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Haemochromatosis and heart disease - info please

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HazzaMcBazza23
HazzaMcBazza23

Can anyone please shed some light on something my GP told me but I forgot to ask her to explain. She said that people with haemochromatosis are at risk of heart attack.

I thought this applied only if you had undiagnosed or late diagnosed haemochromatosis or you had exceptionally high iron levels when first diagnosed?

 

1 like, 4 replies

4 Replies

  • sheryl37154
    sheryl37154 HazzaMcBazza23

    Posted

    First, we are at risk of heart disease/failure, not heart attack - two different events.  We often get severe arrythmia, leading to congestive or restrictive cardiomyopathy, angina without coronary heart disease, pericarditis,etc.

    It is probably mostly if you are late diagnosed, insufficient venesections, i.e. not totally deironed (to at least ferritin iron <50).  then="" again="" ferritin="" iron="" seems="" to="" pick="" its="" own="" path="" to="" the="" organs="" it="" is="" going="" to="" deposit="" iron="" into.=""  for="" some,="" it="" is="" straight="" to="" the="" liver,="" others="" pancreas,="" joints,="" heart,="" etc.="" it="" is="" where="" a="" lot="" of="" my="" iron="" overload="" went.=""  left="" chest="" pain="" and="" arrythmia="" returns="" whenever="" my="" ferritin="" iron="" increases.=""  took="" 9="" years="" to="" diagnose="" after="" onset="" of="" symptoms,="" my="" ferritin="" level="" was="" recorded="" as="">999.  Bad, but not exceptionally so compared to some.

    The only treatment is keeping up those venesections.  There is a heart MRI available now but it would cost you.  Besides, it can only prove that you have iron deposits in your heart or not.  The heart muscle can be scarred from the ingoing and outgoing iron particles as well but probably only seen in an autopsy.

    Just don't skip any venesections.

    • HazzaMcBazza23
      HazzaMcBazza23 sheryl37154

      Posted

      Thanks very much for that info Sheryl. I had HH diagnosed in 2001 and have managed it effectively since although I'm now about six weeks overdue a venesection right now. I had a mild heart attack recently and the cardiologist was scratching his head because he couldn't find a blockage. I have a follow up with him in a few weeks so will ask him more about the HH issue. 
    • sheryl37154
      sheryl37154 HazzaMcBazza23

      Posted

      Google "Effects of Iron Overload" and you should get a paper produced by a research hospital (bwh) connected to harvard university.  Though in this case they are talking about iron overload caused by transfusions to thalassemia patients ... same outcome.  I printed this out and took it to a heart specialist because I was so fed up with getting shoulder shrugs.

      Research indicates that HHer's usually have low to normal cholesterol, so I don't understand the heart 'attack' business unless the dr does not know the difference and is using the wrong wording.  My earlier cardiologists did not know anything about HH, so I sought an appointment with a 'specialist' cardiologist.  One of the most important words of wisdom I have had regarding complications of HH is what I said above.  Only venesections can reduce the iron.  It can't be cut out, drained out, etc of the heart.

      If you are also overweight in the belly part, you may have a fatty liver from lifestyle (separate from HH) which might cause plaque in the arteries but in your case, the dr says there was none.

      Maybe the blockage could be scar tissue??????  But I don't know if something should show on an angiogram which I am assuming you had for your dr to say there was no blockage.  Iron blocks up the finer capilliaries which is probably not visible in angiogram.

      I know this because my blood got so thick with iron that it could not get into the fine capilliaries that fed the bone of my hips - so my hip bones died and broke up - osteonecrosis.

      Let me know how you go.

    • HazzaMcBazza23
      HazzaMcBazza23 sheryl37154

      Posted

      Invaluable info Sheryl. Very grateful to you. I'll do as you suggest. It was clear the cardiologist wasn't au fait with HH issues and I'm in the process of finding a new haematologist. I may end up joining the dots for them and "evidence" may help. My own fault I'm behind giving blood: I always donated  at a blood bank because i couldn't bear seeing an armful of good blood going to waste. But I cancelled my last appointment due to a bad chest infection and this episode took over! Think that will have to go out the window now.
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