what is the best level?

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    • what is the best level?

      Hi everyone,

      I am an adult with classical PKU and have always been on diet. However, I have many of the symptoms that people who are off-diet describe: depression, inattention, feeling tired and hungry, cranky, trouble sleeping, tremors etc. My dieticians are pleased with my levels, though in reading through some other posts it seems that most people strive for levels around 2? Mine are consistently 7 or 8. Do you others out there consider this too high?

      Also, I'm interested in hearing about people's experiences with Kuvan and how they got started on it.


    • Hi Kaitlyn;

      Continents, Countries and sometimes even within countries other boundaries are used. I can only speak for the Netherlands and a good level is considered between 2 (120 umol/l) and 10 (600 umol/l). Personally I strive to keep my levels around 5 or 6 (between 300 and 360). Recently more and more the relation is being considered between what you feel and the variations of your levels. Keeping around 5 consistantly or spiking to 8 or 9 and then dropping to 2 or 3. There might be a relation between the big variation and how you feel. Maybe someone can elaborate more on this.


      Paul van Berkel
      Veldhoven, The Netherlands
      ESPKU Boardmember / Project manager

      Don't complain about the snow on your neighbor's roof when your own doorstep is unclean.
    • Hey kaitlyn,

      i have my bloodlevels around 10. I try to have 8 but there is always something that i eat, that i don want to miss ;) In germany we say that you need a bloodlevel for pregnant people about 2 and adults can have up to 10 or 15. It depends on the Country.

      You can see my bloodlevels in my profil ...
    • Hi Kaitlyn!

      For adults in Canada (Ontario)safe levels are 120-600mmol/L (2-10), same as in Netherlands. 600-900mmol/L are the caution zone and everythinga bove it means there is no metabolic control.
      Levels of 1200-330mmol/L are recommended for girls who are planning to get pregnant.
      If you're not planning to get pregnant, having blood levels within 2-10 is fine.
      Most of us have blood level diagram in our profiles - you can take a look.

      as for the unpleasant side effects - have a chat with your doctor, perhaps there is a different cause to it, not PKU.
      Carpe Diem!
    • I was feeling that 60 grams of the vitaflo coolers a day was enough so I increase it by another 10 grams and started on a super vitamin B, with Vitamin C and folate natural tablet a day and I do feel much better for it.
      I feel more balanced and happier! In Australia the recommended Phe level is 120 micromoles to 400 for kids and 120 to 600 micro moles for everybody else but the medical professionals are not concern if you have higher Phe levels as long as they are under 1000.
      many people go by Phe levels but I study my phe/tyrosine ratio which is more important as we need to have ratios 10 or lower which is healthy conversion of phenylalanine hydroxylase to tyrosine.
    • I have been back on-diet for about 4 years now. I was off-diet for 20 years.

      During my time off diet my levels were 1100 - 1300 umol.

      Back on-diet I have been recommended to stay under 700 umol, I usually average around 600 umol.

      I notice the biggest changes within myself when my levels are in a state of flux, rather than being constant. So a steady 400 umol or a steady 600 umol is fine but fluctuating between the two levels (or any two levels) I am more irriated and unsettled.
    • I like keeping low Phe levels is important but if your body isn't making enough tyrosine a person will experience anxiety, depression, tireness etc because the right messages are getting taken by the neurotransmitters to the brain which affects the serotonin and dopamine levels causing problems. Hope that I have helped! :)