Building muscle with PKU

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    • Building muscle with PKU

      ***I AM A CLASSIC CASE***

      Protein is a key source of building muscle but not the only required. Calories are needed also. If the individual is not consuming enough calories PHE levels can sky rocket. This is due to your body compensating for use of more calories than consumed. The body actually breaks down other muscles for the calories to rebuild the muscles that were just ripped during the lifting exercise, which releases PHE. Any activity increase requires an increase in calories, and PHE because the body needs a minimal level of PHE to operate properly. In my own experiences I have seen high levels due to an increase in activity and not calories, I have experienced high levels which were accompanied by symptoms of the disease. A lower level in PKU patients reduces depression, fear of being in social situations, and stops IQ drop ( After getting on the diet and watching closely what I eat daily has greatly increased my quality of life.

      An increase in physical activity REQUIRES an increase in PHE intake and calorie intake and a nutritionist specializing in PKU should be consulted.

      A little bit about me:
      I have several courses in sports nutrition, exercise science, muscle building, and cardio exercises...
      I lift 5 days a week, and bike/run/rollerblade any cardio activity 6 days a week...
      In training to be a United States Marshal, training for numerous military 5k, 8k, and 12k courses...

      I consume 2,000 calories of formula, 1,000 calories of normal food, and 1,000 calories of low-pro foods.
      In the normal food intakes I need to consume a minimal of 700 milligrams of PHE

      In addition to the 4,000 calories above I also consume a weight gainer of an additional 1,500 calories for a total of 5,500 calories per day.

      It's no easy task and requires weekly testing and daily documentation noting what you ate, calorie intake, PHE intake, and the activity done for the day all facilitated through my hospital.

      levels should range from 2.2 ml/dl to 7.9 ml/dl which is the target range for people with PKU. (ml/dl = milligrams of PHE diluted in your blood stream)
    • This is an interesting piece you have written. It has made me curious. I have a few comments>

      If the individual is not consuming enough calories PHE levels can sky rocket

      Can you suggest an article / research paper / book for me to be able to follow up this statement.

      I have seen high levels due to an increase in activity and not calories

      Is this because you are now consuming extra protein during periods of activity?

      An increase in physical activity REQUIRES an increase in PHE intake and calorie intake

      Is this just a general statement? Or are you specifically suggesting that that someone with PKU needs to increase their PHE levels if they are very active? If it is the latter then I strongly disagree, one thing phenylketonurics do not lack is PHE. Deficiency in other amino acids certainly (e.g. Tyrosine), but then this is what the supplements address (Lophlex etc).

      As for caloire intake, yes intense exercise will naturally sitmulate the body's requirement for more calories. The increase in calories will invariably lead to an increase in PHE. I note you are on 5,500 calories a day, so it must be very hard indeed to keep PHE low and eat the amount of food required for that calorific intake.

      The reason I ask these questions is because, like you, I do lots of exercise. However I never found any level of activity that I am performing to effect the level of my PHE. The only thing that effects the PHE in my body is what I eat.

      Some years ago I wanted to get into body building. At the time I was off diet, but still checked with my PKU doctor anyway, because I wanted to greatly increase my protein intake to be able to build muscle. His response was to try it and see what happened, he reasoned that the increase in PHE in the extra protein consumed may be used in the rebuilding of muscle that was being broken down by my time in the gym. That being the case the PHE would not travel to the brain, which is the big problem, as it was being used rebuilding tissue. In the end my levels increased by about 100 umol from my usual off diet level of c 1150 umol. To be honest this was pretty inconclusive and I gave this up after a couple of months as I got bored trying eat so much protein. Now the doctor suggested I could try this as I was doing generally well 'off diet', but also because he said honestly there was still much they did not know about the intricacies of PHE's interaction with the body. So I guess in some ways I was a guinea pig 8o
    • In the end my levels increased by about 100 umol from my usual off diet level of c 1150 umol.

      ^^quick question... what type of measurement unit are these numbers in?

      All this information is based on what my dietitian has told me, which is why I stated that it is super important to consult them before tweaking your diet... I am required to check in with them every week for blood levels... Actually on a diet record for the next three days =) I was told to increase my normal PHE intake level from 300 milligrams per day to 700 milligrams per day... that yields a level of approximately 3-9 milligrams of PHE diluted in my BLOOD STREAM. I am unsure about the brain, I will consult my doctor and get back to you. (at 700 milligrams i am lifting for two hours then running for one) PHE is converted into tyrosine (which we cannot do, so our numbers spike) for the most part, but the body does need some PHE for nerve function through out the body (not alot is needed though, PHE by itself is poisonous to anyone not just us, Our little sweetener friend {cough cough} aspartame is PURE PHE and research is finding that aspartame is bad {which was already known}. lol that is why companies are starting to use Ausulfame Potassium as a sweetener, we can have that, sorry for the side rant), and yet still the excess amino acids in the body, if need be, can be converted into fuel. PHE being converted to energy is my hypothesis for why levels decrease in the body during workouts, my hypothesis is shared by my dietitian after I suggested it to her. Your muscles are in "alert" mode and are expecting to do some more ripping for a half hour after you stop working out, it is in this half hour you NEED at least 200 plus calories to begin a rebuilding of you muscle... if you don't then the body breaks down other muscles for the calories to rebuild the ripped muscles... I am unsure about the use of PHE for a muscle re-builder but it wouldn't surprise me due to my previous statement and that information is based on my trainer... The last time I attempted to bulk up I stayed on my diet, didn't increase my calories, and my knowledge of the subject was severely lacking.

      I tested myself (not a good idea) and I only ate low protein foods and the prescribed formula with high caloric intake with the workout routine I am currently performing... I started to see sparkles in my eye site... they would appear like many distant flash lights being turned on and off, and when I know my levels are too low is when I see those sparkles... (i dont know if the sparkles are from low PHE, but the timing of the sparkles is consistent with me being on strictly low PHE foods... and my observations indicate that the low PHE levels cause the sparkles) needless to say DONT do that, lol

      When you increase your activity I am not saying just do it and increase your PHE intake, no. A specialized dietitian for PKU patients should be consulted, they will set your PHE intake due to the amount of activity you are participating in. The level of PHE intake is all subjective not objective one size does not fit all. There are many factors that influence PHE levels... caloric intake, physical activity, types of foods eaten, and lifestyle choices... I had no idea about that until I started this program.

      I've always been a small guy, but this summer I packed on alot of muscle mass... I must say I am pleased and looking forward to a rewarding career...

      So don't give up on your body building dream...

      My dietitian is out of town but when she gets back I'll ask her if she can refer me to some sources then I will post them here...
      If anything is unclear let me know and I'll do my best to clarify. is a great place for some of the signs and symptoms of high levels...