- Begin treatment as soon as possible; the earlier your treatment begins the better your chances of staying healthy.
- Follow your doctors treatment plan and make sure to get therapeutic phlebotomies when you need them.
- Ask your doctor about the best way for you to get your results, so that you may keep them for future reference.
- Consider getting a second medical opinion if you are not satisfied with the treatment you are receiving.
- Educate yourself about your condition and alert immediate blood relatives of their need to get tested.
- Venesections - Small veins can sometimes make venesection difficult to perform and also at times a painful experience. Read this guide - small veins and Fistula from Haemochromatosis Australia
What is the Treatment?
The treatment of choice and the most effective strategy for the management of Haemochromatosis is Venesection (Phlebotomy).
Venesection means the removal of blood, just like giving a blood donation. During venesection excess iron is removed. Every unit of blood (500ml) removed contains 250mg of iron. The aim is to bring the serum ferritin level down to 50ug/l. The body then uses some of the excess stored tissue iron to make new blood cells.
Treatment is most effective when begun early as it can successfully prevent or stop organ damage. If damage has already occurred, treatment should halt any further damage and in most cases bring about improvement.
The length of treatment depends on the amount of excess iron in the body at the time of diagnosis, which is measured by the ferritin and transferrin saturation. Treatment may mean weekly phlebotomy for one to two years or until the iron levels have been reduced to a safe level. During the treatment the serum ferritin levels are monitored, the results of these tests give a measure of the remaining iron stores. Once the initial treatment is completed and the iron levels are back to normal then they are monitored every 3 months. As they start to rise again phlebotomy is recommended.
A Cause of Concern
Introduction of €80 for venesection
The Irish Haemochromatosis Association (IHA) has written on several occasions to the Minister for Health, Simon Harris, regarding the introduction of an €80 charge for venesection in certain hospitals. Over 2,400 people have signed a petition to get this charge removed and this information has been forwarded to the Minister.
This very unjust charge mainly affects those patients who haven’t either a medical card or private health insurance. The charge of €80 has a ceiling of €800 per annum.
Newly-diagnosed haemochromatosis patients may need four venesections in a month to reduce the iron overload in their blood caused by haemochromatosis. This will cost them €320 and some patients have had to cancel vital appointments because of the prohibitive charge.
Please help to raise awareness of the €80 charge by contacting your local politician and the media.
Treatment for Haemochromatosis is ongoing for life and may require blood to be removed once or twice yearly depending on how quickly the iron is reaccumulating. This is called maintenance therapy.
Oral supplements for vitamin B12 (5μg daily) and folate (500μg daily) help in the making of red blood cells during frequent phlebotomy.
*Patient Information: Today you are having a venesection This brochure explains just what a venesection is, how it is done, and how it helps those with Haemochromatosis and Polycythemia. (*Australian Capital Territory, Canberra, August 2015)
Update from the Irish Blood Transfusion Service
Update from the Irish Blood Bank Transfusion Service August 2018
There has been a minor delay in rolling out the service for Haemochromatosis patients to donate their blood at mobile whole blood collection clinics. This delay is as a result of a changeover in the blood bag supplier. It is hoped that this service will be up and running in some of our mobile clinics before the end of the year and will be fully operational on a National basis early in 2019.
These clinics are only for HH patients that meet the IBTS criteria for full normal blood donation. Individuals that do not meet these criteria will be permanently deferred and need to get their venesection at a GP or hospital.