Community Discussion Forum Adults and PKU 26 years old and returning to diet after 5 years. Reply To: 26 years old and returning to diet after 5 years.

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Uncleteef- everything you are describing seems to go hand in hand with hi extremely high phe levels. I am not sure how things work over in the USA – and I see you are having a hard time with your doctors at the moment but It sounds to me like you really need some help. I think sometimes PKU clouds our judgment to the point that even if we know our levels are far too high – we cannot be physically arsed to do anything about it.

Do you know what I mean?

The crowd thing – I had that. At one point – if there was too much going on around my vision  would start spinning – and my senses would go haywire – If I touched something It felt like I kept touching it over and over again – even If I had moved my hands. I would stand up straight and feel like I was falling into the floor.

I have taken my meds for the last few days and followed the diet – and I feel better, but what you are describing sounds like severe depression -and if you are going to get out of the vicious circle you need to get onto the diet.

If your levels are high though you will feel like crap – and not want to do anything about it…. so you just HAVE to get your levels low… then in turn you will start to feel a little better… then you will WANT to stay on diet… but the key is getting yourself motivated enough to get the ball rolling.

Do you have a dietitian ? ||Do you have a family member who can motivate you?

Please don't let yourself get any worse. Please Msg me if you'd like to chat… I will try to help if I can xxx

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