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Gilberts Sydrome and increased bilirubin. Do you have it?

Countrygirl

Senior Member
Messages
5,427
Location
UK
Gilbert's syndrome is, according to Dr Charles Shepherd, associated with ME. Some years ago, he wrote that 16% of people with ME have Gilbert's................I have been diagnosed with it. It is usually considered to be benign, but can cause chronic fatigue, chronic low grade jaundice and an impaired immune response. Someone with Gilbert's takes longer than normal to recover from infections.

C.G.
 

rwac

Senior Member
Messages
172
Yeah, I have the genetic markers for it. The thing about Gilbert's is that it's a problem with the detox pathway.
I wonder if other symptoms can show up without increased bilirubin. I have a old test with normal bilirubin but it was from before I was ill.
 

SaveMe

Senior Member
Messages
421
Location
the city
So whenever they run a liver panel on you, those bilirubin markers come back elevated? How long have you noticed this?

My doctor knew this after taking more than one blood test.
 

faith.hope.love

Senior Member
Messages
118
Yes, they're always high. My doctor first mentioned Gilbert's in 2004. It's never been an issue since it's a benign condition. It definitely has not caused an impaired immune response in me. My immune system is very overactive, it's TOO strong. Sometimes I have to take steroids to suppress it. I can't remember the last time I had a cold or flu, and I work as an RN with sick people coughing in my face nearly every day. :)
 

Patrick*

Formerly PWCalvin
Messages
245
Location
California
Me too. I've always had Gilbert's Syndrome. My bilirubin levels are typically at about 1.8mg/dL, whereas the normal range is 0.2-1.2. But my doctors always told me this was an insignificant finding, and that Gilbert's Syndrome doesn't cause any problems. Really? I thought, "then why is there a "normal" range for bilirubin, and why are people who exceed that range deemed to have a Syndrome?"
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Me too. I've always had Gilbert's Syndrome. My bilirubin levels are typically at about 1.8mg/dL, whereas the normal range is 0.2-1.2. But my doctors always told me this was an insignificant finding, and that Gilbert's Syndrome doesn't cause any problems. Really? I thought, "then why is there a "normal" range for biliruben, and why are people who exceed that range deemed to have a Syndrome?"

I personally think that many so called "insignificant findings" may be quite significant for us. I myself have a abnormality which is normally a insignificant one (hyperinsulinemia), but for me its quite a major thing as in my case it does cause me symptoms, sometimes quite severe ones.

I suggest everyone who finds something abnormal in their test results to research it, to MAKE SURE it isnt giving you any symptoms or making the ones you have worst. Experiement with correcting any abnormalities you have if possible, to see if that improves things at all. There is much the medical profession in general doesnt know.
 

richvank

Senior Member
Messages
2,732
Hi, all.

I have a mild case of Gilbert's syndrome, too. There are quite a few variants that are not very serious, but some homozygous mutations in the enzyme UGT1A1 can produce jaundice, as well as sensitivity to certain drugs, which are also normally detoxed by the glucuronidation pathway. But the cool thing about Gilbert's syndrome is that it has been found to provide protection against coronary artery disease. It is thought that this is due to bilirubin acting as an antioxidant.

Best regards,

Rich
 

rlc

Senior Member
Messages
822
Hi all with elevated bilirubin, doctors tend to get into the habit of telling everyone with elevated bilrubin that they have gilberts syndrome, because it is very common, but it is not always the cause, increased bilirubin is listed as being caused by 221 different illnesses, see http://en.diagnosispro.com/differen...irubin-serum-lab-increased/11957-154-170.html

Of these, 38 of the illnesses that cause increased bilirubin also cause chronic fatigue, see http://en.diagnosispro.com/differen...ased-chronic-fatigue/11957_25271-154_154.html

This list includes a lot of illnesses that are frequently misdiagnosed as CFS such as Hemochromatosis, hep C, Hypothyroidism, Shistosomiasis (Tropical disease that causes similar symptoms to ME) Pernicious anaemia (B12 Deficiency)

So its important to make sure that your doctor has ruled out all the other conditions and isnt just handing out an easy diagnosis, for some people the increased bilirubin may turn out to be the clue that is needed to find the missed diagnosis.

All the best
 

rlc

Senior Member
Messages
822
Hi Snow leopard, yeah its very disappointing when high bilirubin is known to be caused by so many illnesses, some of them potentially fatal, it just seems to be the way of the world at the moment, GPs seem to be only interested in rushing all their patients through really quickly and giving them any diagnosis that seems remotely plausible, and saving money by not testing people.

Its not just happening to ME patients, I know of so many people who have had the correct diagnosis missed due to this kind of sloppy doctoring, it really is very scary!!!

All the best
 
Messages
31
Location
Padova, Italy
Hello to everybody from Italy. Just to know if anyone of you have high bilirubin (both direct and indirect, while the Gilbert only should have a slight indirect increase) with all enzymes (as ALT, GGT, etc.) within normal range.
I suffer from chronic fatigue (after a strong mononucleosis in 1998) and need for a restorative nap at midday (but cannot do that due to work time) and the only values out of range are bilirubin and CD4, CD8, CD19 ... CD4/CD8 ratio is 1 , while it should be in the range 1.5-2.5 . Any idea ?
All the best.

Fabio
 
Messages
15,786
I suffer from chronic fatigue (after a strong mononucleosis in 1998) and need for a restorative nap at midday (but cannot do that due to work time) and the only values out of range are bilirubin and CD4, CD8, CD19 ... CD4/CD8 ratio is 1 , while it should be in the range 1.5-2.5 . Any idea ?
Needing to lie down in the middle of the day might indicate that you have orthostatic intolerance. It usually involves blood pressure and/or pulse pressure getting low, which can be checked with a blood pressure monitor. If that is the problem, then sitting with your feet up all day can help, or other techniques and medications. Doctors can diagnose and treat it.
 
Messages
31
Location
Padova, Italy
Usually my pulse pressure is OK, when checked it was in the medium of the range. Do you mean i should do a all-day pressure measurement ? Thank you for your suggestion, i'll talk with the doctor about it. The fact is that i need to sleep, even if for less than an hour, not only to lie down....