Long wait for treatment for high serum ferritin

I feel ferritin at that level is doing some damage, just none that is evidenced. I had 925 ferritin and had normal TS % as well, also no damage. I have 2 mutations but not of the same kind (H63D and C282Y). I would recommend you start if you've confirmed the gene mutations. There's no risk of waiting inbetween. Your body will still be replacing the blood loss for 2-3 weeks anyway and will be using ferritin iron to make that new blood. Start the process

Thanks,hemopatient123.I will call at the hospital.

I did not realise you needed treatment for highe ferritin levels how does this work as I have it for low ferreting levels by infusion

They take about 500ml per time until your levels return to normal.

Hi Eric.  Like you I was somewhat frustrated by the long wait between diagnosis and treatment (venesections) starting.  My ferritin level was not too different to yours at the start of about 1200 and similarly dropped with a change of diet before I started treatment.  Also I did consider going to a private hospital to commence venesections earlier but my GP highlighted that my iron level had taken over 40 years to get to the level I was at and that a month or two extra wait was very unlikely to make much difference.  Another observation is that your TS is not really reduced until the very final stages of your venesection programme when your ferritin is I think at about 50 and below.  I've been through a long (over 9 months) and sometimes frustrating (with ferritin going up on some occasions) venesection programme where I started weekly venesections and then soon changed to fortnightly and recently monthly (my ferritin is now just below 50) as my hospital takes a cautious view in not wanting me to become anemic.  It's been very tempting to try to argue to quicken things up but the NHS are very experienced in treating thousands of people with this condition and I think following their timetable is the best route, frustrating though it maybe.

Thank you Mr L.That makes me feel better.I didn't get anywhere at the private hospital abroad anyway as the consultant wasn't due back until just before I was due to leave.

Hi again it sounds like a similar thing to what my mum had done!,, she had to go regularly but hers was to do with her blood being too thick or something and they was trying to thinner it ..... But she was never put on blood thinners or any thing!!!! I am sure it had something to do with her blood making to many red cells I think!!!!! She had to for this regularly until she gave up smoking . I think they did one or two more sessions with her and nothing since its been over a year now 

Ferritin can build up very slowly as mine does,not had any venesections for iover a year, my son has to take aspirin to thin his blood ,the prescription ones cost a lot,but if neccessary for anyone with thick blood you can but the 75mg ones for £1 at the chemist,and i=they are the same as the prescription ones

It will not harm to start tretment and then pause,and you are not likely to be in any danger

I feel it is doing damage. My father died of leukemia due to hemochromatosis., grandfather had pancreatic cancer and died. This disease is nothing to follow around with.

In the u. S. They allow you to go to a blood donation center with the disease and donate as it us not contagious, I also saw a sign if you were donating for treatment reasons that they would take your blood for a small fee. Maybe you can go to a donor center and get it startef