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!!!!!


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