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Haemochromatosis diagnosed

Posted , 6 users are following.

terry34297
terry34297

Hi. I was diagnosed as haemochromatosis positive yesterday. I also have low epo levels, which could indicate a secondary condition, so have been booked in for an MRI scan next week. I'm worried that I also have kidney disease, so if theres anyone out there who can give me some advice then it would be much appriciated.

1 like, 20 replies

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  • Jenne
    Jenne terry34297

    Posted

    Hey Terry,

    Don't feel alone. I was also recently diagnosed with this. I'm sure you may feel panicked. I do not know anything about kidney disease so I'm sorry if I cannot help. Do not worry at all about the MRI. It depends on the hospital you get the MRI, but I had mine in September and It was just fine. They let me listen to pandora and pick a station to listen to. I felt very calm (I was given an anxiety medication to calm me) And the nurses were fantastic. They were very nice to me. 

    Now, I do not know much about your iron levels, but what I suggest is that you avoid foods rich in iron. Lately, I've been a vegetarian to avoid iron from meats. I also stopped eating cereal. There are many other healthy foods to choose from when it comes to breakfast. (from what I've heard) you can drink milk with what you eat (anything with calcium) and it almost stops your body from absorbing as much iron. I also read that tea and coffee help as well. I just drink a little green tea in the morning. Treatments for Hemochromatosis include a phlebotomy. I suggest you choose that over a medication. Most medications can hurt your liver and other organs. 

    I recently ordered a cookbook, by the way, I have received it yet.

    Check out the iron disorders website too if you want to read more about hemochromatosis. 

    I hope this helps! 

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    • terry34297
      terry34297 Jenne

      Posted

      Hi Jenne.

      Thanks for responding to my post. I had the MRI last week so just awaiting the results. When I was diagnosed my consultant seemed concerned about my low epo levels, so treatment for haemochromatosis wasn't discussed in great detail as he wanted to ensure there wasn't a secondary problem with my kidneys. I have already been told my liver is enlarged so I just want to get started with vs now. I'm really fed up with constant headaches, joint pain and fatigue! Yes I have started drinking milk with meals and cut out cereals. I don't eat much red meat as prefer chicken.

    • mike80628
      mike80628 Jenne

      Posted

      Hiya...yeah, calcium is the number one inhibitor of iron, both heme and non heme. So, plenty of milk. I also take a calcium supplement daily...especially when I'm eating somewhere, and there's no milk available. It's a great excuse to eat ice cream after a meal as well. Tea is great for stopping non heme iron absorption. I also take something called IP6. Read up about it. Totally natural, from Japan. Comes from rice bran. Massive anti oxidant and natural iron chelator.

      I eat no red meat. Loads more fish, especially tinned salmon and sardines...pretty much no iron absorption from these tinned fishes.

      Just a few tips I've picked up....I also use loads of turmeric, in capsule form as well. Iron inhibitor and good for joint pain....

      Bon apetit!

    • mike80628
      mike80628 terry34297

      Posted

      Hi Terry...not just milk, but enjoy ice cream etc as well after a meal. I also take calcium supplements when I eat, if no milk around. Drink plenty of tea as well. I love green tea! Read up on IP6 as well. A natural supplement from Japan, made from rice bran. Totally natural and harmless. A massive anti oxidant, important for us iron folk..and a natural iron chelator. Don't go mad with diet...just check labels for added iron, especially cereals, and less red meat.

      Mike.

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