Study points to overlooked ENT problems in adults with sarcoidosis

Large U.S. study found higher odds of several recorded head and neck diagnoses

Written by Steve Bryson, PhD |

Illustration of a woman walking with red shading around her nose and upper cheek, suggesting sinus inflammation.

Ear, nose, and throat (ENT) conditions may be underdiagnosed among adults with sarcoidosis, a large U.S. database study suggests.

Research showed that sarcoidosis patients had more than 45% higher odds of having recorded diagnoses of sinus, swallowing, voice, and cranial nerve-related conditions than their matched peers without sarcoidosis. The sinuses are the air-filled cavities in the bones of the skull around the nose.

“Sarcoidosis of the upper airway is likely underdiagnosed and consequently undertreated, necessitating greater awareness and further exploration of the [cause] of upper airway symptoms in patients with sarcoidosis,” the researchers wrote.

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Study examines overlooked ENT diagnoses

The findings were described in the study “Head and Neck Manifestations in Sarcoidosis: An All of Us Research Program Matched Case-Control Study,” published in OTO Open.

In sarcoidosis, small clusters of immune cells called granulomas form in tissues and organs throughout the body. Over time, these clusters may harden or become calcified and permanently damage affected tissues.

Sarcoidosis mainly affects the lungs and nearby lymph nodes, which are part of the immune system, but it can also involve the skin, joints, eyes, liver, nervous system, and kidneys. ENT manifestations have been reported in about 10% to 15% of people with sarcoidosis and may involve the sinuses, salivary glands, and upper airways.

ENT symptoms can be difficult to distinguish from those caused by other chronic conditions and may therefore go unreported or unrecognized.

To investigate, researchers at Rutgers New Jersey Medical School analyzed electronic medical records from the All of Us Research Program, a large U.S. health database. They examined whether people with sarcoidosis were more likely to have recorded ENT diagnoses.

The team compared 2,446 adults with sarcoidosis with 9,783 controls without the disease who were matched by age, sex, race, and ethnicity.

At least one ENT diagnosis was documented in 53.5% of adults with sarcoidosis, nearly twice the 27.9% recorded among controls.

Sinus, swallowing and voice problems stand out

Sinus and nasal diagnoses were significantly more common among people with sarcoidosis. Rates were higher for rhinitis, or chronic inflammation of the nasal passages, 16.27% vs. 5.79%; sinusitis, or chronic sinus inflammation, 22.77% vs. 10.19%; and nosebleeds, 8.01% vs. 3.34%.

Swallowing and voice diagnoses were also about twice as common among people with sarcoidosis. Dysphagia, or difficulty swallowing, was recorded in 23.47% vs. 10.54%, while dysphonia, which includes voice changes such as hoarseness, was recorded in 9.57% vs. 3.91%.

Conditions affecting the cranial nerves, which help control sensation and movement in the head and face, were recorded in 14.4% of people with sarcoidosis vs. 5.9% of controls.

In adjusted analyses, problems involving the optic nerve, which carries visual information; the trigeminal nerve, which supports facial sensation and chewing; and the facial nerve, which controls facial movement and helps with taste, were more common among people with sarcoidosis.

Unlike most other ENT findings, salivary gland diagnoses were slightly less common in sarcoidosis patients than in controls, 2.25% vs. 2.46%. In adjusted analyses, sarcoidosis patients had significantly lower odds of a recorded salivary gland diagnosis, a finding that “raises questions about whether sarcoidosis affects salivary glands differently than other [body-wide] diseases or if underreporting plays a role,” the team wrote.

Impacted cerumen, a buildup of earwax not related to sarcoidosis, was also diagnosed significantly less often in the sarcoidosis group, 4.33% vs. 6.2%.

Statistical analyses adjusted for smoking status and other coexisting medical conditions showed that people with sarcoidosis had at least 45% higher odds of several of the previously identified ENT diagnoses compared with controls. The highest odds, at about twofold, were found for chronic nasal inflammation.

Low procedure rates raise underdiagnosis concerns

Researchers also assessed how often patients underwent procedures that directly visualized the nasal passages, called nasal endoscopy, or the voice box, called laryngoscopy. Even though sarcoidosis patients were significantly more likely to undergo these procedures than controls, the overall recorded rates remained low.

Across both study groups, laryngoscopy was recorded for 30.8% of patients with voice changes, while nasal endoscopy was recorded for 17.7% of those with chronic nasal or sinus inflammation. The researchers said the low rates may point to limited referrals for specialist evaluation, although some procedures may simply have been missing from the medical records.

“We suspect that ENT manifestations are not only under-reported but also under-diagnosed,” the researchers concluded. The findings underscore “the role of [ENT specialists] in the multidisciplinary care of sarcoidosis and the need for heightened awareness and early intervention to improve patient outcomes.”

The researchers called for studies that follow patients over time to better understand how ENT conditions develop and progress in people with sarcoidosis.

Judy Stewart avatar

Judy Stewart

Question in these studies did they find that hearing loss could be also over looked with a person with Sarcoidosis

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Myrna L Carpenter avatar

Myrna L Carpenter

I have sinus issues as well and I have been dealing with Sarcoidosis for approximately 35 years or more! This article mentioned some other symptoms that I too have experienced in my life.

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Michelle R. Brown avatar

Michelle R. Brown

I have had multi system sarcoidosis diagnosed for no less than 10 years. I have verbalized swallowing difficulties for a few years. Had an endoscopy r/t finding of findings on PET/CT of circumferential FDG uptake in distal esophagus and an endoscopy but no one can find any problems except "gastritis". No other symptoms of gastritis and am on Prilosec.

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Jennifer F. avatar

Jennifer F.

I am finally getting over a sarcoidosis flare in my upper air ways and voice box causing hoarseness, trouble swallowing, and swelling. It lasted about 3 days this time. A few years ago, I went through a procedure to look for sarcoidosis during a scope and that GI doctor misdiagnosed acid reflux. My sarcoidosis doctor looked at the biopsy results and was able to determine it was probably sarcoidosis related. I’m glad research is finally showing that sarcoidosis can cause these issues. My manager would not accommodate me during my first flare of this kind and I was in misery for weeks until the Endoscopy could be scheduled and finally my sarcoidosis doctor diagnosing me properly. I have sarcoidosis in my liver, lymph nodes, lungs, joints, and possibly spleen. I was diagnosed in 2009 by multiple biopsies.

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Saras Pillay avatar

Saras Pillay

I was diagnosed with sarcoidis in my late twenties. I was treated with cortisone medication and nasal spray. I also had nasal polyps removed. I'm 75/6 and have issues with my lung function.

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Saras Pillay avatar

Saras Pillay

I was diagnosed with sarcoidis in my late twenties. I was treated with cortisone medication and nasal spray. I also had nasal polyps removed. I'm 75/6 and have issues with my lung function. It's much more difficult in winter.

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Mary Simone Brammer avatar

Mary Simone Brammer

I have had tissue biopsy and have sarcoidosis on one side of my nose. I have had chronic sinus problems for years. Several surgeries. I now have no smell or taste. Dry mouth & eyes. I see an ENT but not really any specific treatment for sarcoidosis . I was diagnosed in 2008 with sarcoid.

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