My Protein Intake was Spiralling Out of Control

Stephanie’s story: How I took my power back and returned to diet

How it all started

I'm Stephanie, 42 years old, and I have classic PKU that was treated early.

My PKU childhood was pretty uneventful. My phe-levels only increased when I was ill or when I secretly snacked on no-go foods. My mom was fantastic and taught me to pay constant attention to my food. To the point that even as a young child, I knew to refuse treats I wasn’t allowed to eat.

That being said, I probably didn't have it as difficult as other PKU children (everyone’s tolerance is different) because my mine was 800 mg phe per day.

Then Came My Rebellious Teen Years

After years and years of managing my PKU successfully, my doctor told me that I could get a bit more relaxed with my diet. My teenage brain took this to mean I didn't need to think about it as often and could get away with making rough estimations.

And so, my downward dietary spiral slowly began. I was a vegetarian at the time and started by "cheating" with the occasional dairy product. To top it off, I no longer took any amino acid mixtures. But I thought I was fine. I had nothing to worry about. My phe-levels remained within the recommended range for adults, even below 15 mg/dl phe in the blood.

Everything seemed to be going well. I did my regular blood tests and went to the metabolic clinic once a year. I was OK with this way of eating. No nutritional deficiencies were found, and I had no difficulty concentrating or headaches.

I Got Married and Wanted to Have a Baby

I got married at the age of 23 and immediately knew that I wanted to have children. Which meant I had to get back on the PKU diet.

I spent around eight weeks getting into the swing of things and had no issues with my low-protein diet and amino acid mixtures. I was all in, knowing that I was doing it for my soon-to-be baby.

My daughter was born healthy in 2001. And straight after, I dropped the diet and fell back into old patterns - eating everyday foods that were as low in protein as possible - at least initially.

I Felt Like I Was Invincible!

As life got more hectic (raising a baby is a lot of work), I started making more exceptions, having more excuses to eat bits of meat, cheese-loaded pizzas, yoghurt and normal bread and pasta. Somehow, despite my cheating, I managed. My phe-levels remained below 20 mg/dl.

But Then It Got Bad!

After a couple of months of eating (basically) whatever I wanted, I started getting tired. And not just "yawn tired". I got "dead in my bones" tired, "feel like you're melting" tired. I struggled to get out of bed and couldn't complete the simplest tasks, even after having slept for 8 hours.

All I focused on was pushing through my half-day job for the sake of my family. By lunchtime, I got home and collapsed. I would sleep and sleep and still felt exhausted. By 5 pm, I need ANOTHER nap.

Once we had supper and got ready to watch some TV, I would pass out on the couch till bedtime, when I flopped down and slept some more. My family used to tease me about it the whole time – I actually got quite upset about it. Cause being this tired, drained mother and wife is not who I am.

I kept making excuses for my exhaustion, from blaming my work stress and household chores to putting my tiredness down to the pressures of raising a child. But even on holidays, when I had very few responsibilities, I just felt utterly broken.

So, I had my blood checked, and despite my exhaustion, all values were within normal limits. I even got a measuring device to monitor my breathing and sleeping to see if it could be sleep apnea. People with sleep apnea stop breathing during intervals at night – so they don't sleep properly – so they’re tired all day - still nothing. My breathing was fine. I knew something was up.

At my next clinic appointment, I mentioned my fatigue but underplayed the severity of it to my doctors because I think I was pretty ashamed. They told me to keep and eye on it, not knowing how bad it had gotten. Deep down, I knew it had something to do with protein intake.

That appointment was a bit of a wake-up call, and I half-heartedly started paying more attention to the food I was eating, cutting out protein, and taking my amino acids again.!

I Realised; This Is Madness.

After struggling through my days, something switched in my brain. I realised what I was doing to myself was INSANE. I couldn't carry on like this anymore. I attended a PKU information day at the Hannover Medical School, where I saw a film called "The Forgotten Children" that hit me right in my heart. Yes, when I was young and fit, I could mess around a bit – but I realised my excessive protein intake would profoundly affect my lifestyle and mental faculties as I got older. I was heading down a dangerous path, and I needed to make a change before it was too late.

DING - I Had My A-HA Moment.

I started researching on the internet what was new on the market regarding amino acid mixtures and low-protein foods. I ordered samples from various companies, tried everything, and finally informed the team at the metabolic clinic about my decision to go on a "real" PKU diet. They gave me sensible, practical nutritional advice that helped me get back on top of my work, life and energy again. And I also received help and support from other PKUers in the Nutricia Metabolics community.

I couldn't have done without them!

My Comeback - A New Attitude to Life

I had the will, just started, and it worked: my goal was to get my phe-levels below 10 mg/dl. I achieved that and have kept it constant for two years now. And what's even better: the sick tiredness are gone! I'm awake and alert, no longer so mentally depressed, and I'm interested in hobbies and activities again. I have gained a lot of quality of life, which is all the motivation I need to keep going because I never want to go back to being that miserable person again.

You can do it!