What is the treatment?

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 only method of removing excess iron from the body is by removal of blood. This is by giving a blood donation and is called venesection or phlebotomy therapy. Every unit of blood removed contains 250mg of iron. The body then uses some of the excess stored tissue iron to make new blood cells which are removed in subsequent phlebotomy 

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. 

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. Venesection treatment will allow iron tissue to be mobilized and iron stores will return to normal. However, it will not cure any clinical condition such as diabetes already present at the time treatment is started. This emphasises the importance of early diagnosis!  

Irish Blood Transfusion Service (IBTS) Haemochromatosis Programme (2014 to date)
 

A new IBTS phlebotomy service is currently available for Haemochromatosis patients in the D'Olier Street clinic and at the CorkCentre, St Finbarrs Hospital, Cork.

The service will consist of phlebotomy only, and will only be provided for patients who have a prescription from their doctor.  Download Donor Prescription Form.pdf

Are you a GP treating patients with Haemochromatosis? If so, please click here.

Are you being treated for Haemochromatosis? If so, please click here.

Download a general information leaflet here.(Please note clinic times are subject to change)

Download a general information leaflet here.(Please note clinic times are subject to change)

Donor Prescription Form.pdf

Details of IBTS HH clinics in Cork and Dublin

Clinic Locations:

The IBTS Haemochromatosis Dublin Clinic: D'Olier Street, Dublin, the 2nd Floor, Lafayette House, 1-5 D'Olier Street (at O'Connell Bridge)

The IBTS Haemochromatosis Cork Clinic: Munster Regional Transfusion Centre, St.Finbarrs Hospital, Douglas Road, Cork

Opening Hours:

Dublin Clinic Opening Hours: Every Wednesday 10:00 hrs to 12:00 hrs. (except Public Holidays)

Cork Clinic opening hours: Every Monday 12:30 hrs to 14:30 hrs (except Public Holidays)

Other information:

This is conceived as a two year pilot project in the first instance. Continuation beyond two years will depend on the success of the pilot in providing cost effective care to people with haemochromatosis at the IBTS.

The service will consist of phlebotomy only, and will be provided for patients who have a prescription from their doctors on the downloadable IBTS prescription form, Download Donor Prescription Form.pdf

Referred patients must have hereditary haemochromatosis confirmed by genetic testing.

People who are not eligible to be blood donors as well as people who are eligible will be able to use this service. Eligible haemochromatosis patients who wish to become donors will subsequently be able to donate during normal donation hours at the D'OLier St clinic or in St Finbarr's Cork.

Phlebotomies will be at a maximum frequency of 4 per year with a minimum of 90 days between phlebotomies.

Diet 

The common view is that a low iron diet is of little benefit and is not advised since considerably more iron can be removed in a single venesection.  A balanced diet is very important. The following is advised:    

  • Modest alcohol consumption
  • No iron medication or multivitamins containing iron
  • No bread or cereals with fortified iron.

What is Haemochromatosis?
What are the symptoms?
What are the tests?

How do I inherit it?
Who should be tested?