FAQ - Frequently Asked Questions

About PKU

[ General Questions ] [Clinical Tests ] [Genetics ] [ Biochemical Defects and Consequences ] [Treatment ]

General presentation of the disease

  1. What does "PKU" stand for?
  2. What is the significance of the "ketonuria" part of the name?
  3. Is PKU an inherited disease?
  4. What does PAH stand for?
  5. What is PKU caused by?
  6. What are typical general symptoms in children with severe PKU?
  7. Is mental retardation necessarily severe in all cases of PKU?

Clinical tests

  1. What tests may be used to determine blood levels of Phe?
  2. In a suspected case of PKU, what information could be gained from a liver biopsy?
  3. What are typical serum levels of phenylalanine (Phe) in cases of PKU?
  4. What other aberrant serum or urine levels may be noted?
  5. Does hyperphenylalaninemia always indicate a deficiency in the enzyme phenylalanine hydroxylase?
  6. What is the Guthrie test for PKU, and how does it work?
  7. How might a carrier for PKU be diagnosed? 
     

Genetics

  1. Is PKU recessive or dominant?
  2. In order for a child to have PKU, must both parents have a defective PAH gene?
  3. A mother is described as a "carrier" for PKU.  What does this mean?
  4. What is the approximate overall frequency of defective PAH genes in the general population?
  5. What is the approximate frequency of occurrence of PKU in live births?
  6. Approximately how many different mutations (haplotypes) are known for the PAH gene?
  7. What is the genetic location of the human PKU locus?
  8. How might an ASO (allele-specific oligonucleotide) hybridization test be used to diagnose a specific genetic mutation in the PAH gene? 
     

Biochemical defect and consequences

  1. Is phenylalanine an essential amino acid?  Can humans synthesize phenylalanine, or must it all come from dietary intake?  Can they synthesize tyrosine, or must it all come from dietary intake?
  2. What are the physical characteristics (subunit stoichiometry and composition, and molecular weights) of the PAH enzyme?
  3. What reaction does this enzyme catalyze?
  4. What cofactor is required for this reaction?
  5. Why is the enzyme dihydropteridine reductase needed for the conversion of phenylalanine to tyrosine?
  6. What is the importance of this reaction in general amino acid metabolism in humans?
  7. In what organ is most of the PAH activity located?
  8. What is an  alpha-keto acid?  Give some examples from biochemistry?
  9. How can phenylalanine be converted into phenylpyruvate by the body?
  10. In PKU, why are there high levels of phenylpyruvate in the plasma and urine?
  11. How might excessive levels of phenylpyruvate interfere with pyruvate metabolism?
  12. Maple syrup urine disease (MSUD) leads to high serum levels of -ketoisocaproate.  How might high levels of this metabolite interfere with pyruvate metabolism?
  13. High concentrations of phenylalanine can inhibit the enzyme that decarboxylates 5-hydroxytryptophan to form serotonin.  How might this lead to mental retardation?
  14. Apart from its effects on neurotransmitter levels, explain how a deficiency in PAH activity can lead to mental retardation.
  15. What metabolites of phenylalanine might you expect to see in the blood from a child with PKU?
  16. What causes the musty odor associated with PKU?
  17. How would a deficiency in tetrahydrobiopterin production or regeneration lead to symptoms similar to those caused by a deficiency in PAH activity?
  18. What other upsets in amino acid metabolism might arise if there were a deficiency in tetrahydrobiopterin production or regeneration? 
     

Treatment

  1. What is the basic treatment for an infant with PKU?
  2. What are the recommended blood levels of Phe for patients with PKU?
  3. How long must dietary restrictions continue?
  4. Why does tyrosine become an "essential" amino acid for children with PKU?
  5. What treatment is recommended for patients with hyperphenylalaninemia due to a defect in BH4 metabolism?

General presentation of the disease

  1. What does "PKU" stand for?
=>           Phenylketonuria.
  1. What is the significance of the "ketonuria" part of the name?
=>           One of the clinical signs of the disease is the significant buildup of phenylketones in the bloodstream and their appearence in the urine.
 
  1. Is PKU an inherited disease?
=>       Yes, PKU is an inherited disease.
 
  1. What does PAH stand for?
=>        Phenylalanine hydroxylase.
 
  1. What is PKU caused by?
=>        The most common cause of PKU is a mutation in the gene coding for the enzyme phenylalanine hydroxylase (PAH). The mutation causes a deficiency in the activity of this enzyme and leads to aberrant amino acid metabolism.
 
  1. What are typical general symptoms in children with severe PKU?
=>        Hypotonia, mental retardation, skin rashes, musty odor, fairer complexion than parent or siblings.
 
  1. Is mental retardation necessarily severe in all cases of PKU?
=>        There is a spectrum of severity in mental retardation, but most cases (if untreated) are associated with an IQ below 30. Microcephaly is present in 68% of untreated cases; seizures present in 25% of untreated cases.


Clinical Tests

  1. What tests may be used to determine blood levels of Phe?
=>        The Guthrie test is most commonly used. One may also use HPLC. There is also a fluorometric method. An older, simple but inaccurate method depends on the formation of a blue-green complex of urinary phenylpyruvate with ferric ion (from a ferric chloride solutions.) This method is inaccurate because other compounds in the urine may also form colored complexes and mask the color of the ferric-pyruvate complex.
 
  1. In a suspected case of PKU, what information could be gained from a liver biopsy?
=>        PAH is expressed only in the liver; a biopsy could be used to determine its activity. However, this is a stressful and invasive procedure, and it would not normally be done with children.
 
  1. What are typical serum levels of phenylalanine (Phe) in cases of PKU?
=>        Benign:   blood Phe at 120 - 480 micromol/L
            Atypical: blood Phe at 480 - 1200 micromol/L

            Severe:    blood Phe at 1200 micromol/L or higher
 
  1. What other aberrant serum or urine levels may be noted?
=>         Elevated levels of phenylpyruvate, phenylacetate, phenyllactate, phenylethylamine.
 
  1. Does hyperphenylalaninemia always indicate a deficiency in the enzyme phenylalanine hydroxylase?
=>        No, it does not.  There may be other defects present, such as those involved in regeneration of the cofactor tetrahydrobiopterin (BH4), that would cause elevated levels of phenylalanine.  In cases where the defect is not in the enzyme PAH, but involves production or regeneration of BH4 , there may be aberrant levels of neopterin and biopterin. The elevation or depression of the urinary pterins can in fact be used to deduce the exact defect in the metabolism of BH4.  Neurotransmitter levels might also be affected, since the synthesis of certain neurotransmitters depends on the oxidation of tyrosine and tryptophan in reactions that use the cofactor BH4.
 
  1. What is the Guthrie test for PKU, and how does it work?
=>         The Guthrie test is a bacterial assay for the presence of high levels of phenylalanine. For details of this and other tests for PKU, click here.
 
  1. How might a carrier for PKU be diagnosed?
=>        One could use a genetic, rather than a biochemical, test.  An allele-specific oligonucleotide hybridization test, if positive, would be conclusive. One could also use full length human cDNA that has the gene sequence for PAH, as a probe for restriction fragment length polymorphism (RFLP).


Genetics

  1. Is PKU recessive or dominant?
=>        It is recessive.
 
  1. In order for a child to have PKU, must both parents have a defective PAH gene?
=>        In the "classical" form of the disease involving a defective PAH gene (not the forms involving aberrant tetrahydrobiopterin metabolism), since the mutation in PAH is recessive, then the child must have two (not just one) defective copy of the PAH gene in order to suffer from PKU.  This situation can arise most commonly when both parents have a defective PAH gene and pass it along to the child.  Much more rarely there could be a spontaneous mutation in an otherwise fully-functional PAH gene that would cause loss of enzyme activity.  If this occurred in combination with inheritance of a defective PAH gene from one parent or the other, then the child would suffer from PKU.
 
  1. A mother is described as a "carrier" for PKU.  What does this mean?
=>        She has one fully functional copy of the gene for PAH, and one defective copy.  She may be normal with respect to phenylalanine metabolism.
 
  1. What is the approximate overall frequency of defective PAH genes in the general population?
=>        Approximately 2%.
 
  1. What is the approximate frequency of occurrence of PKU in live births?
=>        It occurs approximately once in 10,000 live births.
 
  1. Approximately how many different mutations (haplotypes) are known for the PAH gene?
=>        European populations show at least 46 different haplotypes, 4 of which account for over 80% of the cases of PKU. Among Chinese and Japanese populations, one haplotype predominates.
 
  1. What is the genetic location of the human PKU locus?
=>        On chromosome 12, at 12q22-q24.1
 
  1. How might an ASO (allele-specific oligonucleotide) hybridization test be used to diagnose a specific genetic mutation in the PAH gene?
=>       DNA from the patient is extracted and denatured, then a portion combined with the ASO in a stringent hybridization test.  The ASO has a sequence matching one specific mutation in the PAH gene, so that if the ASO hybridizes with the patient's DNA under stringent conditions, it must be fully complementary to the patient's PAH gene sequence.  If the ASO does not hybridize, then the patient does not carry that particular mutation. This process can be repeated with different ASOs to identify the particular mutation carried by the patient.


Biochemical Defects and Consequences

  1. Is phenylalanine an essential amino acid?  Can humans synthesize phenylalanine, or must it all come from dietary intake?  Can they synthesize tyrosine, or must it all come from dietary intake?
=>       Phenylalanine is essential for humans; humans do not have all the enzymes needed for de novo synthesis of this amino acid.  Thus, for humans all phenylalanine must be obtained through the diet.  Humans can make tyrosine from phenylalanine, so tyrosine is not considered an essential amino acid.
 
  1. What are the physical characteristics (subunit stoichiometry and composition, and molecular weights) of the PAH enzyme?
=>        Human PAH is a dimer of identical 50-kDa subunits.
 
  1. What reaction does this enzyme catalyze?
=>        It catalyzes the hydroxylation of phenylalanine on the phenyl ring at the 4 position, to make tyrosine.
 
  1. What cofactor is required for this reaction?
=>        Tetrahydrobiopterin.
 
  1. Why is the enzyme dihydropteridine reductase needed for the conversion of phenylalanine to tyrosine?
=>        During the conversion reaction, the cofactor is co-oxidized to the quinonoid form.  Dihydropteridine reductase is needed to reduce this and regenerate the tetrahydrobiopterin, so that the conversion reaction can continue.
 
  1. What is the importance of this reaction in general amino acid metabolism in humans?
=>        In humans, this is the major biosynthetic route to tyrosine.
 
  1. In what organ is most of the PAH activity located?
=>        The liver.
 
  1. What is an  alpha-keto acid?  Give some examples from biochemistry?
=>        An  alpha-keto acid has a carbonyl groups located immediately adjacent to the carboxylic acid group:

             R-CO-COOH

             Examples from primary metabolism include pyruvate, oxaloacetate, and  alpha-ketoglutarate.
 

  1. How can phenylalanine be converted into phenylpyruvate by the body?
=>        Enzymes known as transaminases can catalyze the removal of the  alpha-amino group (and a hydrogen from the  alpha-carbon) from phenylalanine, and convert that carbon to a carbonyl, making phenylpyruvate.
 
  1. In PKU, why are there high levels of phenylpyruvate in the plasma and urine?
=>        The lack of PAH activity leads to an accumulation of phenylalanine.  As the concentration of this amino acid rises, side reactions with the phenylalanine generate byproducts.  These are normally are present only in vanishingly small concentrations, but under these conditions, their concentrations become appreciable.  One of the side reactions is the transamination reaction of phenylalanine with  alpha-ketoglutarate, which generates glutamate and (more importantly) phenylpyruvate.  The reaction is the analog of the transamination of alanine to pyruvate.  This leads to higher-than-normal concentrations of phenylpyruvate in the bloodstream, and then in the urine.
 
  1. How might excessive levels of phenylpyruvate interfere with pyruvate metabolism?
=>        Pyruvate is transported into the mitochondria for oxidation; this transport involves a specific carrier protein.  Phenylpyruvate inhibits the transport of pyruvate (but not acetate) into human red blood cells, and into rat liver and brain mitochondria.  The results with rat tissue, supported by the results with human red blood cells, suggest the existence of a similar carrier in humans.  They further suggest that this carrier would be specifically inhibited by phenylpyruvate in humans.  Such inhibition would block much of the formation of acetyl CoA in the mitochondria, though some could be derived from fatty acid metabolism.  The acetyl CoA is needed for TCA cycle turnover and is a key part of energy generation in the mitochondria.  Thus a block of the entry of pyruvate into mitochondria would reduce the cell's ability to generate energy.
 
  1. Maple syrup urine disease (MSUD) leads to high serum levels of alpha-ketoisocaproate.  How might high levels of this metabolite interfere with pyruvate metabolism?
=>        Inhibition of pyruvate transport into mitochondria could be produced by  alpha-ketoisocaproate using the same sort of mechanism as for phenylpyruvate.  The consequences would be the same.
 
  1. High concentrations of phenylalanine can inhibit the enzyme that decarboxylates 5-hydroxytryptophan to form serotonin.  How might this lead to mental retardation?
=>        Serotonin is a neurotransmitter.  Blockage of its synthesis could easily upset CNS function and, if prolonged, could lead to mental retardation.
 
  1. Apart from its effects on neurotransmitter levels, explain how a deficiency in PAH activity can lead to mental retardation.
            Since phenylpyruvate may block entry of pyruvate into mitochondria, and so upset TCA cycle function, it would tend to weaken the cell's capacity for generating energy, e.g. ATP.  Brain tissue consumes much ATP, and any interference with ATP production in this tissue could be expected to lead to CNS effects.  If prolonged, the interference could then cause mental retardation, and psychological and emotional disturbances, etc.
 
  1. What metabolites of phenylalanine might you expect to see in the blood from a child with PKU?
=>        Common metabolites of phenylalanine would be phenylpyruvate, phenylacetate, phenyllactate, and phenylethylamine.
 
  1. What causes the musty odor associated with PKU?
=>        The odor is probably due to phenylacetate, one of the products of side-reactions of phenylalanine.
 
  1. How would a deficiency in tetrahydrobiopterin production or regeneration lead to symptoms similar to those caused by a deficiency in PAH activity?
=>        If there is insufficient tetrahydrobiopterin, then the phenylalanine hydroxylase cannot turn over for renewed catalytic cycles; in effect, the enzyme is inhibited by lack of the properly-reduced cofactor.  The consequences are much the same as if the enzyme were simply deficient in activity, that is, elevated levels of phenylalanine and byproducts of its metabolism.
 
  1. What other upsets in amino acid metabolism might arise if there were a deficiency in tetrahydrobiopterin production or regeneration?
=>        This cofactor is used in the hydroxylation of tryptophan, so there could be a deficiency of neurotransmitters made from either tryptophan or of course from tyrosine.


Treatments

  1. What is the basic treatment for an infant with PKU?
=>         The intake of phenylalanine must be greatly restricted, to supply just the amount needed for replacement of phenylalanine lost during protein turnover.  One should use foods that are low in Phe and that provide adequate tyrosine; high protein foods (meat, milk, eggs, cheese, and legumes) should be avoided.
 
  1. What are the recommended blood levels of Phe for patients with PKU?
=>        In general, blood levels in the range 120 - 600 ?mol/L are usually considered appropriate, though some authorities recommend the lower and more restricted ranges of 120 - 360 micromol/L or 120 - 240 micromol/L.
 
  1. How long must dietary restrictions continue?
=>        It was originally thought that in later childhood or adolescence, the dietary restrictions could be relaxed.  Recent studies indicate that the restricted diet must continue indefinitely (though perhaps with some modification in adulthood), to avoid learning disabilities and psychological and emotional difficulties later in life.
 
  1. Why does tyrosine become an "essential" amino acid for children with PKU?
=>        Since they lack the enzyme activity to make tyrosine from phenylalanine, the tyrosine must be supplied through their diet, making it effectively "essential".
 
  1. What treatment is recommended for patients with hyperphenylalaninemia due to a defect in BH4 metabolism?

=>        They should receive oral supplements of the active form of the cofactor, along with supplementation for the neurotransmitter precursors 5-hydroxytryptophan and L-DOPA.
 

 

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