Bodybuilding w/ PKU (Phenylketonuria)

[KingClean]

I was born with the metabolism disorder known as PKU. Which means I was born without an enzyme in my liver to break down Phenylalinine. So basically I have to stay away from just about all protien because too much Phenylalinine can poison my brain. The warnings on sugarfree gum and diet soda that say Phenylketonurics: Contains Phenylalinine, thats for people like me. Anyway, I was just wondering if there were any other people on the forum with PKU trying to bodybuild or get into shape? I have found that it can be a hard road to put on any gains, especially with PKU. So I was just wondering if there was anyone else out there that wanted to share what they were doing.

Thanks

[sweetness64]

I also have pku and I just started to build my muscles. All i can say is drink alot of the forumula. Other than that i have no idea. You look like you are doing better than me. So if u have any tips please let me know.

[KingClean]

Glad to hear there is someone with PKU trying to better their body. I've been lifting weights off and on since junior high. I started to get real into it in high school as I became a member of our high school powerlifting team. I went from 90lbs as a freshman to 140lbs as a senior. Mostly that had to do with talking to my nutritionists and getting my calorie intake significantly higher. I was born with a very high metabolism so ever since I've been taking in alot of calories. In high school I took creatine and some NO. That helped quite a bit actually. After high school I quit lifting for a while, and then got back into it again. I weigh about 155-160lbs right now. I lift each body part once a week. I take NOXPLODE by BSN, which happens to be aspartame free which is awesome. And I also still take creatine. The only thing is, that I live in Kansas so after I turned 18 the state quit paying for my "formula." So they put me on the cheapest stuff that was about $300 a month which was fine for me to swing, I have a very good job. Anyway, in the last few months some prices changed and the formula I drink got discontinued. So the cheapest "formula" now that I can get is $700 a month. Which is ridiculous considering all it really is, is a amino acid cocktail with a multivitamin and corn syrup solids for calories. Well, I've decided to make my own drink with bodybuilding.com's free form amino acids. I now actually consume more aminos than I used to. Also I take a multi vitamin multi mineral. And for my calories I add a little light corn syrup, and some complex carbs. Seems to be going good so far. Its just too bad the state or my health insurance won't pay for this. I mean we need our "formula" to function. But anyway, thats pretty much what I do. I won't lie, its not easy for someone with PKU to make the same gains as quick as everyone else. But if you stick to it, you can pack it on. If you ever need any advice, or have any questions, dont hesitate to come to me.

[sweetness64]

My insurance pay for my formula. I was looking for some bcaa and i saw that you took ice. i couldnt find it at our gnc here or our vitamin shoppe. thoses are the two plae in my town to get them. my town is pretty small. so i got gnc brand bcaa in pill form. i started at 168-170 now i am at 175 and 6 foot 3 inches. i take ce2 & no2 by mri with super test by the beast bcaa 1800 by gnc and fish oil by vitamin shoppe with phenyl free 2 hp is my formula. at 250Grams and 46 to 50 oz. of water. = about 100 Grams of Protien.

[elitist]

I also have PKU, and I was on the forum looking for others who had it some time ago. Mine isn't quite as severe, though, and I'm not on formula anymore - haven't been since I was tiny. So I can't be of much help myself, but I wanted to say it's very exciting for me to see other people going through the protein struggle.

What was interesting for me was discovering that I wasn't ingesting as much protein as I SHOULD be. As a 22-year-old I was consuming LESS protein than I was when I was 5 and 6 years old, and this was my idea of a "healthy" diet, naturally. So I am just now getting my diet worked out. I can't have as much protein as anyone else trying to build up their muscles, but I suffer without it. As a female, it's difficult to tell where growth stops because I'm a woman and where it stops because of my lack of protein consumption. (Not to say my muscles are pushing any kind of limits )

Glad to hear everything you all have to say!

[SMC90]

STRONNG BUMP

i have pku too.. sup

[cj105x]

Yeah bro i suffer from PKU as well. I have been boxing and doing weights im starting to get some abs as well. You probly take the formula just as well. Do you take anything on top of that any extra amino acids as well or no.

[Enflix]

massive bump.

in for any information on supplements that I can take as someone with PKU. I'm having a chitton of the formula everyday. I tried talking to my dietitian about different supplements that were okay, but shes some little old lady that cant understand the concept of someone with PKU wanting to try to get big.

[Got2Bhuge]

Hey people,

I have PKU and I can lend some advice.

First of all, let me make it clear that I went off diet for a few years when I was bodybuilding, and I absolutely do NOT recommend doing that for anyone with PKU. You don't notice the symptoms at first. They sorta creep up on you over time. It took a couple years but I started noticing trouble focusing and multitasking at work, then eczema formed on my elbows and knees, and eventually I developed horrible insomnia. I didn't know what was causing these issues at first because I had been off diet for 2-3 years and consuming protein liberally without any adverse effects. So I finally decided to take a break from bodybuilding and go back on the PKU diet, and lo and behold... all my symptoms cleared up fast.

I'm not going to tell you to give up on your dreams - I know what it's like being fascinated with bodybuilding - but you have to keep your goals realistic if you have PKU. A high-protein diet is essential for putting on substantial amounts of muscle mass, and we PKU folks just aren't cut out for that. So I would recommend you make your goals to have a lean fit body, rather than be all cut and jacked like the meat heads at the gym.

For those asking about supplements, your PKU formula is definitely the top priority. GMP is great because it is a form of whey protein that is extremely low in phenylalanine, so talk to your nutritionist about it. The GMP supplement I get is called BetterMilk and is made by a company called Cambrooke Foods. Anyone with PKU should have access to it if they talk to their nutritionist. I also get the original LoPhlex because it is simply amino acids, water and flavoring - no corn syrup, sugar or other crap. That's what you need to be most weary about with your PKU drinks. Many of them are laden with sugar (or artificial forms of sugar) and you'll want to avoid all of that when sculpting your body.

Other supplements I highly recommend:
Creatine Monohydrate
L-Glutamine
Nitric Oxide
Testosterone boosters (6-oxo, ZMA, tribulus, etc. when you start getting into late 20's/early 30's)

Those above supplements are all effective from my experience and they will not raise phenylalanine levels at all. L-Glutamine is probably the best thing for us PKU folks. It will help in preserving your lean gains, aid in hypertrophy, aid the immune system and more. Creatine is great for better performance in the gym. It'll help you squeeze out those extra couple reps or lift 5 lbs more than last time. Nitric Oxide seemed to give me a great pump at the gym and I think it aided with my recovery, but I didn't use it for very long because it was keeping me awake at night. And the testosterone boosters are good for anyone who thinks their test levels are dropping and you want to raise them to aid with hypertrophy. But if you are young, like a teenager or early/mid twenties, then test boosters are a waste of your money.

As far as diet is concerned, everyone is different based on the amount of Phe they can tolerate per day. So my advice for anyone with PKU who is looking to gain mass is talk to your nutritionist. Work with them to put together a plan that will deliver enough calories from fruits, vegetables and grains. Avoid or greatly limit processed foods like the lo-pro foods the nutritionist will push on you. As long as you're getting an adequate amount of protein from the PKU formulas and getting enough calories from your diet, you will gain weight. How much of that weight is muscle or fat is dependent on your genetic body type (ectomorph, endomorph or mesomorph) among many other factors.

In case anyone is wondering about me and my fitness endeavors... I eventually moved on from bodybuilding because I kept eating too much protein for my PKU and was tired of raising my phe levels and feeling like **** all the time. What I've been doing for the last couple years is focusing on strength and conditioning. So rather than making my goals physique related (i.e. 200 lbs / 8% bodyfat), I'm now focusing on goals like "I want to nail a perfect one arm push-up" and "I want to do a muscle up" and "I want to do 30 pull-ups in one set" and "I want get less than 4 seconds on the 30-meter sprint" and so on. I do all this following a rather low protein diet of fruits, vegetables, grains and PKU formula. I occasionally will have nuts, seeds or beans, but not often, as they are really high in protein. I completely avoid animal-based protein like milk, eggs, fish, poultry and meat. Despite this limited diet and not lifting weights (I only do calisthenics now), I'm only 8 lbs lighter than when I was bodybuilding and not following the PKU diet, still have decent lean mass and body composition, and people still refer to me as a "big guy" now and then.

I hope this advice is helpful for anyone with PKU who happens to stumble on this thread in the future. Good luck on your bodybuilding endeavors, but remember to NOT abandon the PKU diet like I did. Keep your goals realistic. Think lean and athletic - not huge and shredded - and you should be pleased with your results. And most of all... enjoy the journey!

[DY8795]

The names yvan I have PKU and want to build serious muscle for the us army can anyone on this help me set something up to get started from excercise routines to diet. To homemade "formula". The whole nine yards.


I WOULD REALLY APPRECIATE IT!!!

US ARMY

[75Cameron75]

The names yvan I have PKU and want to build serious muscle for the us army can anyone on this help me set something up to get started from excercise routines to diet. To homemade "formula". The whole nine yards.


I WOULD REALLY APPRECIATE IT!!!

US ARMY

If you have a metabolic condition I don't think you can join the army, but I could be wrong. But if you haven't yet checked that out you definitely should.

[TheHappyMartin]

I was born with the metabolism disorder known as PKU. Which means I was born without an enzyme in my liver to break down Phenylalinine. So basically I have to stay away from just about all protien because too much Phenylalinine can poison my brain. The warnings on sugarfree gum and diet soda that say Phenylketonurics: Contains Phenylalinine, thats for people like me. Anyway, I was just wondering if there were any other people on the forum with PKU trying to bodybuild or get into shape? I have found that it can be a hard road to put on any gains, especially with PKU. So I was just wondering if there was anyone else out there that wanted to share what they were doing.

Thanks

Hi, I also have PKU! I'm 15 years old and I come from Norway. I do a lot of boxing, bodyweight exercises, running and a little bit of weight lifting. I'm thinking about starting counting calories , and I wondered if its hard for us with PKU to do that?

[spinietzschon]

Hi, I also have PKU! I'm 15 years old and I come from Norway. I do a lot of boxing, bodyweight exercises, running and a little bit of weight lifting. I'm thinking about starting counting calories , and I wondered if its hard for us with PKU to do that?

...well if it's been untreated for a while and thus caused the hallmark intellectual disability [1], then, that could probably get in the way of counting...

If counting in general is a snap for you though, then so should counting calories from phenylalanine-free sources

[1] Scriver CR, Kaufman S. The hyperphenylalaninemias. Phenylalanine hydroxylase deficiency. In: The metabolic and molecular bases of inherited disease, 8th ed, Scriver CR, Beaudet AL, Sly WS, Valle D (Eds), McGraw-Hill, New York 2001. p.1667.

[Swedenpku]

Hi iam frim sweden. iam wonderinh your pku levels are. On diet and off diet.

[chrisbeatty5]

hey guys I also have classic PKU and struggle to build muscle in the gym. I have been off formula for a very long time. I take a pretty work out N.O. Xplode and i also take creative which helps build the muscle. After my workout I normally eat one morning star spicy black bean burgers whish are I think 14g of protein. I don't know if any of you hears that there is now Vegan whey protein ..... I'm doing so e research on it to see if its cool for people with pku like us to have it....I will let everyone know what I find out so we can all get some gains in the gym if u wanna ask someone your self my dietician is at UVA her name is Barbara golden.

[chrisbeatty5]

Yo man any work out tips are welcome I also use no xplod and creative but I need formula really bad.

[ironwill2008]

Phenylketonuria is a serious condition, one that requires professional treatment. Taking advice from an internet bodybuilding forum is a bad idea.




Talk to your attending physician.