JN, Kendall-Taylor P. Age and gender influence the severity of thyroid-associated ophthalmopathy: a study of 101 patients attending a combined thyroid-eye clinic. Clin Endocrinol (Oxf). 1993;38(4):367-372.
  6. Tsui S, Naik V, Hoa N, et al. Evidence for an association between thyroid-stimulating hormone and insulin-like growth factor 1 receptors: a tale of two antigens implicated in Graves’ disease. J Immunol. 2008;181:4397-4405.
  7. Barrio-Barrio J, Sabater AL, Bonet-Farriol E, Velázquez-Villoria Á, Galofré JC. Graves' ophthalmopathy: VISA versus EUGOGO classification, assessment, and management. J Ophthalmol. 2015;2015:249125. 
  8. Kilicarsan R, Alkan A, Ilhan MM, et al. Graves’ ophthalmopathy: the role of diffusion-weighted imaging in detecting involvement of extraocular muscles in early period of disease. Br J Radiol. 2015;88(1047):20140677.
  9. Smith TJ, Hegedüs L. Graves’ disease. N Engl J Med. 2016;375:1552-1665.
  10. Villadolid MC, Yokoyama N, Isumi M, et al. Untreated Graves’ disease patients without clinical ophthalmopathy demonstrate a high frequency of extraocular muscle (EOM) enlargement by magnetic resonance. J Clin Endocrinol Metab. 1995;80(9):2830-2833.
  11. Rootman DB, Golan S, Pavlovich P, Rootman J. Postoperative changes in strabismus, ductions, exophthalmometry, and eyelid retraction after orbital decompression for thyroid orbitopathy. Ophthal Plast Reconstr Surg. 2017;33:289-293.
  12. Ponto KA, Merkesdal S, Hommel G, Pitz S, Pfeiffer N, Kahaly GJ. Public health relevance of Graves’ orbitopathy. J Clin Endocrinol Metab. 2013;98:145-152.
  13. Bruscolini A, Sacchetti M, La Cava M, et al. Quality of life and neuropsychiatric disorders in patients with Graves' orbitopathy: current concepts. Autoimmun Rev. 2018;17:639-643. 
  14. Vardizer Y, Berendschot TTJM, Mourits MP. Effect of exophthalmometer design on its accuracy. Ophthal Plast Reconstr Surg. 2005;21(6):427-430.
  15. Maheshwari R, Weis E. Thyroid associated orbitopathy. Indian J Ophthal. 2011;60(2):88-93. 
  16. Dolman PH. Grading severity and activity in thyroid eye disease. Ophthal Plast Reconstr Surg. 2018;34:S34-S40.
  17. Bartley GB, Fatourechi V, Kadrmas EF, et al. Long-term follow-up of Graves ophthalmopathy in an incidence cohort. Ophthalmology. 1996;103:958-962.
  18. Mitchell AL, Goss L, Mathiopoulou L, et al. Diagnosis of Graves' orbitopathy (DiaGO): Results of a pilot study to assess the utility of an office tool for practicing endocrinologists. J Clin Endocrinol Metab. 2015;100(3):E458-E462.
  19. Ponto KA, Pitz S, Pfeiffer N, Hommel G, Weber MM, Kahaly GJ. Quality of life and occupational disability in endocrine orbitopathy. Dtsch Arztebl Int. 2009;106:283-299.
  20. Park JJ, Sullivan TJ, Mortimer RH, Wagenaar M, Perry-Keene DA. Assessing quality of life in Australian patients with Graves' ophthalmopathy. Br J Ophthalmol. 2004;88:75-78.
  21. Kahaly GJ, Petrak F, Hardt J, Pitz S, Egle UT. Psychosocial morbidity of Graves’ orbitopathy. Clin Endocrinol. 2005;63:395-402.
  22. Yang DD, Gonzalez MO, Durairaj VD. Medical management of thyroid eye disease. Saudi J Ophthalmol. 2011;25:3-13.
  23. Strianese D, Iuliano A, Ferrara M, et al. Methotrexate for the treatment of thyroid eye disease. J Ophthalmol. 2014;2014:128903.
  24. Yakopson VS, Carrasco JR, Sharma P, Rabinowitz MP, Stefanyszyn MA. Effect of intraorbital steroid injections on intraocular pressure in thyroid eye disease. Thyroid Disorders Ther. 2015;4(1):1000173.
  25. Gillespie EF, Smith TJ, Douglas RS. Thyroid eye disease: Towards an evidence base for treatment in the 21st century. Curr Neurol Neurosci Rep. 2012;12(3):318-324.
  26. Phelps P, Williams K. Thyroid eye disease for the primary care physician. Disease-a-Month. 2014;60:292-298.