Community Discussion Forum Adults and PKU effects of PKU

Viewing 15 posts - 1 through 15 (of 20 total)
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  • #8134
    Avatar of Veronica

    Hi everyone.

    I was just wondering what you think about this…

    I keep reading in places that people with PKU are more likely to be depressed or anxious. I have classical PKU, stick to my diet and my levels are normal (a lil on the high side sometimes). I have suffered from depression and anxiety for a few years now but never really thought it would have been because of the PKU, I thought it was just me.
    Does anyone else have similar experiences?

    Avatar of alesha

    i have struggled with depression and anxiety for years… an amazingly whenever my levels are under control im not as anxious and the depression seems to go away. i also get serve mood swings when my levels are high im told my mood swings are bipolar like…maybe if you lower your levels alittle being you say  they are sometimes on the high side then  youll feel alittle better.

    Avatar of Breanna

    If your phe levels are high you can be more likely to develop depression and anxiety issues. I had the reasoning behind this explained to me once, but to be honest I do not remember what explanation I was given. As far as I know if your phe levels are under good control you should be ok.

    ~Breanna 18 CPKU

    Avatar of Anna

    I have been really slack on my diet for the last 10 years but recently got back on track to 10g a day and I am probably the least stressed/anxious/depressed person I know! Nothing seems to phase me! Weird hey?

    Avatar of Eugene

    I have really bad anxiety when my levels are high. I am extremely sensitive to my PHE levels. The doctor has me on 100g of formula protein based on the theory that the other aminos in the formula block PHE from being used over other aminos. Seems strange but there is this thing called Large Nutural Amino Acid Suplementation that is based on the idea that if you have lots of other aminos other than PHE these will prevent the PHE from being used over the other aminos.


    i'm new to this site i have 2 granddaughters who were born with pku one is 4 1/2 and one 2 .the do seem very moody .sometimese the are actually mean i'm not sure why but i see alot of you are older but this may be the reason for their behavior


    yeah, i suffer from anxiety and also get panic attacks from it. a bout 4 weeks ago i saw what it said on the learn bit of this site and i have tryed my best for those 4 weeks know to stick to my diet and drink all my formula. but not much of a change yet.


    Avatar of Karla

    My two kids both have mild hyperphe and they both are very anxious and  both have signs of depression. We recently started Kuvan to see if we could get this under control.

    Avatar of yvette

    hello i have classical pku and at the min i have really high levels and i know what it is like to have depression and everything else. it isnt nice feeling at all. but now i have realised i really do have to get them down so ive started on a stricked diet and making sure i have my medicine and hopefully i will feel better soon.

    Avatar of Nicole

     Hi guys

    Just new to this website :-)

    Its true, high levels do cause depression and anxiety, and they  say the longer your off diet the worse it will get.  I have been on a slack pku diet for awhile now and i feel anxious and depressed amongst other syptoms.  

    Best advice is to get back on diet, they say it takes up to 6 weeks before you notice any change :-) but is well worth it!

    Best of luck x




    I've had for the most part a great deal of anxiety forever it seems.  My diet's pretty much under control, but I still have it.  I just got back my level from last week and it was 9.9  which for me is great!  But when I was younger…in my 20's I was off the diet, and was anxious and panicky.  These problems caused my to freak out at my job and almost lost my job over it.  I had no excuse, it just happened–long story

    And a bad case of agoraphobia.

    Avatar of Nicole

     Hi txwildcat

    How long ave you been in control of your diet for?

    When i am in-control of my diet, i am a totally different person, a whole new way of thinking, when am anxious i know my levels are high and start to think the worse of everything again.

    I am starting a fresh on my diet, i really want to stick it out, cause i want to enjoy life, my high levels are stopping me from Marrying my fiance, Going on holidays and Driving etc and i aint letting it anymore.

    I really hope things turn around for you, and you've only just returned to your diet.

    Take care x


    Avatar of Breanna

    My only suggestion would be to continue following your diet. Over time hopefully your anxiety issues will go away. If they do not go away don't hesistate to talk to your doctor or dietitian about it! They are there to help you.

    Breanna Hardy 18 CPKU

    Avatar of Roisin

    to be honest, my diet has always been on/off.  i stick to it really well, but i can go off it any time and eat foods full of protein.  i have heard of young children who tasted meat and been so ill they had to go to hospital.

    i also see alot of comments about depression, which i do not suffer from, though i do notice that i am happier and more alert on my diet.
    the doctors have always said that my pku is tougher than others because i have blonde hair and blue eyes – making me limited to 4 1/2 exchanges.

    i wonder why i have not reacted to 'harmful' foods in the same ways as others? has anybody else reacted to too much protein and how? i only feel a difference over a long period of time, where i feel muscle pains


    I have also in the pass have had depression and anxiety attacks when my phe levels are being managed properly. I have received my latest phe level which is 1081 micromoles tyrosine 109. I am just really sensitive to phe.

Viewing 15 posts - 1 through 15 (of 20 total)
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