Patients have many questions and we are here to help. We have tried to answer a few of the common questions raised about genetic haemochromatosis (GH) on these next three pages.
Q: What does it mean when the doctor tells me I am “in maintenance”?
A: This means that your iron level has been lowered enough that venesection therapy can be reduced to much less often, in order to simply ‘maintain’ that level. When initially diagnosed you may need to have venesection once a week, whereas in maintenance this might be only every few months. Transferrin saturation (TS) and serum ferritin (SF) levels are monitored regularly to ensure iron levels do not start to creep back up again.
Q: What is a simple way to explain what I’ve got?
A: How about something like this: ” … Haemochromatosis means my body absorbs too much iron. Iron then builds up to a level where it is toxic (poisonous) and does all sorts of damage – to my heart, liver and other organs, as well as my joints.”
Q: Will my children be affected?
A: This is a possibility, because genetic haemochromatosis (GH) is, as the name implies, a hereditary condition. The genetics of haemochromatosis can be quite complex but in most cases is relatively straightforward. GH is what is known as a recessive condition. There is an explanation of the risks to your children with a recessive genetic condition on this page.
Q: Is there a specific diet I should follow?
A: No, unfortunately it is not that simple. We all need to eat a healthy, balanced diet. The amount of iron that is absorbed from most foods is small in comparison to the amount that has built up over the years in a typical GH patient, or in comparison to the amount that is removed as a result of a single venesection. There are some measures you can take that will help, but you cannot treat GH by diet alone. You can see some basic guidance on the page Living with GH.
Q: What about Vitamin C, Vitamin D, Magnesium and Zinc supplements, and indeed others?
A: There are dangers if you try to “self-medicate” using supplements. For example many vitamin supplements contain extra iron, which should obviously be avoided, and vitamin C accelerates the absorption of iron by the body. If you undertake activities or have another condition that you believe requires the use of dietary supplements, you must consult your doctor to ensure there are no contraindications for GH, or that if there are, they are properly understood and managed. If you experience any change in symptoms using supplements, you should again discuss this with your doctor immediately. Try to avoid being influenced by recommendations from internet sites, especially those that may have a vested interest in marketing supplements to you. Remember that your trusted GP and consultant are the only people who are fully aware of and understand your medical history.
Q: What symptoms might ease as I am treated by venesection?
A: You can see a list near the top of our page Living with GH, however do remember that this is a generalisation and every patient is different. In 2005, a survey of patients by Haemochromatosis UK elicited the following results. Again, this is an indication only.
|Symptom||Pecentage of patients reporting improvement with treatment|
|Impaired sexual function||15|
|Chest pains, cardiomyopathy, shortness of breath||49|
|Loss of body hair||0|