PKU Clinic

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    • Yesterday I went to the PKU Clinic no one mistake as everything else was discussed except for my PKU. My endocrinologist who isn't qualified in PKU wants to put me on a diabetic drug for my fatty liver and then she said and soon you will be on a cholesterol drug soon so get use to it! She was so annoyed with me because I basically refused to have the diabetic drug since I am not diabetic. Everything has to be done her way or she isn't happy. I got very little information at all so to me there is no point going to clinic anymore. I just feel like crying and I am so depressed!
      I feel so alone!
      debbie colyer
    • RE: PKU Clinic

      Debbie-
      I'm really sorry to hear that your appointment didn't go good. Are there any other clinics near you that treat PKU? If there are maybe you could switch, I really hope you work things out! Hang in there!
      ~It's not about waiting for the storm to pass, it's about getting out there and dancing in the rain~
      Breanna Hardy 19 CPKU
    • Thanks Breamarie unfortunately there are no PKU clinics in my area. No one gave me any information to my PKU questions as I always like some feedback with the amounts of formula I should be having and also my Phe intake.
      All I got was attitude from the endocrinologist which I mentioned really upset me and she wants to give me diabetic tablets even though I am not diabetic go and figure..
      Thanks for listening to me I am just so upset and confused!
      debbie colyer
    • Debbie,

      You are not alone on this one. Adult people with PKU in Ireland are having a really hard time getting answers to their questions.

      There is only one clinic in all of Ireland and people have to travel for hours just to wait in a waiting room designed for children, the seats are tiny and there are toys everywhere; its really patronsing. All the dieticians and doctors cannot relate to adult pku'ers at all and do not know how to handle the questions that we ask them.

      Do you have one person like a consultant who oversees the PKU clinic, or do you regularly see just one person, if so I would go directly to them and find out what is going on.

      It really makes no sense at all that you should be put on this drug. As for the cholesterol, I cannot comment but maybe see your GP about this as it is more common?

      Just remember you are nevel alone with this. Just come on here and vent it all out and then go back to them and stand your ground. If she doesnt want to hear what you are saying then demand to talk to someone else..

      I hope it works out for you Debbie.. Keep us posted
    • Debbie,
      I'm so sorry to hear about your appointment. Nobody should ever be treated that way....especially by people who are supposed to be there to help you. I strongly suggest that you talk to your endocrinologist and tell them that it's YOUR life and YOU are the one that is going to make the decisions about it. Also, talk to your PKU dietician. Maybe they can talk to the endocrinologist and together they can work out a diet plan that meets both the needs of your PKU and cholesterol.


      I hope everything works out. Please keep us posted & feel free to vent anytime. We're all here for you!
      "Maybe when we realize just how much there is to share....we'll find too much in common to pretend it isn't there"
    • Thanks everybody it really great to know that you are all here for me. I am still clueless what I have to do but somehow will have to figure it out on my own with the support of you guys of course. As I probably mentioned that this clinic is a diabetes clinic and have no idea about PKU. Unfortunately we are unable to go to the kids clinic it might be a lot better as long as bedside manor is concern.
      My problem is always my liver function test which is slightly elevated but my ultra sounds shows a little bit of fat which is normal for a person my age. I know I should have been a doctor so I have some idea what is going on myself!
      It is just another thing I have to get to the bottom of but I certainly don't know why I go to that clinic as they are no help!
      Thanks once again I just don't know what I would do if I didn't have all of you here.
      debbie colyer
    • Debbie

      Sorry for the late reply had a tough afternoon yesterday... . :rolleyes:
      I am sorry to hear that your appointment went not too well. Hope you are feeling better today and if not I really hope you`ll feel better soon. Tell me can`t you visit another doctor or change the doctor? Well over here if you are not satisfied with one doctor you go to another one to have additional consultations or you just go to see what he`ll say.

      Take care
      Greets
      Gosia
      Many PKU recipes and information on various benefits for PKUers and families with kids with PKU.
      Language: Polish
      Visit: pkufamily.com
    • Wish I could go to another doctor but the problem is that I would have to travel 13 hours to do that across the boarder into another state which maybe impossible but I will see what I can do though. The best thing is that I got some good advice from a few great friends who are totally involved with PKU and are really experienced in their field. I have been told to walk one hour and keep my calories to 1500 and take a multivitamin as well so it is great to have some direction. Really appreciate everybody's support thanks so much.
      debbie colyer

      The post was edited 1 time, last by debbie colyer ().

    • Hi Debbie

      Sorry to hear they treated you like that at your appointment and not even discussing PKU is absurd. Good that you could get some help from friends. Is there no one that oversees PKU treatment in your state ? Perhaps you can contact the PKU organisation and see if more people have the same complaint then the PKU organisation can do something about it.

      Hope these suggestions help a bit and no you are not alone ! Whenever you feel the need to vent or if you have questions you know where to turn to :)

      Take care !

      Greets;
      Paul van Berkel
      Veldhoven, The Netherlands
      ESPKU Boardmember / Project manager
      paul.van.berkel@espku.org
      espku.org

      Don't complain about the snow on your neighbor's roof when your own doorstep is unclean.
    • Hey

      When I am reading your posts here about doctors it`s just sad. I go to the doctor and if I am suspucious or want other doctor to examine me I just take a walk or a bus and I can go to the different one to see what he says. Now I see how lucky I am. Just wanted to share this thought with you... .

      Debbie I hope you find more people unhapy with that doctor and you can work it out. Keep us posted.

      Greets
      Gosia
      Many PKU recipes and information on various benefits for PKUers and families with kids with PKU.
      Language: Polish
      Visit: pkufamily.com