Summary
- Diabetes and issues with blood sugar levels can develop in some people with mitochondrial disease (mito).
- Diabetes affects about one in three people with mito.
- During pregnancy, people with mito have a higher risk of developing gestational diabetes.
- The treatment for diabetes in people with mito is like treatment for those without mito. But there are some medications (like metformin) that should be avoided.
- Many people with mito and diabetes find continuous glucose monitoring helpful in managing their condition.
About diabetes
Diabetes is a condition where your body has trouble managing sugar (glucose) in the blood. Normally, your body uses a hormone called insulin that helps move sugar from your blood into your cells. There, sugar can be used as a source of energy. When someone has diabetes, there is a problem with insulin, either your body doesn't make enough or can't use it properly. This leads to high levels of sugar in your blood. This can cause health problems over time if not managed properly. There are different types of diabetes, which include:
Diabetes can occur as part of other health conditions, like mito. For those living with mito, managing diabetes can be challenging. This is due to limited knowledge of mito by health professionals. This makes it difficult to gain the support that is needed.
How common is diabetes with mito?
Diabetes affects one in 20 Australians.1 It's more common in people with mito, affecting about one in three.2
The development of diabetes is more common in:
- MELAS (Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes)
- MERRF (Myoclonic Epilepsy and Ragged-Red Fibres)
- MIDD (Maternally-inherited Diabetes and Deafness).
People with MELAS often develop diabetes in their mid-to-late 30s. For other types of mito, the average age that diabetes is diagnosed is usually between the ages of 40 – 56 years.3
Diagnosis
If you’re concerned about diabetes, talk to your health professional. Diabetes can be diagnosed by a blood test. If you are at a high risk of diabetes, or have symptoms, your health professional may refer you for testing.
Are you at risk of diabetes?
The Australian Type 2 Diabetes Risk Assessment Tool (AUSDRISK) can help you understand your risk of getting type 2 diabetes.
You might be diagnosed with mito first and then start showing signs of diabetes. Or you could be diagnosed with diabetes initially and find out later it’s connected to mito.
If you have mito, you’re more likely to be diagnosed with diabetes at a younger age than people without mito. This also puts you at a greater risk for nerve damage, known as neuropathy, and kidney disease. If you have both mito and diabetes, you are more likely to have other health issues. For example, heart disease.5
Even if you don’t have diabetes, you might still get low blood sugar (hypoglycaemia). This can result from issues with the liver, a cortisol deficiency or malnutrition.
The Australian Patient Care Standards have documented several recommendations. They are for people affected by mito and diabetes and for their health care team to follow.
Signs and symptoms
Monitoring
If you have mito, it is recommended that you have regular diabetic monitoring.5 This starts at diagnosis and continues with yearly checks. At your first appointment with a health professional, fasting blood sugar levels may be measured. They may also recommend an oral glucose tolerance test.6
People with mito and diabetes often have an endocrinologist on their health care team. An endocrinologist is a clinician who specialises in hormones and can help people with mito better manage their diabetes. The Mito Professionals Directory can help you find an endocrinologist with experience in mito.
Management
Generally speaking, management for diabetes does not change if you have mito. Initial management may start with diet and lifestyle measures. It can then progress to tablets and/or insulin. In some cases, insulin may be a first-line management approach. As diabetes is a chronic and progressive disease, early management and good blood sugar control are crucial.
Learn more about the endocrine system and diabetes in our understanding symptoms of mito resource.
Read Mito Foundation’s position statement on Continuous Glucose Monitoring (GCM) and Flash Glucose Monitoring (GM) here.
The NDSS helps people to understand and manage their lives with diabetes. It also provides timely, reliable, and affordable access to diabetes support services and products.
Diabetes Australia is the national body for people affected by all types of diabetes and those at risk.
Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.
Acknowledgement: Mito Foundation acknowledges the valuable contributions of our reviewers, we thank Dr. Tim Middleton, Consultant Endocrinologist at Royal Prince Alfred Hospital Diabetes Centre for his review, as well as Mia, Diane, Zach, Leigh, Alice, and Michelle, members of the mito community resource review panel.
Author: Mito Foundation
Version: 1
Date published: 27 August 2024
