Thyroid Eye Disease outside of Graves is very rare.
We do see reports of professionals incorrectly dismissing the possibility of it occurring on the basis that someone isn’t hyper alone.
This is a collection of sources highlighting evidence that it does.
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Frontiers in Endocrinolgy
Thyroid eye disease or Graves’ orbitopathy: What name to use, and why it matters
frontiersin.org/articles/10...
“While most cases occur in the setting of the autoimmune hyperthyroidism caused by Graves’ disease, about 10% of patients will not be hyperthyroid at the time of the ophthalmic diagnosis”
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GPonline
gponline.com/expert-opinion...
“In most cases TED is related to Graves' hyperthyroidism, although some patients will have no measurable abnormality of thyroid gland function.”
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BTF
btf-thyroid.org/thyroid-eye...
“In most patients, the same autoimmune condition that causes TED also affects the thyroid gland, resulting in Graves’ disease. Graves’ disease most commonly causes thyroid overactivity (hyperthyroidism) but can also rarely cause thyroid underactivity (hypothyroidism). TED can occur in people when their thyroid is overactive, underactive or functioning normally”
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National Center for Biotechnology Information
ncbi.nlm.nih.gov/pmc/articl...
The Pathophysiology of Thyroid Eye Disease (TED): Implications for Immunotherapy
“TED is most commonly associated with hyperthyroidism, however patients may be hypothyroid or euthyroid.”
It is also interesting that autoantibodies formation is not always present.
So this would explain how TED can occur without TRab, but the severity can be closely correlated.
“The proximate cause for hyperthyroidism in GD (Graves’ disease) is secondary to activating autoantibodies to TSHR. However, TED can present independent of GD, endocrinologic manifestations or autoantibody formation. Generation of activating antibodies against the TSHR correlates with TED severity, but there is currently no evidence to indicate that autoantibody production is the cause of ophthalmopathy.”
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National Center for Biotechnology Information
Thyroid Association Ophthalmopathy in Hashimoto’s Thyroiditis: a Case Report
ncbi.nlm.nih.gov/pmc/articl...
“Thyroid associated ophthalmopathy can sometimes occur in Hashimoto’s thyroiditis …..”
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Prevent blindness
preventblindness.org/thyroi...
“Thyroid eye disease is most commonly associated with Graves’ disease. It can also occur with normal thyroid hormone levels or low levels of thyroid hormones
(hypothyroidism).”
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Healthy women
healthywomen.org/condition/...
“TED is also known as Graves' ophthalmopathy or Graves eye Disease because 9 in 10 people have Graves”
“Less commonly, TED can happen to people who have hyperthyroidism without Graves or have hypothyroidism a condition where the thyroid doesn't produce enough thyroid hormone”
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Thyroid eye disease
thyroideyedisease.org/categ...
“TED often occurs in conjunction with autoimmune thyroid diseases such as Graves’ disease (90%) or Hashimoto thyroiditis (3%)”
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University of Iowa
webeye.ophth.uiowa.edu/eyef...
“More recently, TED has also been noted in Hashimoto's thyroiditis as well as in the absence of a thyroid dysfunction.”
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Antithyroid Treatment as Effective as RAI for Graves Relapse and better for TED
Do I have Graves disease?
