List of sources supporting that TED occurs with... - Thyroid UK

Thyroid UK

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List of sources supporting that TED occurs with hypothyroid, euthyroid & TRab negative patients.

PurpleNails profile image
PurpleNailsAdministrator
6 Replies

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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PurpleNails
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6 Replies
tattybogle profile image
tattybogle

Nice one .

bantam12 profile image
bantam12

My sister had hypothyroidism and severe TED.

Buddy195 profile image
Buddy195Administrator

Great links PurpleNails

I’m forever grateful to TEDct who helped me find a TED specialist ophthalmologist in my area who (in agreement with my endocrinologist) diagnosed Hashimotos with TED.

Batty1 profile image
Batty1

I have pressure and pain behind my eyes that come and go… it takes me back to the thyroid cancer diagnosis when my eye popped out of socket with this same pressure and pain behind my eyes.

My labs are all in range is it still possible to have TED even without a thyroid ? I don’t mention eye issues to Endo I doubt he would care had eye exams with pressure test and told everything is normal just need glasses.

PurpleNails profile image
PurpleNailsAdministrator in reply toBatty1

Eye bulging & pain behind eyes is a strong symptom of TED.

The immune issue could occur after treatment / thyroid removal. The thyroid isn’t there to be attacked by immune systems but the eyes are.

It may have been active when diagnosed but has since settled.

The experience I found is that opticians & doctors would take eye concerns seriously and take pressures & other investigations but once they were confident your sight is not in immediate danger they were happy to send you away.

Batty1 profile image
Batty1 in reply toPurpleNails

I was never diagnosed with TED but suspect it could be a real possibility which I never even considered until I read this post … Thank You!

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