Regularly a person with PKU has their blood phe levels tested once a month . When I was trying really hard to be on track with y diet and keep my levels below 10 I did them once a week. I felt it made me more accountable to staying on diet. I found when I did them once a month I was more liberal and would eat better for the 3 days leading up to my blood dot then i would the rest of the month. By doing them once a week it discouraged me from cheating or eating liberally. Though I was more more liberal before I got pregnant. I was still considered on diet as I drank all my formula, and had phe levels below 10. However I did not weigh or measure my intake and I did not keep a food log or track calories. Now that I am pregnant I am doing blood dot cards monday , wednesday, and fridays. I drive them up to the hospital for them to be couriered to Vancouver’s newborn screening laboratory at BC Children’s hospital. Results are ran ASAP thanks to the pink sticker on my cards that classifies me as a maternal PKU patient and then results are emailed to me. The turnaround is usually 3 days.

A post on one of my PKU facebook groups this morning prompted me to share a blog post dedicated to these blood draws.

Up until I as 13, my blood was checked at a Lifelabs office through a venous draw from my arm. When I was 13 my clinic switched to blood dots and an annual venous blood draw.

I was taught to take my blood at home from my finger. I was instructed to always fast before a blood draw as this gives a true blood levels and is a bit more elevated then it would be after eating. So a true representation un affected by eating.

I warm my hands before hand. I have found through trial and error that a full shower before hand does the trick. I buy my lancets from the pharmacy in bulk. When I was younger we had a pen that we placed these tiny lancets in now we have a trigger that is the whole thing in one. I prefer the Accu- chek lancets. They have a 3 depth setting. I usually only use the second which is the default. Here is a photo of my lancets:

I poke my finger on the inner side of the pad facing me. I have circled the spot in this photo to help explain:

I was taught to not touch the card with my finger but I sometimes do accidently and it has not effected my test. I was shown to “milk” my finger and gently push around the puncture and let the blood flow . It takes more then one drop to fill a circle. I will press on my finger till I fill the circle before moving onto the next one. Though my finger does not touch the paper, I do dab the drop of blood against the card to help it along. usually 2 or 3 drops will fill a circle nicely. If I don’t warm up my hands first , then I end up not getting enough blood and it dries up before i fill a circle and I have to re poke my finger. I usually alternate what fingers I use to help avoid calluses but I tend to use my index the finger the most.

It takes a few minutes at most and is painless. The real pain is driving them up to the hospital but in the end so worth it.

Blood phe levels here are 2-`10 mg/ dl  for adults  and 2 to 6 mg/ dl for pregnancy. We measure in mg/ dl scale. I can’t quite remember the conversation right now. I know its either divide by 60 or by 90. I will have to look it up in past blog posts. Unless someone cares to comment and refresh my memory?

When I am not pregnant , levels take a week to 10 days to get results back. I look forward to the day we have a home testing device !!

I hope this helps those of you who has, and as always please feel free to ask me any questions , I am always happy to help!