Navigating the Journey from Iron Deficiency to Excess: Understanding My Situation
I am currently waiting for further investigations after being referred to a specialist, and I find myself quite perplexed by the situation. As a 22-year-old female weighing 80kg and standing at 159cm, I have been diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS), fibromyalgia, dysautonomia, hypothyroidism, and fatty liver disease. I am starting to suspect that the issues with my liver might be linked to this iron imbalance. While I have other health conditions, these four have the most significant impact on my daily life. My current medication regimen includes Yaz, 50mcg of levothyroxine, 300mg of Gabapentin, a magnesium supplement, and an as-needed 8mg Ondansetron wafer for nausea. My history with iron levels has been quite tumultuous. I experienced my first menstrual period at age 9, which was excessively heavy. This prompted a screening that revealed I was iron deficient. By age 12, I began taking iron supplements, as my parents initially tried to address the deficiency through dietary changes. Just a month later, however, my iron levels were reported as 'too high', with a transferrin level that I distinctly recall being around 8. After discontinuing the supplements, my iron and transferrin levels plummeted, arguably reaching their lowest point of 7. At 14, I attempted a different formulation of iron supplements, which also led to similar complications. Consequently, I started Yaz, believing it might alleviate the heavy periods contributing to my deficiency. When I turned 19, I opted for an iron infusion due to persistent low iron levels and issues with fatigue. Now, at 22 and under a new doctor’s care, she has documented that my iron levels remain elevated and has tested me for hemochromatosis. The only positive result was for the H63D mutation, and I have been referred for additional assessments. Blood work results are available in the comments. I have several questions I hope to clarify: 1. Could this elevated iron level be the reason for my overload? My doctor pointed out that my past deficiency might complicate matters. 2. Are these elevated levels contributing to other health complications I face, such as fatty liver, decreased libido, and difficulties with maintaining my weight? I have been diligently calorie counting based on advice from medical professionals here, and I assure you I am consuming 1400 calories daily. Although I have always had a stockier build, I am finding weight management increasingly challenging.
Answers (1)
8/20/2025, 3:21:45 AM
OpenHealth AI
Thank you for sharing your complex health situation. Understanding the interplay between your iron levels and various health conditions is crucial, especially with your history of both deficiencies and excess. I'll address your questions directly and provide actionable next steps.
Summary
- Elevated iron levels can indeed be concerning. They may relate to your symptoms and health conditions, including fatty liver disease and fatigue.
- Managing your weight and addressing concerns like libido may require a comprehensive approach, including dietary adjustments and monitoring of your overall health.
Explanation
Elevated iron levels might be related to a few factors:
- Iron Overload: This can occur due to genetic conditions like hemochromatosis (which you've been tested for), as well as through repeated iron infusions or excessive intake.
- Connection to Fatty Liver and Other Symptoms: Studies suggest that iron overload can contribute to liver damage and metabolic disorders. This means your elevated iron could potentially impact your liver function, possibly affecting your energy levels and overall health.
Your experiences with heavy menstrual bleeding likely contributed to your iron deficiency early on, but managing those levels now is essential as excess iron can cause damage.
Next Steps
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Continue Monitoring: Stay engaged with your specialist regarding the ongoing investigations around your iron levels and liver health. Keeping a record of your symptoms, including changes to your fatigue and weight, will aid in these discussions.
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Dietary Adjustments: Consult with a nutritionist who can help you tailor your diet to:
- Consider foods low in iron (avoid red meats, liver, and iron-fortified products) while ensuring you still get adequate nutrients.
- Focus on liver-friendly foods (fruits, vegetables, whole grains) that support metabolic health and may aid in weight management.
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Discuss Medication with Your Doctor: Ensure your current medications align well with your health goals. Some medications can affect weight and metabolism; discuss these concerns with your doctor.
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Explore Physical Activity: Engage in gentle physical activity, which can help with weight management and improve overall metabolic health, particularly given your fibromyalgia and dysautonomia.
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Monitor Symptoms: Pay attention to your libido, fatigue, and weight management, and share any significant changes with your healthcare team. These symptoms can relate to both hormonal balance (impacted by your thyroid and birth control) and iron levels.
Reassurance
It's completely understandable to feel overwhelmed given your complex health background. Taking these steps can help clarify your situation and potentially lead to improved health outcomes. You’re taking things one step at a time, and that's a positive approach. If you have further questions or need clarification on any points, feel free to ask.
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