Endocrinology

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Hi

I have been diagnosed with hyperparathyroidism. High calcium and low vit d of 21.

I am due to see the specialist this Wednesday. Could you tell me what to expect please.

I have loads going through my mind. Cancer, Kidney failure anything that is going to kill me, due to this basically. I'm so scared

Thank you for any input

Emma

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7 Replies

  • Posted

    Hi,

    if you would like to join the private group on Facebook Hyperparathyroid UK Action4Change you can find out everything you need plus have a good moan as well.  It is one of the most informative groups and on Monday evening we had the privilege of one of the top surgeons from the famous Norman Parathyroid Clinic in Florida, join us for a questions and answers session.

    Regards

    Elaine

     

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  • Posted

    Hi Emma,

    I had hyperparathyroidism last fall.  I had surgery at the Norman Parathyroid Center in Tampa, FL in the winter.  First I would say, don't let your specialist take a "wait and see" attitude.  I'm sure you will just get sicker if you wait. Next, when the specialist talks about the surgery, make sure you get a surgeon who has a lot of experience with this type of surgery!  This surgery can be botched if the surgeon isn't experienced. I went to Florida for my surgery because I just wanted to get better and start healing and put this behind me and I believed this was my best chance. I was right; they have it down to a science.  Don't worry about those other diseases! Hyperparathyroidism can make you feel very sick, but after the surgery (if it's done right) you start to get your health back!

    Beth 

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  • Posted

    Emma

    The first thing to do is to stop worrying.  It's fantastic that you've been correctly diagnosed - lots of people aren't.  The chance of you having cancer is so small that you shouldn't even consider worrying about it.  Your kidneys are probably top notch although there is the possibility of you having kidney stones - again unlikely as you've not mentioned any symptoms.  The one cure for HPT is surgery and I've not read of one bad experience when an experienced surgeon has carried out an operation.  You should research who will be a good surgeon for you.  If you can travel to London then the one surgeon I would recommend is Mr Palazzo.  He recently carried out an operation on my wife and we've nothing but praise for his skills and bedside manner.

    But there's a fantastic website run by Sallie Powell called Hyperparathyroid UK Action4Change.  It's a facebook site and can be found through Google.  My big recommendation is for you to join it now as you'll get tremendous support and more detailed advice than I can give.

    You'll get so much better post op and be wondering what all the fuss was about.

    Keep positive and good luck and best wishes.

    Alan

     

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  • Posted

    Hi Emma- Jane just got your link, please listen to elaine and Alan th e FaceBook HUA4C site is amazing they have helped me so much tell them that elaine me ( Nicola) and Alan have recomeneded you. By the way where are you based and which specialist are you seeing? I have just come out of this illness.x
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  • Posted

    Hi all

    Thank you for your replies. I am based in Gloucestershire UK. The specialist I am going to see is in Gloucester hospital.

    I have very bad anxiety and depression and this worrying us taking it all out of me. Im worried that I wont have a scan on my first visit and so i wont know what glands are affected etc. I just want them out, to be able to move on from these years of anxiety depression aches and pains and just no motuvation etc.

    I dont know the best surgeon round here to ask for.

    I have asked to join the facebook page but havent been accepted yet

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    • Posted

      Sallie has accepted you.  Some people do apply but then they forget to look at the "other" mailbox on facebook to reply to her.  If you are in the Bristol area, there is a very good surgeon by the name of Mr Justin Morgan, one of the other ladies who was first on this group and joined FB had him operate on her a few months back.  She could not wait any longer for him on the NHS and so saw him privately and it wasnt that expensive and she is so happy to get her life back.  Worth every penny she said.  I have wasted the same amount of money on rubbish endocrinologist and overpriced tests plus a wait and see surgeon!

      Regards

      Elaine

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  • Posted

    Hi Elaine

    Thank you for the reply. I have messaged you. Regarding facebook, it says i have asked to join. I have pmd Sallie. Its probably in her others.

    Regards

    Emma

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