Do you experience any of these symptoms?
Fatigue
Muscle and joint pain
Muscle weakness
Reduced exercise tolerance
Shortness of breath
Palpitations
Cognitive dysfunction (“brain fog”)
Headache
Sleep disturbance
Restless legs syndrome
Low mood/depression
Hair loss
Most of these symptoms can be caused directly by Sjogren’s. But you may not know that, in people with Sjogren's, iron deficiency (low iron stores) is an often-overlooked cause or contributor to these symptoms.
Screening can detect iron deficiency in its initial stages, allowing for timely treatment. Iron deficiency symptoms often precede anemia because iron is drained from other areas of the body before the red blood cells are impacted.
Iron does more than just transport oxygen in the blood. Iron supports vital functions like immune system health, heart function, muscle strength, brain and nerve function, and cellular energy production.
Why are people with Sjogren’s at increased risk for iron deficiency?
People with systemic inflammatory diseases like Sjogren’s absorb, store, and process iron differently. This reduces iron stores and makes iron less available to the body. Additionally, people with Sjogren’s often have difficulty absorbing iron and other nutrients because of gastritis, intestinal dysbiosis, medications, and comorbidities such as celiac disease and H pylori infection. Inadequate dietary iron and blood loss, especially from menstruation, contribute to iron depletion
My story illustrates the importance of identification and treatment of iron deficiency before it progresses to anemia.
For years, unrecognized iron deficiency was contributing to my fatigue, cognitive difficulties, exercise intolerance, restless legs, and more. Because routine blood tests had never shown anemia, everyone assumed my symptoms were entirely due to Sjogren’s. This all changed a decade ago, when my iron stores became so depleted I developed iron deficiency anemia and was finally treated.
While everyone is different, treatment of my iron deficiency with IV infusions significantly improves my exercise tolerance and takes the edge off cognitive and physical fatigue. Replenishing my iron stores completely resolves my restless legs, a maddening neurological condition that kept me up at night for years. I wish I had been diagnosed and treated sooner.
Treating iron deficiency can improve symptoms that were caused, at least in part, by low iron stores.
Clinicians may not know that iron deficiency is common in Sjogren’s and may mistakenly assume that symptoms are entirely caused by Sjogren's. Therefore, you may need to ask your primary care practitioner (PCP) or rheumatologist to screen for iron deficiency. Because low iron stores cause symptoms before anemia can be detected, blood tests for tests for anemia are not a good way to screen for iron deficiency.
Sjogren’s patients live with a high burden of disease. We must not overlook treatable conditions like iron deficiency that can improve quality of life.
How is iron deficiency diagnosed?
TESTS FOR IRON DEFICIENCY
A blood test for ferritin evaluates iron stores in the body. This is the main test that screens for iron deficiency.
A ferritin level below 100 ug/L usually indicates low iron stores in people with inflammatory diseases, whereas in healthy people a level below 30 ug/L indicates low iron stores (264).
My ferritin was below 10 ug/L when I was first diagnosed with iron deficiency anemia.
My threshold for iron deficiency appears to be 200 ug/L, based on my restless legs syndrome becoming active at levels below 170 ug/L, and exercise tolerance noticeably worsening below 150 ug/ L. Your threshold might be different.
Transferrin saturation (TSAT) indicates iron availability. A TSAT below 20% usually indicates iron deficiency. Once iron deficiency is diagnosed, ferritin alone is usually adequate for monitoring.
Serum iron levels do not measure iron stores. Serum iron levels alone should not be used to diagnose iron deficiency because values can fluctuate throughout the day. However, they are used to calculate TSAT (264).
Complete blood count (CBC) tests for anemia, which impacts the red blood cells. It also tests white blood cells and platelet counts. The red blood cell component of the CBC is often normal in iron deficiency. Prolonged iron deficiency is just one of many causes of anemia. When anemia is present, it is crucial to identify the underlying cause of the anemia so as to guide management.
How is iron deficiency treated?
In addition to addressing blood loss, dietary factors, and underlying conditions that contribute to anemia, iron may be replenished through supplementation or intravenous infusions.
NOTE: Do not take iron supplements unless advised by your clinician. Iron overload can damage your immune system and multiple organs including your brain.
Oral vs IV treatment
Many doctors will recommend oral therapy for 6-8 weeks and repeat blood tests and then check for a response. Others will recommend going directly to IV treatment in people who are unlikely to tolerate or absorb oral iron.
IV treatment
Many people with Sjogren’s, me included, do not tolerate oral iron, or absorb it well. IV iron can be given either as a weekly infusion of iron sucrose for 5 weeks or a one-time iron dextran infusion. While everyone is different, I prefer the weekly infusions because I do better with side effects.
Follow-up and monitoring
Many people with Sjogren’s require repeat treatments. My ferritin levels are checked every 2-3 months, allowing me to anticipate my next infusion. I usually need infusions every 1-1.5 years.
Self-advocacy tools
Misconception 1 - Your clinician does not think you are iron deficient because your ferritin is above the lab cutoff.
Reality: You are probably iron deficient if your ferritin is below 100 ug/L and you have Sjogren’s.
On the first page, under the section titled, “Diagnosis definition of iron deficiency.”, highlight the entire first paragraph starting with “Ferritin is an indicator… " and ending with, "ID based on the current literature.”
This paragraph explains why cutoff values for ferritin should be higher in people with chronic inflammation.
Misconception 2 - Your clinician does not think Sjogren’s is a systemic inflammatory disease and, therefore, does not think you are at increased risk of iron deficiency.
Reality: Many clinicians incorrectly view Sjogren’s as a dryness disease. Sjogren’s is a systemic inflammatory disease even if you have normal ESR and CRP
Review these blog posts and choose self-advocacy tools that address your situation.
Sjogren’s and Inflammation, Part II (especially helpful if your CRP and ESR are normal)
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