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Vision loss, rash, bulging eye, high cortisol levels
Hi everyone, I’m reaching out because I’m really hoping to connect with others who might share a similar experience.
Over the past few years, I’ve had on-and-off vision disturbances in my right eye, which had a central retinal vein occlusion (CRVO) a few years ago. More recently, that same eye has started to bulge—again, with no known cause. Today, I was told that this eye is starting to show signs of limited ocular movement, as I am unable to fully look up.
I've seen two rheumatologists. Both say I’m otherwise healthy but noted a positive ANA with both speckled and homogeneous patterns. My titers increased from 1:160 to 1:640 in under 8 weeks, yet I was still told I don’t have an autoimmune disease.
My labs also recently showed extremely high cortisol levels, and I have other odd symptoms—like needing repeat surgery just one year after having repairs for every prolapse there seems to be. My body doesn’t seem to be healing the way it should, and I feel like something isn't right.
I have my first appointment at the Mayo Clinic soon, and I’m hoping to finally get answers. In the meantime, I’d love to hear from anyone who had:
-Positive ANA with speckled/homogeneous patterns
-High titers but no clear diagnosis
-Eye bulging after CRVO
-other complex systemic symptoms with no clear answers
-What were your ANA titers when you got diagnosed? Did you have similar experiences?
Thanks so much in advance—your input means a lot 💙
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@m4d3c2j1
Have you seen an endocrinologist to check for Graves Disease or Cushing's Disease? Have you considered a second opinion from a different rheumatologist and evaluation by a hematologist/immunologist?
Here is what AI summarized:
Understanding the Symptoms: Possible Conditions
You have listed several medical symptoms and test results, which can be indicative of various underlying conditions. Here's a breakdown of each aspect:
Positive ANA with Speckled/Homogeneous Patterns
A positive antinuclear antibody (ANA) test with speckled or homogeneous patterns typically suggests the presence of an autoimmune condition. Some common associations include:
Systemic Lupus Erythematosus (SLE): Often presents with a variety of systemic symptoms.
Mixed Connective Tissue Disease (MCTD): A condition that features traits of different autoimmune diseases.
Sjögren's Syndrome and Scleroderma: Other autoimmune disorders associated with positive ANA.
High titers can indicate a more significant autoimmune process, but they are not diagnostic on their own.
Eye Bulging after CRVO
Central Retinal Vein Occlusion (CRVO) can result in various ocular symptoms, including:
Vision Changes: Blurred vision or sudden loss of sight.
Eye Bulging (Exophthalmos): This may indicate additional issues, possibly related to autoimmune conditions like Graves' disease or local orbital disorders.
It's essential to consult an eye specialist who can assess these symptoms comprehensively.
Complex Systemic Symptoms
The presence of other complex systemic symptoms—including fatigue, joint pain, skin rashes, or organ-specific symptoms—combined with your positive ANA and CRVO, could be indicative of:
Autoimmune disorders: Conditions like SLE, Rheumatoid Arthritis, or Vasculitis often present with diverse symptoms affecting multiple systems.
Still’s Disease or other inflammatory conditions: These can also create systemic challenges without a clear diagnosis.
Testing for other specific antibodies, inflammatory markers, or imaging studies may provide further insights.
High Cortisol Levels: Implications
The presence of high cortisol levels alongside your other symptoms adds another layer to the potential diagnoses. Here's how it connects to the previously mentioned factors:
Stress Response and Autoimmunity
Elevated cortisol levels are often associated with:
Chronic Stress: This can lead to ongoing inflammation and may exacerbate autoimmune conditions.
Cushing's Syndrome: A condition characterized by excess cortisol production, possibly affecting various organs and systems, leading to symptoms like weight gain, bruising, or fatigue.
The combination of high cortisol with a positive ANA can suggest an autoimmune disorder where stress plays a significant role.
Interaction with CRVO
High cortisol levels may also affect vascular health, potentially contributing to conditions like:
Retinal Vein Occlusion: Stress and underlying hormonal imbalances can increase the risk of vascular events, including CRVO.
**Potential for Exophthalmos: If there are concurrent issues like Graves' disease, high cortisol can influence the severity or progression of ocular symptoms.
Systemic Symptoms Revisited
In the context of complex systemic symptoms:
Inflammation: High cortisol might mask inflammation, complicating the diagnostic process.
Autoimmune Disease Flare-ups: The chronic nature of elevated cortisol could trigger or worsen underlying autoimmune activity, leading to various systemic issues.
Discussion and Next Steps
Given this complexity, it's crucial to work with your healthcare provider to explore the underlying causes of both the high cortisol and the positive ANA. They may consider:
Endocrine Evaluations: To assess for conditions like Cushing's syndrome.
Further Testing: Such as additional antibody panels, imaging studies, or hormonal assays.