Insulin autoimmune syndrome

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7Specialists8Treatment centers

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Overview

Insulin autoimmune syndrome (IAS), also known as Hirata disease, is a rare condition where your body makes antibodies that attack your own insulin. These antibodies bind to insulin in your blood and then release it at unpredictable times, causing episodes of dangerously low blood sugar (hypoglycemia). This typically happens several hours after eating, when the antibodies suddenly let go of stored insulin all at once, flooding your body with too much active insulin. The condition was first described by Dr. Yukimasa Hirata in Japan in 1970. Unlike other causes of low blood sugar, people with IAS have never taken insulin injections. Blood tests show very high levels of insulin along with antibodies directed against insulin. The syndrome can develop on its own or may be triggered by certain medications, particularly those containing a chemical group called a sulfhydryl group (such as methimazole, used for overactive thyroid). Many cases of IAS resolve on their own, especially if a triggering medication is stopped. Treatment focuses on preventing low blood sugar episodes through dietary changes, such as eating small frequent meals. In more stubborn cases, medications like diazoxide, corticosteroids, or other immune-suppressing drugs may be used. In rare severe cases, surgery to remove part of the pancreas has been considered, though this is generally avoided.

Also known as:

Key symptoms:

Episodes of very low blood sugar (hypoglycemia)Shakiness and tremblingSweating, especially cold sweatsConfusion or difficulty thinking clearlyBlurred visionExtreme hungerHeart pounding or racing heartbeatDizziness or lightheadednessWeakness and fatigueAnxiety or nervousnessSeizures in severe casesLoss of consciousness in severe casesSymptoms typically occurring a few hours after meals

Clinical phenotype terms (13)— hover any for plain English
Systemic lupus erythematosusHP:0002725Nonketotic hypoglycemiaHP:0001958Fasting hypoglycemiaHP:0003162Arthralgia/arthritisHP:0005059Reactive hypoglycemiaHP:0012051
Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Insulin autoimmune syndrome.

View clinical trials →

No actively recruiting trials found for Insulin autoimmune syndrome at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Insulin autoimmune syndrome community →

Specialists

7 foundView all specialists →
XM
Xavier Ayrignac, MD
Specialist
PI on 1 active trial
JP
Jean-Louis PEPIN, Md, PhD
Specialist
PI on 2 active trials
CM
Chun-Chen Yang, MD
Specialist
PI on 1 active trial
MM
Manuel Luque-Ramírez, PhD, MD, MBA
Specialist
PI on 2 active trials
AM
Abd Tahrani, MD
Specialist
PI on 1 active trial1 Insulin autoimmune syndrome publication
RR
Remi Rabasa-Lhoret
Specialist
PI on 4 active trials3 Insulin autoimmune syndrome publications

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Insulin autoimmune syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Insulin autoimmune syndrome

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

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Family & Caregiver Grants

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Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.Could any of my current medications be triggering this condition?,How often should I check my blood sugar, and what levels should concern me?,What dietary changes will help prevent low blood sugar episodes?,Is this condition likely to resolve on its own, and if so, how long might that take?,Should I carry a glucagon emergency kit, and how do I use it?,Are there any medications or over-the-counter drugs I should avoid?,Should my family members be tested for HLA types or insulin antibodies?

Common questions about Insulin autoimmune syndrome

What is Insulin autoimmune syndrome?

Insulin autoimmune syndrome (IAS), also known as Hirata disease, is a rare condition where your body makes antibodies that attack your own insulin. These antibodies bind to insulin in your blood and then release it at unpredictable times, causing episodes of dangerously low blood sugar (hypoglycemia). This typically happens several hours after eating, when the antibodies suddenly let go of stored insulin all at once, flooding your body with too much active insulin. The condition was first described by Dr. Yukimasa Hirata in Japan in 1970. Unlike other causes of low blood sugar, people with IA

How is Insulin autoimmune syndrome inherited?

Insulin autoimmune syndrome follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Insulin autoimmune syndrome typically begin?

Typical onset of Insulin autoimmune syndrome is adult. Age of onset can vary across affected individuals.

Which specialists treat Insulin autoimmune syndrome?

7 specialists and care centers treating Insulin autoimmune syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.