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JLAA

752d

hi new here, my ? is my Sr ran my labs,my ACE ( Angiontensin Converting Enzyme) came in with a score of 82, which USUALLY means positive for Sarcoidosis.. however when they did my cat scan,it showed ABSOLUTELY NO INFLAMMATION OF ANY ORGANS,....SO my Dr is stumped... anybody else have this happen??,

Top reply
    • SammyD

      632d

      ACE levels can be elevated for heart issues, diabetic issues, and a few other things. Elevated ACE levels is not a Sarcoidosis indicator. That is a fallacy perpetuated by those uneducated in the world of Sarcoidosis. The ONLY way to diagnose Sarc is to do a biopsy and find cells that are either called "non-caseating" or "non-necrotizing" (different labs refer to the same condition with different terms) granulomas. Non-necrotizing/caseating means "not dying" and that is the key to a Sarc diagnosis VS any other granulomatus disease. All other granulomatus diseases have necrotizing/caseating granulomas. If you have skin rashes you think are psoriasis or eczema, get them biopsied. Most people don't think of the skin but it's really our largest organ. If you have chronic sinusitis without infection...have that checked. If they tell you you have fatty liver, insist on a biopsy because Sarc presents exactly the same on an image. So many "common" issues out there that are "assumed" to be something else. Even if no inflammation is seen, doesn't to mean it's not there. It's a defective immune system.

    • SammyD

      632d

      ACE levels can be elevated for heart issues, diabetic issues, and a few other things. Elevated ACE levels is not a Sarcoidosis indicator. That is a fallacy perpetuated by those uneducated in the world of Sarcoidosis. The ONLY way to diagnose Sarc is to do a biopsy and find cells that are either called "non-caseating" or "non-necrotizing" (different labs refer to the same condition with different terms) granulomas. Non-necrotizing/caseating means "not dying" and that is the key to a Sarc diagnosis VS any other granulomatus disease. All other granulomatus diseases have necrotizing/caseating granulomas. If you have skin rashes you think are psoriasis or eczema, get them biopsied. Most people don't think of the skin but it's really our largest organ. If you have chronic sinusitis without infection...have that checked. If they tell you you have fatty liver, insist on a biopsy because Sarc presents exactly the same on an image. So many "common" issues out there that are "assumed" to be something else. Even if no inflammation is seen, doesn't to mean it's not there. It's a defective immune system.

    • Cat1

      666d

      I was diagnosed with a lung biopsy. How do they know. Just because it wasn’t cancer. My ACE is low 28

    • JLAA

      751d

      Eyes are fine....I never heard of it before my ACE came back high....I'm trying to see what could mimic sarcoidosis....

      • Purplemoonchild

        738d

        @JLAA check into Sjogren's... mimics a lot if sarcoidosis symptoms... do you have an elevated ANA?

    • Debb

      751d

      Did they check your eyes? Lots of time that's where it shows up. Mine was found in my lungs on a scan they were doing for my heart. It was so weird; I had never even heard of sarcoidosis before!

    • Jenh

      751d

      My sarcoidosis was diagnosed from a biopsy of my lungs. I guess you’re saying they don’t know what to biopsy . I’ve never had my ACE checked, I’ve never heard of that.

      • kastou

        748d

        @Jenh same. My left lung was positive for sarcoidosis 2 months ago and I'm trying to understand what to expect

        • Jenh

          744d

          @kastou I’ve really had no symptoms since. When it was active I was extremely tired and I got many sinus infections. That was it. If you feel ok now, you’ll probably be ok

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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