Exploring Solutions: Unexplained Brain Volume Reduction, Intracranial Hypertension, and Autoimmune Concerns
Hello all, I’m reaching out for guidance as I navigate a puzzling health situation that has prompted numerous questions. I underwent a brain MRI with contrast recently, and the results have caused considerable concern. Unfortunately, I have not received much clarity from my healthcare team at this stage. The MRI revealed some critical findings: * **Significant cerebral volume reduction** — My total brain volume was recorded at **1175 cc**, placing me in the **1st percentile** for my age and sex, and **2 standard deviations below the average.** * **Diaphragma sella incompetence** — I’ve learned that while this may be incidental, it could also relate to **Idiopathic Intracranial Hypertension (IIH)**, a condition for which I have been assessed. * All other aspects of the MRI were described as “unremarkable” — there were no signs of tumors, lesions, or bleeding. # Symptoms and Medical History: * **Chronic headaches** along with **intracranial hypertension** * Persistent **fatigue**, mental fog, and sporadic **weakness on the right side** * **Facial rash that appears in the evenings**, accompanied by **flu-like symptoms** * **Hashimoto’s thyroiditis** (an autoimmune form of hypothyroidism) * **Type 2 diabetes**, **PCOS**, and **orthostatic hypotension** * Recent lab results indicate **increased inflammation**: * CRP: **14.6** (elevated) * Sed rate (ESR): **26** (also high) * **Rheumatoid factor is negative**, yet I wonder if there are other autoimmune issues at play. Additionally, I have experienced notable weight fluctuations and am currently on **Tirzepatide (Mounjaro)** for weight management. Following bariatric surgery, I’ve read that significant weight loss and potential nutritional deficiencies could influence changes in brain structure. # Questions I'm Contemplating: * Is the observed brain volume reduction potentially linked to **autoimmune or inflammatory processes** (like Hashimoto’s Encephalopathy, lupus, or vasculitis)? * Could **chronic IIH** or some other cerebrospinal fluid pressure disorder account for these structural alterations? * Has anyone gone through similar **cognitive changes, brain atrophy, or inflammatory issues** that led to reliable answers? * What types of labs, specialists, or imaging provided clarity in your experience? I find myself consulting various specialists (neurology, endocrinology, rheumatology), but there seems to be a lack of cohesion in finding connections among my symptoms. I would greatly appreciate hearing from anyone who has faced a similar journey or has suggestions on how to proceed. I am determined to advocate for my own health, and your insights would be invaluable. Thank you for your help! 💛
Answers (1)
6/20/2025, 8:20:47 PM
OpenHealth AI
Thank you for sharing your concerns; it’s understandable to feel overwhelmed with such complex health issues. Let's break this down to address the key points, focusing on your primary questions and the next steps you can take.
Main Points
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Brain Volume Reduction and Symptoms:
- Your brain volume reduction may be linked to various factors, including autoimmune conditions, chronic conditions like IIH, or other inflammatory issues.
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Chronic Issues and Autoimmune Considerations:
- The interplay between Hashimoto's thyroiditis, IIH, and inflammation suggests the need for thorough evaluation of possible autoimmune processes.
Explanation
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Brain Volume Reduction: This can occur due to several reasons, including inflammation, chronic pressure within the skull (as seen in IIH), or even nutritional deficiencies post-bariatric surgery. Your low brain volume could potentially be influenced by chronic inflammation or autoimmune processes, though conclusive links require further investigation.
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Symptoms: Chronic headaches, fatigue, and cognitive symptoms are significant. The facial rash and flu-like symptoms further complicate the picture, suggesting possible autoimmune involvement.
Next Steps
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Symptom Tracking:
- Keep a detailed symptom diary for at least two weeks. Note when symptoms arise, their severity, and any potential triggers. This information can be essential for your healthcare providers.
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Request Comprehensive Autoimmune Testing:
- Discuss with your healthcare team the possibility of deeper autoimmune assessments. Tests could include:
- Antinuclear antibodies (ANA)
- Anti-dsDNA
- Anti-Smith antibodies (specific for lupus)
- Tests for other conditions like vasculitis
- Discuss with your healthcare team the possibility of deeper autoimmune assessments. Tests could include:
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Consult a Dietitian:
- Given your history of bariatric surgery and current medications, a dietitian can help assess any nutritional deficiencies that might contribute to cognitive changes or inflammation.
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Engage with a Neurologist Specializing in Autoimmune Disorders:
- If you haven't already, a neurologist with expertise in autoimmune encephalitis or related conditions might provide tailored insights and management strategies.
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Considerations for IIH Management:
- If IIH is confirmed, management approaches may include diet, weight management strategies, and possibly medication adjustments or interventions aimed at reducing intracranial pressure.
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Emotional and Mental Health Support:
- Chronic health issues can take a toll on mental well-being. Consider discussing your experience with a therapist familiar with chronic illness to help manage stress and anxiety related to your health journey.
Reassurance
Your determination to advocate for your health is commendable and essential in navigating these complex conditions. By systematically tracking your symptoms, advocating for thorough testing, and exploring dietary support, you can work towards understanding the connections among your symptoms. Please continue to seek support from your healthcare team, and feel free to reach out with further questions or updates on your journey.
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