Getting nowhere with doctors - any ideas?
I feel sick all of the time. The doctors can’t give me a diagnosis. I’m seeing if anyone here recognizes these symptoms or a pattern.
Core Problem (2+ years):
- Chronic flu-like myalgias
- Severe fatigue with post-exertional worsening (exercise consistently exacerbates symptoms, never improves them)
- Significant exercise intolerance
No meaningful response to standard therapies.
Persistent hyperandrogenemia (TT 1000–1280, elevated free T despite high SHBG) + elevated CK + post-exertional myalgia/fatigue – normal EMG, MRI, muscle biopsy – no exogenous androgens
Demographics:
- Adult male, previously active
- No history of testosterone, anabolic steroids, SARMs, or hormone use
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Key Objective Findings:
- Creatine kinase (CK): persistently elevated (peaks ~642), including at rest
- Total testosterone: persistently elevated 1000–1280 ng/dL over >2 years
- Free testosterone: elevated (~21.65 ng/dL)
- SHBG: elevated (~61 nmol/L)
- Prolactin: mildly elevated (~17.6)
- RBC: ~5.88 x10⁶/µL
- Hematocrit: ~50–51.5%
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Normal / Negative Workup:
- Thyroid panel: normal
- EMG: normal
- Muscle biopsy (deltoid): normal
- Brain MRIs (multiple): normal
- Genetic testing: unrevealing
- Ferritin and routine labs: normal
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Symptoms NOT Present / Clarifications:
- Normal libido despite high testosterone
- No exogenous androgen exposure
- No obvious clinical signs of androgen excess
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Treatments Tried (No Benefit):
- Duloxetine
- Gabapentin
- Low-dose naltrexone (LDN)
- Exercise → consistently worsens symptoms
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Why This Seems Atypical:
- Persistent CK elevation + post-exertional worsening strongly suggests underlying muscle pathology despite normal EMG and biopsy
- True hyperandrogenemia (elevated total + free T even with elevated SHBG) without exogenous source is unexplained
- Mild hyperprolactinemia raises possible pituitary axis involvement
- Borderline polycythemia may be secondary to androgen excess