Discussions By Condition: Blood conditions

hemochromatosis,b12,vit d and anemia

Posted In: Blood conditions 15 Replies
  • Posted By: porcelain
  • January 21, 2009
  • 07:22 AM

right so i have been diagnosed a few weeks ago with b 12 deficiency, vitamin d deficiency and anemia.

this morning i was diagnosed with hemochromatosis.

i am confused, how can i have anemia(low in iron) and have hemochromatosis (iron overload) the two are exact opposites, you can only have one or the other, unless there is someway you can have both.

anyone else here got hemochromatosis, b12, or vitamin d deficiency or anemia.

my hemochromatosis is genetic one of my parents is a carrier. i am a 19 year old female and most people dont get diagnosed with this blood disease until much later in life in the 40's for males and 60's for females. of course it can occur younger like it has in me.

i couldnt understand to start with how my iron levels could be so high when i am a vegetarian and have never taken any supplements for it (which i am now glad i didnt do because it would have caused damage), but i guess now knowing that hemochromatosis is genetic it explains that part.

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15 Replies:

  • Porcelin, since you have a B12 deficiency you probably have what's called pernicious anemia and not iron deficiency anemia. There are several types of anemia and many of them have nothing to do with iron levels (folic acid deficiency and problems with your bone marrow are other causes). Do a search on this site for pernicious anemia and it will give you a lot of details on your condition. Are you a vegan? That may also explain your B12 deficiency.
    iggypoptart 1 Replies
    • February 23, 2009
    • 09:05 PM
    • 0
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  • Agreed, It is very possible that your body cannot use the B complex properly, and that has nothing to do with Hemochromatosis. I too have HH, so if you have any questions please feel free to email me- ill_iterate84@yahoo.com.
    Strype 4 Replies Flag this Response
  • Porcelin, since you have a B12 deficiency you probably have what's called pernicious anemia and not iron deficiency anemia. There are several types of anemia and many of them have nothing to do with iron levels (folic acid deficiency and problems with your bone marrow are other causes). Do a search on this site for pernicious anemia and it will give you a lot of details on your condition. Are you a vegan? That may also explain your B12 deficiency. i am a strict vegetarian. thanks it makes a bit more sense now.
    porcelain 36 Replies Flag this Response
  • porcelain,i've just read your post. i was diagnosed with haemochromotosis last year and have been giving blood for a year now, twice a week. my iron level is still high, but i've now got a problem with my haemoglobin level, some kind of anaemia.what happened in your situation? i am going to see a specialist about it in a few days, but i thought you might be able to tell me what happened in your case.thanks a lot.
    jibbatime 1 Replies Flag this Response
  • How common is the link between B12 and Hemochromatosis???I live in the south of France and have been diagnosed with HH last year and had several phlebotomies and since the 2nd one I started having severe pain in my legs and hips. For one year I have been complaining about the pain and a month ago they have realised that my vit. B12 was very very low and this is why I have the pains and all the other B12 deficiency symptoms. But they don't seem to find why I have this deficiency. Is there anyone other there with similar problems? There are not many cases of Hemochromatosis down here, so doctors seem to be guessing... Hoping for some feedback;-)
    Anonymous 42789 Replies
    • September 14, 2009
    • 01:02 PM
    • 0
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  • It is actually possible to have anemia AND hemochromatosis at the same time...I actually do. Here's why:People who are anemic have low levels of hemoglobin. Basically, your body gets enough iron in general and cannot process it (that's the hemochromatosis part) but instead of going to hemoglobin, this iron builds up in the rest of your body causing symptoms like fatigue, arthritis, etc. At the same time, hemoglobin levels are low because no iron is going to that part of your blood. This is called iron-loading anemia. You have too much iron, and you have it in all the wrong places. People with iron-loading anemia are usually deficient in vitamin b6, b12, and folic acid as well, and the anemia can be controlled by taking these vitamins. As a non-pregnant female, I am considered anemic if I have hemoglobin levels below 12. If my levels are below 10, it may not be safe to have phlebotomies. If this is the case, one treatment option for the Hemochormatosis is an iron chelator. It is a molecule that prevents rusting in machinery, and will similarly prevent iron buildup in body organs when taken orally.Weird huh?For more info about this, check out the website below:http://www.ironoverload.org/facts.html
    Anonymous 42789 Replies
    • November 15, 2010
    • 08:27 PM
    • 0
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  • Also, I'm a 19 year old female with anemia and HH! I am not a strict vegetarian but I rarely eat meat.Soooo if you do figure out what the deal is, please post and let me know! (I will do the same.)-Jordan
    Anonymous 42789 Replies
    • November 15, 2010
    • 08:30 PM
    • 0
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  • If your iron level is high and your hemoglobin is low, you may have G6PD deficiency where the blood cells burst, dispensing the iron throughout the blood AND killing the hemoglobin. It's called glucose 6 phosphate dehydrogenase deficiency. Not as rare as doctors think, about ten percent of the population has it, many don't realize it. The most severe kind is mediterranean version (I have that).porcelain,i've just read your post. i was diagnosed with haemochromotosis last year and have been giving blood for a year now, twice a week. my iron level is still high, but i've now got a problem with my haemoglobin level, some kind of anaemia.what happened in your situation? i am going to see a specialist about it in a few days, but i thought you might be able to tell me what happened in your case.thanks a lot.
    Anonymous 42789 Replies
    • November 21, 2010
    • 00:39 AM
    • 0
    Flag this Response
  • I'm a little confused. I have always been told I was iron deficient, but my mother has been diagnosed with hemochromatosis. I have not been tested yet, but I am also a vegetarian (I consume dairy), take a multi-vitamin and extra vitamin C. My immune system has improved since taking supplements, but I am still fatigued even though I have additional B vitamins from my daily energy drink. Is it possible that the B vitamins are not being absorbed? I have had a problem with fatigue since I was a teenager, from which I attributed to iron deficiency, and it has only gotton worse as I age. (I had episodes of nosebleeds and fainting when I was a teen.) I never donated blood because I was always encouraged to avoid anything that would drain my iron, but now (at age 40) I'm starting to wonder if I have been misdiagnosed. Thanks for any info....J.C.
    Anonymous 42789 Replies Flag this Response
  • Red meat and fish are not the only sources of iron. There are plenty of vegan friendly foods that have a much higher iron content by volume than the meats. Here's a site with just a few examples.http://www.weightlossforall.com/iron-rich-food.htm
    Anonymous 42789 Replies Flag this Response
  • right so i have been diagnosed a few weeks ago with b 12 deficiency, vitamin d deficiency and anemia. this morning i was diagnosed with hemochromatosis. i am confused, how can i have anemia(low in iron) and have hemochromatosis (iron overload) the two are exact opposites, you can only have one or the other, unless there is someway you can have both. anyone else here got hemochromatosis, b12, or vitamin d deficiency or anemia. my hemochromatosis is genetic one of my parents is a carrier. i am a 19 year old female and most people dont get diagnosed with this blood disease until much later in life in the 40's for males and 60's for females. of course it can occur younger like it has in me. i couldnt understand to start with how my iron levels could be so high when i am a vegetarian and have never taken any supplements for it (which i am now glad i didnt do because it would have caused damage), but i guess now knowing that hemochromatosis is genetic it explains that part.Several years ago a man was diagnosed with anemia but not with hemochromatosis, he died at 28 due to iron supplement pills. They seem to be two entirely different things due t oone being primarily blood related and the other being in the organs. I'm a 17 yr old male, I was unofficially diagnosed as a C282Y Homozygote (I have two dominant genes) in Feb. 2010. My blood levels were normal to low, but my % saturation was 64%, they won't treat anyone unless they are 50%. Be careful, it sounds like you have one of the rougher diagnosis.
    Anonymous 42789 Replies Flag this Response
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  • Several years ago a man was diagnosed with anemia but not with hemochromatosis, he died at 28 due to iron supplement pills. They seem to be two entirely different things due t oone being primarily blood related and the other being in the organs. I'm a 17 yr old male, I was unofficially diagnosed as a C282Y Homozygote (I have two dominant genes) in Feb. 2010. My blood levels were normal to low, but my % saturation was 64%, they won't treat anyone unless they are 50%. Be careful, it sounds like you have one of the rougher diagnosis. Hi,I'm new to the board.Ihope Im doing this right:rolleyes:. I read what you said. and yes it does seem to be two entirly differant things. I was diagnosed with HH 12 yrs ago. Last week I learned I have anemia,and my number is now 3.0. .Ive been really sic and tired. how are you doing??
    Praying4cureHH Hope 2 Replies Flag this Response
  • It is actually possible to have anemia AND hemochromatosis at the same time...I actually do. Here's why: People who are anemic have low levels of hemoglobin. Basically, your body gets enough iron in general and cannot process it (that's the hemochromatosis part) but instead of going to hemoglobin, this iron builds up in the rest of your body causing symptoms like fatigue, arthritis, etc. At the same time, hemoglobin levels are low because no iron is going to that part of your blood. This is called iron-loading anemia. You have too much iron, and you have it in all the wrong places. People with iron-loading anemia are usually deficient in vitamin b6, b12, and folic acid as well, and the anemia can be controlled by taking these vitamins. As a non-pregnant female, I am considered anemic if I have hemoglobin levels below 12. If my levels are below 10, it may not be safe to have phlebotomies. If this is the case, one treatment option for the Hemochormatosis is an iron chelator. It is a molecule that prevents rusting in machinery, and will similarly prevent iron buildup in body organs when taken orally. Weird huh? For more info about this, check out the website below: http://www.ironoverload.org/facts.html thankyou so kindly.I just learned I have Anemia last wenesday and I was born with HH but they didnt find it till i was in my 40's.
    Praying4cureHH Hope 2 Replies Flag this Response
  • For those struggling with B12 deficiency, not sure if this helps or if anyone is interested but I recently heard about a new oral prescription alternative to the injections called Eligen B12. I recently read that it works even if you don't have intrinsic factor (so even if you don't have normal gut absorption), which would mean no more shots. Apparently it came out a month or two ago. Has anyone tried it??
    Anonymous 1 Replies Flag this Response
  • Hi everyone

    I've been desperating doing research on Hereditary Hemochromotosis and anemia, as my friend is dying.

    Last Dec, he was able to walk with a walker, and after 4 desferral treatments, his ferritin went from over 2300 down to over 1800. The doctor recommended vitamin D3, 5000 iu about 2 weeks later. I never thought anything of it because it's supposed to be a vitamin everyone should take, but just recently read that vitamin D suppresses hepcidin, a hormone in the liver that regulates iron absorption. My friend has been almost imbolized since March.

    Has anyone had a similar experience with vitamin D?

    After reading this article about how vitamin D will inhibit iron from being released, you will probably want to discontinue taking vitamin D.


    After clicking the link, scroll down to figure 5 for a quick overview

    http://jasn.asnjournals.org/content... "

    Thanks
    Anonymous 1 Replies Flag this Response
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