my first appointment with endocrinologist

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Hi there,

 I cannot tell you how good it is to find a forum about parathormone levels.

My GP sent me a letter saying that my bloods had come back showing raised parathormone levels and I have now received my first appointment with an endocrinologist.

What I wanted to ask is about this first appoinment and what I should expect!  

I live in Scotland UK, my appointment is next month and having found out what I could online regarding the parathormone, I am so hoping that the answer to my non-quality of life has to do with this, as it seems to be something that can be fixed., so I would appreciate if any of you can recall your first appointment, and if you felt that it was worthwhile.

thanks, x 

 

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7 Replies

  • Posted

    Hi Anne,

     Glad to hear you have a GP who is taking you seriously.

    Primary Hyperparathyroidism is the 3rd most common endocrine dis...ease yet there are no regulated guidelines for diagnosis and treatment in UK for people suffering symptoms and presenting with blood calcium less than 3.

    GP's are generally unaware of the condition and believe it to be very rare. They are not aware of Normocalcemic Primary Hyperparathyroidism and the chances of diagnosis based on symptoms is even more rare leading to years of misery and very poor health in UK. This group intends to change recognition by GP's and hospitals and make everyone aware of Hyperparathyroidism.

    Members worldwide are welcome. We all need a place to come and talk and share our experiences and advice. The outside world can be very lonely when nobody has even heard of hyperparathyroidism. We intend to change that by raising awareness

    Please join our group where you can moan and groan and find out all you need to know on facebook  Hyperparathyroid UK Action4Change

    It's a private group and the admin who went through 7 years of hell before finally being diagnosed with hyperparathyroidism has created a pamphlet which has been supervised by a top parathyroid surgeon in London.  We are hoping to get this printed at some point and distributed to all the surgeries in the U.K. who are so ignorant about this disease.

    Regards

    Elaine

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  • Posted

    Hi Anne

    I have the same question really. I am due to see the specialist on Wednesday 8th June. Could you tell me what your first visit entailed please.. Hope your on the way to being sorted now.

    I have tried to join the Facebook group but don't seem to be added. Doswell. You have any joy with it

    Good luck

    Emma

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    • Posted

      Ive just sent a message to Sallie who was in the national newspaper about her 7 years of hell through misdiagnosis.  She is one of the admins and we recently had an undesirable in the group which is private so she is being extra cautious and trying to ascertain if people are genuine or not.

      Regards

      Elaine

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    • Posted

      I joined yesterday. Its the best thing, this site. Im a bit of a pain on it with loads of questions, but mentally a lot better since soeaking to people :--)
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    • Posted

      Glad you joined. Karen would be very happy to speak to you. She was on holiday so not around until the weekend. Take care. Elaine x
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  • Posted

    Anne.  My strongest advice is to join a web site run by Sallie Powell  You'll get all the information and support you need there.  You'll have to google Hyperparathyroid UK Action4Change and email Sallie to get approval to join.  Do it now.  Alan.
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  • Posted

    Hi Anne; I see you posted this three months ago and agree with elaine (below).  when you get to a consultant that treats this condition on a regular basis you are past the uphill struggle to get a proper diagnosis and treatment.  All will be well!  Just to add that I asked my consultant whether it was actually 'rare' or whether there are people walking around out there with  diagnosis of ME; Osteoporosis; heart conditions; kidney stones etc etc who really have a Parathyroid problem at the root of them.  He told me that he usually sees people coming in on a stretcher...
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