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Hemochromatosis..

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cynthia_83830
cynthia_83830

I recently found out that I was anemic with a hemoglobin level of 9.5 and gradually dropping with iron infusions. I had 2 infusions over 2 weeks.

I couldn't take iron supplements because of the fact that they cause severe constipation and I already have that problem with other medications that I'm taking.

I had my infusions on 04/10/2018 & 04/17/2018.

I am disabled and I have multiple medical issues, as well as emotional and physical problems.

Due to other factors, I had an abdominal MRI done on 05/01/2018 and it was found that my liver was overloaded with iron,

ie: Hemochromatosis.

This just totally shocked me, as I had no idea as to how or when this has happened!

I am so scared!

This is serious stuff!

This can cause numerous medical problems.

Even death!

Does anyone know anything about this?

0 likes, 2 replies

2 Replies

  • Monkey123
    Monkey123 cynthia_83830

    Posted

    How did they diagnose you with Hemochromatosis?  By a MRI alone?  Do you carry the gene?  My iron and sat went nuts after 4 months of 1 pill a day. They thought I had this but I don’t carry the gene. We’re not sure why mine went up to crazy numbers after the supplement. 
  • All4Health
    All4Health cynthia_83830

    Posted

    Hi cynthia 83830,

    There's primary and secondary Haemochromatosis.  I'm not 100% sure, but I thought the gene would only apply to primary, whereas other conditions could cause the secondary Haemochromatosis.

    I'd have to stick my kneck out, and say I think your two infusions have caused it.  But the body is very clever, and if it's been having iron forced on it, which it might not have wanted, it'll usually find a way to park the iron off somewhere - safely if it can.  Swollen spleen and / or liver are I believe, some of the knock on effects of Haemochromatosis.  There are quite a few others - eg. hair falling out, fingernail shaping (although some fingernail changes can be from genuine iron deficiency), vomiting etc.

    So the question is (assuming I'm even close to being right here) - on what basis were you given the infusions ?

    I believe that the way in which iron levels etc. (and Haemoglobin levels) are measured, and assessed needs a revision.  Because I'm certain there are folks taking iron who shouldn't be, when actually they would get a better result from walking away and reducing iron for a while, and then comparing results.

    I'm sure I've noticed Haemoglobin sometimes falling when you give extra iron, but unless you're getting blood tests every day, it's difficult to pin that down.  I'm running a test at the moment, to try and prove that - and I could still be mistaken here !.

    And don't get me wrong, we can't live without iron, and some people will genuinely have iron deficiency.

    So, what advice have you been given since the MRI scan ?  Are they able to do anything about the overload ?

    Primary Haemochromatosis sufferers can regularly get blood letting done, but you'd need to consult with your specialists to advise what's best for you.

    I'd say your body parking it off in your Liver was your system trying to look after you.  The LIver is a fantastically resourceful piece of 'engineering' !

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