Living with Steroid-responsive encephalopathy associated with autoimmune thyroiditis
A brain condition, mostly in adults, that causes confusion, behavior changes, and seizures along with thyroid inflammation.
Understanding Steroid-responsive encephalopathy associated with autoimmune thyroiditis
It occurs mainly in adults and affects females more than males. It is linked to Hashimoto's thyroiditis, but how the two are related is unclear. Doctors diagnose it from symptoms, an exam, and lab tests, and more common conditions may need to be ruled out first. It can begin at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Confusion
- Behavior changes
- Trouble thinking clearly
- Seizures
- Hallucinations or paranoid thoughts
- Underactive or swollen thyroid
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists, genetic specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association, Autoimmune Encephalitis Alliance and Hashimoto's Encephalopathy SREAT Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Autoimmune Association, Autoimmune Encephalitis Alliance, Hashimoto's Encephalopathy SREAT Alliance
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Autoimmune Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the exact cause is not known but may involve an abnormal immune or inflammatory response.
Also known as: hashimoto encephalitis; sreat; sreat - steroid-responsive encephalopathy associated with autoimmune thyroiditis
Patient organizations
- Autoimmune AssociationSteroid-responsive encephalopathy associated with autoimmune thyroiditis · United States
- Autoimmune Encephalitis AllianceSteroid-responsive encephalopathy associated with autoimmune thyroiditis · United States
- Hashimoto's Encephalopathy SREAT AllianceSteroid-responsive encephalopathy associated with autoimmune thyroiditis · United States
- International Autoimmune Encephalitis SocietySteroid-responsive encephalopathy associated with autoimmune thyroiditis · United States
You are more than your diagnosis
Perspectives from people navigating life with Steroid-responsive encephalopathy associated with autoimmune thyroiditis.
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