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Sarcoidosis

Should I see an expert in sarcoidosis?

03/27/2006

Question:

I am 49 years old and when I was around 10, I was diagnosed with sarcoidosis. I do not recall what treatment I was given but I remember I had an enlarged lymph node in my lungs and also my mother said that the X rays showed shadows. I recall losing a lot of weight and feeling so exhausted I could not walk up a flight of stairs, as well as running a low grade fever for months. I had a lot of X rays and daily shots for many months but I do not recall anything else, except that my mother said years later that I had completely recovered. My parents and the doctor who treated me are now dead and I cannot retrieve any other information about my disease or treatment. I was in good health for many years till about two years ago, when I started experiencing extreme exhaustion. I saw a doctor who run blood tests. I had anemia (moderate) and low white cell count, but not severe. I also developed a recurrent rash (red/purple raised patches) in my hands and numbness in one arm. I began gaining weight at an alarming rate and sometimes I felt as if my lymph nodes in the groin and armpits swelled periodically. I also had floating black spots in my vision. I had periods of time when I felt fine and some other times I felt exhausted. I also felt as if I had an enlarged spleen, but this would also come and go. Just for the past two months I developed serious swelling of my face, especially around the nose and eyes that felt like hard bumps. My eyelids swelled enormously, particularly one. Other days the swelling was around my mouth and cheeks. At one point my face looked as if I had hypothyroidism and I gained at least 25 lbs suddenly, despite eating very little. I felt extremely tired and sometimes like I was going to faint. I saw a doctor who run a blood test. The tests showed mild anemia, elevated cholesterol (211 but the HDL cholesterol was 60) RDW test was out of range (high) and my TSH was 3.56, which although not out of range it appears high with respect to the new TSH standards. The doctor also run ANA, Double strand DNA, hematocrit electrophosphoresis, which all came back negative. He also run a thyroid panel and this time my TSH was 1.76, total T4 and T7 in the middle range and a T3 uptake was 28 (range 22-35). In the meantime my lymph nodes in the neck swelled, one eye lid swelled and I developed a bright red raised rash in my hand. I also felt shortness of breath and a tight sensation in my chest. It lasted a few days and dissapeared. I also felt periodic sweeling in the groin area. I felt so tired that I went to another doctor for a second opinion. This doctor felt my neck and said my thyroid felt borderline and she could not understand the discrepancy in the TSH values. She is running a new TSH panel, including antibodies, a test for Cushing Syndrome and an ACE test for sarcoidosis. She also ordered an X ray of the lungs. I am sorry for the long explanation but somehow I feel the doctors are not really listening to my symptoms when I tell them. My question is, since I had sarcoidosis when I was a child, could it be that all these symptoms are related to a flare up of the disease? I understand that the doctors are trying to rule out other diseases, but is it possible that all this periodic swelling is due to the disease or the disease affecting some organs periodically? I do not have the new tests results yet but in case they came back negative, do they rule out active sarcoidosis? Should I see a doctor specialized in this disease? I would appreciate your opinion.

Answer:

Dear Sir or Madam,

Your history is not inconsistent with chronically active sarcoidosis. Most experts would agree that you should follow up with a physician who is experienced with the management of sarcoidosis at least once a year and more frequently as needed to manage the disease. Depending on your location, regional sarcoidosis experts may have different medical backgrounds. Most sarcoidosis patients are managed by pulmonologists (lung specialists), rheumatologists (joint disease experts), dermatologists (if skin disease is the major concern) or hematologists (blood disease experts)...and in some cases more than one expert becomes involved in the care of the sarcoidosis patient. Most general practitioners do not have enough experience with sarcoidosis patients to manage them without assistance. I hope this answers your queries.

For more information:

Go to the Sarcoidosis health topic, where you can:

Response by:

Elliott D Crouser, MD Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University