Hemochromotosis: What are the treatment options?

Posted by guptaguma @guptaguma, Jul 4, 2021

Hello, I was diagnosed with this issue accidentally and phlebotomy was recommended. I have undergone phlebotomy for nearly 8 months and my iron levels dipped a little bit and then increased again. My physician says to keep doing phlebotomy. I don't feel confident that this is the right approach. Any advice? Thank you!

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Hi @guptaguma and welcome. According to this Mayo Clinic article, phlebotomy is the most common treatment option: an initial treatment followed by a "maintenance" schedule of blood removal.
Treatment of hemochromatosis: https://www.mayoclinic.org/diseases-conditions/hemochromatosis/diagnosis-treatment/drc-20351448

I'm also tagging @ctkbear @joejan and @dazlin on this discussion to see if they have experiences to share.

Gupta, are you under the care of a hematologist?

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Hi @guptaguma welcome to Mayo Clinic Connect. In our Connect community, we’re not medical professionals so we can’t diagnose health problems. However, we can share our own personal experiences and insights to help find answers, give suggestions and offer encouragement.

Hemochromatosis is often discovered by accident with a routine physical and a blood test. But having too much iron stored in your organs can create health issues over time. So it’s good that you now have a diagnosis and can continue a long and healthy life with treatment. Did you have any symptoms such as tiredness, achy joints or pain?

The standard treatment for Hemochromatosis is having phlebotomies done on a regular basis to keep your iron level in your blood down. Is there a particular reason you’re having doubts about why your doctor is suggesting you continue with this treatment?

Were you given a special diet of low iron foods to help prevent added iron to your system?
In addition to therapeutic blood removal, you may further reduce your risk of complications from hemochromatosis if you:
Avoid iron supplements and multivitamins containing iron. These can increase your iron levels even more.
Avoid vitamin C supplements. Vitamin C increases absorption of iron. There's usually no need to restrict vitamin C in your diet, however.
Avoid alcohol. Alcohol greatly increases the risk of liver damage in people with hereditary hemochromatosis. If you have hereditary hemochromatosis and you already have liver disease, avoid alcohol completely.
Avoid eating raw fish and shellfish. People with hereditary hemochromatosis are susceptible to infections, particularly those caused by certain bacteria in raw fish and shellfish.
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I’ve posted an excerpt from Mayo Clinic’s site on the treatment of Hemochromatosis with the actual sites for diagnosis and treatment posted below.

“Doctors can treat hereditary hemochromatosis safely and effectively by removing blood from your body (phlebotomy) on a regular basis, just as if you were donating blood.

The goal of phlebotomy is to reduce your iron levels to normal. The amount of blood removed and how often it's removed depend on your age, your overall health and the severity of iron overload.
Initial treatment schedule. Initially, you may have a pint (about 470 milliliters) of blood taken once or twice a week — usually in a hospital or your doctor's office. While you recline in a chair, a needle is inserted into a vein in your arm. The blood flows from the needle into a tube that's attached to a blood bag.
Maintenance treatment schedule. Once your iron levels have returned to normal, blood can be removed less often, typically every two to three months. Some people may maintain normal iron levels without having any blood taken, and some may need to have blood removed monthly. The schedule depends on how rapidly iron accumulates in your body.”
https://www.mayoclinic.org/diseases-conditions/hemochromatosis/symptoms-causes/syc-20351443
https://www.mayoclinic.org/diseases-conditions/hemochromatosis/diagnosis-treatment/drc-20351448
I know this looks like an information overload but it really does address why having a phlebotomy is crucial to your continued good health. Did this help give you a better understanding to the treatment?

Wishing you all the best, Lori.

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Unfortunately, phlebotomy was not an option for my husband because he is anemic. He was diagnosed after suddenly becoming seriously sick and hospitalized. At that point, his liver was compromised and on the verge of failure. He was treated with Ex-jade for several months until his ferretin level became safe. He is now seen every four months by his hematologist and has remained stable for the past eighteen months. Our two sons were subsequently diagnosed and both are being treated with phlebotomy and doing well. Their counts are coming down much faster than their father’s did and both are doing well with with phlebotomy.

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@ctkbear

Unfortunately, phlebotomy was not an option for my husband because he is anemic. He was diagnosed after suddenly becoming seriously sick and hospitalized. At that point, his liver was compromised and on the verge of failure. He was treated with Ex-jade for several months until his ferretin level became safe. He is now seen every four months by his hematologist and has remained stable for the past eighteen months. Our two sons were subsequently diagnosed and both are being treated with phlebotomy and doing well. Their counts are coming down much faster than their father’s did and both are doing well with with phlebotomy.

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Yes, unfortunately anemia does prevent having blood removed on a regular basis so then a chelating agent/medication such as Exjade is used to remove iron from the body. It’s wonderful that he’s now stable and doing so well.
Hemochromatosis is most often genetic so both of your sons must have acquired the genes. Was this discovery through genetic testing or bloodwork for them?
Did you husband’s diagnosis prompt the testing of your sons?
I’m glad that they’re responding so well with the phlebotomy treatments. This has to be a huge relief for you and your husband.

Are any of them having to pay particular attention to any foods or supplements to not increase their iron?

Thank you for sharing your family’s experience with Hemochromatosis. It’s stories such as yours which can really help other members in our forum with similar issues.
Wishing them continued good health! You too! Lori

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