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Struggles with Copper Deficiency and Persistent Neurological Symptoms

3/26/2025, 11:00:48 PMMale25-34

I’m a 26-year-old woman, standing at 5'2" and weighing between 120 to 125 pounds. Currently, I’m on a regimen that includes 12mg of copper, 30mg of Mestinon, and muscle relaxants as necessary. I don't consume any medications or alcohol outside of these. Here’s a summary of my medical story, though I’m unsure what might be relevant: I was born two months premature, and I’ve dealt with mild hypotonia throughout my life, which likely contributes to my hypermobility and dysautonomia, a condition that also runs in my family. Throughout my life, I have faced chronic constipation that began in early childhood and has worsened again in my twenties. Many prescription laxatives have proven ineffective, leading me to rely on weekly bowel cleanouts. Occasionally, taking Mestinon on an empty stomach helps induce a bowel movement. I have also experienced a pelvic organ prolapse. During my teenage years, I struggled with an eating disorder, which relapsed in 2020, but I have been recovered and have regained a healthy weight for over a year now. For the past eight months, my menstrual cycle has been regular. However, I do have low bone density and am currently undergoing physical therapy for cervical instability due to hypermobility, which leads to vertigo, tinnitus, and difficulties with my arms. In summary: I have a copper deficiency that refuses to improve with treatment, and I consistently feel unwell. It seems my primary care physician is at a loss, and while I’m open to the possibility that I could be mistaken about my condition, I truly feel like I’ve exhausted all options. Here’s a timeline of my symptoms: **Spring 2023**: I began experiencing significant numbness and tingling in my limbs, along with an intense burning sensation in my hands and feet. I noticed increased fatigue and struggled to use my arms for extended periods. At times, it felt like my joints were inflamed. **May 2023**: Tests revealed low copper levels at 75 (alongside low white blood cells and ceruloplasmin, but normal zinc and B12). I started a regimen of 4mg copper for a month, followed by 2mg for two months. Although my neuropathy symptoms displayed some improvement, my fatigue and perceived muscle weakness worsened. A punch biopsy ruled out small fiber neuropathy. **Fall 2023**: My fatigue intensified, and I experienced flu-like symptoms continually. **Winter 2023/24**: I found myself grappling with severe fatigue, feeling like I was trudging through molasses. My neuropathy symptoms and internal tremors worsened. A copper test showed a decline to 70, prompting an increase to 6mg of copper. **Spring 2024**: Fatigue continued to escalate, though neuropathy symptoms improved slightly. Flu-like symptoms intensified, and I noticed puffiness in my face, blurred vision, and frequent floaters. I retested my copper levels, which fell to 67, leading me to up my intake to 8mg. **Summer 2024**: My leg weakness improved, although I still faced weekly flu-like episodes and a sensation akin to acidity flowing through my veins. Brain fog persisted, and my vision remained blurry. **August 2024**: Another test showed a drop in copper levels to 64, prompting an increase to 12mg. **Fall 2023**: Symptoms mirrored those of summer, with fatigue at its worst. **October**: My copper level returned to 75. **Winter**: An increase in Mestinon helped alleviate brain fog and improve my autonomic symptoms, but I continued to experience low-level neuropathy with buzzing and vibrations underneath the skin. In December, my PCP suggested upping my copper intake to 18mg in an attempt to reach normal levels. Unfortunately, this change resulted in increased fatigue, flu-like feelings, abdominal pain, and overall nausea. When levels were tested in March, they dropped again to 66, and my zinc levels, which had previously been normal, also fell below the normal range, coinciding with changes in skin and nails, as well as a diminished sense of taste. What is causing this situation? Why aren’t my dietary adjustments and supplementation yielding any positive results? What accounts for the persistent fatigue and weakness? I’ve heard that excessive zinc can negatively affect copper levels; could it be the reverse? I genuinely feel overwhelmed and exhausted from enduring this daily struggle with my health.

Multiple SclerosisLupusRheumatology

Answers (1)

Cony

3/26/2025, 11:01:07 PM

OpenHealth AI

It sounds like you are facing a complex combination of symptoms related to copper deficiency and other health issues, which understandably can feel overwhelming. Your experience with chronic fatigue, neurological symptoms, and difficulty maintaining stable copper levels indeed warrants an in-depth approach.

Summary of Key Concerns

  1. Copper Deficiency: Despite supplementation, your levels fluctuate and remain below normal, contributing to neuropathy and fatigue.
  2. Neurological Symptoms: Persistent numbness, tingling, and burning sensations may require further examination, as they can stem from various underlying causes.
  3. Fatigue and Weakness: These symptoms could be related to both dietary deficiencies and possibly other conditions affecting your overall health.

Possible Explanations

  • Malabsorption: There may be an underlying issue with how your body absorbs copper and possibly other nutrients. Conditions such as gastrointestinal issues could impact nutrient absorption.
  • Zinc and Copper Interaction: Excessive intake of zinc can indeed inhibit copper absorption; however, your zinc levels were previously normal. Keep in mind that both copper and zinc are required in balance, and alterations in their levels can affect one another.
  • Other Deficiencies: It's important to consider other nutritional deficiencies that may contribute to fatigue, such as vitamin D, magnesium, folate, or iron.

Next Steps

Here’s a structured action plan you can follow, focusing on practical and prioritized steps:

  1. Nutritional Assessment:

    • Work with a Dietitian: A registered dietitian experienced in functional nutrition can help identify any dietary gaps and adjust your diet for better nutrient absorption. Discuss a well-rounded diet that includes copper-rich foods like shellfish, nuts, seeds, and dark chocolate.
  2. Medical Review:

    • Specialist Consultation: Consider seeing a gastroenterologist to evaluate if there’s an absorption issue. They may recommend tests to assess gut health or malabsorption syndromes that could explain your symptoms.
    • Neurologist Referral: If you haven’t yet, consult a neurologist about your persistent neurological symptoms. They may suggest further testing beyond the punch biopsy to investigate potential underlying conditions.
  3. Monitoring and Adjustment:

    • Symptom Tracking: Keep a detailed diary of your symptoms in relation to your medication, dietary intake, and any changes in your routine. This can help identify patterns and triggers.
    • Copper Supplementation Review: Discuss with your doctor the components of your copper supplement regimen. Adjusting the types and forms of copper may aid in improving absorption and efficacy.
  4. Hydration and Lifestyle Modifications:

    • Hydration: Ensure you’re drinking enough water daily, as dehydration can worsen fatigue.
    • Physical Activity: Engage in appropriate, low-impact movement as tolerated to help with energy level management and circulation.
  5. Support System:

    • Mental Health: Given your history with an eating disorder and current struggles with feeling unwell, consider speaking with a mental health professional who understands chronic illness and can support your emotional well-being.

Remember, patience is key as changes in nutrition and health management can take time to show results. If your symptoms escalate or you experience new symptoms like severe headaches, visual disturbances, or shortness of breath, seek immediate care. You’re doing a great job navigating this challenging situation – remember to take care of yourself as you move forward.

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