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Teresa in MO

Hemochromotosis - iron overload

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Is anyone familiar with hemochromotosis?  It is a genetic disorder where you have too much iron in your blood.  My dad had it.  We were not close at all and I only became aware recently that it was genetic.  Last week at my yearly physical I told my doctor and she ran iron tests with my blood work.  They are slightly elevated and she is having me see a hematologist.  In reading online about what you should eat and not eat, I am just overwhelmed.  I am considered pre-diabetic and have been able to keep my A1c down to 5.5 by eating a low carb, high protein diet and excercise.  My cholesterol levels were up last year and I adjusted my diet again.  I have brought my levels down to almost normal. When I try and add in eating foods that are low in iron and vitamin c, it doesn't leave much.  Alot of the vegetables that I eat are on the no-no list.  I am frustrated!  I guess the treatment for this is regular blood draws.  What fun!  If anyone can give me any first hand experience with this, it would be greatly appreciated.

 

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I hope someone has more experience. Our 19yo's iron levels were crazy high. She had blood work done because she was very fatigued her senior year in high school, but there were family crises and she had a busy schedule, so we didn't know if there was a medical component or just life. Anyway, she has the "better" genetic abnormality where people often don't iron load. Her levels went back to the normal range when she stopped taking a multivitamin with iron. Her liver numbers were bad too because of working hard to clean all that extra iron out of her blood. The doctor had her take some supplements for liver support, and all of those numbers, except one, came down too. It has been over a year since she had high levels of iron.

I understand what you mean about the eating parameters. It freaked me out a bit too when I was looking after I saw her blood work. (And she was freaked out at the prospect of regular blood draws!) I hope your issue is easily resolved. Wishing you the best!

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43 minutes ago, Teresa in MO said:

Is anyone familiar with hemochromotosis?  It is a genetic disorder where you have too much iron in your blood.  My dad had it.  We were not close at all and I only became aware recently that it was genetic.  Last week at my yearly physical I told my doctor and she ran iron tests with my blood work.  They are slightly elevated and she is having me see a hematologist.  In reading online about what you should eat and not eat, I am just overwhelmed.  I am considered pre-diabetic and have been able to keep my A1c down to 5.5 by eating a low carb, high protein diet and excercise.  My cholesterol levels were up last year and I adjusted my diet again.  I have brought my levels down to almost normal. When I try and add in eating foods that are low in iron and vitamin c, it doesn't leave much.  Alot of the vegetables that I eat are on the no-no list.  I am frustrated!  I guess the treatment for this is regular blood draws.  What fun!  If anyone can give me any first hand experience with this, it would be greatly appreciated.

 

My dad has it. He just gives blood regularly, no issues. 

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I have met 2 people with this. one of them worked with one of my sons. that one had a strict low iron diet not sure about blood-letting, but the other one had to have blood-letting every few weeks.

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If that's an issue I would start by donating blood rather than changing a diet that is working for you.  Generally it isn't an issue for women until after menopause.

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38 minutes ago, Terabith said:

I used to work with someone who had this, and he just donated blood religiously.  

 

This is my husband’s tactic. He does not have the disorder, but his levels run to the high end of normal. Regularly donating keeps it in check. 

Are you eligible to be a blood donor?

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My dad had it and so does my FIL.  My dad donated blood regularly until his cancer diagnosis.  My FIL choose to think about it for awhile and then had to have a much more invasive procedures ( I don’t recommend his version). 

Edited by itsheresomewhere

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It runs in my family.  Because women of childbearing age have a menstrual cycle they aren't diagnosed as quickly or have as many medical problems.  The right kind of genetic test can rule you out or in.  Unfortunately, a lot of doctors aren't aware of hemochromatosis and it can register as anemic on standard tests.  It is very simple to treat.  Give blood regularly or have dialysis.  Monitoring your diet and getting your iron levels tested every so often while watching for symptoms helps.  Things that are good for others like cooking on a cast iron skillet would be a bad idea for someone with hemochromatosis.  

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My husband is dealing with this now.   He has been referred to hematology and has his appointment soon.  His levels were elevated last year,  then normalized, and are now elevated again.  They were brought down with diet changes, however, went back up for no discernible reason.    Not all of his levels are elevated either, which is very puzzling.  I am hoping for some answers and pray this is just an irritation to deal with and not something truly horrible going on.

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Primary (hereditary) hemochromatosis (HH) is genetic and you should be tested to find out for sure if you have that. (Hemochromatosis is not always genetic. Secondary hemochromatosis is caused by other health problems.) HH is a condition where you absorb most of the iron in food. The excess iron is then stored in your joints and organs where they do damage. People who don’t have HH, only absorb about 1/3 of the iron from their diets. It’s believed to have developed in Ireland thousands of years ago in response to low iron diets. HH is more common in the Irish and Northern European but has been found in people elsewhere.

The usual treatment is blood letting and more frequent iron panels to see if it’s in check. If iron panel numbers get into a good range, then no problems but you’ll need to keep checking your iron.

Depending on your diet, you might be able to eat the same foods but combine them so that the iron is more likely to be bound and not absorbed in your digestive tract. Read about phytates, oxalates and fiber. Limit eating vitamin C rich foods with high iron foods. There are also websites and forums for people with hemochromatosis that might be helpful.

A lot of people have hemochromatosis and don’t even know it. Knowing you have it and doing something about should prevent problems.

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This runs in my dh's family.  My understanding is that women don't usually begin having problems with this until menopause (when their body is no longer naturally ridding itself of excess iron).  The family members who actually have it are able to keep it regulated by regular blood donations.  To my knowledge, they haven't had to change their diet.

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