Haemochromatosis – Ten Things Everyone Should Know

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Haemochromatosis, an inherited disease which results in iron overload, is incredibly common, yet many people know little or nothing about this disorder. Personally I’m not surprised about this, as until recently I also didn’t talk a lot about having this disease, even though it is a significant part of my life and has been for almost a decade.

Since launching Iron-ic Wellbeing, I can’t tell you the number of people who have asked me about the disease. Furthermore, I’ve been overwhelmed by the number of friends and colleagues who are now opening up and talking about either themselves or their mother, father, sister, brother, cousin, uncle, aunt or partner who has this disease. To say that I’m thrilled to be contributing to increased conversation about haemochromatosis is an understatement!

I’ve also found that people are really interested in knowing more about the disease, so here are the top ten things I’ve learnt about living with haemochromatosis – and remember, I’m not a doctor, just someone living with this disease who is happy to share her experiences, so please seek medical advice if needed.

  1. Haemochromatosis is one of the most easily treated diseases if diagnosed early – seriously, if you suspect that you have any of the symptoms (check out the list of symptoms on my Haemo What page or visit Haemochromatosis Australia here), please make an appointment to see your doctor as the disease can be diagnosed with a simple genetic blood test. I was lucky enough to have an astute and inquiring doctor (thanks Dr Trish), who decided not to dismiss my common symptoms and to run a full blood test – this is where my high iron levels were first picked up. From there, it was just another blood test (called the HFE gene test) to confirm that I had the genetic condition, and voila, the rest is history.
  2. Not all people experience all symptoms – this is not a “one size fits all” disease and symptoms can vary from person to person. It’s important that you don’t see the common symptoms of haemochromatosis as a shopping list and try to tick them all off in self diagnosing whether you have the disease. Personally, I was lucky that the early symptoms of my disease (fatigue, lack of energy and mild joint pain) were picked up by my GP. Whilst I’ve developed other symptoms since being diagnosed, the fact that I don’t have all symptoms by no means suggests that my, or your, disease is any less serious than anyone else’s.
  3. It’s critical to stick to the venesection program agreed with your doctor – more commonly known as donating blood, regular venesections will ensure your iron levels stay at a safe level. Just as some materials can rust, so too can our organs if they are not de-ironed. I give blood every two months (500ml at a time) and, while I know this will be a lifelong requirement, personally I just love the experience – not only do I get assigned the cool name of being a “therapeutic donor”, but I get a buzz from knowing my blood can be re-used by the blood bank to help others in need.  Oh, and my number one tip to prepare for a venesection is to drink lots of H2O and coconut water. Before the treatment, the increased fluid assists with blood flow (you can be in and out more quickly) and post treatment it will assist with faster hydration.
  4. Iron shouldn’t be completely omitted from your diet – whilst haemochromatosis sufferers absorb almost twice as much iron from food as normal, it’s important not to go cold turkey as everyone needs iron. Iron is essential for the production of red blood cells, which carry oxygen to our tissues, digestion, energy, immunity and mental agility. Cutting all foods rich in iron from your diet can therefore lead to other illnesses (including, ironically, anaemia if taken to the extreme) and should be avoided, not to mention your diet would be a nightmare to maintain!
  5. You can have ‘a little bit of everything’ – as a closet country music fan I couldn’t help quoting Keith Urban and it really is true! Whilst it’s important to keep an eye on your consumption of iron rich foods – those you’d naturally think of, such as red meats, but also poultry, fish and some seafood – managing your diet for haemochromatosis is more a matter of adjusting the frequency and quantity of high iron foods than eliminating them completely. As the daughter of a sheep farmer, I don’t think I could completely eliminate red meat from my diet, so I’m just careful in how I plan my meals in any given week.
  6. Food combining can influence your iron levels –when you eat iron rich food, it’s also important to try to eat foods that slow down iron absorption, such as dairy products, wholegrain breads and cereals, eggs, canned salmon, cranberries, apples, rhubarb and blueberries. One of my favourite week night desserts is natural (unsweetened) yoghurt with blueberries and a sprinkling of shredded coconut – heavenly, oh so easy and a great dessert to help reduce iron absorption.
  7. Drinking tea and coffee can help to inhibit iron absorption – choosing to drink tea or coffee with, or soon after, meals can also help slow the uptake or iron absorbed from food. Amen to that! I’ll have more to say on the benefits of drinking tea in future posts, however drinking tannin rich tea (black, green, white and some herbal teas) and coffee with meals can result in a significant reduction in iron absorption (for those stat nerds out there – its around 60 -70% for tea and around 35% for coffee). I even incorporate tea into my cooking where possible, such as my Chai and Coconut Roasted Pumpkin Soup, which is pictured above (check out the recipe on my Nourish page).
  8. Don’t combine high iron meals with vitamin C –we all know that vitamin C is an essential nutrient, however our bodies only need a small daily dose to keep us healthy. This is great news for people with haemochromatosis as vitamin C increases iron absorption, so it’s important to keep our intake to a minimum. In reality I’ve found this to be as simple as avoiding fruits and juices containing high levels of vitamin C when eating other high iron foods and saving these for in-between meals. That way I still get my kick of kiwi fruit, strawberries, raspberries and mangoes and pineapple (luckily I’ve never been a big fan of oranges) so I never feel deprived.
  9. There are some foods which are best to avoid where possible – now while I’ve said you can generally have a little bit of everything, it is best to avoid those foods which have been tinkered with, such as breakfast cereals and breads fortified with iron. It’s also important to check that your daily multivitamin doesn’t contain iron. For years I took a daily vitamin without giving this a thought. If you take a multi vitamin, go and check the label now. The last thing you want to be doing is adding fuel to the fire! There are now many multivitamins on the market which omit iron, so it won’t be hard to find a new one to help you get through the day.
  10. Plan Ahead – Deciding on your weekly meal plan ahead of time will not only help you to better consider your food options, but also potentially help to save money (and, if you are anything like me, you can put the savings towards an ever expanding tea collection!). Stay tuned for future posts which will include a list of foods which promote and inhibit iron absorption, suggested shopping lists and templates to help you develop your own delicious meal plans at the start of each week.

What are your tips for living your best life with haemochromatosis?  I’d love to hear your stories, so drop me a line.

3 responses to “Haemochromatosis – Ten Things Everyone Should Know”

  1. Jude says:

    Great update Joanne! Last week I shared your post on my FB page – lo and behold, my cousin’s daughter (in my FB family list) contacted me to tell me that she had just been diagnosed and had I been checked out, too. We both share an uncle who was diagnosed with haemachromatosis many years ago. We can see the genetic thread coming through. Although I have the ‘all clear’, I’d better more assertive and push more awareness out to other extended family members. Thank you!

    • Hi Jude, so pleased to have assisted in getting your family chatting about haemochromatosis. It wasn’t until I was diagnosed that I discovered my Aunty has the disease too! I’m going to be talking about “family secrets” down the track and how they are not always helpful. Let me know if there is anything in particular your family members would like me to focus on in future posts. Thank you for your incredible support, the more people sharing information and talking about this disease the less likelihood there is for unnecessary health issues arising. Thankfully it really is a very manageable disease. Joanne x

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