Community Discussion Forum New to adult with PKU needs some info! Reply To: adult with PKU needs some info!

Avatar of erin

thanks everyone for the replies. Hyperphenylalaninemia is exactly what i was told i had…but was given no further information than that and, like i said, no treatment. there haven't been any developmental or cognitive difficulties, but once i got into my late 20's (i'm now 34) i started having daily migraines/headaches and major issues with fatigue and concentration off and on. i have been to so many different types of doctors to try to figure out the problem and mentioned the Hyperphenylalaninemia to all of them, but either they didn't know what it was or didn't think it pertained to my symptoms because no one ever suggested following up with a geneticist or anything like that.

over the past year i started taking meds for m igraines and hypthyroidism and that has helped me a lot, but i still battle the fatigue and concentration issues off and on.

my niece is a little over an hour away in rockford and i know they have a really good pku center there. i do plan on contacting her specialist once she gets in to seem him herself. i doubt there are any clinics/centers closer to me because of my rural area (i live in Peru, IL), but will def. check the links on this page.

oddly enough, i was on a low-protein diet until the past three years (vegetarian/borderline vegan) but then my doctor told me the lack of protein in my diet was probably contributing to my fatigue.

i def. want to know what my current levels are, though, and wouldn't have a problem at all adapting to a low-protein diet…i've changed my diet many times over the years for much less!

i was actually relieved to hear this can cause headaches and lightheadedness, because those are things i deal with very frequently and none of the doctors i have seen have been able to give me an explination for the lightheadedness, just a pill to take when it happens. getting these things under control for real would be a huge relief and improvement in my life.

thanks so much for all your information!

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