It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Hemochromatosis Message Board

  • All other liver tests normal - but bilirubin is high?! Confused!

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 06-14-2014, 10:02 AM   #31
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,085
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: All other liver tests normal - but bilirubin is high?! Confused!

    Brad, the hallmark finding in hemochromatosis besides high ferritin is a high transferrin saturation level. When your relatives get checked for this, they should have transferrin saturation measured along with the ferritin. Younger people may have high transferrin saturation but normal ferritin, because they haven't built up the iron stores way high yet. There are also DNA markers that can be run on the blood to confirm it when it is hereditary hemochromatosis. Glad you are getting it treated and will probably feel better as well.

     
    Sponsors Lightbulb
       
    Old 06-14-2014, 01:11 PM   #32
    Brad521
    Junior Member
    (male)
     
    Join Date: Apr 2013
    Posts: 36
    Brad521 HB User
    Re: All other liver tests normal - but bilirubin is high?! Confused!

    |I tested high for all markers. The actual DNA test is pending, but doc said it's highly likely based on the testing that I have the disease. I just donated blood - 2 pints - feel worlds better. He says that I should get my iron down to about 25-50, and I should start feeling better.

    I didn't know iron overload made you feel like such crap! I've been going so long wondering why I always feel 'off' or weird, and ignored the consistently high iron!

     
    Old 06-14-2014, 02:40 PM   #33
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,085
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: All other liver tests normal - but bilirubin is high?! Confused!

    Well, at least you know now what it is, how to treat it, and can look forward to good health. In a way, donating blood is a win-win-helping yourself and someone else too. Most disease treatments aren't that easy or nice. If the donation venipuncture hurts too much, you can ask your Dr for a tube of Lidocaine/Prilocaine cream. You put a dab on the vein 1 hr before donating blood, and the stick doesn't hurt as much. It is a Rx cream and just numbs the skin. Must keep it wet so tape or plastic wrap over it does the trick.

     
    Old 06-17-2014, 08:00 AM   #34
    Brad521
    Junior Member
    (male)
     
    Join Date: Apr 2013
    Posts: 36
    Brad521 HB User
    Re: All other liver tests normal - but bilirubin is high?! Confused!

    Thanks for the tips. I'm going in at 3pm today for the donation.

    My internist called - I did have two abnormal results come back. My IgA was apparently quite high, and my vitamin D was low. Creatinine was also -slightly- low however he said given my body type he was not concerned about that.

     
    Old 06-17-2014, 09:02 AM   #35
    quincy
    Senior Veteran
    (female)
     
    Join Date: Apr 2003
    Location: Winnipeg, Canada
    Posts: 5,168
    quincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB User
    Re: All other liver tests normal - but bilirubin is high?! Confused!

    You do have celiac Disease, that could have something to do with high IGa if you're having inflammation in the small intestine. Of course, there are other possibilities such as autoimmune, infection, etc.

    The low vitamin D isn't a surprise...I do hope he put you on at least 5000 IU to start.

    The low creatinine...seems to not be an issue from what I read. Curious what your body type is....

    Hope your blood donation goes smoothly.

    Thanks for the updates. How are you feeling at this point?

    q
    __________________
    It's all a matter of perspective!
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

     
    Old 06-17-2014, 11:06 AM   #36
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,085
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: All other liver tests normal - but bilirubin is high?! Confused!

    I agree the high IGA is most likely from the celiac disease. IGA are immunoglobulins (antibodies) directed at mucus membranes, like those that line the GI tract. Vit D doesn't get absorbed well in celiac disease, so must supplement it to keep it up to normal and monitor it. Please tell us how you feel after donation. Be sure to be well hydrated before and drink lots of fluid afterward to replace the volume you lose.

     
    Old 06-20-2014, 04:20 PM   #37
    Brad521
    Junior Member
    (male)
     
    Join Date: Apr 2013
    Posts: 36
    Brad521 HB User
    Re: All other liver tests normal - but bilirubin is high?! Confused!

    The donation was a positive experience. And I feel absolutely amazing, this was two days ago. All of my symptoms are gone, and my bloodwork is now completely normalized. I cannot believe that having high iron could have such consequences!

     
    Old 06-21-2014, 08:48 PM   #38
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,085
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: All other liver tests normal - but bilirubin is high?! Confused!

    Glad things are looking up and you are feeling better. Now all it takes is figuring out maintenance frequency for donations to keep your ferritins down to around 50-100. You are on the mend and apt to feel much better.

     
    Old 06-25-2014, 10:58 AM   #39
    pbt140
    Senior Member
    (male)
     
    Join Date: Jan 2012
    Location: Alabama
    Posts: 133
    pbt140 HB Userpbt140 HB Userpbt140 HB Userpbt140 HB User
    Re: All other liver tests normal - but bilirubin is high?! Confused!

    Brad sorry I'm late to this topic but I have had high bilirubin for many years. In fact, it has been as high as triple the normal amount and at the beginning my doctors were not sure why I had not experienced yellow eyes are skin.
    Get blood work twice a year and is always at least double the norm. My liver checks out fine so they say I have Gilbert's.
    They say I could have some blockage in bile ducts but with no pain or obvious problematic symptoms, surgery is not an option. I live with it and never really know anything about it until I get my bi-yearly blood work.
    Glad things worked out for you.

    Last edited by pbt140; 06-25-2014 at 10:59 AM.

     
    Old 06-25-2014, 08:03 PM   #40
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,085
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: All other liver tests normal - but bilirubin is high?! Confused!

    Brad, you are one of the success stories here on the boards, and it is so nice to see that people are actually getting diagnosed, helped, and coming out healthier as a result! Identifying the hemochromatosis will save your life, your health, and let you live a longer, better life. Best to you, and all those who continue to struggle to identify what is wrong and fix it/treat it.l

     
    Old 07-12-2014, 05:24 PM   #41
    Brad521
    Junior Member
    (male)
     
    Join Date: Apr 2013
    Posts: 36
    Brad521 HB User
    Re: All other liver tests normal - but bilirubin is high?! Confused!

    Thank you! It's a serious shame that ferritin/transferrin is not regularly checked! You need to request it, and honestly so many people need to get that checked out STAT! If I ever have kids, I am getting them tested immediately. My uncle and my dad's cousin both have hemochromatosis, and it put a beating on them until about their 50s until they got it check. Gave my uncle liver inflammation.

     
    Closed Thread




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 12:14 AM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!