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Never heard this until I was diagnosed

Posted , 2 users are following.

PaulRL70
PaulRL70

Appears mine is genetic - No symptoms what so ever and my Ultra & Echo have come back all norm. I'm 44 year old male don't drink Or take any supplements.  Mind you my levels are high at 900 when diagnosed but what’s weird is I've only had one session of bloodletting and its shot up to 908. Trying to book a session in the hematology unit where I live in London is seriously a prob - its always booked up wks in advance Was wondering if anyone else had this prob within the London area ? Consultant said I need weekly bloodletting but  getting a 20 min appointment is rather difficult and considering I wrk in the same trust smile it doesn't look that gd

Paul

London 

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1 like, 4 replies

4 Replies

  • dillinger
    dillinger PaulRL70

    Posted

    Hello Paul,

    I'm a 44yr old male and I've also recently been diagnosed with Hereditary Haemochromatosis .

    My iron levels are 1400.

    I'm going to have a liver biopsy tomorrow morning . My consultant said I will start the blood letting after the biopsy results come through.

    I too live in London, I've no idea how difficult it will be to arrange appointments for this. It is worrying as it will be weekly and I'll have to take time off work ( unpaid), to get it done.

    • PaulRL70
      PaulRL70 dillinger

      Posted

      Hi There

      Looks like I'm not on my own on this one at 44 - maybe we should start a club smile  I actually was getting re-occuring mouth ulcers so I went to my GP just before xmas last year had full blood count to check if I was lacking in anything like B12 etc - Christmas Eve got call to say something was a mis with my blood - but wouldn't divulge what prob was - some people get men baring gifts I get a receptionist with a attitude smile - So mine was  diagonsed right out of the blue.  Apparently my levels have been high since about 2013 but no ones picked up on it which I find totally unreal.  Blood letting is pretty straight forward when you can get a appointment had one to date but my levels went up slightly - My Gp mentioned about the liver biopsy but the consultant never mentioned this to me. did you have a heart & liver scan before hand ?  Yeh actually I was little taken back at wrk don't lose no time then all sudden you get something go a mis they start giving you third degree bout your hours and making them up - unreal. What part of London you in ? I'm in East London myself - Gd luck with the biopsy tomorrow!

      Paul 

    • dillinger
      dillinger PaulRL70

      Posted

      Hello Paul.

      I was lucky to get diagnosed. I was at my GP's with tennis elbow and also mentioned that I felt constantly tired all the time . Also started getting really moody and snappy.

      He ran blood tests and saw my ferritin levels were high.

      He referred me to the Haematolgy dept at Whipps Cross. They ran more tests and I was diagnosed.

      I had an ultrasound a couple of weeks ago which showed my liver is quite fatty.

      I've been a pretty heavy drinker for years which doesn't help. I've knocked that on the head since I was diagnosed.

      Since it's a hereditary condition my brother is getting blood tests done as well to see if he has it too.

      I'm from East London too, Chingford.

      Must be something in the water.

    • PaulRL70
      PaulRL70 dillinger

      Posted

      Hi There

      Must admit not really had any symptoms actually - Although do get tired but put that down to wrk.  I'm in Stratford so yes could well be something in the water smile Your'll prob be under the same clinic as me then at the Royal London. I did actually ask if they did the blood letting at Whipps Or Newham as they are all but 15 mins drive from me but the receptionist at the Royal London didn't seem to think so - Let me know if they do it at whipps smile  Yeh its cert a new one on me Iron Overload never heard of it until now. Wise to get everyone checked out but it can be hit & miss in familys actually - Yeh you need to watch the drink with it so wise move there.  Sounds like prob caught things in time for both of us actually

      Paul 

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