When my levels are high, I can feel it immediately . I use to never believe that, and always said I was fine. Now I can tell with in a few hours.
When I was younger and was admitted to BC Children’s hospital with very low levels, they actually had to withdrawl me. I still remember it. Not an experiance I wish to relive. It took 3 days to “crash” down my levels. The first day I could have nothing but my formula. On day 2 and 3 I had my formula for all 3 meals but with lunch and dinner I was aloud to have applesauce too. Then foods where slowly re introduce as my blood levels where closely monitored with daily blood tests.
It was a good thing I was in the hospital for this process, I highly do not recommend anyone one try this at home on their own. The side effects from crashing your levels down and the hunger that goes with it was excruciating.
Now when I know my levels are high and its for an extended amount of time I have my own way to drop them down faster but not to crash them out.
My method is to focus souly on eating low protein food, breakfast, lunch and dinner and nothing else for 3 days . Well also including my formula. I never miss that. During this 3 days I do not worry about going above my recommended calories or being to low with my daily intake.
After the 3 days If I still feel “high” I will continue on a day to day basis. I usually start off with a blood test and end with a blood test. If I feel like they have lowered I start adding in foods again, cooking a variety of ways with different ingredients and being more “normal” .
I can tell my levels are high because I feel sluggish, “off” sick, nauseated, headache, trouble focusing, upset stomach, trouble finding words, being in a “fog” sensation and just generally un well.
When my levels are lowering I have similar symptoms but they feel different. It is hard to explain but I can tell they feel diffrent . Also they are not all at once. Most will ease off by day 2 expect the headache that will linger for a few days. Eventually I will start to feel more clear and “normal ” again.
I do not share this to teach others what to do, as I do not recommend trying to do something like this with out supervision from your clinic or if you do not know your body as well as I know mine. You should always talk to your clinic first, they will be able to guide you and make recommendations. I share this with you as it is my experience and because I was asked too.
No one is perfect, we all have off days, high levels will happen. Dont beat yourself up, just pick yourself back up and try again.
For me my levels always get higher when I am away from home on a trip or vacation. Example, When we where just in victoria. I knew my levels where going up over the holidays, and eating out while away did not help. I ultimately pay the price no one else, and now I must work harder to get back on track.
I really hope to one day master being able to travel and sticking to my strict diet. Even if its easier to say ” oh well I am on holidays , ” and give in!
Discover more from I am PKU Strong
Subscribe to get the latest posts sent to your email.

Again, thanks so much for being so candid. I know this information hits home to many.
LikeLike
I was off diet most of my teen years (my own rebellious phase I suppose) so I didn’t really know what it felt like to be off diet because I just always was and it didn’t seem to impact my ability to focus or my performance in school so I was like ‘whatever’.
Then 2 years ago I moved away from home (out of town) and began experiencing increased anxiety and mild agoraphobia symptoms. I immediately connected the dots and went back on diet and reconnected with my clinic. I’ve been on diet for 2 years now and if I cheat (like on holidays or when traveling) I now can tell my levels are high because I usually get headaches and become highly irritable and perhaps more anxious.
My lesson was just because you’re off diet and you feel like it’s not affecting you. It is.
Thanks for sharing your experience.
LikeLike