It usually is not necessary to have more than one AATalpha-1 antitrypsin level checked during an Alpha’s lifetime, just as it usually is not necessary to have an Alpha’s phenotype or genotype checked more than once in a lifetime. However, there are some exceptions. When the initial diagnosis is made, it is reasonable to recheck and confirm it, preferably at a reference laboratory with experience in testing for Alpha-1.
Some people with unusual phenotypes and evidence of lung disease may have their levels rechecked to evaluate whether their baseline level is low enough to cause concern. It is not recommended that levels be checked following institution of augmentation therapy. It is also important to know that phenotype tests will be inaccurate in those receiving augmentation therapy. Physicians should not make changes from the recommended dosing of augmentation therapy based on blood levels of AATalpha-1 antitrypsin.
Alpha-1 Lung Disease Questions & Answers – Alpha-1 Foundation
Each person needs to be tested for Alpha-1 only once, as their genes will never change, and their AATalpha-1 antitrypsin level will continuously change within the range for their genotype. People who test their AATalpha-1 antitrypsin level more than once rarely get the same level result twice; but do not let this be a cause for worry, as AATalpha-1 antitrypsin levels will never fall below the lower limit for your genotype, they don’t drop as you age, and they are not a marker for disease progression. In fact, the 2016 Alpha-1 Clinical Practice Guidelines recommend that AATalpha-1 antitrypsin level should be tested once and not repeated. Alphas and carriersAn Alpha-1 Carrier is a person who has one normal ATT gene (M) and one defective AAT gene (usually S or Z). It does NOT mean you cannot get sick. may share the guidelines with their doctors to avoid unnecessary testing, cost and worry.
What does my AAT level mean? – Alpha-1 Registry, Winter 2018
Some physician’s feel they should monitor AATalpha-1 antitrypsin levels in the blood and then adjust the dosage of augmentation therapy to achieve some particular level they feel will protect the patient from experiencing lung damage. This approach to dosing is not recommended at the present time.
Augmentation Therapy – AlphaNet
The potential fallacy of such an approach lies in the fact that the levels of AATalpha-1 antitrypsin found in the lungs following prolonged augmentation therapy tend to be much more stable and consistent than the levels found in the blood. Therefore, routine dose adjustments based on blood levels may not produce the desired effect within the lungs. The dosing recommendations approved by the FDA are based on this understanding for the need to achieve a consistent protective level of AATalpha-1 antitrypsin within the lungs.