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Hemochromatosis?

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lynne07062
lynne07062

My endocrinologist who I see for hypothyroidism sent me to a sleep specialist because of my increased Restless Leg Syndrome. He ordered lab tests for iron and the results showed my Ferritin is high - 613ng/mL. He recommended I see my General Practitioner to investigate this further.

I had more lab work done and genetic testing for hemochromatosis. Those results show my AST is 64 Units/L and my ALT is 93 Units/L. In addition my doctor called today to tell me I'm C282Y heterozygus. I now have an appointment in two weeks with a Gastroenterologist who specializes in liver disease.

This is all overwhelming and I'm hoping can be easily resolved with some life style changes but after researching and reading many posts I'm not sure. I appreciate any and all advice from those of you who have experienced this.

Thank you.

0 likes, 5 replies

5 Replies

  • Linda1967
    Linda1967 lynne07062

    Posted

    Hi Lynne, I originally went to the doctor with severe restless legs and also the sensation that my legs felt incredibly itchy especially after a shower when it could drive me crazy. I thought after blood tests it would show that my iron levels were low but they were the opposite with a very similar level to yours.

    I was also referred to a Gastroenterologist/liver specialist and had further tests and scans to check that there was no lasting damage and thankfully there wasn't. I went along to weekly sessions to 'donate' blood and now keep it in check by going around 2 times per year. I know there are people who are diagnosed with much higher levels and damage to organs have taken place so I think I was quite lucky and hopefully you are too.

    Good luck with your treatment but you sound very similar to me and I am doing great,

    regards

    Linda

    • lynne07062
      lynne07062 Linda1967

      Posted

      Thank you Linda. I'm glad you're doing well and I'm encouraged by your response. I hope that donating 😃 blood will be the answer. I'm seeing the Gastro/Liver doctor in two weeks.

      Lynne

    • Linda1967
      Linda1967 lynne07062

      Posted

      You are welcome and my only other recommendation would be to take it easy after donating blood on a regular as it can be tiring so no strenuous exercise. The specialist I saw didn't suggest any diet changes as it wouldn't make much of a difference but I have read that drinking tea can block some of the iron absorbtion.

  • sheryl37154
    sheryl37154 lynne07062

    Posted

    If you are heterozygous C282Y then your high ferritin is not caused by haemochromatosis. You have to be homozygous or compound heterozygous (C282Y/H63D) for that. Your gastroenterologist will discover what it wrong which may involve too much alcohol, fatty liver, inflammation, infection or malignancy.

    Once you know that you will know or be told what lifestyle changes to make.

    • lynne07062
      lynne07062 sheryl37154

      Posted

      Thank you Sheryl. You seem to be very knowledgeable throughout all the discussions I've read on this subject. Your advice is appreciated.

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