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Hemochromatosis

Updated on September 26, 2015

My Hemochromatosis Experience

I have a question for all of my readers. How often do you go to see your doctor for regular checkups? I go about every 3 months or so. One day my blood results came in and I was told that I have high amounts of iron (overload) in my body. So I scheduled for another visit to see my doctor. What is this disorder I have and what is it called?

I was later diagnosed of having "Hemochromatosis". I was a bit startled not knowing the seriousness of this disease. What is that I wondered. Further testing was needed to find out more about my current condition. So I went in for a biopsy for my liver. When doing a biopsy, they remove a tiny piece of your liver and examine it under a microscope. This way they can see how much iron content there is and to see if your liver is damaged or to what degree. My test results came out normal.

Here I will tell you basically about the disease and what is involved as a patient being treated with this disease.

* "Image courtesy of [gameanna] / FreeDigitalPhotos.net".

A Silent Killer

The problem with this disease is that of having too much iron stored in a person's body.

When we have too much iron, it basically begins to accumulate and starts the damage process to major organs and tissues in a person's body eventually leading to fatality. This iron buildup specifically attacks the liver, heart, and pancreas.

So how does one get this disease?

One way is when both parents have the mutation of the faulty HFE gene called C282Y. A person born with 2 copies of it would most likely develop Hemocromatosis. This results in one having the inability of regulating the amount of iron absorbed in their bodies from their food intake or consumption. Hemochromatosis is found to be an inherited disease which mostly affects Caucasians of Northern European descent. These ones fall under the Primary Hemocromatosis category.

So why do I have it?

I have taken a blood test recently and have found out that I don't have the gene that causes Hemocromatosis. I fall in the Secondary Hemocromatosis which is caused by other health disorders such as anemia and also alcoholism. Yes, it is not just a hereditary disease, but different factors also do play a role when it comes to this and a person's health.

Helpful Books for Hemochromatosis Patients

Living with Hemochromatosis
Living with Hemochromatosis

All you need to know to help cope with the disease.

 

How to Diagnosis this Disease

Hemochromatosis is rare and many doctors may not think to test for it. The disease is not often diagnosed or treated and that is why this can be a scary disease. Many doctors who you go to may check for general things such as liver disease, heart disease, or diabetes. But they may not know if you might have a problem with the high iron overload problem that causes hemochromatosis. So it's good to get a regular routine checkup as always in general just in case.

This is how they found out I have it. Next time you do a blood test you might want to ask your doctor to check and do a transferrin saturation test. This test tells the doctor how much iron is bound to the protein that carries iron in the blood. Any Ferritin levels higher than 45 percent are considered too high. If it is too high, they may do a liver biopsy. Most likely though you probably do not have it or fall in any risk of getting this disease.

My Treatment for this Disease

Back then when I was first diagnosed in 2006 (having a ferritin level of 1,307), I then had to lower that amount to 50 and below. The process of treating this disease is called phlebotomy in which they draw some blood out of you as they do at the blood banks when people donate their blood.

I was sent into another room and I found myself surrounded by cancer patients ! It was like a wakeup call. They were all undergoing chemotherapy. This sort of gave me a what's next for me thought. It sort of blew my mind. But I am fortunate to not be in that situation yet and hope ever not to. An uncomfortable feeling came over me.

After turning in my medical records to the nurse, she took me to an empty chair to sit in. I sat down and she asked me if I wanted to take a shot first to help numb the pain before she draws blood from my vein. Being my first experience, I took the shot. She then placed a bottle on the arm rest right next to me and she took out the the biggest needle I ever saw ! It was quite thick as well. After applying the rubbing alcohol she then started to lightly slap on my arm to where she might be able to find a vein. It was a game of hide and seek, not much fun for me. She finally found one and then slightly jammed it into my arm. Sometimes the vein is elusive and several attempts has to be made. But finally it was in and she connected the plastic tube like thing into the huge needle that follows into the bottle on the other end where the blood flows into. But OH MY! Being that I guess I had so much iron or something... it flowed very slowly and slushy like the drink. Yes !!! the Icee drink that you can buy at 7 eleven. Dripping little drops and slushy thickness.

After about 30 minutes they got out a pint out of me. It doesn't always take that long. Sometimes my blood flow nowadays only takes about 10- 15 minutes. They then have you rest for a bit and then take your blood pressure. They take them while you're sitting down and then a little while later they take it while you are standing up. If you don't feel dizzy and your blood pressure is good, then you are allowed to leave or rest a bit. I do phlebotomy about every 3 months now. As I get better I may go less in a year. It all depends on your iron level situation. Today my ferritin level is at 32 which is good. It should be 50 and below. Today it is the year 2013, and this has been my experience.

My Own Phlebotomy Treatment

My Phlebotomy treatment
My Phlebotomy treatment | Source

My Blood Collection...The End Result

How Does This Disease Affects You?

Do you or know anyone with hemochromatosis

See results

Medical Help Video

A Cookbook for Hemochromatosis Patients

What is Neonatal Hemochromatosis

My heart goes out to Mrs. Diana Vasco... who's newly born son had passed away and was later diagnosed with having Neonatal Hemochromatosis.

This was my first time I have heard of this disease. So I had to look this one up.

Today, researchers are finding a way to screen pregnant women and help detect unsuspecting NH mothers before they give birth to a severely ill NH baby. In some
cases a liver transplant or the antioxidant IV drip treatment have been used.

Here are more information about Neonatal Hemochromatosis.
@http://www.neonatalhemochromatosis.org/

Saving Baby Ariz - Neonatal Hemochromatosis Video

Neonatal Hemochromatosis Poll

Has anybody known of someone who had a baby born with Neonatal Hemochromatosis?

See results

Comments: Please feel free and share experiences with others.

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    • Minoru10 profile image
      Author

      Michael Yoshinaka 2 years ago from Honolulu, Hawaii

      Hi thealpaca,

      Yes I do and I get regular checkups every few months. They take out a pint I think out of me like they do at blood banks. It is similar .

      Thank you for your comment. : D

    • thealpaca profile image

      thealpaca 2 years ago from Osaka

      Have you considered giving blood every two months to lower iron levels?

      A theory is that women have lower iron levels because they lose blood every month.

    • Minoru10 profile image
      Author

      Michael Yoshinaka 3 years ago from Honolulu, Hawaii

      Thank you Lady Lorelei for your concern. I am fine now but it is an illness that needs to be monitored. Sad to hear of your family's allergy to metal.

      Better Health to you and family. : D

    • Lady Lorelei profile image

      Lorelei Cohen 3 years ago from Canada

      Very frightening to discover that you have this type of illness. I hope that it can be controlled well. Our family has an allergy to metal that seems to be hereditary. My mom had it and my daughter does also. They must be very careful and my daughter discovered that even vitamins containing iron bothered her. Best wishes for your health.

    • Diana Vasco profile image

      Diana Vasco 3 years ago from The Netherlands, Europe

      My only son, newborn, passed away after having been diagnosed neonatal hemochromatosis. IO am still struggling to accept, only now will be able to help find answers that I need. How was this not detected in pregnacy? My anger has taken over my abilities to focus on many things. Grateful if you know more cases of NEONATALhemochromatosis

    • Minoru10 profile image
      Author

      Michael Yoshinaka 4 years ago from Honolulu, Hawaii

      @Doc_Holliday: Thank you Doc_Holliday for reading my lens on hemochromatosis. Yes, it was something I've never heard of either. Thank you for your comments. : D

    • profile image

      Doc_Holliday 4 years ago

      Useful information. I haven't heard of it until now.

    • Minoru10 profile image
      Author

      Michael Yoshinaka 4 years ago from Honolulu, Hawaii

      @betterhealth235: Thank you betterhealth235, I am doing just fine and I am in the safe zone. : D

    • profile image

      betterhealth235 4 years ago

      Learned a lot about this disease here - hope you are doing well,

    • Minoru10 profile image
      Author

      Michael Yoshinaka 4 years ago from Honolulu, Hawaii

      @MarathonRunning: Thank you for liking and commenting on my lens. : D

    • Minoru10 profile image
      Author

      Michael Yoshinaka 4 years ago from Honolulu, Hawaii

      @ayannavenus: Thank you Ayannavenus. Thanks for visiting my lens.

    • Minoru10 profile image
      Author

      Michael Yoshinaka 4 years ago from Honolulu, Hawaii

      @Niagara Ghosts: Thank you NiagaraGhostwalks for visiting my lens. Yes please check when you can. Always take care of your body especially with this iron overload disease. You might not know there is a problem until it's getting too late. Continued Good health to you. : D

    • profile image

      changrcoacher 4 years ago

      Thanks for this informative, personal experience lens. I knew excess iron could be a problem, but I learned a lot about it from you. Most of what I have encountered, including personal experience, has been about anemia...not enough iron! Congratulations on getting your situation under control and good thoughts for your continued good health.....

    • MarathonRunning profile image

      Martina 4 years ago from Croatia, Europe

      I know that it`s demanding to control a chronic disease because it often affects so many other things in your organism. It`s nice to hear that you manage to find a successfully way for fighting it. Well done and thank you for sharing!

    • ayannavenus profile image

      ayannavenus 4 years ago

      Thanks for sharing. Good to hear you in good health.

    • Niagara Ghosts profile image

      Niagara Ghosts 4 years ago

      On my last blood profile a few years ago, I had a high iron level but just below the alarming stage. Your article has reminded me to go get it checked again and if it still exists, to explore further. Thanks for sharing!

    • Minoru10 profile image
      Author

      Michael Yoshinaka 4 years ago from Honolulu, Hawaii

      @changrcoacher: Thank you so much for reading my lens. I really enjoyed reading your lens and hope you are doing well in good health. See you around in the world of Squidoo. : D

    • profile image

      changrcoacher 4 years ago

      Thanks for this informative, personal experience lens. I knew excess iron could be a problem, but I learned a lot about it from you. Most of what I have encountered, including personal experience, has been about anemia...not enough iron! Congratulations on getting your situation under control and good thoughts for your continued good health.....

    • profile image

      changrcoacher 4 years ago

      Thanks for this informative, personal experience lens. I knew excess iron could be a problem, but I learned a lot about it from you. Most of what I have encountered, including personal experience, has been about anemia...not enough iron! Congratulations on getting your situation under control and good thoughts for your continued good health.....

    • Minoru10 profile image
      Author

      Michael Yoshinaka 4 years ago from Honolulu, Hawaii

      @smine27: Better than before. Thanks smine27 for the squidlike. But it's all about maintaining. I do better when I'm in Japan as you know. : D

    • smine27 profile image

      Shinichi Mine 4 years ago from Tokyo, Japan

      sounds like a very serious disease. I hope you are controlling with your diet.

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