Fluctuations in Labs in HEDS: What Are Some of the Causes?

Hypermobile Ehlers-Danlos Syndrome (HEDS) is a connective tissue disorder that affects many systems in the body. People with HEDS often experience a wide range of symptoms, including joint hypermobility, chronic pain, and fatigue. Less commonly discussed but equally important are the fluctuations seen in laboratory values, especially liver and renal enzymes. These fluctuations can raise concerns for patients and healthcare providers alike. Understanding what causes these changes helps manage the condition better and avoid unnecessary alarm.

What Are Liver and Renal Enzymes?

Liver enzymes, such as alanine aminotransferase (ALT) and aspartate aminotransferase (AST), are proteins that help the liver perform its functions. Elevated levels often indicate liver stress or damage. Renal enzymes and markers, including creatinine and blood urea nitrogen (BUN), reflect kidney function. Changes in these values can signal kidney stress or impairment.

In people with HEDS, these enzyme levels can fluctuate more than expected. These variations do not always mean there is serious liver or kidney disease but may result from other factors related to the syndrome.

Why Do Enzyme Levels Fluctuate in HEDS?

1. Connective Tissue Fragility and Organ Stress

HEDS affects collagen, a key protein in connective tissue. Collagen supports blood vessels, organs, and skin. When collagen is fragile or abnormal, organs like the liver and kidneys may be more vulnerable to minor injuries or stress. This fragility can cause mild inflammation or temporary dysfunction, leading to enzyme fluctuations.

For example, fragile blood vessels in the liver may cause small leaks or bruising, raising liver enzymes temporarily without serious damage.

2. Autonomic Dysfunction and Blood Flow Changes

Many people with HEDS experience autonomic nervous system dysfunction, which affects how blood flows through the body. Poor regulation of blood pressure and circulation can reduce blood supply to organs like the liver and kidneys. This reduced blood flow can cause mild, temporary organ stress, reflected in enzyme changes.

Episodes of low blood pressure or pooling of blood in the legs can reduce kidney filtration efficiency, causing creatinine or BUN levels to rise temporarily.

3. Medication Effects

People with HEDS often take medications for pain, inflammation, or other symptoms. Some of these drugs can affect liver or kidney function. Nonsteroidal anti-inflammatory drugs (NSAIDs), commonly used for joint pain, can stress the kidneys and cause enzyme fluctuations.

It is important to review medications regularly with healthcare providers to identify any that might contribute to enzyme changes.

4. Recurrent Infections and Inflammation

HEDS can be associated with immune system irregularities, making infections more common. Infections, especially viral hepatitis or urinary tract infections, can cause liver or kidney enzyme elevations.

Even mild infections can trigger inflammation that affects organ function temporarily. Monitoring and treating infections promptly helps reduce enzyme fluctuations.

5. Nutritional and Metabolic Factors

People with HEDS sometimes have digestive issues that affect nutrient absorption. Poor nutrition or dehydration can impact kidney function and liver metabolism. For example, dehydration reduces kidney filtration, raising creatinine levels.

Metabolic imbalances like low blood sugar or electrolyte disturbances can also influence enzyme levels. Maintaining good hydration and nutrition supports stable organ function.

How to Manage Enzyme Fluctuations in HEDS

Regular Monitoring

Routine blood tests help track liver and kidney enzyme levels over time. This monitoring distinguishes between harmless fluctuations and signs of real organ damage.

Address Underlying Causes

Treating infections, adjusting medications, and managing autonomic symptoms can reduce enzyme variability. For example, switching from NSAIDs to safer pain relief options may protect kidney function.

Supportive Lifestyle Changes

• Stay well hydrated

• Maintain a balanced diet rich in vitamins and minerals

• Avoid alcohol and substances that stress the liver

• Manage stress and get adequate rest

  
  

These steps support overall organ health and reduce enzyme fluctuations.

Work Closely with Healthcare Providers

Because HEDS affects many body systems, a team approach is best. Rheumatologists, geneticists, nephrologists, and hepatologists can collaborate to interpret lab results and tailor care.

Fluctuations in liver and renal enzymes in people with HEDS often reflect the complex effects of connective tissue fragility, autonomic dysfunction, medications, infections, and metabolic factors. These changes do not always indicate serious organ damage but require careful evaluation.

Regular monitoring, addressing underlying causes, and supportive lifestyle habits help manage these fluctuations. Working closely with healthcare providers ensures the best approach to maintaining liver and kidney health in HEDS.

Understanding these causes empowers patients and clinicians to respond appropriately, reducing anxiety and improving quality of life. If you have HEDS and notice changes in your lab values, discuss them with your healthcare team to monitor what is causing the fluctuations in lab values in your case and see what if anything needs to be done to help control the fluctuations.

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