Keep track of your blood levels

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    • Keep track of your blood levels


      I'm very happy to be able to present a new feature to you. This new feature allows you to easily keep track of your blood levels and also (if you want to) make them visible for other members.

      You can therefor add blood levels within your profile. Additionally you can edit your privacy settings and decide who is able to few your blood levels. If you have entered your blood levels your profile will show your latest value as well as you can access a graph with all your levels there. Here's an example from Flashdancer.

      I hope you enjoy this great new feature :)


      PS.: We had to implement rules as we want to make clear that this is a information community and not a place for companies to advertise. This should not bother you at all, just a litte security so we can enforce our terms of condition if troubles should accure. - since 2004 - Invite your friends
    • Bonjour,
      This is my first attempt on pkuboard, so hello everyone on board!
      I am the father of a nine year old pku girl. My daughter is french like me, she's also english like her mum.
      Having dual nationaly ourselves, we pretty much like the idea of an international forum. And we have lots of questions.
      Checking on Flashdancer's profile (and I thank you for kindly sharing those informations), I then realise your phelyalanine level is kept between 10 and 15. According to the laboratory form, our daughter must be below 3 (that is "mg/%").
      Can anyone explain to us how things evolve with blood levels for a pku children, young adults and adults?
    • Hi,

      it is right that my level is between 10 and 15. But is better to have a level below my. I think level of 3 or less is very hard for the child. Even is getting older and then you have to eat more.
      When I was about that age of nine years I had a level between 6 and 4. At the time between 12 and 17 i had al level about 16.

      To have a level as low as posible thats the best, but if it is to low for your self you don´t have a chance to live like you want or how you feel. So that is why my level is little higher then it should be.

    • recommended blood levels depend on age, weight and amonut of protein that child can tolerate. These recommendations change over years and are very individual. Generally, as the child grows older, he/she can tolerate more protein and diet becomes a little easier.
      it is very important to follow specific recommendations, not "general idea". there are some younger people who are allowed more protein than me, and there are some older peopel who are allowed less protein than me. This is normal. what is most important is to learn to control the levels, learn what makes them go up and down.

      By the way units of measurement are different in different countries. This board allows for 2 types of units of measurement, for example, I enter it as mmol/L and my recommended range is around 300mmol/L that is then converted into mg/dl for the profile log.
      Carpe Diem!
    • Like Maria said the amount of phenylalanine that people with PKU can eat is very individualized. As for where blood levels should be kept I have always heard that 2-6 mg/dl is the optimum range. I've been told that most clinics (in the US at least) are a bit more lenient with adults and allow levels to reach 10 mg/dl before worrying. However, my dietitian and I still shoot for 2-6 mg/dl since that is the healthiest range.

      Have you discussed why your daughters blood levels are suppose to be below 3 mg/dl with her specialist? I only ask, because maintaining a level below 3 mg/dl seems like it would be a bit difficult in my opinion. Anyway I hope this helps somewhat. Take care!
      ~It's not about waiting for the storm to pass, it's about getting out there and dancing in the rain~
      Breanna Hardy 19 CPKU
    • I know you guys are going to think I am probably insane.. but as stupid as I may sound. I have PKU and I use comepletely different methods.
      so to me.. this is all somewhat gibberish. :cursing: It is really hard to determine how people calulate their Phe levels. Where there are so many different
      ways it can be done.
      Txup.... I wish you the best of luck with both you and your little girl.Their are many great recipes on here. If you get a chance try some.. on of my favorite snacks Iw ould ahve to say would be the banana bread. (and I dont usually like our speciality foods)

      Keep us updated.
      Sandra McCluskey :)
      Saint John, NB
      Mother of 1