Mitochondrial disease (mito), can affect people in different ways. Mito can affect many parts of the body. Two people with mito may have very different symptoms and health needs.
Many people with mito have regular checks. These checks can help your doctors look for changes in how mito is affecting you.
These recommendations are general information only.
They are designed to help you talk with your health professionals about monitoring that may be relevant. Not every test or check will be needed for every person with mito.
The checks you need may depend on your type of mito, symptoms, age and health history. Some tests may have risks or costs. Your health professional can help you decide which checks are useful for you.
This information is based on the Monitoring mito resource which is adapted from the Patient care standards for primary mitochondrial disease in Australia.
Recommendations for ongoing monitoring
The sections below cover different types of monitoring and support.
You do not need to read every section at once. Choose the sections that feel most relevant to your symptoms, health needs, or questions.
Your doctor or care team can help you work out which checks may be useful for you.
Mental Health
Mental Health
You can talk with your doctor or care team about your mood, stress, anxiety or depression.
Support looks different for everyone. Find the right support for you.
Mental health and mito resources
If you are finding things hard, you could ask your GP or care team about mental health support.
If you need urgent help, call 000. For crisis support, Lifeline is available 24 hours on 13 11 14.
Fatigue
Endocrine
Kidneys
Movement
Liver
Digestion
Respiratory
Hearing
Heart
Vision
Regular checks and lifestyle considerations
It can also help to keep up with general health checks that are not only about mito.
These may include:
- vaccinations
- cancer screening
- sexual health checks
Your GP can help you work out what is relevant for you.
Fatigue
Fatigue
Exercise or movement may help some people with mito, but it should be tailored to your symptoms, energy levels and safety.
Speak with your health professional about whether an exercise program is appropriate.
This may involve:
- an exercise physiologist
- a physiotherapist
- a sports medicine physician
- another allied health professional
Medications
Diet
Mobility
Hearing
This resource is based on the Patient care standards for primary mitochondrial disease in Australia and Mito Foundation’s plain language monitoring resource.
It has been adapted for the mito community to support conversations with health professionals.
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.
Author(s): Mito Foundation
Reviewer(s): Health professionals specialising in mito
Version: 1
Date published: Wednesday 29 November 2023
Last reviewed: Monday 25 May 2026
