Hemochromatosis is not a blood disorder, it is an iron metabolism disorder and when undiagnosed and untreated can adversely affect a person’s overall health.
Differences in penetrance may make some people with only one gene have symptoms of fatigue, joint pain, sleepiness and depression while others with two genes may never have any symptoms.
Some other tell-tale signs may include an all-year tan (ruddy complexion), severe ankle arthritis or a clenched hand, known as an “iron fist”, or even Drusen, the precursor to Age Related Macular Degeneration.
Treatment is simple for the non-anemic, periodic blood withdrawals and may be initiated without a DNA test.
Hemochromatosis (HHC) whether genetic or secondary, and is also known as Iron Overload may contribute to the formation of any of the major diseases such as cirrhosis, cancer, diabetes, heart disease or arthritis.
It is prevalent in Ireland at twice the rate as in the United States, yet, in both countries, many postpone getting diagnosed and treated. Treatment is simple and effective. Other races also have genes that can initiate Iron Overload. See www.irondisorders.org
The following blood tests are suggested: CBC, Serum Ferritin, TIBC/UIBC, Serum Iron, the Serum Transferrin Saturation percentage (TS%), and a B12.
These blood tests should be done after fasting for 12 hours.
An elevated serum ferritin may be due to inflammation in the body, and that is why the TS% needs to be done also to help determine whether it is iron overload or not.
Both results need to be elevated to make the diagnosis of iron overload.
The prevalence rate in the US of people whose ancestors came from Northern Europe is: 1 in 7 persons has one gene and 1 in 200 persons has 2 genes for HHC.
The latest recommended norms for non- HHC individuals are a Serum Ferritin of 50ng/dl up to 150ng/dl and a Transferrin Saturation Percentage between 25% and 35% with 45% being the upper range of normal.
For people with 2 HH genes the desired levels of serum ferritin are set lower, usually 20ng/dl, but, they should not let their Serum Ferritin go below 30ng/dl or they may experience iron avidity which can also cause severe health problems.
Overzealous treatment is to be avoided.
The most prescribed treatment for iron overload is periodic blood withdrawals for non-anemic persons to reduce or maintain Serum Ferritin and chelation therapy for those that are anemic.
If someone has an elevated ferritin level, they should avoid raw oysters due to the possibility of the presence of vibrio vulnificus and eating this seafood could make them very sick (bacteremia) requiring hospitalization.
Handling raw seafood or fish and walking barefoot on the beach could also cause illness. In addition, limit vitamin C in pill form to 100mg, foods fortified with iron above 4% and avoid iron supplements.
Drinking low fat milk, tea or coffee or eating low fat dairy and hard cooked egg whites with meals will help to reduce absorption and storage of dietary iron.
If you suspect or have iron overload, do not eat raw or undercooked fish or seafood. Once de-ironed many conditions may reverse, but avoiding raw seafood, monitoring of serum ferritin and the TS% as well as periodic withdrawal of blood may have to continue for life.
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When the diagnosis of hemochromatosis is made it is important to adjust the diet so that too much iron is not being absorbed because of an improper diet. The biggest considerations are not to take medications which contain iron, consume too much alcohol or Vitamin C.
Vitamin C enhances the absorption of iron and has been known to precipitate heart palpitations in those with hemochromatosis.
Excessive alcohol consumption which has shown to greatly increase iron absorption in those with hemochromatosis is set at 60g a day. Thus it is important to stay well below this level. The limit should be 30g a day. When a patient has two copies of C282Y and drinks excessive alcohol there is a multiplying affect not an additive affect on the absorption of iron. It is deadly to drink too much alcohol if you have hemochromatosis.
The ingestion of black tea has been shown to decrease the absorption of iron. African tea which is becoming popular may contain iron so too much should not be consumed.
Don't take milk thistle which has often been touted as good for the liver. It can cause severe problems in those with hemochromatosis.
Don't eat raw shellfish. They may be contaminated with Vibrio vulnificans which thrives in an iron rich environment. There have been fatalities in the northern hemisphere. Cooking inactivates this organism.
Vitamin E as an antioxidant may be of some help because too much iron may act as an oxidant. However it is probably important not to exceed 400 to 800 IU a day of Vitamin E.
Patients with hemochromatosis should not take supplements unless there are documented deficiencies. There is evidence that those with hemochromatosis may also have an increased ability to absorb other heavy metals. While iron may be removed by bleeding it is very difficult to remove other excess heavy metals.