With all the exciting news in the PKU community lately and new progress with treatment guidelines , as well as the recent announcement of the low protein food coverage in BC. I have been re evaluating my dreams and hopes for the PKU community and what Id like to see next.

Then it was right there right in front of my eyes. Everyday I log into the computer and surf the online PKU community and I see it.  Conversions.  methods of tracking PHE, exchanges vs PHe or Grams of protein.

I see a need for a universal method. So many people give advice on values for food, not realizing that alot of places count differently.

Here is what I know from my own research.

Here in Canada 1 exchange is 15 mg of PHE, 50 mg of PHE is 1 gram of protein.

So for example, my tolerance is 350 mg of PHE, or 23.3 exchanges or 7 grams of protein.

In some places such as the United Kingdom, they count exchanges differently. From what I understand 1 exchange is 1 gram of protein. However they have a large list of “free” foods. They don’t count most fruits and vegetables.

Here everything has protein , so everything has PHE , even if its like 0.7 mg or 24 mg . We count everything.

Not only are the methods of tracking PHE but the way the  blood PHE levels are counted.

Range here in British Columbia, is 2 to 6 mm/dl

where as in the states and other locations, 120 umol to 360 umol

To convert my range to theirs I times 2 by 60 to get 120 umol’s

or to covert back take 120 and divide by 60 giving you the 2 mm/dl again.

This is why, when giving advice to others regarding phe amounts we must keep in mind that its not the same everywhere. Id really like to see a universal method so no matter where you are we count the same , values are the same and blood phe levels are monitored the same.

All foods are counted the same. Virginia Schuett’s food list binder is like a bible for us PKUers over here. She works so hard to make such a detailed list. We relie heavily on the food list. Each item of food is meticulously detailed with weight amount, measuring cup amount, phe amount, protein amount, exchange amount and calories amount.

All these different methods really get confusing after a while, and when speaking in the large online community.  So what can we do to get a universal conversion method? Id like to hear from you!