Deciding whether to take supplements for mitochondrial disease (mito) can be difficult. There are pros and cons. Remember, everyone with mito is different. What works for one person with mito might not be best for you.
Deciding whether to take supplements
It is not easy to decide if taking a supplement is right for you. Some of the reasons why these decisions are difficult are:4
- Not enough research has been done to understand whether a specific supplement is helpful for people with mito.
- Supplements can be expensive, and it might be more cost-effective to get nutrients from a balanced diet where possible.
- Supplements might work differently for different kinds of mito.
- Some supplements make health claims that are not backed by scientific evidence.
- Finding information can be difficult. This is because companies selling supplements have written some of the information. They may emphasise the benefits of supplements rather than providing balanced information.
- With no specific medicines for mito, supplements seem like a viable option for symptom management.
- Supplements can interact with other medications or medical conditions. For instance, fish oil supplements can increase the risk of bleeding if you’re taking a blood-thinning medication.
It’s annoying that doctors aren’t prepared to talk about something…because this narrow science world that has not offered me much hope. And I know that they’ve got some knowledge in their heads about how these things work, but they haven’t actually got these scientific studies to back it up.
- Lucy (Adult with mito, 2022)
Some medications and some supplements can interact when taken together. Before making any changes, the Mito Foundation recommends speaking to your health professional. This will help you make an informed decision.
We have created this checklist to consider if a supplement is right for you.
Checklist
Changes to supplement use
Each time you start, stop, or change a supplement, consider:
- Speaking to your healthcare team, including your specialists for advice.
- Learning about the reasons for starting or changing a supplement.
- Learning about the reasons not to take a supplement.
- Learning about cell health so you can understand how a specific supplement may affect you.
- Getting advice from a qualified dietitian. The amount of nutrients you need depends on your symptoms and lifestyle.
- Tracking your symptoms when starting or changing any supplements. This information can be useful to determine if the supplement has had any effect.
I’m not claiming a medal here, but I’ve had to be very active in the whole process because if nobody else is doing this and if I wasn’t doing it myself…nobody was [going to] help me. It was tricky and hard and expensive…it’s a bit of a mess.
- Mark (Adult with mito, 2022)
An approach for trialling supplements
If you decide to take a supplement, a trial can be a helpful way to learn about whether the supplement helps you.
When starting a new supplement regimen, keep a symptom diary. It can be a simple notebook or a digital document where you record any changes in your health and well-being.
Track how supplements affect you
The Full Body Check-in tool helps you reflect on each supplement and weigh the pros and cons, making it easier to choose the right ones for you.
Helpful resources
The US-based National Institution of Health Office of Dietary Supplements has a dictionary of dietary supplement terms.
Disclaimers:
- When we mention “supplements” on this page, we are specifically referring to vitamin and mineral supplements. These are products intended to add nutritional value to your diet and are not considered food. Always consult with a healthcare provider before starting any new supplement regimen.
- 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 David Manser (neurogenetics), Dr Christina Liang (neurologist), Dr Maureen Evans (Director of metabolic medicine) and Lori Bonertz (pharmacist) for their review. As well as Diane, Zach, Fiona, Alice, and Michelle, members of the mito community resource review panel.
Author: Mito Foundation
Version: 1
Date published: 19 September 2024
