| Newly Diagnosed
After years of telling doctors something was wrong, here I am finally with a real diagnosis. I thought for the longest time it was Addison's disease or adrenal insufficiency, hypothyroidism and low testosterone. I knew something was wrong for years being fatigued all the time and achy, just felt ill a lot (in addition to anxiety/depression). I went on therapy for all those but after moving to a new city, a doctor took me off the adrenal replacement but I'm still on testosterone replacement and thyroid replacement. That was 7 years ago.
Fast forward to about 2 years ago, thought I was doing well until I started having chest pains and my anxiety came back. After several trips to the ER and EKGs, Echocardiogram and stress test, my heart is fine but this last ER visit last Friday they decided to check my lungs through CT scan and found bilateral lymphadenopathy. Then on Thursday had the bronchoscopy EBUS TBNA to rule out lymphoma and turns out its stage 1 sarcoidosis. The doctor also found bronchitis/possible pneumonia in my lungs so I'm on doxycycline for that since augmentin didn't work about a month ago.
I'm also iron deficient without anemia due to donating blood too often due to testosterone replacement elevating hematocrit/hemoglobin to dangerous levels.
So that's where I'm at. I'm trying to learn as much as I can about this as I got this sarcoidosis diagnosis last night. Is anyone else Stage 1 and what are your symptoms? I'm experiencing frequent chest pain which the doctor said is my lymph nodes just crowding the area in my chest. I've read low testosterone occurs in about 50% of patients so that's also me. But other than insomnia (easily treated with natural herbs and such) and anxiety (not so easily treatable with natural herbs), and hypertension without a known cause, that's it.
Can someone also help me understand the staging and resulting symptoms and prognosis? My doctor said if I'm stage 1, I'll never be stage 2 or anything and won't have any more symptoms than I do now, unless my lymph nodes grow more which a short course of steroids would fix. Anyone have any thoughts or support? I'm 33, so I don't know what all this means yet for the rest of my life. Thanks.
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