Community Discussion Forum Adults and PKU Thin hair– PKU related? Or just taking after my Dad?

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #9598

    Hi there,

    I'm brand new to the site, and very excited to be networking for the first time with others just like me.  Just perusing through the forum its funny to see how similar the side effects can be from stepping further from your diet.  I'm 23 years old, a college graduate from Suffolk University and work in politics. 

    I know there are a bunch of stickys I can refer to in order to get some of the answers I'm looking for, but I figured I'd ask you all directly.

    Has anyone experienced their hair getting noticeably thinner? Possibly as a result of something diet / PKU related?  I've had dirty blonde hair most of my life, although it was brown for some time…  But it's recently become lighter than normal and really thin.  I've read that your hair may become lighter in color if your going too far off your diet.  But what about thinning hair?  It's not falling out at all, just really thin. You can almost see my scalp.  It's gotten progressively worse since my senior year in highschool when it started.  Anyone experience this?  Or am I just taking after my father? Ha


    Avatar of Kathrin

    First of all – Welcome to the board, Nicky! I hope you'll like it here.

    yes, I've heard that too, that your hair gets lighter, when your phe levels are higher… Well, and about the hair getting thinner… I could imagine, that if your not taking regularly your formula, this could be a side effect, or maybe you're taking in too little? Could this be? Do you have regular visits at your dietician or PKU doctor? How many gramms of protein supplement do you take in per day? 

    Have a great weekend! 

    Avatar of Breanna

    I have heard that high phe levels can cause lighter hair color. I cannot remember the reasoning, but it has something to do with melanin. As for the hair thinning I'm not sure. I do know though that poor nutirition can cause hair loss.

    Avatar of Debbie

    Good to hear from you.  Lighter hair colour is due to higher phenylalanine levels also lighter pigmentation associated with high phenylalanine levels. I would definately be looking into the amount of formula you are having and making sure you are having enough of it also take a super Vitamin B table with folate which should make your hair look healthier.

    Avatar of victoria

    More specific the lighter hair color is due to low levels of Tirosine (Phe should convert into tirosine by Phenylalanine hydroxilase enzime which is absent or almost absent in PKUers) and tirosine is converted into melanine who is resposible for hair, skin and eyes color. Probable you are low in tirosine bc you are not having enough formula. If you are loosing hair that it is not regarding with PKU directly, but indirectly probable yes, it is maybe the result of nutritional deficiency…or stress, or check with dermatology


    Thanks everyone for the input.  I am usually at a high stress level…. My job can be really stressful at times.  I'll be sure to take more of my formula and perhaps the necessary vitamins on the side to stimulate healthy hair growth.

Viewing 6 posts - 1 through 6 (of 6 total)
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