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How do you diagnose sarcoidosis?

Sometimes sarcoidosis is discovered by accident. For example, when a lung photo is taken during a medical examination. These patients often have few or no symptoms and rarely require treatment. However, most people report to a doctor with symptoms.

Symptom picture variability

People who do present to a doctor with symptoms have a very broad spectrum of complaints, which are usually also found in other diseases and are therefore not characteristic (not specific) of sarcoidosis. Together with the fact that sarcoidosis is rare, most doctors will not readily consider the possibility of sarcoidosis. As a result, the search is not specific (enough) to be able to make the correct diagnosis. In some cases it may therefore take years before the correct diagnosis is made.

It is thus extremely important to bring sarcoidosis to the attention of doctors and to keep doing so, so that the diagnosis can be made as quickly as possible!

Extensive testing

Even if the doctor does think of the possibility of ‘sarcoidosis,’ diagnosing most forms of sarcoidosis requires a fair amount of testing. This is because there is no blood test or scan that will immediately confirm sarcoidosis. Additional research, preferably to find actual granulomas, and to exclude other diseases is therefore still necessary. The nature and severity of the symptoms will determine which tests are required; You can find more information in the sections on specific manifestations.

An exception to this is Löfgren’s syndrome. This form of acute sarcoidosis does have a very specific symptom pattern, which is why a doctor’s line of thinking will immediately go in that direction.

Misdiagnosis

It is unfortunately still too common that people initially receive no diagnosis at all or an incorrect diagnosis, a so-called misdiagnosis, which means they are not treated correctly and in a timely manner. In the course of time we have heard quite a few misdiagnoses among our members: Non-Hodgkin’s, ME/CFS (chronic fatigue syndrome), Rheumatoid Arthritis, lung cancer, fibromyalgia, Lyme disease, Sjögren’s disease, juvenile rheumatism, malaria, TB, and of course, ‘exaggeritis.’

Do I have sarcoidosis?

We don’t know if it’s because of ‘House’ on TV or because people have been struggling for some time with vague symptoms that have a lot of impact but don’t lead to a diagnosis, but there seem to be a lot of people asking themselves, ‘Do I have sarcoidosis?’ We encounter this question very frequently, especially among people who have sarcoidosis in the family. The answer is a lot more complicated than the question.

As with any diagnosis, sarcoidosis is, of course, diagnosed in a doctor’s office. Usually that will be a pulmonologist, but since sarcoidosis is a multisystem-disease other medical specialists may also be involved. In any case, the diagnosis of sarcoidosis always requires several medical examinations; no blood test or scan can make the diagnosis in one go. Because the symptoms of sarcoidosis are not unique and can also occur with other conditions, these other conditions must be excluded as well.

Because sarcoidosis is a rare disease that can manifest itself in a variety of ways, it is not easy for a physician to diagnose. Nevertheless, there are combinations of symptoms and conditions that can point in the direction of sarcoidosis. For example, sarcoidosis has been shown to be more common in certain families. The current idea is that people with a hereditary (genetic) predisposition to sarcoidosis develop sarcoidosis through exposure to (one or more) certain substances. Such substances are called triggers. Examples of possible triggers are bacteria, viruses, or occupational substances.

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