PKU.com Community Discussion Forum That’s PKU life! Blood levels are back

Viewing 11 posts - 1 through 11 (of 11 total)
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  • #5138
    Avatar of Breanna
    BreaMarie91
    Member

    I’m just sooooo super excited. We got our levels back today and mine was 6.9mg/dl last month we took them and the time before that it was like 8.6mg.dl, but now it’s 2.2mg/dl I was soooo happy. And then more good news is that my little sisters level was like 4.4mg/dl which is alot better then her last one which was in the teens. But so now I’m offically in a very good mood to know that I brought my level down alot and plus my tyrosine level went up to 0.9 (which is really good) the last time it was super low.
    Plus this last level we took I did by myself (usually my mom does it). It was the first time I’ve done it myself, and know I’m probably what you could call a ‘late bloomer’, but I’m defintally going to be doing my levels myself from now on. It’s just so much easier.

    #5287
    Avatar of Emily
    Emlou93
    Member

    That is awesome Bre. It does feel nice when you get back your levels and yours is lower than last time. It always makes me feel good. I still have my mom do it too. That is awesome that you can do it by yourself now. My sister (julie) does it by herself and i don’t think i will be able to for a while still.

    #5290
    Avatar of Breanna
    BreaMarie91
    Member

    Don’t worry I’m sure you’ll get there someday. Well I shouldn’t say I can do my levels totally on my own. I was able to poke myself the first time but then my mom had to finish for me and this last time I had her do it, but I’m getting better. We did our levels like on the 2nd and we still haven’t mailed them in! But when they come back I hope they’re good!

    #8259
    Avatar of donna
    catcocoa
    Member

    Hi brea this is catcocoa whet is a normal level? My reveals been running 9.9 and a 8.0 the lowest level is when I first took kuvan and it was I think a 3.2 or a 3.4 whet is normal my dietitian side it is still a little high. The lowest is when I first started kuvan why is that low when I first started kuvan.
    Catcocoa.

    #8260
    Avatar of Breanna
    BreaMarie91
    Member

    Ideally most dietitians want phe levels to be between 2-6 mg/dl. Some dietitians are ok with levels up to 10 mg/dl if you are an adult, but the ideal range is 2-6.

    #8261
    Avatar of donna
    catcocoa
    Member

    Thank you for your reply.
    My dietitian side that 8.0 is a little high and even a 9.9 so you think my levels should be lower. I would be happier if it was 4.0 or even a little higher. Do you know why when I first took kuvan it was a normal level. I been on kuvan for about 3 months now and it is higher now.is kuvan suppose to do that. I eat all the same way is when I first started taking my pills.
    Again thank you for your reply.
    Catcocoa.

    #8262
    Avatar of Breanna
    BreaMarie91
    Member

    Hmm…I am not sure why that would be. Have you been eating the same amount of phe the whole time you have been taking Kuvan? Have you also been drinking your formula? I know if you do not drink your formula it can increase your phe levels.

    Do you have a doctors appointment anytime soon? If so many you should ask your doctor or dietitian about this. Otherwise maybe you should try calling/emailing your dietitian.

    #8264
    Avatar of donna
    catcocoa
    Member

    Thank you for your reply. Sometime I eat more then other days. I'm supposed to have between 10 to 11 grams of protein a day. Could that be my problem. I don't use measuring cups I eye ball it when I prepare my food.
    Again thank you.
    Catcocoa.

    #8265
    Avatar of Breanna
    BreaMarie91
    Member

    Obviously I am not a doctor, but that little bit of difference in how much phe you eat each day might change your phe levels. Sometimes I estimate how much food I am eating as well, because it is easier than measuring it out. Just make sure you're eye balling is pretty accurate otherwise you might eat much more phe than you had planned to :).

    #8276
    Avatar of donna
    catcocoa
    Member

    Ok thank you for your help I'm going to try to do better in how much food I take in.
    Catcocoa.

    #8280
    Avatar of Aryan
    aryan
    Member

    Really interesting post. Thank you for the information.

Viewing 11 posts - 1 through 11 (of 11 total)
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