Hemochromatosis

Welcome to Connect, @paulbkk1979. Hemochromatosis is a disorder where your body absorbs too much iron from the foods you eat. Excess iron is stored in your organs, especially your liver, heart and pancreas and can lead to serious health issues. As you’ve found out, this condition is often hereditary but from my understanding most people don't experience symptoms until around middle age and up. So that explains why you were diagnosed around 64.

Here are a couple of informational links for you to check out if you’re interested:
Mayo Clinic~
https://www.mayoclinic.org/diseases-conditions/hemochromatosis/symptoms-causes/syc-20351443
Another article from, Healthline.com https://www.healthline.com/health/hemochromatosis#diagnosis

Were you having symptoms that led to the discovery? Are you having any treatments such as chelation or phlebotomies to help lessen the amount of iron in your body?

have hereditiary hemochromatosis and recently dignosis with breast cancer, is it possible the two are linked

Hi @may2024, I’m so sorry to hear you’ve been diagnosed with breast cancer. But I’m glad you found your way to Connect. There’s a wonderful breast cancer support group with members in the forum who are all here to offer encouragement and help you in any way they can.

There are so many ongoing discussions in the group but I thought maybe this would be a good conversation for you to jump into with @journey99 @crteelect @auntieoakley and many others who have been diagnosised with breast cancer.
https://connect.mayoclinic.org/discussion/newly-diagnosed-with-lots-of-questions/
I did find several articles relating to some of the potential side effects of hemochromatosis and there is evidence that there may be a link between this hereditary disorder and cancer. This quote from American Family Physician, “Individuals with hereditary hemochromatosis have an increased risk of hepatocellular carcinoma and colorectal and breast cancers.” I’m posting the link to the article for you to read through. https://www.aafp.org/pubs/afp/issues/2021/0900/p263.html#:~:text=Individuals%20with%20hereditary%20hemochromatosis%20have%20an%20increased%20risk,of%20hepatocellular%20carcinoma%20and%20colorectal%20and%20breast%20cancers.

Wishing you well on your cancer journey. Have you begun treatments for your breast cancer?

Thank you for your response and provided information. Will be following up on suggested link. No treatment at this point.

Hi Lori I don’t understand why my ferritin levels have dropped so dramatically without any kind of interventions, like phlebotomy or drugs. I was told by my doctor that my initial test showed a level of ferritin around 1,000 mu/L, which was in 2014 or 2015 and I did have phlebotomy treatment at the hospital for about a year. Since then I have done nothing to treat my hemochromatosis Lori. My ferritin level last month was in the 90’s why would the level drop without any treatments or medication? I don’t understand how it could happen if the cause was genetic Lori do you know?

Hi Paul. From my understanding it can take years of accumulation of excess iron in the blood and organs before there are any symptoms or before intervention such as phlebotomies with hemochromatosis. That’s why it is sometimes discovered later in life of someone with the inherited condition. If there is an obvious family history it can be determined earlier with genetic testing.

When your doctor discovered your excessive ferritin level it was high enough that you did need to begin phlebotomy treatments on a regular basis for about a year. That may have been enough to bring your reading down to an appropriate level. I’m not a medical professional and only making a guess at this but, because iron is accumulative and took many years to get to the point of requiring phlebotomies, maybe once your level was reduced to normal, you were able to maintain it by diet and exercise.

The reason I say this is because I had very high ferritin due to the many blood transfusions necessary over my leukemia odyssey. I didn’t require a phlebotomy but to help reduce my ferritin, once I didn’t require anymore blood, was to follow a diet of iron blocking foods like nuts and seeds, legumes, whole grains, and green tea. It was suggested to eat less red meat and avoid supplements or multivitamins with iron and vitamin C. I made sure there was daily aerobic exercise such as brisk walking, weight lifting, biking, etc, because exercise can reduce ferritin levels as well.

I found another good article on hemochromatosis for you: From Uptodate.com
https://www.uptodate.com/contents/hereditary-hemochromatosis-beyond-the-basics
While your condition is genetic, it doesn’t mean you have a proliferative blood disorder where you’re producing too many red blood cells. I’m guessing your health improved once you had the phlebotomies and maybe you became more active and in doing so may be keeping your level at the post phlebotomy level? It would be interesting to get a professional opinion on this. Have you asked your doctor about their opinion on why you’ve not needed more treatments?