Hi I’m Katie and I have had PKU for nearly 45 years. Most of the time PKU isn’t something I think too much about. It is part of me. Managing it is just the same as managing my life with my husband, 2 kids, work, training, running a business, activity and other medical issues like asthma and sporting injuries.
Having PKU hasn’t stopped me from doing anything I have wanted to do. But I will admit it, at times, it has been a little more challenging.
Luckily when I was growing up my parents managed my protein for me. Back in those days we counted “units” (each gram of protein was about 3.3 units) and there was only one formula, so no choice. It was so disgusting, a horrible concoction made from partially digested beef blood. You can see why people my age and older with PKU are so impressed by the great range and better tasting supplements available now.
As a teenager my Phe levels were probably not as well controlled as they could have been but my mum could still be relied on to help me out. I didn’t appreciate her confiscating a doughnut she caught me with one afternoon after school, but she was only trying to help me! I managed to get through that and after year 12 I was an exchange student to England. As hard as it was being away for a year with letters as my only way to keep in touch with my family (yes I am that old!) managing my PKU was easier than in Australia as I was able to get a huge range of low protein foods on prescription. I also got to attend a PKU conference and a clinic where lots of PKU research was taking place. I remember my host families being very concerned about the diet before I came to them and at the end they were telling the next hosts how easy it was to manage! I think I encouraged them all to eat more vegetables at each meal.
Travelling at this time was fun. I took some of my pasta on my European trip and in Italy I asked the kitchen to cook some (with the help of our guide who spoke Italian). Although her translation must not have been accurate as I remembered they cooked about half the box as 1 serve!
I returned home to Australia and completed 5 years of university. I was living at home during this time so I had the advantage of my mum cooking for me so that helped my Phe levels to stay in reasonable control.
After uni I went back to the UK, this time as a grown up to work and travel by myself. Again, I was able to get my food on prescription. I guess my levels were ok but I don’t remember how often I was testing. I know in the UK I had to send in a little blood tube in a special box rather than just the blood spots we do here. I did more travel this time, I found staying in hostels I had more control of my food and could cook for myself. I also had a sheet from some friends with how to say Vegetables in many different languages. It came in very handy!
Meeting my husband in the UK we have continued to travel for varying amounts of time including to South America to hike the Inca trail for our honeymoon. I haven’t been testing my levels when I have travelled and I suspect they are probably higher than when I’m at home. Particularly as it is often harder to get vegetables and there are challenges of eating well when we are not self-catering.
Over the years I have tended to sort of “wing” the management of my PKU. I try not to have too many “high” protein foods in one day or not too many “high days” in a row but I don’t formally count my protein now. My phe levels are at a reasonable level and I don’t particularly notice symptoms if my levels are a bit higher.
The last time I regularly counted my protein was during my pregnancies. At this time, I started at 4g protein per day to get my levels within the magic 150-300mmol/L range. I think keeping a food diary for about a year for each child has put me off so I haven’t regularly counted since. I was so focused on being healthy for my pregnancy and was so focused on sticking to my protein and what my levels were I wasn’t able to tell if I felt better or functioned better at that lower Phe level.
I have suspected that my protein tolerance has improved since I have had children or that might be wishful thinking! Something I have been thinking about is keeping a closer eye on my actual protein intake and what happens to my levels and how I feel. I am starting to wonder whether having my levels a little lower might help me to be healthier as I get older.
I am interested to see if things I have thought might be due to being tired or busy or even my personality might change depending on my Phe levels. It would be good to find out what certain protein amounts do to my Phe level and whether my protein tolerance has changed.
For me I still want PKU to be just “a part” of my life rather than the “main focus”. I am planning to track my protein intake accurately 1 day per week and continue to do a dried blood spot test once per month. My goal is to have actually tracked my protein intake the day before my blood test rather than just guess. I am not consciously going to change “how” I am eating but to track my protein so to get a better idea of how much protein I am actually eating. I am not trying to get to the same Phe level as I had for my pregnancy’s but maybe aim for a Phe level around 350-450 instead of around 600.
I will share with you how I get along. Hopefully some of you might find how I manage my PKU day to day interesting and perhaps would like to follow along with my experiment.