Hello to all – I wanted to ask a question to those who are further along in their diet than I am. I continue to drive down my levels, yet it seems like I have leveled out around 8.
What is the difference in how you feel with levels of 8 vs Levels in the Normal Range 3-5?
I’m curious – Do you feel that there is a huge difference in how you feel and function?
David Harris nAdult Living w/ Classical PKU
Me and my little sister are supposed to keep our levels between 2-6mg/dl. But anyway, back in September my levels were usually around 10-12mg/dl and since Janruary I have kept them all between 2-4! Yay!
Anyway, I’m alot less tired. I used to have alot of issues with be tired by the time lunch came and I wasn’t able to concentrate in any of my afternoon classes. Also I had absolutely no motivation, what I mean is I never wanted to do my homework/go to dance classes/hang around with my sisters/drink my formula/eat the right foods ect. Just in general I didn’t want to do anything and I just wanted to sit around and watch tv because I was to tired to do anything else.
So basically I was tired, very moody/agressive, had very low concentration, I got headaches easily and over all I was never in a good mood. But now I’m happier then ever, I don’t really get headaches anymore and I’m doing great in both school and dance classes.
Breanna n15 w/CPKU
How you will feel at different levels varies from person to person. Some will notice the slightest elevation in phe level, and a very few (like me) can have fairly high levels (my levels never get too high, as my PKU is mild to moderate) but feel absolutely no difference between the higher levels and having the levels well-controlled.
When I was in the navy I wasn’t able to drink my formula. My levels are around 6-11, even in the navy, and I have mild PKU. I am struggling to get my levels down to between 2-6 I was eating mostly low protein foods but I was also eating things like chicken every so often, and sushi (I was stationed in Japan). My experience with this was not good. I started to get tremors, memory loss (which is still affecting me today), weight gain and the ability to build muscle, and something that I associate with memory loss; like tip of the tongue syndrome, I knew what I wanted to say and I just couldn’t spit it out or process it in my brain. I hope that makes sense to someone besides me I also suffer from lack of concentration, and I pass all the tests for ADD, although I have never been treated for it. I also had severe exzema, and developed seasonal allergies. I have heard that going off diet could lead to the development of seasonal allergies, but I am not sure how accurate that is. I have also heard that going back on diet will eliminate these problems. But I have never been strict enough to really know if that is true or not. Currently I am drinking my formula and eating mostly fruits and vegetables; although today I did have some tuna and chicken nuggets. nBut despite all of these problems I have experienced I graduated with honors from college and this fall I will be starting an MBA program. But I think that college would have been easier if I had been on diet completely. I support everyone who is on diet and those of us struggling with control over our diets.
Your levels off-diet are 6-11? And you have such severe symptoms when off-diet and off the formula? That surprises me. My levels off-diet are a bit higher than that, and I’ve never had any noticeable problems off-diet. I guess that just reinforces my point that everyone responds differently.
Wow – good stuff. I am in the process of changing my formula – first time ever. Going from Phenex2 to a Phenylade product. I will be able to drink it most effectively and it will really help based omt he samples I have had… Pretty excited and my dietician believe it will help with my weight loss hopes. we’ll see!
David nAdult living w/ Classical PKU (Pleasant, Kind, & Unique)
Hey David good luck with your new formula! My sister is drinking Phenex 2 right now, the unflavored one…which one were you drinking?
I used to drink Phenylade, I’ve drank basically everything they’ve made because I’m so picky I could never find anything that fully satisfied me. But I had to switch because it was to thick for me, for some reason my stomach could never handle thick things and I could never finish it all. nBreanna n15 (soon to be 16!) w/CPKU
At present I am not following the pku diet but I have classic pku.I am irritable, cant concentrate, moody, and tired all the time and my general health isnt that good either.I know that my levels are extremley high and I am going to see my consultant about going back onto the diet to see if that helps I am also wanting to start a family so I have to go on the diet again. I hope this helps you a bit.
That’s great to hear your deciding to go back onto your diet! I wish you the best of luck and I really hope that is solves some of your problems you said you’ve been having!
Also I just wanted to say I read your profile and it’s great to hear your brothers levels are coming down!
Breanna 15 w/CPKU (soon to be 16!)
I try to keep my levels around 2-3 but when i was younger theyd be up around 10-15 which was never good. I usually get headaches if my levels are too high or if I forget to take my medication. It affects different people in different ways but I can definitely tell if my levels are too high for me.
Meaghan n18 college student
That’s how I was when I was little, my levels would be anywhere from 8mg/dl up to like 12ish, but I’ve managed to get them down. Besides once all my levels have been between 2-4mg/dl since January and my tyrosine level has been high (huge accomplisment for me since I litertally used to never drink my formula)! Even then the one time when it wasn’t it was only a 7 so it wasn’t that bad. nBreanna n16 w/CPKU
If someone can tell me how to send a message to one of my friends on this board, I would appreciate it. Jennijen, where were you stationed in Japan? My father was stationed in Yokosuka, Japan in 90-92 – that’s where I graduated HS… Thanks,
Does anybody have any good suggestions to the stress of taking a blood sample, and tricks or techniques that make it easier?
If your having trouble bleeding, warming your finger up in warm water before doing the blood test helps. My hands are always ice cold, so this helps a lot. And if you ever have trouble with the lancets your using my tip is to try to find new ones. Growing up there was nothing worse for me then using the lancets that you had to ‘stab’ your finger with, not fun lol!
I have to prick my daughters heel twice a week and it always works so much better if i get her heel hot first. i run a rag under hot water and the microwave for 45seconds and wrap it around her heel while get her lancent and test paper ready. I Have found that if i don't heat her heel up it is almost impossible to get enough blood out of her without having to stick her multiple times.