#pcu — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pcu, aggregated by home.social.
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CW: Blood
Done my months blood spots
#blood #bloodtest #pku #phenylketonuria #pcu #phenylcetonurie
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I've realised I haven't posted here in a while. Also, haven't posted about movies, books, or PKU.
PKU - my last result was 325umol/L, which is good news but a little higher! I did change the diet so that was kind of expected, was actually lower than expected 🤯
Movies: Watched Ready or Not 2: Here They Come. It was fine, kind of like TWKY but not quite so supernatural.
Books: How long have you got? 🤣
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RE: https://pkutalk.com/@soheb/116188606885004550
The results for this bloodspot was 227umol/L!
My weight lifting seems to be helping quite a bit with the bloodspots! Also, I've rounded down with my exchanges, which has helped quite a bit (I rarely ever hit 2 exchanges exactly).
I'm trying to cook my own food now to cut down on visceral fat that my weighing scales report back, so next results should be interesting...
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To all PKU folks - Share your story!
@poconnor has got some great PKU stories on her blog - one from yours truly 🧐 - and you can add your story into the mix as well!
Visit this link to find out more: https://www.pigpen.page/share-your-story-2/
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RE: https://pkutalk.com/@soheb/115830394945307434
I've been so busy posting about movies and books, I forgot to post some news about my PKU!
This strange attempt at blood spot gave me a result of 277umol/L!
SCORE!
#pku #phenylketonuria #pcu #phenylcetonurie #health #healthcare #nhs
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CW: Blood
Look, I tried my best.
#blood #bloodtest #health #nhs #pku #pcu #phenylketonuria #phenylcetonurie #phenylalnine
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Another good #union branch meeting #PCU #Psychotherapy and #Counselling Union #North and #Midlands branch. My first as secretary rather than chair.
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It's been a while, but I've finished my Magnus Opus
#blood #bloodspot #bloodtest #nhs #health #pku #phenylketonuria #pcu #phenylcetonurie
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@poconnor has wrote a new newsletter about what she came away with at the NSPKU. It's exciting stuff!
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Watched this by @phenylketonurianotebook very interesting (and my goblin brain appreciates the YT short):
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Just tried using the Mevalia rice and it's the one for me (an old photo of the rice with veggies).
For one I have freedom in cooking the rice (I cook it in water with vegetable stock cube mixed for added flavour). Another reason is I can taste each rice grain.
Third is that it ain't sticky when cooked (unless overcooking).This is one of the rare PKU rice that doesn't taste like pasta but manages to be even better than normal rice lol.
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Finally - an actual PKU post!
I got an email from Promin saying they've got this new low protein rice - rice which is pretty much "normal rice" but has gone through some process to make it only half an exchange.
As someone who loves rice, I'm going to give this a try later on!
You can buy the packet of rice online here: https://prominpku.com/product/echigo-low-protein-pre-cooked-rice/
#phenylketonuria #phenylcetonurie #pcu #pku #lowprotein #lowproteindiet
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The brilliant @poconnor has shared a PKU friendly recipe - Fennel and Orange salad (with clearly detailed ingredients that have protein, so you know where to skip):
https://www.pigpen.page/fennel-and-orange-salad/
#pku #lowprotein #phenylketonuria #pcu #phenylcetonurie #food #recipes #lowproteinrecipes #diet #lowproteindiet
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Made this last night, but used 2 OXO cubes instead of the veg stock in the recipe, and OH WOW was it delicious!
www.vitafriendspku.co.uk/pku/recipe/vegetable-medley-pilau-rice
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My latest blood test results was 676umol/L! (My last one was 950+ umol/L, so this is great news) 🥳
(I've only now realised I've completely forgot to provide blood spot samples as usual, but you know what to expect by now 😂)
#blood #bloodspot #pku #phenylketonuria #pcu #phenylcetonurie
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Did my blood test but completely forgot to take pictures of the sheet.
Just imagine a complete disarray of blood spots. Meanwhile, you'll have to settle on my finger instead.
#blood #bloodtest #pku #phebylketonuria #pcu #phenylcetonurie
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A new blog by @pcublogue which adequately explains the trouble of not managing the diet well with PKU
#pku #pcu #phenylketonuria #phenylcetonurie #health #healthcare #genetherapy
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CW: Blood
Honestly, what did you expect?
#bloodtest #phenylketonuria #pku #phenylcetonurie #pcu #blood
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The fantastic @poconnor has released a new newsletter about the origins of PKU. You can read it here:
#pku #phenylketonuria #pcu #phenylcetonurie #health #nhs #birmingham #sheilajones #uk
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Our workplace has moved to a new location. It's lovely, but it's also equally frustrating to someone like me who has PKU.
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Chaired our #North and #Midlands (#England) #Counselling and #Psychotherapy #Union #PCU meeting. Am energised by our branch.
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CW: Blood
Did a blood test this morning. Added more blood spots as it was starting to get a lil too serious in here 😤🥴😎
#phenylketonuria #phenylxetonurie #pku #pcu #lowprotein #raredisease #nhs #blood
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CW: Food
Mogo chips with normal chips and vegan mayonnaise.
2 PKU exchanges and utterly delicious 😋
#pku #phenyketonuria #pcu #phenylcetonurie #lowprotein #lowproteinfood #food
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Just saw Promin did a video making low protein Yorkshire puddings on my YouTube feed
Gotta give this a try!
#pku phenylketonuria #pcu #phenylcetonurie #lowprotein #lowproteinfood
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Did my blood test this morning! Nearly forgot as well 🤦♂️
It was absolutely freezing this morning so I had to use two fingers to do the blood test (oops) - I hope it still counts!
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Hey all, @jjunebrown has released a new memoir book called "When the baby is *not* ok - Hopes & Genes"
US folks can get it here: https://www.amazon.com/dp/B0DT7MZ7YL
OG Post: https://pkutalk.com/@jjunebrown/113866689192925307
#books #bookstodon #pku #phenylketonuria #pcu #phenylcetonurie #reading #kindle
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Another good #Counselling and #Psychotherapy #Union #PCU #North and #Midlands (#England) meeting
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I'm back, folks 😎 #bloodspot #blood #health #pku #phenylketonuria #pcu #phenylcetonurie
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CW: Blood
I'm back, folks 😎
#bloodspot #blood #health #pku #phenylketonuria #pcu #phenylcetonurie