I experienced extreme fatigue in my early twenties. It was when I was struggling with the diet. Not taking my formula/supplements, and working very long hours. It did get better some once I got focused on my diet again in my mid twenties. But for me, the game changer was sapropterin. I don’t get tired like that anymore. Ever. My levels are in range and I have energy. Now, I’ve heard from many who do well with the diet but still have low energy. That’s not my experience, but it shows why we need so much more info about this.
Appreciate your channel been training for a while with pku for over a year and your channel is helpful to our specific bodies which presents unique issues that no one else really would relate to. I have experienced extreme fatigue as a 30 year old with pku I suspect it may be related to lack of protein and a caloric deficit. European guidelines recommends for pku patients to supplement 40% more than WHO protein RDA'S bc the fast absorption of free amino acids
Thanks for commenting, the more I speak to people who have this condition too the more I find out that a good few have experienced it. Thanks for sharing your thoughts and experiences.
I just started kickboxing and haven't consistently been drinking formula. Besides being generally out of shape, I knew my body was really going to need the formula. I was exhausted afterwards and ready to nap the rest of the day.
When I was doing ballet I had issues with this . I was drinking formula and on diet but it decreased my tyrosine which effects you melatonin . Soo this all makes sense . I asked my dr about if maybe I need to increase my formula.
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I experienced extreme fatigue in my early twenties. It was when I was struggling with the diet. Not taking my formula/supplements, and working very long hours. It did get better some once I got focused on my diet again in my mid twenties. But for me, the game changer was sapropterin. I don’t get tired like that anymore. Ever. My levels are in range and I have energy. Now, I’ve heard from many who do well with the diet but still have low energy. That’s not my experience, but it shows why we need so much more info about this.
That Ms for sharing your experience Kevin ❤️ I think Sapropterin has been so good for me too.
Appreciate your channel been training for a while with pku for over a year and your channel is helpful to our specific bodies which presents unique issues that no one else really would relate to. I have experienced extreme fatigue as a 30 year old with pku I suspect it may be related to lack of protein and a caloric deficit. European guidelines recommends for pku patients to supplement 40% more than WHO protein RDA'S bc the fast absorption of free amino acids
Thanks for commenting, the more I speak to people who have this condition too the more I find out that a good few have experienced it. Thanks for sharing your thoughts and experiences.
I just started kickboxing and haven't consistently been drinking formula. Besides being generally out of shape, I knew my body was really going to need the formula. I was exhausted afterwards and ready to nap the rest of the day.
@@cc12310 yeah getting our supplement protein is so key to having a chance to do these things. Well done for starting kickboxing. 💪
When I was doing ballet I had issues with this . I was drinking formula and on diet but it decreased my tyrosine which effects you melatonin . Soo this all makes sense . I asked my dr about if maybe I need to increase my formula.
@@audrea2537 I increased my supplement too. Depends if they allow it or if they hold it back due to costs. Hopefully you get more.