Hemochromatosis
Get the facts on Hemochromatosis treatment, diagnosis, staging, causes, types, symptoms. Information and current news about clinical trials and trial-related data, Hemochromatosis prevention, screening, research, statistics and other Hemochromatosis related topics. We answer all your qestions about Hemochromatosis.
Question: What is the pathological physiology of hemochromatosis? how does the body change when you have hemochromatosis? and What are the symptoms of this disease? Is this disease related to diabetes?
Answer: I am the carrier of the gene but I am not sick from it (yet). I will need to get tested yearly. I did some research and here are my findings.
Hereditary Hemochromatosis is iron overload. The iron in your diet is absorbed too much and first goes into your liver, then your heart and other organs, even your fatty tissues. It is detected through DNA bloodwork only. Since that test is not part of the routine tests, it can go undetected.
The treatment is simply to give blood. If not, you might develop liver cirrhosis, even early heart condition.
If your doctor orders an Hepatic Panel (complete bloodwork for liver - complementary to the DNA test) he will find out about your ferritin levels (amount of iron in the blood). If it is elevated, he will want to do a liver biopsy (take tissue out of your liver) to measure the amount of iron and check if you have cirrhosis. DEMAND sedation (at least a little bit) before. Some doctors do it without.
There is a scan that can measure the iron in your liver, it is painless. www.ferriscan.com
I strongly recommend that you visit that Yahoo Group for Hereditary Hemochromatosis for more detailed information.
http://health.groups.yahoo.com/group/FHHF/
Also those web sites:
http://www.ironoverload.org/facts.html
http://www.americanhs.org/Irish%20in%20the%20blood.htm
http://www.haemochromatosis-ir.com/
http://www.upmc.com/HealthManagement/ManagingYourHealth/HealthReference/Diseases/?chunkiid=11806
http://www.emedicine.com/RADIO/topic323.htm
Question: How do you test for Hemochromatosis? Is there a blood test you can take to test for hemochromatosis?
Answer: The above answer is partially correct. The iron studies help but the real answer is in the genetic testing. Insist that you get the genetic testing. It is the most confirmatory test there is. Hope this helped
Question: Do you know anyone that died from un diagnosed hemochromatosis? Do you know anyone that died from un diagnosed hemochromatosis?
For the nurse with the stupid answer, its called an autopsy; a post-morterm examination of the body to determine cause of death.
Answer: if it was undiagnosed, then no one would know what killed them, now would they.
Question: Is phlebotomy a recommended or affective treatment for hemochromatosis after symptoms have been allayed ? I was suffering goutlike symptoms and tested positive for hemochromatosis and phlebotomy was recommended .
After losing 85lbs my symptoms left but I'm wondering if the threat of organ deterioration is still a problem .
Answer: You will always need to be monitored by a Dr. If the iron levels go up again you can have organ damage.
Question: Does anyone know what hemochromatosis is and what does it do to your body? Hemochromatosis attacks some of the major organs of the body, if you do not keep it under control. Now what do you have to do to achieve that and what are the organs? And what is it?
Answer: Hemochromatosis is a genetic disease where you can't metabolize iorn properly. It is much more common in whites. Your body absorbs iorn even when you have enough, and you start to get overloaded in iorn. It can also be called "bronze diabetes" because the iorn can accumulate in your skin, causing a bronze appearance, and the iorn can accumulate in your pancreas, causing it to dysfunction, resulting in diabetes. It can also cause liver cirrhosis and heart failure.
If you have a relative that has been diagnosed with this disease, you should be screened. catching it early means that you just go donate blood every so often to deplete your iorn stores. (Yes, the medical profession still uses bloodletting in some cases!) You can prevent most of the problems this way. Also avoid taking a multivitamin with iorn in it.
Question: My friend has Hemochromatosis. He has never had therapeutic phlebotomy which I understand to be the ? treatment method for this problem. Are there certain types of hemochromatosis in which therapeutic phelbotomy would not be done? What reason would they not treat him with therapeutic Phelebotomy? He said the only thing he takes for this condition is Coumadin.
Answer: One can be a carrier of the gene and not have iron overload, in which case you don't require phlebotomy. Coumadin is not a treatment for this condition.
Question: How are Hemochromatosis and walking on beaches connected? Hemochromatosis is a disease of iron found in the blood and i read somewhere some reference to contracting higher levels of iron from merely walking on beaches.
Answer: I can't see how one can 'absorb' iron merely from walking on beaches, so "No", I can't see the connection here. The only vague connection is that people with hemochromatosis might appear tanned in appearance, similar to if that person has been exposed to the sun (walking on beaches!).
Question: How would i make a punnet square for hemochromatosis? i was just wondering how i would make it and is it recessive or not?
Thanks that was very helpful :)
Answer: draw you punnet square and label them as
H-Hemochromatosis (dominante) and h for the recessive.
this part is really your choice to make it recessive or dominate for the offspring. HH means dominate Hh also means dominant but h or hh is recessive.hope this kinda helped. i needed to draw it but w.e
Question: If you are diagnosed with hemochromatosis does your primary care physican refer you to a specialist? Any additional details would be great if you have personal experience. I have read a lot on the web but am looking for people with actual experience with condition.
Answer: maybe. Isn't this just a abundance of iron? They may suggest a change in the diet depending.
Question: I have hereditary hemochromatosis and am trying to get pregnant. What's a good prenatal vitamin without iron? I can't take an iron supplement and have to really watch how much vitamin C I take (because C helps the body absorb iron). Has anyone been in this position? My hematologist said to take nothing and my OB said to take a folic acid supplement alone. But I want to make sure I get enough of all the other vitamins usually found in a prenatal.
Answer: Sorry, every prenatal vitamin contains large amounts of iron and vitamin C. Asyou probably already know most women are the opposite to you and have a tendency toward low iron levels.
I'd say it is best to follow your doctors advice and take a folic acid supplement on its own.
Don't worry too much about supplements as they are only of benefit if your dietary intake is inadequate. Make sure you eat really, really well (get lots of greens, protein and calicium) and you should be fine.
Most of our mothers never took prenatal vitamins. I think it's safe to say that most of us turned out fine.
Good luck.
Question: Hemochromatosis? I just found out that I have Hemochromatosis. I am 36 years old. I have a follow up appointment with my Dr. in 2 weeks. I was just wondering if anyone knows if this is life threatening? I mean can I be fine with a controlled diet?
Answer: That's because hereditary hemochromatosis causes your body to absorb too much iron from the food you eat. The excess is stored in your organs, especially your liver, heart and pancreas. Sometimes the stored iron damages these organs, leading to life-threatening conditions such as cancer, heart problems and liver disease.
Signs and symptoms of hereditary hemochromatosis usually appear in midlife, although they may occur earlier. The most common complaint is joint pain, but hereditary hemochromatosis can also cause a number of other symptoms, including fatigue, abdominal pain and impotence. Though not always easy to diagnose, hereditary hemochromatosis can be effectively treated by removing blood from your body to lower the level of iron.
You can't prevent hemochromatosis, but if you have the disease, the following measures may help:
Avoid iron supplements and multivitamins containing iron. These can increase your iron levels even more. It's also best to avoid a diet high in iron-rich foods, such as red meat, dried peas and beans, and iron-enriched breads, cereals and pastas.
Avoid taking vitamin C supplements, especially with food. Vitamin C increases absorption of iron. Try to drink vitamin C-rich juices, such as orange juice, between meals. Whole fruits and vegetables that contain vitamin C are fine.
Avoid alcohol. Alcohol and iron combine to cause more liver damage.
Avoid eating raw shellfish. People with hemochromatosis are susceptible to infections, especially those caused by certain bacteria in raw shellfish.
Question: Are Carriers of hemochromatosis at risk of the illness or does it skip to the next generation? My nephew is a carrier and he has been complaining of most of the symtoms that go with the disease (his father had it)
Answer: There is no straight answer to that because there is more than gene involved.
Of the two major types of hemochomatosis, you would have to have one bad gene from each parent to manifest symptoms.
It has been suggested that the offspring of two carriers, one of each type, would have symptoms.
There are other rare types.
There is a really good explanation of the genetics of hemochromatosis on Wikipedia. Check the link.
Question: Can Hemochromatosis be acquired through your diet or artificially induced and not genetically? Please answer my question ASAP..
I also wanna know if hemochromatosis is the same with iron overload..
And if the answer to my question is no, is it yes for iron overload (generally) or other types of it?..what types?
if you have a source, please attach it to your answer..
Answer: Yes, secondary hemochromatosis can be caused by alcoholism, anemia and other disorders, as discussed in:
http://digestive.niddk.nih.gov/ddiseases…
Question: How many vials of blood equal 500ml? I have a disease called hemochromatosis and need to give 500 ml/week? I need to give 500 ml per week.. i'm wondering how many of those little vials I have to give. Especially because we'll be drawing it at home (family healthcare professionals) but unsure how many of those equal 500ml, thanks!!!
Answer: They won't be collecting your blood into lots of little tubes. They will collect it into a bag (similar to the ones you donate blood into). They hold upto 500 mls.
Question: I just found out I am a carrier of hemochromatosis, what does that mean exactly? I think it means if I ever have kids, they are likely to have it.
I am just double checking
Answer: What Causes Hereditary Hemochromatosis?
Hereditary hemochromatosis is a genetic disorder. It is passed from a parent to a child (inherited). Most people who have hemochromatosis inherit defective genes from both parents. In rare cases, a person can have hemochromatosis by inheriting defective genes from just one parent.
A person who has inherited only one defective gene will most likely be a carrier of hemochromatosis and will not have the disease. A carrier can pass the defective gene on to his or her children.
If only one parent is a carrier of a defective gene, the child will not have hemochromatosis; however, there is a 50% chance that the child will be a carrier.
If both parents are carriers, there is only a 25% chance that the child will have hemochromatosis, but a 50% chance that the child will be a carrier.
Question: what food do i avoid when i have been diagnosed with Hemochromatosis i.e too much iron in the body ? i have been given a diet sheet but it is very vauge!
Answer: red meat mainly.
try not to drink orange juice with your cereal etc in the morning...lower overall vit c intake too
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