Tuesday, August 5, 2008

Gilbert's syndrome

A huge weight has been lifted off my shoulders! I finally found out what all these blood tests I've had done mean.

I had a Doctor's appointment yesterday and they told me I have
Gilbert's syndrome. Gilbert's syndrome is an inherited disorder of the liver that results in an overabundance of a substance known as bilirubin. Bilirubin is normally present in the blood in small amounts. It is usually converted by the liver.

People with Gilbert's syndrome have an inherited abnormality that causes reduced production of an enzyme involved in processing bilirubin. As a result, a form of bilirubin (known as unconjugated bilirubin) accumulates in the blood, sometimes causing yellowing of the skin or eyes. (Source: info. pamphlet Dr. gave me printed from www.uptodate.com )

Most patients with Gilbert's syndrome have no symptoms, usually it is only diagnosed during a routine blood test. Basically my blood tests showed I had a high level of bilirubin in my blood and after they did all these tests, Gilbert's syndrome is the only thing that they can see that would cause this.

There is no treatment for it and people with it will live a normal healthy life. The only noticeable thing might be yellowing of the skin or yellowing of the whites of the eyes (which I don't have.)

So this is
Great News! Because this has been going on for over 2 months! It has been two months of worry. Maybe it was me overreacting, although no one in my family thinks so(they were all worried too). This Doctor's office really gave me the run around for 2 months! Was it necessary to take that long for this diagnosis? Making me wait and worry all this time? Couldn't they have figured this out sooner?

If you've read any of my other related posts (see below) on this you'll know what this Dr. put me through! And it accumulated even more this past Thursday (which I haven't mentioned until now,) but Thursday I went for my latest blood test. And when I got there the first thing this
girl that was giving me the blood test says to me (after I handed her the papers the Dr. gave me) was, "So when is your operation?" I was like huh? I'm not getting an operation. Or at least not that I know of. I told her I haven't even seen my Dr. yet, I'm going Monday. This girl then put a hospital band on me and told me to keep it on until I have my operation!

Then she took my blood. I said I don't even know what it's about yet do you have any indication from these blood tests, she told me it looks like you either need an
operation or a blood transfusion! When I got home I called my Dr's office and talked to the nurse. I explained what happened. She had no clue why they would tell me that. She called over to the hospital and then called me back. She said it was "protocol" for this particular blood test that it usually indicates in-patient treatment or something. It was basically a miscommunication and the girl tried to explain that to me! Which is total BS! This girl said nothing of the sort.

I tried to hint around to the nurse that I had no idea what this was about. She was like the Dr. will go over it all with you on Monday.

So anyway, I basically sat around this past weekend thinking I'm:

A. Getting an operation
B. Getting a Blood Transfusion
C. Dying of cancer
D. Need a liver transplant
E. Any other deadly disease you can think of

In the meantime it was Gilbert's syndrome! Why couldn't they just tell me this over the phone if not 2 months ago at least last Thursday!!!!!

Related posts: Why I'm Going to Try The South Beach Diet
More Medical News
Abnormal Bile Pigment


  1. I'm glad that you finally got an answer! I'm going to the doctor today to see if we can find a source for an intensely itchy rash I've had for weeks! Don't you hate when you get the runaround??

  2. Well, thankfully you have an answer, I hate going through the doctor mill....took me 4.5 years for answers this last time.
    Hope you get more information and just remember, big hugs.

  3. Glad all is well. So sorry that this girl scared you. Someone should probably advise her not to talk shop with the patients as not to confuse or scare them!

  4. I am so glad that you have your answer and can now stop worrying. That alone was probably enough to make you sick. Glad it turned out to not be anything major.

    BTW, I've tagged you. :-D


  5. Glad it's something much less severe than needing a surgery! I hate it when people who are not my doctor try to tell me the wrong info...

    It's too bad you can't just go lay out under a heat lamp like a newborn for that. :)

  6. Firstly, a virtual {{{{hug}}}} from a virtual stranger!

    Secondly, that girl should be written up. That sort of discussion should not come from a lab tech.

    Finally, could it be that Gilbert's Syndrome is diagnosed only after other things are ruled out? That is probably why it has taken so long.

  7. Hi Sue,
    I am sorry you had the run around. But, happy to know that you are going to be alright. That is excellent news and thanks for letting us all know. Take care and be happy! :-)

  8. Thanks everyone for your kind comments! It was enough to make me sick! I was sick with worry for 2 months & especially this past weekend I was sick to my stomach the whole time.

    And yes, I guess they had to rule out everything else first. I thought it was going to be my gallbladder all along. But the Dr. said Monday that that would show up as something else, so it's not that. I guess this "Gilbert's syndrome" is something that diagnose after they have ruled out everything else. When you have a high level of bilirubin that can't be explained any other way, you have "Gilbert's syndrome." I just hope it's right (I guess it is.)

  9. Hey, wanted to let you know that I added your button to my site!

  10. Yikes, that "girl" needs a good "talking to!" Any chance of changing doctors? Glad it was not something more serious.

  11. Yes, exactly Beth, I hope that "girl" got in trouble! As for changing Doctors, I don't have to go until next years check up so I'm seriously considering changing Doctors! Even though from what everyone says there all the same. But I really don't like how they treated me there. Is there any good Doctors out there?????

  12. Hi - Just came across your post.

    Sorry to hear what you've been through.

    I received a letter from the doctors the other day inviting me to a flu jab appt. I phoned to query as i didn't qualify according to the letter - e'g over 65 - no, liver or heart problems - eh no, or so i thought.

    So the receptionist says "Oh its because you have Gilbert's Syndrome". My god - was i about to fall down dead? So rather shakily i asked "since when?" "Oh it was diagnosed in 1997" "I don't remember that - is the loss of memory a symptom?"

    So getting off the phone feeling ever so slightly foolish, I looked it up.

    Explains a lot of what i've been going through - the tiredness and nausea or is it just a convenient coincidence? I can't decide but there must be something in it?

    So I'm off to blog some more and seek more answers.