Desperate for Answers: A Healthcare Journey
I've consulted with nine different physicians, yet none seem able to understand my condition, and they're reluctant to refer me elsewhere. Living in a rural area, my access to specialized medical services is quite limited. Bear with me, as this is going to be a detailed account. I am a 22-year-old woman weighing 115 pounds, currently diagnosed with several conditions: rheumatoid arthritis, hypermobility, osteoporosis, postural orthostatic tachycardia syndrome (POTS), and fibromyalgia. My medication regimen includes humira, methotrexate, folic acid, vitamin D, weekly vitamin B12 injections, pregabalin, meloxicam, hydroxychloroquine, prednisone as necessary, ondansetron, and prozac, along with midodrine. Currently, I'm facing significant issues with bone health; I've experienced considerable bone loss, particularly in my hips, and I'm noticing deformities in my sternum that are becoming lumpy. A recent CT scan of my chest returned normal results. In my pursuit of answers, I consulted with an endocrinologist who performed numerous tests but was unable to provide clarity; they seemed to have run out of options. Recent lab results showed an elevated intact parathyroid hormone (PTH) level at 85, yet the reason remains a mystery. Interestingly, my calcium levels fall within the normal range, which I can share if needed. Most tests returned normal results, with the exception of slight variations—alpha-1 globulin at 0.4 and gamma globulin at 0.7. My Glomerular Filtration Rate (GFR) is normal, and the celiac disease panel did not indicate any issues. Some test results teetered on the edge of abnormal but ultimately remained in the acceptable limits, and I'm unclear how significant this might be. In addition to these issues, I experience debilitating pain and difficulty swallowing. On a scale of 10 for pain, I hover around a 7 with medication and an 8 without. The discomfort primarily resides in my hips, neck, chest, and knees. My digestion is slow, the reason for which is still uncertain. Notably, my swallowing difficulties persisted even after going four days without food. Fatigue is overwhelming—I'm only alert for about five hours daily, and when I do sleep, I awaken every 20 minutes. I've also noticed changes in my nails, which are separating from the skin, along with hair loss, numbness in my extremities, weakness, confusion, and bouts of brain fog. Small bumps and blisters have appeared on my hands, migraines have manifested with symptoms resembling those of a stroke, and despite managing typical migraines, I notice increased irritability. Dental pain also contributes to my struggle, particularly worsening during the night. My vitamin D levels plummet when I'm not on medication, and I'm severely deficient in vitamin B12 for reasons that remain unclear. Since contracting COVID more than a year ago, my rheumatoid arthritis has significantly deteriorated. Shockingly, I've lost 10 pounds over the past month even though my eating habits have increased. If you require further details or have specific questions, please feel free to ask; I may have overlooked some information as I am rather fatigued. I’ll update the comments with any additional thoughts. I understand I’m making a significant plea here, but I truly need guidance and support during this crisis. Any information or advice you can offer would be immensely appreciated. I want to express my heartfelt thanks for taking the time to read my concerns.
Answers (1)
8/23/2025, 4:41:55 AM
OpenHealth AI
Thank you for sharing your comprehensive healthcare journey; it sounds incredibly challenging and frustrating to navigate. Given your complex situation with multiple chronic conditions and persistent symptoms, let's focus on identifying steps you may take to help alleviate some of your concerns.
Main Points:
- You have multiple serious health issues, including elevated PTH levels and significant pain.
- There are concerning symptoms such as bone loss, swallowing difficulties, and fatigue.
- You need practical strategies to manage your symptoms and improve your quality of life.
Explanation:
Your elevated parathyroid hormone (PTH) level, combined with normal calcium levels, can suggest possible secondary hyperparathyroidism, which may arise from vitamin D deficiency or other underlying issues. Your significant bone loss, chronic pain, and the range of symptoms you're experiencing, from gastrointestinal difficulties to neurological concerns, point to a complex interplay of your conditions and medications.
Symptoms such as pain, fatigue, and digestive issues can often lead to compounded distress, making it crucial to address both physical and mental health concurrently. Also, your recent weight loss, difficulty swallowing, and symptoms of brain fog suggest that close monitoring and a holistic approach may be beneficial.
Next Steps:
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Track Your Symptoms: Maintain a symptom diary that records your pain levels, fatigue, digestive issues, and any new symptoms. This can help identify patterns and triggers, and provide insight for future consultations.
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Nutrition & Supplements:
- Ensure you are taking your vitamin D and vitamin B12 supplements as directed. Contact a pharmacist or nutritionist to discuss the appropriate dosages and whether any adjustments are necessary.
- Consider incorporating high-calcium foods and protein into your diet to support bone health, unless contraindicated by your healthcare team.
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Pain Management: Explore non-pharmacological approaches to pain relief such as:
- Physical Therapy: Gentle exercises to strengthen muscles and improve mobility without stressing your bones and joints.
- Mind-Body Techniques: Practices such as mindfulness, yoga, or cognitive-behavioral strategies may help with managing pain and fatigue.
- Heat and Cold Therapy: Use heating pads or cold packs to relieve pain in specific areas.
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Routine Follow-Ups: If access to specialists is limited in your area, consider telemedicine options for consultations with endocrinologists or rheumatologists who can offer insights on managing your conditions, especially your elevated PTH and its implications.
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Manage Fatigue: Prioritize rest and balance activity with periods of relaxation. Focus on sleep hygiene practices to improve the quality of your sleep, such as a consistent sleep schedule, a dark room, and reducing screen time before bed.
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Mental Health Support: Given the overwhelming nature of your symptoms, consider seeking support through therapy or support groups for chronic illness. This can provide emotional relief and coping strategies.
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Advocate for Yourself: Since you've seen multiple physicians without satisfactory answers, consider preparing a concise summary of your symptoms and medical history to present to your healthcare providers. This can aid in better communication and potentially lead to more directed investigations.
If you continue to feel unwell or your symptoms worsen, don’t hesitate to reaffirm your concerns with your healthcare provider. You're taking significant steps toward your health, and it's important to continue seeking the support you need. Please let me know if you have other specific questions or need further assistance.
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