high phe levels

high phe levels

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high phe levels

April 21, 2013 in Uncategorized

hello This is my second blog now I just want to know if anyone has any advice about how I could eat stuff that won't make my phe levels stay down as I dont really eat much but as I'm losing weight it makes phe levels higher :( I'm a worrier and I have really high phe levels at the moment and cry a lot about them with worry but I can't seem to keep them down any advice !???? I would appreciate xx

11 Reviews of high phe levels

  1. Registered: Apr 17, 2011

    Posts: 0

    hesperiaNo Location

    Try eating low protein food. They should have some that might help you gain weight. How much phe can you have in a day?

  2. Registered: Feb 24, 2013

    Posts: 0

    Reading, INTERNATIONAL

    Thanks horselover13 I will speak to my dieticians about that thanks and I’m on 8 exchanges a day but normally only manage 5 which is why I’m so confused abot them being so high

  3. Registered: Apr 17, 2011

    Posts: 0

    hesperiaNo Location

    Okay that’s good! :) that’s really weird . I hope they’ll let you have low Protein food. It’s okay food but it helps. :)

  4. Registered: Sep 15, 2012

    Posts: 0

    Philadelphia, Pennsylvania

    What if you started adding more fats to your diet? Like adding extra oil to a salad or sautéing vegetables in olive oil? That would increase your calories without adding phe.

  5. Registered: Feb 24, 2013

    Posts: 0

    Reading, INTERNATIONAL

    Im such a fussy eater I hate oil and butter anything fatty makes me feel physically sick which makes it extra hard I’m such an awkward eater lol and with PKU too it’s not the best hahaha I will ask my dietician for something they are great

  6. Registered: Mar 30, 2008

    Posts: 0

    Southampton, INTERNATIONAL

    Make sure you are eating enough calories because if you don’t, it will make your levels rise and won’t feel good. So getting your exchanges and eating low protein products like bread and pasta will help you. Keep your protein intake constant as much as possible on daily basis will lower your phe levels also.

  7. Registered: Dec 29, 2011

    Posts: 0

    Anacortes, Washington

    DO you have access to virginia schuetts cookbooks for PKU people? It has great Ideas and recipies for people like us that eat like a bird and are picky about WHAT we eat…. The best advise is Lots of formula and low protien specialty foods…. I have a sensitive pallet as well and I struggled with the levels for 32 years…. I have found that in losing weight and acquiring energy to burn I need to have a mass amount of formula, half a can a day at min. AND have at least ONE meals of LP food that is filling…. If I drink my formula 6 times throughout the day and eat a good LP hearty dinner my weight goes down, my levels stay around 6-8 and I have the energy I need to burn while I excersize and to get me through the day… no reg. bread pastas or any carbs except a small amount of potato once a week. its strict but the weight drops quickly on this regime. I am CLASSIC PKU, If you dont have access let me kno I can get you one.

  8. Registered: Dec 29, 2011

    Posts: 0

    Anacortes, Washington

    PS the formula has a mass of the calories you need to take in thats where the energy cames in!!!!

  9. Registered: Feb 24, 2013

    Posts: 0

    Reading, INTERNATIONAL

    Thanks for the advice I appreciate it I am trying to eat more and hopefully when I go to hospital next month they will tell me of everyhing is getting better with my levels :) I love cooking low protien food too so that’s good

  10. Registered: Jan 13, 2013

    Posts: 0

    North Syracuse, New York

    I helps if you work out because I have noticed when I am either busy mentally or physically my levels are lower! On top of that make sure you are getting all your formula and that you measure and write down everything!!!!

  11. Registered: Sep 25, 2016

    Posts: 0

    No Location

    My 12 year old granddaughter was admitted for one week about her elevated Phe levels and it turned out that she had to increase her formula because her body was feeding off her own muscle (which is protein). You should really contact a dietician about modifying your diet.

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