Haemochromatosis: Managing your condition by blood donation
The treatment of haemochromatosis involves reducing body iron stores by regularly removing blood. The body will use its iron stores to make new blood cells to replace those that have been removed. When you are first diagnosed, your iron stores (measured by a blood test called ferritin level) may be very high and you may need to attend hospital regularly to have blood removed (venesection). During this time you will also have regular blood tests to monitor your ferritin and blood cell counts.
Once your ferritin level has been reduced, you need to have blood removed much less often to maintain your ferritin at the level advised by your clinical team. This is called the maintenance stage.
Because haemochromatosis is a genetic condition you will always need to have blood removed at times to keep your ferritin at this maintenance level. You will also need to continue to be reviewed by your clinical team, though less frequently than when you were first diagnosed. Because the treatment of haemochromatosis is the removal of blood, blood donation is an acceptable alternative to venesection. It also has the advantage of using your blood for other NHS patients. People with haemochromatosis who have reached the maintenance stage of their condition can be considered as blood donors. However, like anyone who donates blood, they must be able to meet all the donor selection criteria.
People with haemochromatosis will be subject to the same screening process as other blood donors. Information about blood donor selection criteria (including information about medications and other health conditions) can be found by visiting www.blood.co.uk
How do I know if I can manage my haemochromatosis with blood donation?
Your haemochromatosis must be in the maintenance stage before you can be considered as a blood donor. You can ask a member of your clinical team at your next appointment if you are in the maintenance stage. Alternatively, you can ask a nurse where you attend for venesection. The nurse will check with your clinical team to confirm you are in the maintenance stage.
How do I become a blood donor?
If your clinical team confirms you are in the maintenance stage of haemochromatosis and you would like to enrol as a blood donor, please call NHS Blood and Transplant (NHSBT) on 0300 123 23 23 for registration. NHSBT are responsible for assessing if you can be accepted as a blood donor.
What happens next?
When you call this number NHSBT will assess whether you meet the criteria to become a blood donor. If you meet the criteria, a Donor Agreement Form will be sent to you. You will need to complete this and return it to NHSBT. If NHSBT have any questions about your haemochromatosis they will contact your clinical team at the hospital. It may take approximately two weeks before you receive notification of your first blood donation appointment.
Where will I donate blood?
NHSBT will offer you an appointment at one of their donation sessions nearest to your home address.
I’ve been accepted as a blood donor, do I still need to attend hospital for venesection?
No. If you are donating blood you do not need to have venesections. Please telephone the hospital department where you have venesections to confirm you have become a blood donor.
How often should I donate blood?
You will need to donate blood as frequently as you previously had venesections in order to maintain your ferritin level. For example, if you needed two venesections per year to maintain your ferritin level, you will need to donate blood at least twice a year. You may choose to donate blood more often if you wish. NHSBT will invite you to donate every 12 weeks (male) or every 16 weeks (female).
Do I still need to have regular blood tests if I become a donor?
Yes. Your clinical team at the hospital will continue to review your haemochromatosis if you become a blood donor. You will need to have a blood test as often as you did when you managed your haemochromatosis with venesections. For example, if you had your blood test every six months, you will need to continue having a blood test every six months when you become a blood donor. This will help you and your clinical team check your ferritin level is being maintained now you are donating blood. Your clinical team at the hospital will need to review the results of these blood tests when you have your next appointment. It is helpful to arrange a blood test for ferritin and full blood count before your hospital review appointments so your clinical team have up to date results.
I have been accepted as a blood donor, will I be discharged from the hospital?
No. Although you do not need to attend hospital for venesections if you become a blood donor, it is important that you remain under the care of your clinical team for your haemochromatosis. We recommend that every person with haemochromatosis is reviewed by their clinical team at least once a year. Your clinical team may want to review you more often than this. If this is the case they will discuss this with you at your next appointment.
NHSBT said I do not meet the criteria to become a blood donor, what do I do?
You will need to continue to attend hospital for venesections. If you are declined as a blood donor you will need to have blood removed by venesection to maintain your ferritin level. Please inform the staff at the hospital where you have your venesections.
I have become a blood donor but I was told I couldn’t donate when I attended a recent blood donation appointment, what do I do?
There are a number of reasons why a donor may be temporarily deferred, including foreign travel, infection, surgery or medical investigations. All donors, not just those with haemochromatosis, are asked about these each time they attend to donate blood. You can rearrange to donate blood another time when these reasons no longer affect you, as long as your ferritin level is at or below the level recommended by your clinical team. If your ferritin has risen above this level, please contact the hospital where you previously had your venesections. They will contact your clinical team and arrange for you to have a venesection if required.
I became a blood donor but I have been told by NHSBT I no longer meet the criteria to donate blood. What do I do?
Sometimes people who have previously donated blood are told they can no longer do so, for example, if they start a new medication or are diagnosed with an additional condition. If you have been told you are no longer able to donate blood you will need to resume having venesections at the hospital. If this is the case, it is important that you contact your clinical team at the hospital and the hospital department where you previously had venesections to arrange this.
Finally
We want to thank you for being a blood donor and helping to save and improve many lives through the selfless act of blood donation. In addition, we are pleased your condition can be helped by putting your donated blood to good use.
If you are told you can no longer give blood or have additional questions, please contact the hospital department where you previously had venesections:
Furness General Hospital: telephone 01229 491 288
Westmorland General Hospital: telephone 01539 715 399
Royal Lancaster Infirmary: telephone 01524 516226
Date of publication: 06/03/2019
Reference code: ​PIL115V2/IND068
Review date: 01/04/2027