I'm trying to get a handle on some things doctors have told me over the last year or so.
I go into the doctors January of 2010 to get a TB test for a job. They take my blood and when the results come they say my liver is inflamed.
I wait like a year to to go back (because I'm an idiot) and they take another test. The doctor is puzzled by the high levels of iron, and decides to test me for this genetic disease that causes me to absorb too much iron. He also tested me for a form of hepatitis. I take the tests and it turns out I don't have either of them.
So the doctor then calls me and says, since i don't have this disease, the iron levels are probably due to a normal fluctuation, but I should come back and take another test just to be sure.
Of course, being an idiot- I don't, until it's a week away from me taking a big trip abroad. I went today and I saw a different doctor than the one I spoke to on the phone and he says he's still focused on what's going on with my liver. Now he wants to test for all these obscure forms of the genetic disease just in case something comes up.
I feel fine, I haven't experienced any symptoms of the disease they are talking about. I never experience pain of any kind. I'm in good shape, 25 years old. What's going on with this? Can anyone give me some info to cool my mind until the test results come back?
Hemochromatosis is a disorder that results in too much iron being absorbed from the gastrointestinal tract.
Causes, incidence, and risk factors
Hemochromatosis occurs when too much iron builds up in the body.
There are two forms of hemochromatosis: primary and secondary.
Primary hemochromatosis is usually caused by a specific genetic problem that causes too much iron to be absorbed. When people with this condition have too much iron in their diet, the extra iron is absorbed in the gastrointestinal tract and builds up in the body tissues, particularly the liver. The result is liver swelling. Primary hemochromatosis is the most common genetic disorder in the United States, affecting an estimated 1 of every 200 to 300 Americans.
Secondary or acquired hemochromatosis can be caused by diseases such as thalassemia or sideroblastic anemia, especially if the person has received a large number of blood transfusions. Occasionally, it may be seen with hemolytic anemia, chronic alcoholism, and other conditions.
Hemochromatosis affects more men than women. It is particularly common in Caucasians of western European descent. Symptoms are often seen in men between the ages of 30 and 50 and in women over 50, although some people may develop problems by age 20. You have a higher risk of hemochromatosis if someone else in your family has or had the condition.
Generalized darkening of skin color (often referred to as bronzing)
Lack of energy
Loss of body hair
Loss of sexual desire
Signs and tests
A physical examination shows liver and spleen swelling, and skin color changes.
Blood tests may help make the diagnosis. Tests may include:
Serum ferritin (high)
Serum iron (high)
Percentage of transferrin saturation (high)
Other tests may include:
Blood sugar (glucose) level
Echocardiogram to examine the heart's function
Electrocardiogram (ECG) to look at the electrical activity of the heart
Imaging tests such as CT scans, MRI, and ultrasound
Liver function tests
The condition may be confirmed and treated with a liver biopsy or phlebotomy, a procedure that removes blood to lower the amount of iron in the body.
Recently, genetic defects have been found in many families with a history of hemochromatosis. Blood tests can be used to look for these genetic changes and confirm the diagnosis of hemochromatosis, as well as determine who may be at high risk of developing the disease.
The goal of treatment is to remove excess iron from the body and treat any organ damage.
A procedure called phlebotomy is the best method for removing excess iron from the body. One-half liter of blood is removed from the body each week until the body iron level is normal. This may require many months or even years to accomplish. After that, less frequent phlebotomy is needed to maintain normal iron levels. How often you need this procedure depends on your symptoms and your levels of hemoglobin and serum ferritin, and how much iron you take in your diet.
Testosterone hormone therapy can help improve the loss of sexual desire and changes in secondary sexual characteristics. Diabetes, arthritis, liver failure, and heart failure should be treated as appropriate.
If you are diagnosed with hemochromatosis, you should follow a special diet to reduce how much iron is absorbed from your diet. The diet prohibits alcohol, especially for patients who have liver damage. You will also be told to avoid iron pills or vitamins containing iron, vitamin supplements, iron cookware, raw seafood (cooked is fine), or fortified processed foods such as 100% iron breakfast cereals.
Over time, liver scarring and damage can occur. Extra iron may also build up in other body tissues such as the thyroid, testicles, pancreas, pituitary gland, heart, or joints. If treatment begins before any of these organs have been affected, diseases such as liver disease, heart disease, arthritis, and diabetes can usually be prevented.
How well a person does depends on the amount of organ damage. Some organ damage can be reversed when hemochromatosis is detected early and treated aggressively with phlebotomy.
I'm aware of hemochromatosis, and I have already been tested for it. The genetic test came back negative. The doctor is still continuing to test me for it, now looking at more obscure mutations. I have also been tested for Hepatitis.
Here's is kind of an odd question though...I tend to smoke tobacco out of an iron metal piece. I have pretty much used this iron piece to smoke tobacco for the last few years of my life every day- a couple times per day.
The plant is put into the iron socket and is burned through it. The iron piece can get quite hot during this process. Is it possible that inhaling the tobacco smoke which is burned in the iron piece is affecting my liver?
Iron overload disease is not an area with which I am very familiar.
I have read that iron cookware is discouraged because iron can get into the food.
I have never read anything about iron overload due to inhalation of smoke through an iron pipe/device but I wouldn't rule out that possibility.
I would check this out with your doctor or research it.
I doubt that periodic pain medication, if taken at the prescribed doses, would cause an iron overload or any liver problem.
I should have started this post by stating that I am not a doctor or in the medical field in any capacity. Therefore my opinion isn't worth much. I'm just another patient.
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