Do you have hemochromatosis?

[terry61_99]

I found out I had it a number of years ago and since I have gotten it under control feel a lot better now. But I still have issues with getting hard. Do you or anyone you know have hemochromatosis? If so, what problems, if any, do you have from it? Thanks for any input you have!!!

 

[terry61_99]

I have to say I am surprised that no
one has replied that they have this, I have found out it is very common and that a lot of people have it but don't know it. I was one of them too, I had it most of my life until I changed doctors and he tested me for it! Thank God he did!!! He actually saved my life!!!

 

[Lostlover]

I have hemochromatosis! Sad, but I am actually happy to meet someone on JUB that has it too!

My family has it too but they're in denial! Big time. Even my older brother that is a medical doctor.

I have two copies of it and I am so glad my hematologist tested me for it and did the expensive genetic testing to boot (which took several weeks as well). I was completely asymptomatic despite my iron levels being around 800 (forgot the units). I got it down to near anemic levels (below 50) when I stopped getting plebotomies (spelling) done.

How many copies (or diseased alleles) do you have? What made your doctor test you for it? My primary care doctor tested me for every vitamin, mineral, and metal in my body because she couldn't read what the Canadian doctor my insurance did not cover wanted to test for.

I went through 6 months of bloodletting giving about a liter each week and getting tested each week afterwards to see how far my iron levels dropped. I had people ask me if I "shot up" and wonder about my "tracks," because I was poked so many times. I quickly got over my fear of needles.

I converted to vegetarianism because of this even though many vegetables are rich in iron. The biggest disappointment is seeing cereal and oatmeal makers putting in iron thus making breakfasts bland for me.

Despite being the most common genetic disorder in America, it seems that sufferers are few and far between. I know I have Swedish ancestry on both sides and this just seems to confirm this; my blonde hair was a good confirmation of this as well.

 

[terry61_99]

Thanks for posting!! I know there are tons of guys here on JUB that have it and don't know it!! I hope that just by me starting this thread that guys wll read this and at least think about having their doctor test them for it...it may just save their life!! My iron levels were so high I was actually setting off metal detectors!!! By the time I found out I had it my liver was so loaded with iron it was almost shuting down!! And I never knew anything was wrong with me!

 

[Lostlover]

What is your ethnicity Terry? My doctor told me people of Northern European ancestry get this because meat was scarce way back when; holding onto iron was advantageous back then when meat was the main source of iron in people's diets. So, someone in Ireland developed a mutation preventing him and his ancestors (us!) from metabolizing iron.

(You and I are related by this one person.)

Both of my parents are predominately Swedish ancestry.

 

[terry61_99]

What is your ethnicity Terry? My doctor told me people of Northern European ancestry get this because meat was scarce way back when; holding onto iron was advantageous back then when meat was the main source of iron in people's diets. So, someone in Ireland developed a mutation preventing him and his ancestors (us!) from metabolizing iron.

(You and I are related by this one person.)

Both of my parents are predominately Swedish ancestry.

Wow!! Thats very interesting!! I never knew that!!! I am Irish, Dutch, Scotish and native american (not sure which tribe)

So I guess we must be cousins!!!! Right? Awesome!!!

I love learning new things!! Thank you so much for the info!!!

 

[Lostlover]

Hemochromatosis: a hereditary disorder in which iron salts are deposited in the tissues, leading to liver damage, diabetes mellitus, and bronze discoloration of the skin.

Iron (or ferratin) not salts...

 

[KaraBulut]

Hemochromatosis: a hereditary disorder in which iron salts are deposited in the tissues, leading to liver damage, diabetes mellitus, and bronze discoloration of the skin.

Iron (or ferratin) not salts...

Well, technically you're both correct.

Think of it this way. Insoluble metals like iron are toxic in the human body. To manage iron, your body converts it to a soluble salt of iron. Once iron forms a soluble salt, ferritin (a protein) keeps the iron in this soluble form. Ferritin is like a zip lock bag that keeps the iron in this form and it acts as a transporter that moves the iron around in the cell.

When you combine ferritin and soluble iron salts, you get hemosiderin. Hemosiderin can be used to store iron in tissues like the liver and kidney.

Contrary to popular belief, men seldom need iron supplements. We get plenty of iron from our diets and our bodies have adapted quite well to recycle iron and reclaim/recycle it from red blood cells. Unless you have blood loss (or your menstruate), you don't lose a lot of iron and you don't need iron supplements.

Hemochromatosis is a mutation that results in increased absorption of iron in the intestine. Because there's more iron entering the body than the body needs, your body begins to form hemosiderin and store it in tissue. When it gets completely out of control, it begins to damage the tissue which is why liver enzymes can be elevated in people with hemochromatosis.

The mutation is rare worldwide but because it is more prevalent in northern europeans (particular the Irish), about 10-15% of people in the US, Australia and Ireland have the mutation. It's recessive, so it causes hemochromatosis and hemosiderosis in less than 1% of the population.

 

[terry61_99]

And I keep on learning!! Thanks!!

 

[Lostlover]

Well, technically you're both correct.

Think of it this way. Insoluble metals like iron are toxic in the human body. To manage iron, your body converts it to a soluble salt of iron. Once iron forms a soluble salt, ferritin (a protein) keeps the iron in this soluble form. Ferritin is like a zip lock bag that keeps the iron in this form and it acts as a transporter that moves the iron around in the cell.

When you combine ferritin and soluble iron salts, you get hemosiderin. Hemosiderin can be used to store iron in tissues like the liver and kidney.

Contrary to popular belief, men seldom need iron supplements. We get plenty of iron from our diets and our bodies have adapted quite well to recycle iron and reclaim/recycle it from red blood cells. Unless you have blood loss (or your menstruate), you don't lose a lot of iron and you don't need iron supplements.

Hemochromatosis is a mutation that results in increased absorption of iron in the intestine. Because there's more iron entering the body than the body needs, your body begins to form hemosiderin and store it in tissue. When it gets completely out of control, it begins to damage the tissue which is why liver enzymes can be elevated in people with hemochromatosis.

The mutation is rare worldwide but because it is more prevalent in northern europeans (particular the Irish), about 10-15% of people in the US, Australia and Ireland have the mutation. It's recessive, so it causes hemochromatosis and hemosiderosis in less than 1% of the population.

Thank you Kablut!

I have two copies of this condition. And being a southern boy at heart, I have to now stop eating organ meats and dirty rice . This was a traumatic experience for me.

My twin brother refuses to get tested. My other two brothers (including the MD) are like "I'm healthy" or "I just donated blood and they tested me for it." The Red Cross doesn't test for ferritin. He was having none of it. My mom is warming up to it. We know she has it since I have two copies. She's doing it more so to see if she has excessive iron levels, because she always complains of fatigue.

I kid you not. My Canadian doctor asked me how I can be anemic and have iron overload/hemochromatosis. My brother, the MD, told me that the Canadian doctor is a dumb ass after he met him one time I was hospitalized; this just confirmed it. Back to the story: the doctor forgot that there's B12 anemia, which I had, in addition to iron overload. He was dumbfounded that I could be labelled "anemic" on my charts.

Terry and Kablut: I'm not sure if this is standard protocol, but I was warned against taking Vitamin C supplements and drinking orange juice. Vitamin C helps with iron absorption. A bland diet became even more bland when my hematologist told me this.

 

[terry61_99]

I was also warned not to take vitamin C and to not drink orange juice and other juices that contain a high level of vitamin C. Because my liver was so loaded with iron I was told not to drink alcohol either which at the time i didn't mind since I am not a big drinker. I now have a drink once in a great while when I am with my friends and family. I was also told to not go barefoot on a beach as I can absorb bacteria thru my skin which could be dangerous to me.

 

[KaraBulut]

My twin brother refuses to get tested. My other two brothers (including the MD) are like "I'm healthy" or "I just donated blood and they tested me for it." The Red Cross doesn't test for ferritin. He was having none of it.

If he's your identical twin, he has the condition.

As the disease progresses, the hemosiderin storage damages the liver. This causes abnormalities in blood tests for liver enzymes. When you donate blood, they do test for iron levels (looking for anemia) and for liver enzymes which is why your brother is confused.

One of the locations where iron can be stored is the heart muscle. This causes damage to the heart that can be fatal. Your brothers are being foolish.

Terry and Kablut: I'm not sure if this is standard protocol, but I was warned against taking Vitamin C supplements and drinking orange juice. Vitamin C helps with iron absorption. A bland diet became even more bland when my hematologist told me this.

Generally, they recommend that you not consume acidic liquids with means. In an acidic environment, iron becomes easier for your body to absorb. The chemical name for vitamin C is ascorbic acid and vitamin C is known to change iron into the more rapidly absorbable form.

 

[terry61_99]

KaraBulut,
Do you have hemochromatosis? If not, how have you learned so much about it?

 

[KaraBulut]

KaraBulut,
Do you have hemochromatosis? If not, how have you learned so much about it?

I'm not a carrier. I know about many of these conditions because I teach pathophysiology periodically.

 

[terry61_99]

I'm not a carrier. I know about many of these conditions because I teach pathophysiology periodically.

Ahhh! Now I understand how you know so much about it!!! Thank you so much for teaching me more about it!! Right now I seem to have it under control and I feel better than I have in years... my only problem with it now is it has caused me erection problems.

 

[Lostlover]

Generally, they recommend that you not consume acidic liquids with means. In an acidic environment, iron becomes easier for your body to absorb. The chemical name for vitamin C is ascorbic acid and vitamin C is known to change iron into the more rapidly absorbable form.

That's what is annoying to me: abstaining from nutrients -- not foods -- that are found in almost every item especially in trace amounts. I was literally told to stay away from meats, green vegetables (laughable to even suggest this), Vitamin C, alcohol (never appealed to me anyways) and foods fortified in iron.

What the doctor left out was seafood. My brother had to tell me to not eat seafood.

You know how they say "A little bit of information is a bad thing"? Well, my younger brother takes it to a whole new level. He just took genetics in high school and learned the Punnet Square too well. He said, "You're homozygous recessive. This means we [my three brothers] are carriers or don't have the condition."

 

[KaraBulut]

That's what is annoying to me: abstaining from nutrients -- not foods -- that are found in almost every item especially in trace amounts.

Someone could make their fortune coming out with a line of low-iron foods. Take a look at the "low fat" and "gluten free" market and you'll see that there's a market for foods with dietary restrictions.

You know how they say "A little bit of information is a bad thing"? Well, my younger brother takes it to a whole new level. He just took genetics in high school and learned the Punnet Square too well. He said, "You're homozygous recessive. This means we [my three brothers] are carriers or don't have the condition."

Denial takes a lot of different forms.