Living with Ectopic thyroid
A condition present at birth in which the thyroid gland is in the wrong place, often causing an underactive thyroid.
Understanding Ectopic thyroid
It is a form of thyroid dysgenesis (abnormal thyroid development). The misplaced gland doesn't make enough thyroid hormone, which causes primary congenital hypothyroidism. It is present from the newborn and infant years. Signs may include slow growth, tiredness, constipation, dry skin, and delayed development.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Thyroid in an unusual location (such as the tongue)
- Tiredness and sleepiness
- Constipation and cold intolerance
- Dry skin and hoarse voice
- Slow growth
- Delays in development
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 genetic specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 changes in a person's genes cause this condition. It doesn't list a specific gene.
Also known as: aberrant thyroid; aberrant thyroid gland; abnormal thyroid location; ectopic thyroid gland; heteropic thyroid gland; thyroid ectopia
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Ectopic thyroid.
Explore research for Ectopic thyroid
Explore actively recruiting Ectopic thyroid studies with HealthSpark.
Find actively recruiting studies for Ectopic thyroid with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Ectopic thyroid studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Ectopic thyroid
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Ectopic thyroid experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.