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I am living with Insulinoma has anyone heard of this its ruining my life

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  • 30-01-2012 11:50pm
    #1
    j6972
    Closed Accounts Posts: 3 ✭


    Carsinian Thau wrote: »
    That is pretty bad tbh. Although I recently had a medical student ask me if the initial symptoms of my diabetes were caused by an insulinoma. A tumour that secretes insulin causing the symptoms of diabetes? :rolleyes:
    Please help


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    #2
    j6972
    Closed Accounts Posts: 3 ✭j6972


    I have Insulinoma and I wondered has anyone heard of it or does anyone know of a success story. I have this 7 months I have excessively high insulin levels and very low blood sugars. I am so tired all the time. It basically is a tumour in my pancreas that is very very hard to detect on scans and is a very rare condition. Would love to hear from anyone who knows about it. I have been given Insulinoma tablets to try.


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    #3
    graflynn
    Registered Users Posts: 499 ✭✭graflynn


    j6972 wrote: »
    I have Insulinoma and I wondered has anyone heard of it or does anyone know of a success story. I have this 7 months I have excessively high insulin levels and very low blood sugars. I am so tired all the time. It basically is a tumour in my pancreas that is very very hard to detect on scans and is a very rare condition. Would love to hear from anyone who knows about it. I have been given Insulinoma tablets to try.

    Whenever I hear the word tumour I always assume that the only approach is to cut it out. Have you google other treatment options?


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    #4
    the_syco
    Registered Users Posts: 37,295 ✭✭✭✭the_syco


    j6972 wrote: »
    It basically is a tumour in my pancreas
    Google gave me this: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001424/

    Seems there is treatment for it (removal of the tumour and/or drugs), but what, if anything, were you advised to do when you got the scans done?


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    #5
    sue1234
    Closed Accounts Posts: 1 ✭sue1234


    I have a similar situation. I get low blood sugars if I don't eat often. I had one documented high insulin during an OGTT of 185. How high was your insulin? Are you having surgery?


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    #6
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Hi my husband had an insulinoma removed nearly 2 years ago in Dublin, there is a very good forum on facebook where people from all over the world talk about insulinoma that they have had removed or in the process of trying to locate. Hope this helps !


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