Community Discussion Forum Adults and PKU adults and pku Reply To: adults and pku

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Unfortentually, not many doctors know what PKU is unless they have a degree in genetics. Up until I was about 10 I was lucky enough to have a PKU doctor who was also a family doctor. But when we switched to a new PKU doctor (because distance was a problem) we also switched family doctors. When she first saw me she told me ‘Oh, well I’ve never heard of PKU so I guess this will be a learning experience for me.’ It stinks that we have to be the teachers to everyday doctors, but there isn’t much we can do about it.
The reason I asked if it was your regular doctor is because I’ve never heard of counting in units that would have 40-80 as a good level. Maybe if you could ask him to give you a copy of the results that the lab sent him then it might be a bit more understandable? I’ll try and help you interpret them if you want. Depending on what your maximum phe intake is you might beable to leave bread in and then again you might not. If your doing your levels at home, so you can do them whenever you want, I would say until you see a dietitian play around with it and see what works and what doesn’t.
As for gum, hubba bubba and other ‘kiddy gums’ (in my words) are okay. The only non-kiddy gum that I can think of is Big Red. I have bought gum in a long time due to the fact that asparteme is in the majority of gums, but if you go to the store look on the back of the gum packages. If they don’t have the “Phenylketonurics: Contains Phenylalanine” warning then it should be okay. nAnyway, I have to go…I have massive exams tomorrow . nBre 16 CPKU

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