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Newly Diagnosed

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Old 03-25-2017, 06:48 AM   #1
Join Date: Jun 2016
Posts: 2
Green1234 HB User
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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Old 05-24-2017, 11:22 PM   #2
Join Date: Apr 2007
Location: Michigan
Posts: 450
hey19 HB User
Re: Newly Diagnosed

Hi! Just wanted you to know someone is out here reading this and also wondering. My son (28) was diagnosed about a year ago. Started with lots of coughing to the point where he cracked a rib! Never had the biopsy but all other tests. Doctor is considered one of the best in our area. He is, however, very conservative with treatment and I'm worried my son's condition will worsen without a more aggressive approach. He is fatigued quite a bit, can't do normal physical activity that other young guys can do, and now he has migraines. He also developed tremors in his hands about 20 years ago. I know I'm listing all these issues, but they are in themselves not that severe. He looks and seems like a pretty healthy guy overall. Most people wouldn't guess that he has sarcoidosis. Doctor has put him at Stage 1. As I say, he's a young man - and very independent --- so I'm not hearing many details from him, but I can certainly see when he's not feeling well. I'm frustrated and concerned. I hope by now you are getting some answers for your condition.

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