Sarcoidosis in the Liver

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Hi, I'm hoping somebody can pass on some knowledge about their experience with Sarcoid. My sister is 33, she was diagnosed with sarcoid in the lungs a few years ago and it's spread to other parts in her body. It's spread to her liver, the doctor has said her liver is so big, it's stopping her liver working so the toxins in her body are making her ill. has anybody got any advice on this? Thanks

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  • Posted

    Hi

    I have it in the lungs  all my other organs were tested initially but this is concerning as it seems it can affect them at anytime

    I am awaiting an echocardiogram  to see if my heart is affected 

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  • Posted

    Hi Marie

    Sarcoid usually affects more than one organ. In my case three that I am aware of. 

    Doctors target the lungs as it is the most obvious organ and can lead to major problems. Whilst addressing that problem they seem to be unaware of other organs being effect as they are preoccupied with the lungs or not aware of the aspect that other organs are affected.

    In any case you are usually referred to a lung specialist who of course addresses your lung issues.

    This was true in my case. Many years later I discovered that I also have an enlarged spleen and liver.

    Both of these organs are still functioning to the point that no major action has been required by the medical profession. Although one surgeon wanted to remove my spleen. Subsequence ultrasounds proved that whilst it was enlarged it was not acute. It had been enlarged for some time and was now stable.

    LFT (liver function tests) should identify the operating level of the liver. Subsequence follow up test should allow you to identify if the liver function is stable or not.

    If stable then there should be no need to take an drastic action.

    I am 62 and my liver and spleen (whilst enlarged and some irregularities) are adequate to do the job.

    I beleive follow tests in your sister's case will be most important.

    ​Hope all goes well for your sister

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  • Posted

    Hi

    i have the skin version of sarcoidosis and find it flares up on a regular basis eg.....lumps and bumps on my legs and arms and also dry eyes and bouts of sweats....I take a lot of cours s of steroids for inflamation......immunology appointment in February 15

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