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You are feeling achy, your stomach is uncomfortable and you are always tired. There are so many other disorders that have the same symptoms. You could be misdiagnosed. As my other articles have stated, I have been sick for years, so when I had these symptoms, I thought it was just another one of my other many diagnosis.
Unveiling Hemochromatosis
Just as many of the other symptoms, feeling constantly tired, achy, and dealing with an uncomfortable stomach are symptoms that many of us might brush off as the toll of a busy life or perhaps attribute to other known medical conditions. This was precisely my initial thought process, given my history with various diagnoses over the years.
My path to diagnosis was not straightforward. With normal iron levels, I overlooked the possibility of having high ferritin levels, a key indicator of Hemochromatosis. It was only after undergoing genetic testing through Ancestry Health DNA tests that I discovered my predisposition to this condition and asked the doctor to perform the ferritin test.
Surprise! Luckily, I wasn't showing many signs, but it did turn out that I had some. Finding out this information, actually helped me to better direct my treatment plan for other issues, as it made us (my doctors and I) question and re-evaluate my diagnosis for other issues.
Interestingly enough, I had recently had an iron test and it was fine. Normal levels. Apparently, you can have high ferritin levels, even with normal iron levels, as I did.
The Revelation
What was funny was I had no idea I had it. I decided to get the Ancestry Health DNA tests. Here is a link to get one of your own. Getting this test was a great choice for me.
I took the test four years ago. There are other test options now though.
The 23 and Me+ Premium test
It looks like there are several other options available. The key is to ensure that they are looking at health genetic characteristics, as well as the regular.
The genetic test, which was a simple, at-home kit, ended up being a pivotal moment in my health journey. Despite not showing many symptoms, the test indicated a genetic disposition towards Hemochromatosis. This led to a deeper investigation with my healthcare provider, including a check on my iron and ferritin levels, which, although slightly elevated, weren't alarmingly high thanks to early detection.
Understanding Ferritin and Its Implications
Hemochromatosis, or iron overload, is a condition marked by the body absorbing too much iron from the diet. In actuality, it is the ferritin levels that are associated with iron that are the real culprit. This excess ferritin is then stored in various organs, particularly the liver, heart, and pancreas, which can lead to serious health issues if left untreated. The symptoms of Hemochromatosis are indeed varied and can mimic many other disorders:
Painful joints
Heart issues
Unexplained weight loss
Abdominal pain
Loss of body hair
Lack of sex drive
Fatigue or loss of energy
According to the Cleveland Clinc's website on May 17, 2022
So what is Ferritin? The human body stores about three to five grams of iron. Because free iron is toxic to the organism, iron stored in cells is coated by a protein complex called ferritin. Since a small amount of ferritin passes into the blood, ferritin determination helps to detect iron levels in the body.
Ferritin serves as the primary storage protein for iron in our bodies, encapsulating it to prevent free iron's toxic effects on our system. The amount of ferritin that leaks into our bloodstream acts as a mirror, reflecting the total iron stored within our bodies. Hence, understanding and monitoring ferritin levels is crucial in managing Hemochromatosis.
For those interested in keeping a close eye on their iron levels from the comfort of their home, there are now tests available online tailored for both women and men. These kits provide a straightforward way to measure one's ferritin levels, offering peace of mind or a prompt to seek further medical advice
If you are suffering from similar symptoms, could Hemochromatosis be something you have?
Here is a test you could do from the safety of your own home. It is a test that gets mailed to you, then sent to a Certified Lab.
Here is the link to a test for Women -
Here is the same test, but for Men -
It's always better to get a doctor involved early in this, but there are times it's easier.
Understanding the Consequences of High Ferritin Levels
High ferritin levels, often indicative of iron overload or hemochromatosis, can have significant impacts on the body if not properly managed. When too much iron accumulates, it can lead to a condition known as iron overload. Over time, this excess iron is deposited in various organs, notably the liver, heart, and pancreas, potentially causing damage and a variety of health complications.
Liver Damage: The liver is one of the primary organs where excess iron is stored. Over time, iron overload can lead to liver enlargement, fibrosis, or even cirrhosis—a severe and irreversible liver damage condition. In some cases, it increases the risk of developing liver cancer.
Heart Problems: Excess iron can be toxic to the heart muscle, leading to complications such as irregular heart rhythms (arrhythmias), heart failure, and in severe cases, cardiomyopathy, where the heart is unable to pump blood efficiently.
Pancreatic Damage: The pancreas can also be affected by iron overload, which may disrupt its function. This disruption can lead to insulin resistance or diabetes, as the pancreas is integral in insulin production and glucose regulation.
Joint Pain and Arthritis: High ferritin levels can lead to the development of arthritis, particularly in the hands and knees, as iron deposits in the joints can cause pain and inflammation.
Hormonal Imbalances: Iron overload can affect the body's endocrine organs, leading to hormonal imbalances. This may manifest as hypothyroidism, hypogonadism, or other hormone-related conditions, affecting overall health and quality of life.
Skin Changes: Some individuals with iron overload may notice changes in their skin color, becoming bronze or gray, due to the iron deposits.
Increased Infection Risk: Ironically, despite iron being crucial for immune function, iron overload can actually increase susceptibility to certain infections. Bacteria and viruses can thrive in high-iron environments, leading to a greater risk of infections.
It's important to note that these consequences underscore the need for early detection and management of high ferritin levels. If you suspect you have symptoms or are at risk of iron overload, consulting with a healthcare provider for appropriate testing and potential treatment plans is crucial. Remember, while lifestyle adjustments can help manage ferritin levels, they should complement, not replace, professional medical advice and treatments.
Further Resources for Understanding Hemochromatosis and Iron Overload
If you're seeking more information on hemochromatosis, iron overload, or how to manage high ferritin levels, several reputable resources can provide comprehensive insights. Here are some recommended places to start your research:
National Institutes of Health (NIH): The NIH's website offers a wealth of information on various health conditions, including hemochromatosis. Their pages often include overviews, treatment options, research updates, and advice for managing the condition. https://www.nih.gov/
Mayo Clinic: Renowned for its patient care and research, the Mayo Clinic's website provides detailed articles on symptoms, causes, diagnosis, and treatment of hemochromatosis. https://www.mayoclinic.org/
Cleveland Clinic: A leader in medical research and education, the Cleveland Clinic offers extensive resources on iron overload and related disorders. Their content is both accessible and informative. https://my.clevelandclinic.org/
Iron Disorders Institute: Dedicated to preventing and treating iron-related conditions, the Iron Disorders Institute website is a treasure trove of information on hemochromatosis, including guides on diagnosis, management, and dietary advice. https://irondisorders.org/
Hemochromatosis.org: An excellent resource for those looking to understand more about iron overload from a patient perspective. It includes personal stories, resources, and links to further reading. http://www.hemochromatosis.org/
PubMed: For those interested in the scientific and medical research aspect, PubMed offers access to a vast database of academic papers and articles on hemochromatosis. https://pubmed.ncbi.nlm.nih.gov/
Genetic and Rare Diseases Information Center (GARD): Hosted by the NIH, GARD provides information on rare diseases, including hemochromatosis. Their resources are helpful for understanding genetic components of conditions. https://rarediseases.info.nih.gov/
Remember, while these resources are excellent for research and education, they should not replace professional medical advice. If you believe you have symptoms of hemochromatosis or any related condition, it's crucial to consult a healthcare provider for diagnosis and treatment tailored to your specific needs.
Navigating Treatment and Lifestyle Adjustments
I was then sent to a hematologist who ran some additional tests and made the decision to begin blood draws. As I have other medical issues, which do not allow me to donate blood, and I didn't want to take yet another pill... I agreed to the doctors suggestion of blood draws as a form of treatment. This approach helps reduce the excess iron accumulated in the body, offering relief from the symptoms and preventing potential damage to vital organs.
Blood draws are yet another story for another time. Research shows that regular blood letting for some people can actually improve the immune system and kick start it back up. More on that in another post.
The journey towards managing Hemochromatosis also led me to make significant changes to my diet and lifestyle. I learned the importance of timing and food combinations, especially concerning iron absorption. For instance, consuming calcium-rich foods or beverages before eating red meat can significantly reduce iron absorption, thanks to calcium's binding effect on iron.
Furthermore, avoiding alcohol or acidic drinks while consuming iron-rich foods is advisable, as these can accelerate iron's entry into the bloodstream.
Community and Support
Living with Hemochromatosis has been an enlightening albeit challenging journey. It has opened my eyes to the intricate balance our bodies navigate daily and the importance of being proactive about our health. Sharing my experience is not just about narrating my story but about building a community where we can exchange knowledge, tips, and support.
If you're navigating a similar path or have insights into managing Hemochromatosis, I invite you to share your experiences. Your story could be the beacon of hope or the piece of advice that makes a difference in someone else's journey.
So that is the story of my journey to find out I had hemochromatosis. Since then, I have changed some of my eating habits.
I found that if I want to eat red meat, I need to:
Eat a tums, some calcium, or drink some milk right before. The calcium binds directly with the iron and ferritin in the stomach and it doesn't get digested.
I should avoid drinking alcohol or acidic drinks at the same time I eat red meat. The alcohol or acid will break down the iron and speed it into the blood stream.
I just finished my second blood therapy - getting blood removed from my body. (I think I need to find a vampire. I have several other things to factor in also due to some off my other medical issues, but this that is also another story.
I would love to hear from you about any of your experiences. I'm the only one I know with this condition and I would love to get feedback from others of things they have done to help.
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