Hereditary Hemochromatosis ( H H-high iron ) and PBC ----I was wondering how a person with this is making out .

[Nevaehddg]

I am new to this all as just diagnosed. Iron level ( Ferritan-680) (PBC -Stage 2) Trying to gather info but very confusing and heart breaking. Anyone have same experience.

[GrittyReads]

Hi Nevaehddg,

So sorry to hear of your recent diagnoses. I'm not much able to help, and I don't know if there's anyone else on the PBC site who also has Hemachromatosis (they briefly thought that my partner had it about 5 or more years ago, but it wasn't). However, it might help the PBC members if you say a bit more about the conditions and also your route to diagnosis, how much has been explained to you so far, and what your main questions and fears are. We range from: had PBC for years, PBC overlap with other conditions, newly diagnosed, and not even sure we've got PBC, and all shades in-between, so it's a pretty wide field already.

Hope you get more responses. Good luck.

[Hidden]

Hello Nevaehddg.

Not sure if you have PBC as well as the high iron count but it is of no significance to my reply.

I do not have high iron, the latter, lower ferritin levels so unfortunately I cannot be of help with this experience.

However I did have a look round as I am not sure if there is an Health Unlocked for this Hemochromatosis. I am pasting the site for the society surrounding this condition is of any help for you. They are in the UK but the site may be of some use.

Best Wishes.

haemochromatosis.org.uk/

[judyt]

I have a friend who has Haemachromatosis. Has to have regular blood drawn to reduce the high levels and I am not sure about any medications. This person is 70 years of age and lives life to the fullest so I don''t think you need to feel you have a death sentence or anything like that.