New blood level – HAPPY :)

Hey everyone,

I just got my new blood level, it’s 7,6mg /dl. That’s great, I am so happy. Plus, it’s not that hard as I thought it would be. I try to have enough low protein food at home (sweets, cheese, etc.) so I have good options when I’m craving for something.

It’s also good to have a food dairy, so I can look up what average phe amount I had per day (for the level 7,6mg / dl I had about 600 mg Phe per day).

I’m wondering, do you lead a food dairy? Do you note down weight, calories and blood levels? Does it help you?

Do you have a fixed phe amount per day, which you try to fill up exactly, or, if you took more or less, do you try to balance it the next day with the exact amount of phe you ate more or less?

I’m looking forward to your feedback – that’s so interesting 🙂

Katie xxx




3 thoughts on “New blood level – HAPPY :)

  1. Kate says:

    I don’t ordinarily keep a food diary as I’m terrible and keeping it up and remembering to write in it, but being pregnant at the moment and on 0 exchanges due to morning sickness (UK exchanges – very different and we have a lot more that is counted as free) it’s essential. I just note down what I eat and drink. When I get some phe intake back I will write down the food and drink I eat and the phe. I have never recorded calories as I find it a bit too much and I would have to go searching the net to find out. I don’t feel it’s worthwhile and our dieticians here don’t require calories. In fact, they encourage against calorie counting as it can be too overwhelming (and we don’t get a food list in the same sense of the one in the US, so it’s not on there – we just get one sheet of paper with the most widely eaten exchange foods and the grams per exchange. It doesn’t even cover one whole side of the paper). I weigh myself weekly but don’t write it down. I just make a mental note and when my dietician asks me if my weight is stable (which it needs to be right now) we can discuss accordingly and if necessary change our approach to the kinds of foods I’m eating.

  2. Lisa Adams says:

    Hi ….. I am really enjoying reading these messages:-) Currently I have 17 exchanges a day and my last blood phe level came out at 610, ( measured different to yours). I have to be below 700, so 610 is great for me and I feel so much better!:-) what protein substitute do you take? I have just changed back to PKU express from PKU Coolers, it is less convenient than the coolers, but I feel much better on it and my levels are better!! I don’t weigh my food that I eat, but estimate quite acurately as been doing it for over 41years!!
    Look forward to hearing more… Lisa.

  3. Kay Emerson says:

    I am so happy to hear that you are doing so well with your levels! Yes I do keep track of my food intake with the DietWell App . I am allowed 35 exchanges per day but don’t always meet them. So I make up the diffrence by either eating cookies I make that have extra Phe amounts to allow the diffrence called Plus cookies or I drink a little bit of cows milk if I am lacking way too much . 1 Tablespoon . The Plus cookies are 4 exchanges and I have cookies that are 6 exchanges also for times when my levels are too low.

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