OpenHealth Q&A

A Year of Unexplained Symptoms and No Diagnosis Despite Various Medical Consultations

Greetings everyone. I’m a 33-year-old male, standing at 1.79 meters tall and weighing 74 kilograms, currently residing in Portugal. I have a pre-existing condition known as Visual Snow Syndrome and am on Omeprazole to treat esophagitis. Since late February 2024, I have been experiencing a range of perplexing symptoms. On certain days, I feel unwell, particularly noticing a sensation of warmth around my eyes, which can fluctuate in intensity. Occasionally, this discomfort radiates throughout my body. There are times when I experience shivering, though these episodes are infrequent. Alongside this, I frequently feel fatigued; when attempting physical activity, my skin often feels as if it's in a cold sweat. Initially, the symptoms were quite severe, but now they are somewhat manageable, albeit still impairing my overall well-being and exacerbating my Visual Snow Syndrome. These symptoms vary throughout the day and can persist for extended periods; for instance, I recently endured this for three consecutive weeks. Although there have been moments when it seemed to subside, it invariably returns. I have consulted with two general practitioners, an immunologist/allergist, an endocrinologist, and an andrologist as they suspected potential issues such as: - Allergies: I am significantly allergic to dust mites, with a level of 12.90 KU/L, yet these sensations occur regardless of my environment. - Low testosterone: My total testosterone level is 783 ng/dL with free testosterone at 33.28 pg/mL. - Low iron levels: Initially, my ferritin was low at 20.8 µg/L due to a largely vegetarian diet; after taking prescribed iron supplements, my levels have increased to above 50 µg/L, but the symptoms are still present. - Insufficient vitamin D: My vitamin D was at borderline levels, and I am currently on medication to address this deficiency. My vitamin B12 levels are satisfactory (512 ng/L). I recorded a free cortisol level in urine of 56 µg/24h, while blood cortisol was 14.74 µg/dL. Testing for reactive C Protein and its ultra-sensitive counterpart showed levels below 0.05 mg/dL. Thyroid function has been deemed normal, and screenings for STDs returned negative. Extensive tumor tests were also performed, revealing results such as a total metanephrine level of 162.2 pg/mL, chromogranin A at 256.0 ng/mL, beta-2-microglobulin at 1.50 mg/L, carcinoembryonic antigen (CEA) at 1.3 ng/mL, and 5-HIAA at 5.3 mg/24h. Additionally, imaging studies on my thyroid and cervical ganglia were inconclusive. Despite undergoing an array of tests, I am yet to discover any answers that could illuminate my situation. Please feel free to ask any questions that you think might be relevant. Thank you in advance for your support.

Answers (1)

3/21/2025, 7:20:45 AM

OpenHealth AI

I'm sorry to hear about the ongoing challenges you're facing with your health. You've already gone through an extensive range of evaluations, which can be incredibly frustrating when you're still experiencing unexplained symptoms.

Key Points

1. Your range of symptoms includes warmth around the eyes, fluctuating discomfort, fatigue, and episodes of feeling cold.
2. Misdiagnosis can sometimes occur, especially for complex or overlapping conditions.
3. There may be several potential underlying causes that still need to be considered.

Explanation

Your situation suggests a possibility of overlapping syndromes or conditions, especially considering your existing diagnosis of Visual Snow Syndrome. The sensation of warmth, fatigue, and cold sweats can be related to several factors, including autonomic nervous system dysregulation, anxiety, or possibly even chronic fatigue syndrome or fibromyalgia. Allergies or environmental sensitivities may also play a role in amplifying your symptoms, especially given your known allergies.

The level of stress and uncertainty you're facing can also exacerbate symptom severity, leading to a cycle that further complicates your experience. It's important to focus on what you can control while continuing to seek clarity around your health status.

Next Steps

1. Symptom Diary: Keep a detailed diary of your symptoms, noting the timing, severity, and any potential triggers or changes in your environment, diet, or stress levels. This may help in identifying patterns that could be addressed.

2. Lifestyle Modifications:

   • Diet: Continue maintaining a balanced diet (incorporating iron and vitamin D-rich foods) and monitor any potential food sensitivities that could be contributing to your symptoms.
   • Hydration: Ensure you are adequately hydrated, as dehydration can worsen fatigue and overall wellness.
   • Physical Activity: Engage in gentle, restorative exercises like yoga or walking to promote circulation without overwhelming your body.

3. Stress Management: Explore techniques such as mindfulness, deep breathing exercises, or meditation which can potentially help manage the stress contributing to symptom exacerbation.

4. Reassessment of Current Treatment: It may be worth discussing with a specialist about potentially overlapping conditions that include your symptoms, such as systemic conditions like lupus or even conditions related to the autonomic nervous system.

5. Follow-Up: If your symptoms significantly worsen or if new symptoms develop, reassess with your healthcare team to rule out any emerging conditions that may need immediate attention.

If any particular symptom evolves or becomes concerning (e.g., significant changes in mood, new types of pain), please reach out for more immediate support. Your well-being is paramount, and seeking clarity is a valuable part of that process.