I am 48 rys odl and have classical PKU...at this point i do my diet...am allowd the most i have ever been allowed...because i have tremors in left arm and hand..they tell em to take my blood only once every 2 months...i have the paper at thoem here...am thinking of just taking it on myself and doing my blood in liek 3 wks or somehting ..to keep on top of the levels...
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Well to do a test you only need very little blood. I Austria you can just sting your finger and drain a very small amount of blood onto a card. That is sent to the local hospital and you get your results back. I am sure with that little amount of blood you can take your levels as often as you want.
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Taking frequent samples to keep on top of your levels is good. Once you got them in the right range, and you feel comfortable with it, you can take them with bigger intervals (every 4 weeks and then every 5, etc).
I agree with Paul and Gregor, however, the limiting factor is the test papers - I've been told at my clinic that they are very expensive, however every time I ask for new batch they always send it to me. So no problems. I take my blood about every month. that gives me a more or less good idea of where I am, and if any adjustments are needed.Carpe Diem!