PKU.com Community Discussion Forum What’s the Phe? questions about Kuvan and self phe test Reply To: questions about Kuvan and self phe test

#8870
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Lynsey23
Member

hi im lynsey and i live in uk i have classic pku and its been a rollercoaster 4 me with the low protine diet, ive been off the diet 4 12 2 13 yrz and i have found it realy hard 2 get back on the diet im 23 yrz old now and im still not on the diet properly but i am going 2 start diet again cuz me n my fiance' wants 2 start a family of our own. Having pku at secondary school it was very hard 4 me seeing other kids eat anything they wanted and i couldn't i thourght it wasn't fair so i started 2 eat what i wanted because i felt very embbarest about the food i had 2 eat  . last yr i started 2 take my madication and stick 2 the diet properly and me n my partner was trying 4 a baby, when i got my blood levels down 2 120  which is very gud we was so happy that it all of a sudden went wrong cus the pharmacy couldn't get my madication in on time 4 me 2 start a new lot and i was heart broken cus my blood levels went frm 120 2 880 so i gave up bear in mind that i put my prescription in 3 weeks b4 i got the gud blood results 

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