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Inherited Disorders of Amino Acid Metabolism in Adults

Chapter 431 | Part 12: Endocrinology · Part 12 – Endocrinology & Metabolism · Chapter 431


Key Clinical Points

  1. Newborn screening has improved survival rates and early diagnosis for many amino acid metabolism disorders.
  2. Disorders are classified as aminoacidopathies (parent amino acid excess) and organic acidemias (catabolic pathway products accumulate).
  3. Phenylketonuria (PKU) requires lifelong dietary phenylalanine restriction; maternal PKU requires strict control before conception to prevent congenital defects.
  4. Classic homocystinuria presents with lens dislocation, osteoporosis, and thrombotic vascular disease; treated with pyridoxine, folate, and betaine.
  5. Alkaptonuria presents with dark urine (ochronosis), arthritis, and coronary artery calcification; treated with nitisinone (10 mg/d).
  6. Urea cycle defects present with hyperammonemia, lethargy, and coma; management involves stopping catabolism (calories) and nitrogen removal (phenylacetate/benzoate).
  7. Homocystinuria is associated with increased risk of coronary, cerebrovascular, and peripheral arterial disease.
  8. Pegvaliase is a pegylated phenylalanine ammonia lyase used to reduce phenylalanine levels in PKU.
  9. Nitisinone reduces urinary homogentisic acid excretion in alkaptonuria.
  10. Many metabolic disorders may remain asymptomatic until adulthood, presenting only during fasting or severe stress.

DEFINITION & OVERVIEW

Amino Acid Function: Building blocks of proteins; serve as neurotransmitters (glycine, glutamate, γ-aminobutyric acid) or precursors for hormones, coenzymes, pigments, purines, and pyrimidines. • Essential Amino Acids: Eight amino acids are essential (histidine, isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine) and must be obtained from dietary sources. • Classification Systems:Aminoacidopathies: Parent amino acid is found in excess. • Organic Acidemias: Products in the catabolic pathway accumulate. • Heterogeneity: High biochemical and genetic diversity (e.g., 6 forms of hyperphenylalaninemia, 9 forms of homocystinuria). • Clinical Spectrum: Ranges from asymptomatic (sarcosinemia) to lethal in neonates (complete deficiency of ornithine transcarbamylase). • Diagnostic Methodology: Analysis of plasma amino acids (ion-exchange chromatography or LC/MS), urine organic acids (GC/MS), and plasma acylcarnitine profile (LC/MS). Confirmation via enzyme assay or DNA testing.


EPIDEMIOLOGY

Incidence Rates:Cystinuria/Phenylketonuria: 1 in 10,000. • Homocystinuria/Alkaptonuria: 1 in 200,000. • Collective Incidence: Approximately 1 in 4,000 newborns. • Inheritance Patterns: • Predominantly autosomal recessive (AR). • Exceptions: Ornithine transcarbamylase deficiency (X-linked) and some homocystinuria forms (AR, XL).


ETIOLOGY & PATHOPHYSIOLOGY

General Mechanism: Accumulation depends on the site of enzymatic block, reversibility of proximal reactions, and availability of alternative metabolic pathways. • Phenylalanine Metabolism:Phenylketonuria (PKU): Result of reduced activity of phenylalanine hydroxylase (frequency 1:16,500). • Pathophysiology: • Inhibits transport of other amino acids for protein/neurotransmitter synthesis. • Reduces myelin synthesis and increases degradation. • Inadequate formation of norepinephrine and serotonin. • Tyrosinase inhibition → hypopigmentation of hair and skin. • Clinical Presentation: Microcephaly, 'mousy' odor (phenylacetate), eczema, and intellectual disability. • Homocystinuria Metabolism Pathways:Cystathioninuria: Reduced activity of cystathionine β-synthase (B6-dependent). → Results in elevated homocysteine and cystathionine. • Remethylation Defects: Defective methionine synthase or reduced cofactors (5-methyltetrahydrofolate, methylcobalamin). → Results in elevated homocysteine with low plasma methionine. • Alternative Pathways: Homocysteine can be remethylated by betaine-homocysteine methyltransferase (requires Betaine) to form dimethylglycine. • Alkaptonuria: Homogentisic acid oxidase deficiency → accumulation of oxidized homogentisic acid in connective tissues (ochronosis). • Urea Cycle Defects:Mechanism: Impaired conversion of ammonia to urea; defects in enzymes or mitochondrial transporters. • Key Components: Includes CPS-1, OTC, Citrin (SLC25A13), and ORNT1 (SLC25A15). • Clinical Impact: Hyperammonemia, lethargy, and coma in infants (1–4 days of life).


CLINICAL FEATURES

Phenylketonuria (PKU):Neurological: Intellectual disability, microcephaly, seizures, hypopigmentation. • Physical: 'Mousy' odor of skin/hair/urine; eczema. • Homocystinuria:Cystathioninuria: Lens dislocation (3-5 years), marfanoid habitus, osteoporosis, and life-threatening vascular complications (coronary, renal, cerebral). • Remethylation Defects: Intellectual disability, hypotonia, seizures, megaloblastic anemia. • Alkaptonuria:Connective Tissue: Ochronosis (pigmentation), arthritis, cardiac valve involvement, coronary artery calcification. • Urea Cycle Defects:Acute Presentation: Lethargy progressing to coma; protein aversion; hyperammonemia. • Chronic Features: CNS dysfunction (delays, seizures) in >50% of cases. • Other Notable Conditions:Tyrosinemia Type 1: Liver failure, cirrhosis, rickets, 'boiled cabbage' odor. • Tyrosinemia Type 2: Palmoplantar keratosis, painful corneal erosions. • Glycine Encephalopathy: Infantile seizures, lethargy, apnea, profound intellectual disability.


DIAGNOSTIC APPROACH

  1. Screening: Identification via newborn screening programs.
  2. Metabolic Profiling:Plasma Amino Acids: Analysis by ion-exchange chromatography or LC/MS. • Urine Organic Acids: Analysis by GC/MS. • Plasma Acylcarnitine Profile: Analysis by LC/MS.
  3. Confirmation:Enzyme Assay: Performed on cells or tissues from the patient. • Genetic Testing: DNA analysis to confirm specific mutations.

MANAGEMENT & TREATMENT

  1. Phenylketonuria (PKU):Dietary: Lifelong restriction of phenylalanine. • Pharmacotherapy: Pegvaliase (pegylated phenylalanine ammonia lyase) to reduce phenylalanine levels.
  2. Homocystinuria:Supplementation: Pyridoxine, folate, and betaine.
  3. Alkaptonuria:Pharmacotherapy: Nitisinone at low dose (10 mg/d) to reduce urinary homogentisic acid excretion.
  4. Urea Cycle Defects:Initial Management: Stop catabolism by providing adequate calories. • Nitrogen Removal: Administration of phenylacetate and benzoate.

PROGNOSIS & COMPLICATIONS

General Prognosis: Improved survival rates due to early diagnosis; many children now reach adulthood. • Urea Cycle Defects: CNS dysfunction (delays, seizures, behavioral issues) in >50% of cases. Hyperammonemia is a life-threatening condition. • Homocystinuria: Life-threatening vascular complications (coronary, renal, cerebral) during the first decade of life.


SPECIAL CONSIDERATIONS

Pregnancy: Maternal PKU requires strict control before conception to prevent congenital defects in offspring. • Adult Presentation: Some disorders (e.g., certain homocystinurias) may remain asymptomatic until adulthood, presenting only during fasting or severe stress.


KEY PEARLS & CLINICAL TRAPS

Maternal PKU: Critical to control phenylalanine levels before conception. • Nitisinone Dose: 10 mg/d for Alkaptonuria. • Homocystinuria Differentiation: • Cystathioninuria → High cystathionine; high homocysteine. • Remethylation defects → Low methionine; high homocysteine. • Urea Cycle Defects: Most are AR, except Ornithine Transcarbamylase (OTC) deficiency which is X-linked.


Reference Tables

TABLE 431-1 Inherited Disorders of Amino Acid Metabolism

Harrison's 22e, p.3368

AMINO ACID(S) CONDITION ENZYME DEFECT CLINICAL FINDINGS INHERITANCE
Phenylalanine Phenylketonuria Phenylalanine hydroxylase Intellectual disability, microcephaly, hypopigmented skin
and hairs, eczema, “mousy” odor
AR
DHPR deficiency Dihydropteridine reductase Intellectual disability, hypotonia, spasticity, myoclonus AR
PTPS deficiency 6-Pyruvoyl-tetrahydropterin synthase Dystonia, neurologic deterioration, seizures, intellectual
disability
AR
GTP cyclohydrolase 1
deficiency
GTP cyclohydrolase 1 Intellectual disability, seizures, dystonia, temperature
instability
AR
Carbinolamine dehydratase
deficiency
Pterin-4α-carbinolamine dehydratase Transient hyperphenylalaninemia (benign) AR
DNAJC12 deficiency Hydroxylase co-chaperone Dystonia, parkinsonism, intellectual disability AR
Tyrosinemia type 1
(hepatorenal)
Fumarylacetoacetate hydrolase Liver failure, cirrhosis, rickets, failure to thrive, peripheral
neuropathy, “boiled cabbage” odor
Tyrosinemia type 2
(oculocutaneous)
Tyrosine transaminase Palmoplantar keratosis, painful corneal erosions with
photophobia, learning disability
Tyrosinemia type 3 4-Hydroxyphenylpyruvate dioxygenase Hypertyrosinemia with normal liver function, occasional
mental delay
Hawkinsinuria 4-Hydroxyphenylpyruvate dioxygenase Transient failure to thrive, metabolic acidosis in infancy
Alkaptonuria Homogentisic acid oxidase Ochronosis, arthritis, cardiac valve involvement, coronary
artery calcification
Maleylacetoacetate
isomerase deficiency
Maleylacetoacetate isomerase No clinical symptoms, elevated succinylacetone in blood
and urine
Albinism (oculocutaneous) Tyrosinase Hypopigmentation of hair, skin, and optic fundus; visual
loss; photophobia
Albinism (ocular) Different enzymes or transporters Hypopigmentation of optic fundus, visual loss
DOPA-responsive dystonia Tyrosine hydroxylase Rigidity, truncal hypotonia, tremor, intellectual disability
GABA 4-Hydroxybutyric aciduria Succinic semialdehyde dehydrogenase Seizures, intellectual disability, hypotonia AR
ABAT deficiency GABA transaminase Seizures, intellectual disability, hypotonia AR
Hydroxykynureninuria Kynureninase Intellectual disability, spasticity
Histidine Histidinemia Histidine-ammonia lyase Benign AR
Urocanic aciduria Urocanase Occasional intellectual disability AR
Formiminoglutamic
aciduria
Formiminotransferase Occasional intellectual disability AR
Glycine encephalopathy Glycine cleavage (4 enzymes) Infantile seizures, lethargy, apnea, profound intellectual
disability
Sarcosinemia Sarcosine dehydrogenase Benign
Hyperoxaluria type I Alanine:glyoxylate aminotransferase Calcium oxalate nephrolithiasis, renal failure
Hyperoxaluria type II D-Glyceric acid dehydrogenase/
glyoxylate reductase
Calcium oxalate nephrolithiasis, renal failure
Serine 3-PGDH deficiency Phosphoglycerate dehydrogenase Seizures, microcephaly, intellectual disability AR
PSAT1 deficiency Phosphoserine aminotransferase Seizures, microcephaly, intellectual disability AR
PSP deficiency Phosphoserine phosphatase Seizures, microcephaly, intellectual disability AR
Hyperprolinemia type 1 Proline oxidase Benign
Hyperprolinemia type 2 Δ1-Pyrroline-5-carboxylate
dehydrogenase
Febrile seizures, intellectual disability
Hyperhydroxyprolinemia Hydroxyproline oxidase Benign
Prolidase deficiency Prolidase Mild intellectual disability, chronic dermatitis, autoimmunity
PYCR1 deficiency Pyrroline-5-carboxylate reductase 1 Wrinkly skin, joint laxity, typical facial features, intellectual
disability, osteopenia, intrauterine growth retardation,
hypotonia
PYCR2 deficiency Pyrroline-5-carboxylate reductase 2 Microcephaly, hypomyelination, and reduced cerebral
white matter volume, failure to thrive, intellectual disability,
movement disorders, seizures
Proline (ornithine,
arginine,
citrulline)
Δ1-Pyrroline-5-carboxylate
synthase deficiency
Δ1-Pyrroline-5-carboxylate synthase Hypotonia, seizures, neurodegeneration, peripheral
neuropathy, joint laxity, skin hyperelasticity, subcapsular
cataracts, hyperammonemia, adult spastic paraparesis (AD)
AR, AD
Hypermethioninemia Methionine adenosyltransferase Usually benign
S-Adenosylhomocysteine
hydrolase deficiency
S-Adenosylhomocysteine hydrolase Hypotonia, intellectual disability, absent tendon reflexes,
delayed myelination
Glycine N-methyltransferase
deficiency
Glycine N-methyltransferase Elevated liver transaminases
Adenosine kinase
deficiency
Adenosine kinase Intellectual disability, seizures, liver dysfunction