My skin became extremely fragile. If I hit my hand or shin on anything the skin would tear. Then about an hour later you could see little dots of blood forming and it would end up being a really thick scab. After the scab fell off it would leave a scar. And these scars stay very pale in color. One time I put a bandaid over one of my blisters and when I pulled the bandaid it literally pulled the top layer of my skin off.
Yes your Ferritin is way too high. I think mine was up around the high 300's. I can't remember. Your Dr will probably want to do a 24 Hour Urine Catch to see what exactly the porphyrin #'s are. This will tell you exactly what is going on.
I never had blisters on my feet only on the back of my hands. And I have never had the leg rash either. My only advice would be to keep your skin as moist as possible and stay out of the sun. Once I was outside I could literally feeling tingling in my hands and I knew what was to come. So now I always wear gloves while I am outside working in the yard. You really have to be proactive with this or you will pay for it.
And yes stay away from alcohol. I found this out the hard way.
The test he ordered was a DNA mutation test. It came back saying: "Compound Heterozygous for the C282Y and H63D mutations" and it's strange my other results came out mixed.
My Iron total was 154, normal is 40-175. My iron binding capacity also came back normal. My saturation was only 2% above normal at 52%. But my Ferritin level was 656, normal being 10-154.
Also, Jules, i dont take iron, i was told when i was diagnosed in 2001 to stay away from iron, tylenol, and alcohol. And thats about all i was told lol. But i do get blisters on me feet for no reason and my skin on my legs break out in somthing like a rash, it doesnt itch, but hurts like hell. Could that be why?
Sorry to be bugging all of you about this but my appointment isn't until the 28th and it's driving me crazy lol. Seems I get better info here anyway. :)
"I do now that I'm not supposed to take Iron supplements due to my Hep C. Could this be why he ordered the test?"
If you told your Dr you were taking iron supplements while having Hep C I am sure that is why he checked your levels. Most people who have iron overload do not even know they have it.
I am very sorry to hear about your diagnosis of Hemochromatosis. Hopefully it was caught in its early stage.
The Hemochromatosis test (Hemochromatosis gene (HFE) ) was order because you had a high ferritin level and maybe a high iron level. These levels can be an indication of hemochromatosis. HFE testing locates and identifies mutations in the HFE genes.
The diagnosis of hemochromatosis in addition to hepatitis C means that you have two separate illnesses that can damage your liver. It is important to get treatment for both.
The information obtained from an HFE test can have a big impact on your life. Genetic counselors are trained to help you understand your chance for having a child with an inherited (genetic) disease. A genetic counselor can help you make well-informed decisions.
HFE testing is not able to predict whether you will have hemochromatosis. Although the test locates the most common HFE mutations, there may be other HFE mutations that the test does not find. You may have HFE mutations and not have the diseases or you may have symptoms of the disease but gene testing is does not find any mutations.
HFE gene testing may identify the cause of high iron levels and eliminate the need for other tests, such as a liver biopsy.
Iron and ferritin levels may also be checked at the same time as a hemochromatosis gene test.
To learn more about Genetic Condition, hemochromatosis please go to the following link...
Primary hemochromatosis is a genetic disorder passed down through families. It occurs at birth. People with this condition absorb too much iron through their digestive tract. Iron builds up in the body, especially the liver. You are more likely to get this disease if someone else in your family has or had the condition.
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 take many months or even years to do. After that, the procedure may be done less often 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. 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 digestive tract. Your doctor or nurse will recommend:
Do not alcohol, especially if you have liver damage
Do not take iron pills or vitamins containing iron
Do not use iron cookware
Do not eat raw seafood (cooked is fine)
Do not eat foods fortified with iron, such as 100% iron breakfast cereals
Untreated, iron overload can lead to liver damage.
Extra iron may also build up in other areas of the body, including the thyroid gland, testicles, pancreas, pituitary gland, heart, or joints. Early treatment can help prevent complications such as liver disease, heart disease, arthritis or diabetes.
How well you do depends on the amount of organ damage. Some organ damage can be reversed when hemochromatosis is detected early and treated aggressively with phlebotomy.
The disease may lead to the development of:
Increased risk for certain bacterial infections
Skin coloring changes
Hi Bashly. I have PCT and Hemochromatosis. I had no idea I even had this until hindsight was waving red flags about 2 yrs. ago. In the summer I was doing yardwork and my hands completely broke out into watery painful blisters. Some of them were literally the size of a quarter on my hand. And once the blisters broke the skin would literally peel off the back of my hands. Extremely painful. Went to the dermatologist and he "thought" I probably had poison oak. He put me on steroids and gave me a topical cream and that took care of it.
Next summer same thing happened. Went back to dermatologist and he prescribed the same meds. Two weeks later they were gone.
So two years later went in to my GP to have my cholesteral checked. He made the comment "what happened to your hands"? My hands literally look like they have been burned from the scarring. Well of course my liver enzymes were elevated, also my ferritin, My Ferritin was actually 3X it's normal level.
So GP sent me to Hepa Dr and to make a long story short I had to take care of the hemocromatosis before I could even start tx. Evidently this has a huge effect on your tx outcome. So I had to do plebotomies until my % Saturation of Iron was down to a normal level. So I need weekly plebotomies for 3 months on a weekly basis. Each week they would take a pint of blood then check my blood levels. (If you read my Journals it pretty much has a play by play of what happened and also some screw ups but what are you gonna do)!
So I would get the hemocromatosis under control as soon as you can. I was adopted so we did not do the genetic testing because there was no way to compare it to. Unfortunately you will have this for the rest of your life and it will have to be taken care of through phlebotomies. My Hepa Dr told me that you really couldn't keep this under control through diet. Your body is manufacturing the iron. I always wondered by I had a great tan at Christmas and I live in the NE. You might want to check out this link also
If you need anything don't hesitate to ask. This is doable!! :)
You did not say which tests your doctor ordered (other than the ferritin test). If you have a history of hemochromatosis, he may have ordered the gene tests to determine if you have the hereditary type of hemochromatosis. He would also want to check ferretin levels and other blood tests related to iron storage and use. Not knowing more details about your health and history, it is difficult to speculate on how this may impact your treatment.
"A ferritin blood test checks the amount of ferritin in the blood. Ferritin is a protein in the body that binds to iron; most of the iron stored in the body is bound to ferritin. Ferritin is found in the liver camera, spleen camera, skeletal muscles, and bone marrow. Only a small amount of ferritin is found in the blood. The amount of ferritin in the blood shows how much iron is stored in your body."
"A ferritin blood test is done to:
Find the cause of anemia, especially iron deficiency anemia.
See if inflammation is present.
See if too much iron (hemochromatosis) is present.
Check to see if iron treatment to raise or lower the iron level is working."
I don't know if you have Porphyria cutanea tarda, but here is a blurb on the skin manifestations of chronic Hep C. As you read on, you will see that they mention the HFE gene mutation, the gene found to be responsible in most cases of hereditary hemochromatosis.
"Porphyria cutanea tarda (PCT) is the most common form of the porphyrias, a group of diseases characterized by defects in one or more of the enzymes involved in the production of heme. This results in the overproduction of porphyrins or its precursors. ..... Patients with PCT who are of northern European origin were also found to have increased prevalence of HFE gene mutation, the gene found to be responsible in most cases of hereditary hemochromatosis. In addition to iron, heavy alcohol use and use of estrogens are also major risk factors for the development of PCT. The treatment of PCT involves dietary restriction of foods rich in iron, and avoidance of alcohol and estrogen use. Phlebotomy to remove iron is the first treatment for most patients with PCT. In patients with PCT, we recommend iron depletion by phlebotomy before initiating antiviral therapy with interferon and ribavirin."
We do have at least one member with PCT and Hemochromatosis. Hopefully she will respond as well.