Screenings if you have sarcoidosis: checks guidance lists

The main guidance

The American Thoracic Society (ATS) published a clinical practice guideline on the diagnosis and detection of sarcoidosis in 2020. It asks which tests should be used to look for sarcoidosis in the eyes, kidneys, liver, blood, calcium balance and heart in people without symptoms in those organs, and it adds best practice advice on which tests to repeat. Almost all of its recommendations rest on very low quality evidence. (ATS guideline, 2020) In 2022 a task force of the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) published a statement on screening for, and diagnosing, pulmonary hypertension linked to sarcoidosis. (WASOG statement, 2022) In the UK, the NHS says doctors monitor the condition with regular X-rays, breathing tests and blood tests. (NHS)

Checks the guidance lists for adults with sarcoidosis

Check	Looks for	At diagnosis	After a normal baseline	Source
Eye exam	Eye involvement such as uveitis	Yes, even without eye symptoms	Only with new eye symptoms	(ATS guideline, 2020)
ECG	Possible heart involvement	Yes, even without heart symptoms	With new heart symptoms or ECG changes	(ATS guideline, 2020)
Serum calcium	High calcium	Yes (strong recommendation)	Yearly	(ATS guideline, 2020)
Serum creatinine	Kidney involvement	Yes	Yearly	(ATS guideline, 2020)
Alkaline phosphatase	Liver involvement	Yes	Yearly	(ATS guideline, 2020)
Complete blood count	Blood count changes	Yes	No interval given	(ATS guideline, 2020)
Echocardiogram	Pulmonary hypertension	Not routine; when it is suspected	When it is suspected	(ATS guideline, 2020)(WASOG statement, 2022)
Chest X-ray, breathing tests, blood tests	Whether the condition is better or worse	Part of diagnosis	Regularly; no fixed interval given	(NHS)

Eyes

Sarcoidosis can affect almost any part of the eye. Uveitis and retinal involvement are the most concerning because they can lead to blindness and are not usually seen on a routine physical exam. For people without eye symptoms, the ATS guideline suggests a baseline eye exam to look for eye involvement. After a normal baseline it does not list routine repeat exams; it lists a new exam for changes in vision such as floaters, blurring or loss of part of the visual field, or for sustained eye pain, light sensitivity or redness. (ATS guideline, 2020) See what to expect at an eye exam.

Heart

For people with sarcoidosis outside the heart and no heart symptoms or signs, the ATS guideline suggests a baseline ECG to look for possible heart involvement, and suggests not doing a routine echocardiogram or 24-hour Holter monitor; it says these can be considered case by case. When heart involvement is suspected, it suggests a heart MRI, or a dedicated heart PET scan where MRI is not available. After a normal baseline, it lists heart testing for chest pain, palpitations, fainting or near fainting, a heart rate that stays slow or fast, breathlessness out of proportion to the lung disease, or new ECG findings. (ATS guideline, 2020) See an ECG at a checkup.

Calcium, kidneys, liver and blood count

The ATS guideline recommends a baseline serum calcium test for people without symptoms or signs of high calcium, and suggests baseline serum creatinine to look for kidney involvement, baseline alkaline phosphatase to look for liver involvement and a baseline complete blood count. It makes no recommendation for or against routine liver transaminase (ALT and AST) tests. Its best practice table lists yearly calcium, creatinine and alkaline phosphatase after a normal baseline, because these problems are often silent, and notes that about 23 percent of people develop a new organ involvement within 3 years. It also lists calcium and kidney tests for kidney stones or kidney failure. (ATS guideline, 2020) MedlinePlus lists kidney stones from high urine calcium as a possible complication. (MedlinePlus) See kidney test results, liver function test results and complete blood count results.

Lungs and pulmonary hypertension

The NHS says doctors check whether the condition is getting better or worse with regular X-rays, breathing tests and blood tests; neither it nor the ATS guideline sets a fixed interval for lung function tests. (NHS)(ATS guideline, 2020) Pulmonary hypertension, high blood pressure in the lung arteries, occurs in 5 to 20 percent of people seen in sarcoidosis clinics. When it is suspected, the ATS guideline suggests an echocardiogram first, with right heart catheterization to confirm or rule it out if the echocardiogram suggests it. Signs that raise suspicion include chest pain or fainting on exertion, a shorter 6-minute walk, oxygen levels dropping with exercise, a low gas transfer test, a wide pulmonary artery on CT, a raised BNP blood test and lung fibrosis. (ATS guideline, 2020) The WASOG task force agreed that an echocardiogram should follow when one or more of its listed factors is present, such as fibrosis covering more than 20 percent of the lungs on high-resolution CT, a widened pulmonary artery, an enlarged right ventricle on CT, an FVC under 60 percent or a DLCO under 50 percent of predicted, and also when breathlessness class worsens, the 6-minute walk distance falls by more than 20 percent or the DLCO falls by more than 15 percent without a change in lung volumes. It says when to repeat screening still needs to be defined. (WASOG statement, 2022) See spirometry and COPD screening.

When to contact a provider

MedlinePlus, sarcoidosis, when to contact a medical professional: (MedlinePlus)

Contact your provider promptly if you have:

Difficulty breathing
Irregular heartbeat
Vision changes
Other symptoms of this disorder

Routine age-based screening

Sarcoidosis checks are added to, not instead of, the routine screenings for your age and sex; see screenings by age and gender.

Where they differ:

Echocardiogram. The ATS guideline suggests no routine echocardiogram at diagnosis and one only when pulmonary hypertension is suspected; the WASOG statement names specific CT and lung function findings, such as fibrosis over 20 percent or a DLCO under 50 percent of predicted, as reasons to do one even before symptoms. (ATS guideline, 2020)(WASOG statement, 2022)
Lung monitoring. The NHS describes regular X-rays and breathing tests; the ATS detection guideline does not set a lung function schedule. (NHS)(ATS guideline, 2020)
Strength of advice. Within the ATS guideline, only the baseline calcium test is a strong recommendation; the eye exam, ECG, creatinine, alkaline phosphatase and blood count are conditional, and liver transaminases get no recommendation. (ATS guideline, 2020)

Your doctor decides what your result means for you.

Questions people ask

What checks are done when sarcoidosis is diagnosed?

The 2020 American Thoracic Society guideline suggests a baseline eye exam, an ECG, and blood tests for calcium, creatinine, alkaline phosphatase and a complete blood count, even when there are no symptoms in those organs. Of these, only the calcium test is a strong recommendation; the others are conditional. (ATS guideline, 2020)

Which tests are repeated every year?

After a normal baseline, the ATS guideline lists yearly serum calcium, creatinine and alkaline phosphatase, because problems with calcium, the kidneys and the liver often cause no symptoms. It notes that about 23 percent of people develop a new organ involvement within 3 years. (ATS guideline, 2020)

Is the eye exam repeated every year?

Not routinely, in the ATS guideline. After a normal baseline exam, it lists a new eye exam when there are changes in vision such as floaters, blurring or loss of part of the visual field, or sustained eye pain, light sensitivity or redness. (ATS guideline, 2020)

Is a heart scan part of routine screening?

The ATS guideline suggests a baseline ECG for people without heart symptoms, and suggests not doing a routine echocardiogram or 24-hour Holter monitor, which can be considered case by case. A heart MRI is suggested when heart involvement is suspected. (ATS guideline, 2020)

When is pulmonary hypertension checked?

The ATS guideline suggests an echocardiogram when pulmonary hypertension is suspected. The 2022 WASOG statement lists signs that should lead to one, such as lung fibrosis on a CT scan, an enlarged pulmonary artery, low lung function or gas transfer results, or worsening breathlessness or walk test results. (ATS guideline, 2020) (WASOG statement, 2022)