Do You Think It's Related?

Doctors are discovering what many hepatitis patients have known all along: Not all symptoms of hepatitis C come from your liver.

By: Liz Webb

"I’ve had pain in my legs, arms, hands and just about everywhere. ... I was diagnosed two months ago with fibromyalgia and myofascial pain syndrome. …My liver enzymes are normal. ... Do you think all these problems could be caused by the hepatitis? Does that mean that it is mimicking fibromyalgia or has it caused it to occur? Is it possible to have all these symptoms and yet have fairly normal liver enzymes?”

            Thanks, B.

Over the past six years, similar questions have been posed to me by hepatitis C patients thousands of times. Too often, their doctors tell them their symptoms and other medical conditions are not related to hepatitis C, which causes frustration and confusion for patients. The fact that so many patients report similar symptoms and that a multitude of research has shown a remarkable number of Hepatitis C Virus patients with other conditions, makes it clear that there is more to the relation between these conditions than just coincidence.

In her book Hepatitis C - A Personal Guide To Good Health, Beth Ann Petro Roybal writes, “Certain symptoms, such as itchy skin and jaundice, are directly caused by liver damage brought on by Hepatitis C Virus. ... Symptoms such as chronic fatigue may not be caused by liver damage per se, but may be a result of Hepatitis C Virus’s assault on the immune system. ... Some people with hepatitis C also develop other conditions as a result of their damaged immune system. Some of these conditions include mixed cryoglobulinemia, rheumatoid arthritis, lichen planus and glomerulonephritis (kidney disease).”

Matthew Dolan, citing several studies in his book The Hepatitis C Handbook, backs up this claim. Dolan points to a study by Christian Stassburg and Michael Manns in Viral Hepatitis Review that noted: “Chronic hepatitis C infection has been found to be associated with an array of autoimmune disease including … autoimmune thyroid disease, autoimmune hepatitis, porphyria cutanea tarda, Sjögren’s syndrome, etc. This means that immune stimulants such as interferon may cause more problems in patients with autoimmune symptoms.”

With the many studies and papers associating autoimmune diseases in patients with Hepatitis C Virus, why has it been so difficult to be diagnosed and treated for such illnesses? Dolan writes, “Patients will find that they are experiencing symptoms that specialists would not normally expect given a particular set of liver function test results. ... Patients who present without clear signs of liver disease and with low or undetectable virus can experience (diagnostic and treatment) problems; doctors may often be unwilling to accept that such patients are experiencing debilitating symptoms.”

With hepatitis C’s reputation of being only a liver disease, these overlapping autoimmune conditions may complicate the potential treatments of Hepatitis C Virus, Strassburg and Manns noted, and cause confusion for the patient as well as their doctor. 

The Lymphatic Connection

The lymphatic system — a major component of our overall immune system — is key in aiding our bodies to fight off viruses and infections. A subsystem of the circulatory system consisting of a complex network of vessels, tissues and organs, the lymphatic system helps defend the body against infection by supplying disease-fighting cells — called lymphocytes. The lymphatic system also helps maintain fluid balance in the body by collecting excess fluid and particulate matter from tissues and depositing them in the bloodstream. So how does the lymphatic system get itself involved with a virus that affects the liver?

Dolan points to several studies that indicate Hepatitis C Virus lives and replicates within the lymphatic system as well as the liver causing immune system malfunction. Dolan details how the virus is able to mutate and avoid the immune system’s attack. Additionally, he describes how the virus can trick the immune system into attacking the body’s own tissues. This understanding of Hepatitis C Virus as a systemic disease — a disease that affects several bodily systems at once — may explain why some people with high viral loads have little damage or inflammation in the liver, yet they experience severe symptoms very similar to the flu.

“Some people with chronic Hepatitis C Virus experience a range of symptoms usually classified as autoimmune,” Dolan states. “This occurrence may owe at least as much to the presence of Hepatitis C Virus in the lymphatic system as to the liver.” Due to the autoimmune-related nature of these conditions, they may not be seen in other forms of hepatitis, which makes it difficult for liver specialists to recognize them let alone relate them to hepatitis C.

Until recently, hepatitis C has been perceived by the medical community to be a localized infection of the liver. Researchers have found that hepatitis C is not just a liver disease but a disease that affects many bodily systems at once, causing the immune system to malfunction and lose the ability to differentiate between Hepatitis C Virus particles and human cells.

This overlapping nature of hepatitis C as a liver and immune system disease, notes Dr. Parveen Kumar and Dr. Michael Clark, editors of Clinical Medicine, can lead to an autoimmune disease. “An autoimmune disease occurs when the immune system fails to recognize the body’s own tissues as self and mounts an attack on them. Illnesses are divided into those that affect just one organ (organ-specific) and those that affect many systems (systemic).”

The Diagnosis and Treatment Challenge

“For the last five or six months, I’ve woken up every morning with extreme pain in my back. I think it’s in the kidney area, just below my ribs. I also have chronic joint pain, constant fatigue; I have had blood tests and a biopsy but nothing has ever been explained ...”

            Hepatitis C Virus Patient

Many Hepatitis C Virus patients describe how their lives have become a vicious cycle as they try to get recognition and treatment for their various symptoms and conditions that are not specific to liver disease. Their autoimmune-related symptoms are difficult to diagnose as often their lab tests are below diagnostic levels or they do not fully develop all of the clinical diagnostic symptoms linked to a particular disease.

Dr. Ben Cecil, a hepatologist experienced with Hepatitis C Virus patients who present with overlapping autoimmune diseases confirms the findings: “I have several patients with cryoglobulinemia and one with renal failure and malignant hypertension. Many of my patients have pains in their muscles and joints which are probably related to Hepatitis C Virus.”

Cecil said he recognizes the potential contradictions of lab results and symptoms, and comments that the low titers of antinuclear antibody and other autoimmune disease markers are nonspecific. He suggests that your doctor should consult with a rheumatologist if there is suspicion of overlapping disease processes. He also suggests potential autoimmune tests such as the rheumatoid factor for rheumatoid arthritis, cryoglobulins for cryoglobulinemia as well as the erythrocyte sedimentation rate for evidence of general inflammation. Depending on your symptoms and your doctor’s advice, additional tests to detect kidney disease, thyroid dysfunction and diabetes may also be required.

Take Charge of Your Care

For the past two years, I have been in pain, almost flu like in nature, achy bones, etc. This past spring the pain became very intense, and I developed swollen feet and ankles on both legs. Blood tests show no sign of autoimmune disease, and my liver counts were fine. The liver doctor has written me off saying my symptoms have no connection to the hep C. I am becoming very frustrated!

            Hepatitis C Virus Patient

With stories like these coming to me nearly every day, it is clear that diagnostic medicine, which considers hepatitis C to be only a liver disease and relies wholly on laboratory measures, is failing to help hepatitis C patients who suffer from Hepatitis C Virus-related, autoimmune disorders. It is important to keep in mind that intuition and interpretation on the part of the physician is of utmost importance, and the possible existence of autoimmune diseases should not be ruled out simply because the early lab reports are negative for diagnostic markers.

The American Liver Foundation has stated, “First, we need to intensify efforts to educate primary care physicians and patients. Physicians must be armed with state-of-the-art information about diagnostic testing and optimal care. Physicians and patients must be empowered to make informed decisions about treatment.”

Doctors and patients may benefit from standard evaluation guidelines which list tests for related conditions and how to interpret them, since as mentioned, many of these conditions do not always fit the known diagnostic criteria. Such an approach could provide the doctor with an opportunity to design a carefully planned treatment protocol that could then help to protect the patient from having the underlying conditions worsen.

If you feel you are suffering from possible Hepatitis C Virus-related autoimmune diseases, the best thing you can do is to find a doctor who is aware of the connections with Hepatitis C Virus, one who is willing to listen to you, and provide you with appropriate treatment and symptomatic relief. If you find yourself being dismissed, look for another doctor and keep looking until you find the one right for you.

Common Co-Ailments with Hepatitis C

Here are some common conditions linked to hepatitis C according to The Hepatitis C Handbook, Hepatitis C - A Personal Guide to Good Health and www.askemilyss.com:

• Rheumatoid Arthritis is an inflammatory condition that affects joints causing pain, inflammation, breakdown, and eventual loss of the cartilage of the joints.
• Sjögren’s Syndrome is characterized by progressive destruction of the exocrine glands (sweat glands, lachrymal glands, salivary glands, tear glands). Symptoms include dry eyes, dry mouth, persistent cough (dry airways), and lack of saliva.
• Raynaud’s phenomenon causes poor blood flow to the hands and feet leading to sudden feelings of coldness in these extremities and causing them to turn red. Poor blood flow to parts of the brain might also be linked to depression and ‘brain fog’. Symptoms include paling of the skin followed by bluish skin, then redness, as well as, numbness, tingling, burning, and often pain. Typically caused by exposure to cold.
• Cryoglobulinemia is a condition where the blood gels when exposed to cool temperatures. Symptoms can be triggered to exposure to cool temperatures and include intolerance to cold weather, muscle and joint aches, fever upon exposure, and skin rashes. Many symptoms of cryoglobulinemia dissipate when the patient becomes warm again. One of the most common autoimmune diseases reported among Hepatitis C Virus patients.
• Vasculitis features intense inflammation of the blood vessels with red painful rashes along the veins. Associated with, or is an aspect of, many autoimmune conditions including rheumatoid arthritis, lupus, and systemic sclerosis.
• Thyroid Abnormalities are common but, due to similar symptoms of Hepatitis C Virus itself, it can be difficult to diagnose. Hyperthyroidism (overactive) can cause insomnia, weight loss, palpitations, warm and moist skin or ankle swelling. Hypothyroidism (under active) can result in cold intolerance, sparse and dry hair, scaly skin, and physical and mental sluggishness.
• Type II Diabetes is a condition where enough insulin is produced but the body does not respond to the action of the insulin. Symptoms include fatigue, headaches, sweating, and weight loss or weight gain.
• Glomerulonephritis is an immune-mediated (autoimmune) kidney disease where immune complexes are deposited in the glomeruli, the parts of the kidney responsible for filtering the blood. Symptoms are uncomfortable and debilitating, including edema (swelling and fluid retention) and a loss of blood protein via the urine, known as proteinuria (urine tests reveal the presence of albumin).
• Lichen Planus is a skin disease that appears as flat, purplish pimples or patches with fine, gray lines on the surface. Common sites are wrists, forearms, ankles, abdomen, lower back, and in the mouth. On mucous membranes, the lesions appear gray and lacy. Nails may have ridges running lengthwise.