OpenHealth Q&A

Feeling Overlooked: My Recent Health Struggles

Hello everyone, I'm a 33-year-old female. After undergoing a thyroidectomy, I was diagnosed with several health issues, including Graves Disease, factor V Leiden, hypermobile Ehlers-Danlos Syndrome (hEDS), and Postural Orthostatic Tachycardia Syndrome (POTS). Additionally, I have two BIRADS-3 tumors in my right breast detected via MRI, attributed to breast density. I experience systemic inflammation that, frustratingly, does not appear on standard blood tests. Recently, my symptoms have significantly deteriorated over the past six months, with increasing severity. My most intense discomfort is localized to my lower back, hips, spine, ribs, and neck/shoulder area. I notice stiffness in my hands; while the joints seem unaffected, my fingers do show signs of inflammation. My weight remains stable, neither decreasing nor increasing. My lipid results indicate inflammation, and although my cholesterol levels are only marginally elevated (5.5 mmol/L when fasting, 6.5 mmol/L non-fasting), I also contend with Chronic Fatigue Syndrome. Pain persists regardless of my position—be it lying down, seated, or standing—though heat provides slight relief. Imaging has revealed bone erosion at the top of my right femur, along with inflammation in the bone marrow and iliac joint. Additionally, I have begun experiencing neurological symptoms, such as confusion, difficulties concentrating, memory lapses (both short and long-term), and intermittent muffled hearing. Early indications of cervical instability have also emerged. Last week, I visited the emergency room due to excruciating upper back and rib pain ranked at 10 out of 10. Unfortunately, I was informed that the D-dimer test could not proceed due to the cloudy nature of my blood. The recommendation was to follow up on my cholesterol results with my general practitioner. (The blood sample was taken at 1 am after fasting since 6 pm the previous evening.) I recently reviewed my test results, a week post-visit, and here's a summary: **Lipid Levels** - **Date of Collection:** 17/06/25 - **Time of Collection:** 01:20 **Findings:** - Total Cholesterol: 6.5 mmol/L - Triglycerides: 15.4 mmol/L - HDL-C (Good Cholesterol): 0.7 mmol/L - LDL-C: Not calculated (Triglycerides too high) - Non-HDL-C: 5.8 mmol/L - Chol/HDL Ratio: 9.3 **National Guidelines Reference Ranges:** - Total Cholesterol: <4.0 mmol/L - Triglycerides: <2.0 mmol/L - HDL-C: ≥1.0 mmol/L - LDL-C: <2.0 mmol/L (<1.8 for secondary prevention) - Non-HDL-C: <2.5 mmol/L - Chol/HDL Ratio: ideally <4.0 *Note: LDL cholesterol cannot be accurately determined if triglyceride levels exceed 4.5 mmol/L.* Living in a rural part of Australia adds to my frustrations; I feel my concerns are overlooked or dismissed. A specialist is investigating the possibility of Seronegative Rheumatoid Arthritis and has scheduled me for an MRI of the brain and spine this Thursday. Unfortunately, I can only have monthly consultations with him, which makes the process seem drawn out. My GP suggested the possibility of metabolic syndrome but provided little guidance and sent me home without further follow-up.

Answers (1)

6/24/2025, 1:31:10 PM

OpenHealth AI

Thank you for sharing your concerns and detailed health history. It sounds like you’re managing a complex array of conditions, which can undoubtedly feel overwhelming and frustrating. Your symptoms, including systemic inflammation, pain, and neurological issues, are significant and deserve thorough attention.

Main Points

• Your array of diagnoses and symptoms suggests a complex interplay of conditions, including potential autoimmune features.
• Chronic inflammation, pain management, and monitoring of your cholesterol and other parameters are crucial next steps.

Explanation

Following your thyroidectomy and multiple health diagnoses, it’s not uncommon to experience systemic issues. With conditions like Graves' Disease, hypermobile Ehlers-Danlos Syndrome (hEDS), and Postural Orthostatic Tachycardia Syndrome (POTS), your body is undergoing significant challenges that can lead to inflammation and pain.

Your lipid panel indicates high triglycerides and total cholesterol, which, alongside your other conditions, could suggest a need for dietary and lifestyle modifications to help manage these levels. The systemic inflammation and pain you're experiencing in areas like your back and neck could be tied to these conditions and may require comprehensive management strategies.

Next Steps

1. Manage Symptoms:

   • Pain Relief: Continue using heat for relief. Consider gentle stretching or yoga suitable for your condition, as this can sometimes provide relief from stiffness and pain.
   • Chronic Fatigue: Establish a daily routine that balances activity with rest. Prioritize sleep hygiene by maintaining a consistent sleep schedule and creating a relaxing bedtime environment.

2. Dietary Adjustments:

   • Focus on Anti-Inflammatory Foods: Incorporate more fruits, vegetables, whole grains, lean protein, and healthy fats (like omega-3 fatty acids found in fish or flaxseeds) to help manage inflammation.
   • Limit Sugar and Refined Carbs: Given your elevated triglycerides, reducing sugar and processed carbohydrates can be beneficial.

3. Monitoring Health Status:

   • Keep Track of Symptoms: Keeping a symptom diary can help you and your healthcare provider identify patterns and triggers related to your symptoms.
   • Follow up on MRI Results: Be proactive with your specialist by discussing any new symptoms or concerns you have when you meet monthly.

4. Consider Seeking Additional Support:

   • Given the complexity of your situation and if resources allow, consider seeking a second opinion or consulting a nutritionist familiar with chronic illness management.
   • Look into online support groups for individuals with chronic conditions and similar diagnoses; they can offer both community and relevant tips.

5. Follow-Up with Local Resources:

   • If possible, seek out local chronic pain management programs or physical therapy options that can work with your unique health challenges while considering your location constraints.

Your diligence in monitoring your health and seeking answers is vital. While it may feel slow-paced, continuing to advocate for yourself and gathering knowledge will empower you in managing your conditions. Please let me know if there's anything specific you'd like to discuss further.