Haemochromatosis

[deeppurple101]

Hi, I'm new here. Would like advice about my condition. Just been diagnosed. My feretin level was 1343 and is down to 409. At what level is blood usually taken. Any advice is welcome.

[Hidden]

Hi there. Good to hear you have got a diagnosis for something that I am sure was causing you symptoms, or leaving you open to potential problems in the future. I am assuming that you have already started giving blood (phlebotomy) as your ferritin levels are lowering. That will continue until they are down to normal and then you will be tested periodically. There is a good site at haemochromatosis.org.uk which answers a lot of the questions your GP may not be able to give you.

Mike

[deeppurple101 in reply to Hidden]

Thanks for replying Mike. I had the first blood test and it was 1343, then I just stopped having alcohol for 2 months and when it was tested again it was down to 409. I only had 2 glasses of wine a night but it was every night. I have only just been diagnosed so have not had any blood taken yet. I'm seeing the specialist in 7 weeks and was worried that I need to get rid of some blood.

[Hidden in reply to deeppurple101]

It is just like giving blood - fairly painless and taking a couple of hours. Good that is has been identified early as it can cause health problems. It GP to test for it in the first place. Did you have any of the usual symptoms?

[Michiganpbc]

Hi I have the same and they start taking blood right away they look at the ferritin level and iron saturation then if those are abnormal too they will start taking blood, you may want to contact your doctor soon as this disease can cause severe damage if left untreated, good luck to you....

[Figit]

Haemo & me. Sadly my father died of this, never diagnosed...But lucky me, early diagnosis. The blood letting goes on untill feratin level normal (35). I now, 10 yrs., on have test once a year & most years don't need blood letting. So don't panic it is treatable, I am 64 & still 'Kicking'. Diet wise I still eat iron rich foods but very small amounts & never with vit C drinks. Do not despair you can live to normal life span,