PKU and B12 Deficiency

PKU and B12 Deficiency

Did you know that following your PKU diet without taking your supplements is dangerous and can put your health at serious risk? We get it – taking your supplements can be hard, but it’s important you find one that works for you and that you can tolerate. Restricting protein while not taking your PKU formula can lead to a range of debilitating deficiencies, some of which can cause irreversible damage. Many teens and adults who struggle with formula compliance find Glytactin RTD and BetterMilk a more palatable and even enjoyable option that they are able to take consistently without experiencing a range of GI issues (stomach aches, nausea, bloating etc) commonly reported as a side effect of traditional amino acid supplements. If you’re struggling with taking your supplements then please get in touch with us for a sample of our products – we’d love to help you be the healthiest you that you can be! Simply email sarah@cambrooke.com to request samples.

B12 deficiency is common in teens and adults with PKU that restrict protein but don’t take supplements. Untreated B12 deficiency or folate deficiency anaemia may cause serious neurological disease that, if left unaddressed can become irreversible. The symptoms usually develop gradually and worsen over time if untreated.
Anaemia is where you have fewer red blood cells than normal or you have an abnormally low amount of a substance called haemoglobin in each red blood cell. General symptoms of anaemia may include:

• extreme tiredness (fatigue)
• lack of energy (lethargy)
• breathlessness
• feeling faint
• headaches
• noticeable heartbeats (palpitations)
• loss of appetite and weight loss

Symptoms of vitamin B12 deficiency
If you have anaemia caused by a vitamin B12 deficiency, you may have other symptoms in addition to those listed above, such as:
• a pale yellow tinge to your skin
• a sore and red tongue
• mouth ulcers
• pins and needles
• changes in the way that you walk and move around
• disturbed vision
• irritability
• depression
• changes in the way you think, feel and behave
• a decline in your mental abilities, such as memory, understanding and judgement.

How Your Metabolic Clinic Can Help – On or Off Diet!
Even if you’re off diet it’s super important that you attend a metabolic clinic every year for monitoring. At these visits you should have your vitamin and mineral levels checked through a simple blood test that will highlight any deficiencies that need addressing. If any deficiencies are found, your metabolic consultant and/or GP will be able to determine the best course of action to address it.

References: J Walter / Mol Genet Metab. 2011;104 Suppl:S52-4
Dr John Walter is a very experienced paediatric metabolic consultant at The Willink Unit, Manchester Children’s Hospital