Living with Fetal iodine syndrome
Problems in a fetus or newborn when the mother had too little or too much iodine during pregnancy, often affecting the thyroid and development.
Understanding Fetal iodine syndrome
Too little iodine is linked to goiter and an underactive thyroid (hypothyroidism). Severe lack during pregnancy is linked to congenital hypothyroidism, which can cause severe mental dysfunction, hyperactivity, attention problems, and a lasting drop in IQ. Too much iodine in the third trimester can cause hypothyroidism and an enlarged thyroid (goiter) in the baby.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Underactive thyroid (hypothyroidism)
- Intellectual disability
- Hearing loss (sensorineural)
- Weakness or paralysis on one side
- Stiff leg muscles (spastic diplegia)
- Enlarged thyroid (goiter)
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 ear, nose, and throat 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
World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: World Craniofacial Foundation
- 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 World Craniofacial Foundation 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
It is caused by the mother getting too little or too much iodine during pregnancy. GARD also lists autosomal recessive inheritance.
Patient organizations
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- FACES: The National Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
You are more than your diagnosis
Perspectives from people navigating life with Fetal iodine syndrome.
Explore research for Fetal iodine syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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