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Thread: Update from my rheumy visit yesterday.

  1. #11
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    I have received the bloodtest results.

    ALKALINE PHOSPHATASE = 131 normal 42-98, it means damage to liver and/or bones.

    ANTI- MITOCHONDRIAL AB = >=1:320 normal < 1:20 , it means liver damage

    SS-A/RO ANTIBODIES = 551 normal 0-100 I don't know what that means

    NEUTROPHILIS = 73.8 normal 40.0-70.0 I don't know what that means

    VITAMIN D = 10 normal 30-100


    [Overall suggestive of liver disease, suggestive of chronic active hepatitis= autoimmune hepatitis.]

    Even though my doctor has told me all this, it is really hard to read, because liver disease is nothing to mess with.
    I am scared to find out, how much liver damage there is.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

  2. #12
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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Ok Debbie , when is the. Biopsy scheduled? Once they do that they can see exactly which way to treat this. I know this is a scary time. It don't forget that we are all here for you and that this can be controlled! Love ya and keep us posted
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    debbie,
    when i was first diagnosed,
    i had 4 major organs involved.
    my liver results were not as bad as yours.....
    but still above normal.

    they came back with steroids.
    please do not worry tooooooooooooooo much yet.
    wait for the liver biopsy.

    if i remember correctly.....
    you were flaring before the test.
    this will elevate some results.

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    Quote Originally Posted by tgal View Post
    Ok Debbie , when is the. Biopsy scheduled? Once they do that they can see exactly which way to treat this. I know this is a scary time. It don't forget that we are all here for you and that this can be controlled! Love ya and keep us posted
    My appointment with the gastro doctor is on April 19, on that day he is supposed to give me the date for the biopsy.
    I am so glad, that I have you guys.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Debbie,
    I'm familiar with the SSA/Ro antibodies. That means that you definitely have Sjogren's. The low vitamin D is something that we've discussed here a lot and I've seen it discussed on the Sjogren's support site. Usually, our docs put us on a really high dose of D for a while (50,000 IU once a week), and then have us to keep taking 1000 IU or 2000 IU per day. Talk to your rheumy about this.
    I'll be anxious to see what the gastro doc tells you.
    Hugs,
    Marla

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    Thanks Marla,

    It seems like my rheumy is on top of things, I am taking 50000 IU right now. I had a very low vitamin D level before, it was at 6, but after it got back to normal, I slacked off and didnt' take the 2000 a day.
    Well now I know, what the SSA/Ro antibodies mean. All the rheumy said, when he looked at the bloodtest results was, " you def have sjogrens, we don't need a lip biopsy or a schirmer test."
    I am very anxious, when he tells me the date of the liver biopsy.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

  10. #17
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    So, I just got back from the gastro/ liver doctor. The date for the liver biopsy is 5/29 at 8.30am.
    He said a biopsy is the only way, to find out how much damage the liver has suffered.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    good to see it is not a long wait.
    hope all goes well for you.

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    Quote Originally Posted by steve.b View Post
    good to see it is not a long wait.
    hope all goes well for you.
    Thank you Steve. It is a little nerv wrecking, my husband is very worried. But like you said, at least it is not a long wait, until the biopsy.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Debbie,
    I hope that it shows that everything is ok and you can stop being so stressed.
    Keep us informed.
    Hugs,
    Marla

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