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Hereditary Hemochromatosis: New Guidelines and Implications for Primary Care

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Highlights

  • Hereditary hemochromatosis information from the 2019 American College of Gastroenterology guideline is provided.

  • Hereditary hemochromatosis is an autosomal recessive mutation.

  • Sequelae of hereditary hemochromatosis if not diagnosed early are described.

  • American College of Gastroenterology hereditary hemochromatosis guidelines for diagnosis, treatment, when to refer, and patient education are discussed.

Abstract

Hereditary hemochromatosis (HH) is an autosomal recessive mutation that results in iron overload. Undetected, it can cause irreversible organ damage to the pituitary and thyroid glands, heart, liver, pancreas, testis, skin, and joints. This irreversible damage can lead to gonadotropin insufficiency, hypothyroidism, heart disease, cirrhosis, hepatocellular carcinoma, diabetes, hypogonadism, bronzing of the skin, pseudogout, and arthropathy. This case study describes a patient who presented to a primary care office for a routine examination with nonspecific complaints and was found to have elevated aminotransferases. Further testing revealed a diagnosis of HH. This case study also illustrates new guidelines outlined for the diagnosis and treatment of HH from the American College of Gastroenterology in 2019.

Section snippets

The Case of Mr. Jones

Mr. Jones, a 44-year-old White man, presented to the primary care office to see the nurse practitioner for a routine follow-up visit for hypertension, hyperlipidemia, and ongoing generalized fatigue. His medications included olmesartan (20 mg daily) and lovastatin (20 mg daily). As part of his routine examination, Mr. Jones was questioned about his social habits, and he said he drank approximately 1 to 2 beers a day most days of the week. He further explained that approximately 10 years ago he

Differential Diagnosis

The most common reason for elevated liver enzymes is nonalcoholic fatty disease (NAFLD) or alcoholic liver disease. There are 2 forms of NAFLD. The more common form of NAFLD causes hepatic steatosis without inflammation.1 The second more severe type causes inflammation, hepatocyte injury, and less frequently, fibrosis. Alcoholic liver disease presents similarly to NAFLD; however, the underlying cause is not fat displacement in the liver but rather excessive alcohol intake. If history is unclear

Diagnostic Studies

Because of the differential diagnosis and to follow-up on his mildly elevated serum transaminases, further laboratory studies were ordered, which included a hepatitis panel, serum iron level, total iron binding capacity, serum ferritin, and iron saturation. The patient’s hepatitis panel was negative, but his iron studies revealed a marked elevation of serum ferritin, a mild elevation of serum iron and iron saturation, and a decreased total iron binding capacity. The results are listed in the

Background

HH affects approximately 1 in 300 non-Hispanic White people in the United States. At least 1 in 10 people is a carrier for the mutation.2,4 HH is described as an iron absorption disorder because it results in iron overload and is the most common inherited genetic disorder for those who are of northern European descent. This overload is caused by low levels of hepcidin. Hepcidin, a liver-synthesized peptide, is the main hormone responsible for the regulation of iron uptake from the small

Presentation

There are several ways that patients with HH could present in primary care. Common symptoms include fatigue and joint pain, but these nonspecific complaints can be easily mistaken for many conditions.2,4,7, 8, 9 More commonly, however, patients present incidentally from abnormal laboratory test results and experience no symptoms.2,9 Expression of the disease is influenced by sex and age. Women may manifest the disease less frequently due to blood loss in menstruation and pregnancy. Owing to the

New Guidelines for Primary Care Providers

With greater awareness regarding the possibility of HH in primary care, there is a higher potential for early diagnosis and, thus, initiation of treatment.8 The American College of Gastroenterology has published new clinical guidelines for HH.6 However, no guideline should replace good clinical judgment in determining possible causes.5

Diagnostic Approach

The screening of the general population for the HH gene mutation is not recommended because the C282Y gene is variably present in the population but may not be expressed clinically. However, if the patient with HH has first-degree relatives, these relatives should be screened,6,8 especially because there is a 1 in 4 chance of siblings being affected.5

In patients with iron overload, the provider should send laboratory orders for HFE genotyping, which will detect the presence of the 3 subtypes of

Treatment

In years past, those with HH were asymptomatic until they suffered irreversible organ damage, usually in the liver. Symptomatic patients are usually past the point in which treatment would help. Treatment goals today are to prevent organ damage, improve symptoms, and preserve normal life expectancy. Those who are treated for HH in the absence of cirrhosis or diabetes have the same survival rate as the general population.12

The only way the body can rid itself of excess iron is through blood

When to Refer

If ultrasonography shows that the patient has hepatic fibrosis or another liver disease, the provider should refer the patient to a gastroenterologist for a liver biopsy to determine the cause.6,8 Patients with decompensated cirrhosis or hepatocellular carcinoma should be considered for liver transplantation.6

Patient Education

Patients should be provided with relevant education and lifestyle recommendations. Specifically, patients should be advised to avoid iron and vitamin C supplements and certain foods, including multivitamins with iron and citrus fruits, because these supplements and foods promote iron absorption. They should also be told to consume red meat in moderation and avoid consuming or handling raw seafood because of an increased risk of Vibrio vulnificus infection. Patients should also be educated to

What Happened to Mr. Jones?

Mr. Jones was referred to a gastroenterologist for confirmed HH. Mr. Jones’ initial liver ultrasound study in primary care was negative. While ultrasonography can be a reliable test for liver disease with 91% accuracy,13 this means that 9% of patients are not accurately diagnosed; as such, a liver biopsy is indicated. During this consult, a liver biopsy was performed and the sample showed increased intrahepatocellular iron deposition (3+ of 4) as well as moderate steatosis, mild portal

Alicia Ribar, PhD, FNP-BC is a Professor at the University of South Carolina College of Nursing, Columbia, South Carolina, and can be contacted at [email protected].

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There are more references available in the full text version of this article.

Cited by (0)

Alicia Ribar, PhD, FNP-BC is a Professor at the University of South Carolina College of Nursing, Columbia, South Carolina, and can be contacted at [email protected].

Laura Herbert, DNP, FNP-BC is an Assistant Professor at the University of South Carolina College of Nursing, Columbia, South Carolina.

Patricia Keane, PhD, FNP-BC is a Professor Emeritus at Otterbein University, Westerville, Ohio.

In compliance with national ethical guidelines, the authors report no relationships with business or industry that would pose a conflict of interest.

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