Talk:Gilbert's syndrome

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Contents 1 Disagreement with picture of Bilirubin molecule 2 Previously 3 Improvements to Coping Strategies 4 Revert to 27 Jan 5 discovery age 6 citation needed/found 7 Acetaminophen Metabolism 8 regarding symptoms 9 Vaccination recommendation 10 Highest bilirubin

[edit] Disagreement with picture of Bilirubin molecule

Bold text GS interferes with more than just the conjugation of Bilirubin. For example, UGT1A1 also degrades C18 steroids. So why not picture one of them instead of the most visibly affected compound?

I think it would make much more sense to picture either UGT1A1 in the infobox, or have an infobox about a disease, or have an infobox about the TA₇ mutation. But bilirubin is kind of on-topic but not as relevant as the infobox display would imply. Heathhunnicutt 19:18, 13 June 2006 (UTC)

I was the person who added the bilirubin image earlier today, and I removed it per this objection. I have no objection to Heathhunnicutt's proposal. --Arcadian 03:19, 14 June 2006 (UTC)

Thanks, Arcadian. I was thinking, how cool would it be if we had a photo of Bilirubin before and after, with the UGT1A1 enzyme shown as the intermediary. How does art get done for the Wikipedia? Do I just advertise for an artist on craigslist, or what? Heathhunnicutt 16:59, 14 June 2006 (UTC)

[edit] Previously

It would be good to add information regarding what causes high bilirubin episodes. Also, there is another similar deficiency, which can lead to death: the G6PD deficiency. Elp_gr

In what sense do you consider G6PD and Gilbert's similar? JFW | T@lk 10:11, 18 August 2005 (UTC)

In that they both cause haemolysis - triggered by different causes, of course, but you still get it. I happen to have both Gilbert's and G6PD deficiency. Elp gr 15:59, 18 August 2005 (UTC)

Gilbert's does not cause haemolysis. It is a disorder of glucuronidation. JFW | T@lk 02:20, 19 August 2005 (UTC)

This whole thing puzzles me. Elp gr 15:26, 19 August 2005 (UTC)

[edit] Improvements to Coping Strategies

I guess it is clear that a better and more thorough synopsis of the research in this area is needed as outlined below: --Ben Houston 16:26, 25 September 2005 (UTC)

I've added a section on problematic foods and drugs/substances as well as on recommended foods. Right now it is in a list format but I don't find it to be as concise as it should be. Many of the foods are listed for different reasons and the current format doesn't allow easy denotation of that. I am thinking that maybe a few table based format would work with columns that give reasons for each food would work better.

A column in the table could also point to the references (in numeric citation form or something similarly compact) that support the classification of the food. Currently, I have combined a couple of web pages together to make the list and thus it is not fully sourced on any one page. In all honesty, I feel that the list is fairly decent, and provides people with something to go on but I do not think it is 100% accurate. Personally, I need to learn more about the various liver pathways and then reference specifically that each food or substance taxes the relevant pathways. Also the good foods may not be specifically good for Gilbert's syndrome but rather just good for those with decreased liver function.

[edit] Revert to 27 Jan

The (conventional) clinical definition is of mild elevation in bilirubin, with only symptom being of occassional mild jaundice. Leaving aside more severe disorders of bilirubin metabolism, most people with GS do not report symptoms, indeed most cases are found by chance on routine blood tests. To use the term 'many' to describe those who report symptoms is POV, as it is only a minority who so report. 'Some' is therefore NPOV (my own preference of 'rarely' I suspect might be seen by others as POV in the other direction).

Many doctors prefer the term Gilbert's condition as syndrome suggests a collection of disease symptoms, where as this 'thing' is present in upto 10% of the normal population and most doctors would therefore view it almost as a normal varient. The 'risk' is that unrecognised, it might be wrongly inferred that a patient is developing a liver disorder such as acute viral hepatitis, whereas in reality the patient is well and will remain so; the patient is therefore at risk from their doctors of undergoing lengthly series of further blood tests & investigations for what will turn out to be a benign, non-infectious condition. The true cause of a patient's new onset of illness therefore may go unrecognised whilst GS is identified.

The dietary changes suggested are not accepted by conventional medicine, and are therefore 'alternative' in nature. Given that conventional medicine therefore disputes these suggestions, they are de facto 'controversial' (again I would suggest this is a NPOV term, whereas my own thoughts might be of 'alternative', 'pseudoscience', etc etc).

There were some useful additions to the list of claimed symptoms that I have left in (to claim something is NPOV) and I agree better to describe "people with GS" rather than "GS sufferers".

If people dispute my revisions and wish to edit, please can you ensure WP:Verify and WP:Cite to help in any further discussions. David Ruben ^Talk 04:41, 15 February 2006 (UTC)

Support the revert. The pathophysiology is well understood. At the levels of bilirubin normally experienced in GS, no symptoms apart from mild itch are usually present. JFW | T@lk 00:31, 16 February 2006 (UTC)

It's hardly a normal variant, as several enzymes necessary for glucuronidation, one of the body's main detoxification systems, are reduced to a small fraction of their normal levels. Shambala 22:53, 27 July 2006 (UTC)

[edit] discovery age

I once heard that it is usually discovered in puberty and that girls hence usually show symptoms sooner than boys. Is that correct and should it be included?

If it is of any relevance, I know someone with this syndrome personally.

NO - it normally is not identified at all - most people with the condition are without any symptoms. Its commonest identification is as part of normal liver fuction blood tests undertaken for other medical reasons. At 5% of the western-world population, many doctors prefer to call this 'Gibert's condition' (rather than something that suggests a disease) and view it as a normal varient. There are of course other more severe disruptions to metabolism of bilirubin than Gilbert's and there shoud be relevant articles about these conditions. David Ruben ^Talk 03:05, 25 February 2006 (UTC)

[[Image:''''''':Actually, GS can be extremely disruptive. There are many symptoms commonly reported by those with GS, including myself. I've taken down a list of the symptoms listed by 286 people on the main bulletin board for GS, and they are all remarkably similar. Not only this, but there have been studies showing that there are a wide range of effects caused by GS - gastroparesis, immune suppression, swollen liver, essential tremor, increased likelihood of chronic fatigue syndrome and schizophrenia, and more. My site GilbertsSyndrome.com has links to these studies. Shambala 22:42, 13 July 2006''''''']]

So some fraction of people with GS have symptoms, and the rest are forced along with the ride? I have GS also, and I have no symptoms at all. I found out about it during a routine blood test, and they were all "OMG, the Bilirubin level is way too high, this isn't good." After a number of tests from a liver specialist, he concluded that it must be GS, as there were no further indicators. I hardly bother mentioning it to doctors anymore, because I've never even had mild jaundice from GS. It really didn't come up until I was speaking with my gynecologist regarding hormones, and we ran a liver panel, and I was astute enough to tell him that I had Gilbert's Syndrome, so fortunately, when the tests came back, and I had some 4.9 mg/dl, the doctor didn't freak out. I agree that I have a fairly low level of Billirubin from what is typical for most people with GS, but I still have elevated Billirubin levels, and I still have GS, and I've never had any symptoms. If you run a site about GS, then you're going to get people who have symptomatic GS, and not asymptomatic GC (Gilbert's Condition), because the people with GC just don't care, because it doesn't affect their life. --Puellanivis 21:42, 2 October 2006 (UTC)

Pellanaivis -- I see from your user page that you are a biological man who is undergoing transgendering via hormone therapy involving estrogen. I see from your above comments that you have GS. Are you aware that GS also slows the metabolism of estrogen and other C18 steroids? How has this impacted your transgendering plan, from start to finish? Heathhunnicutt 00:27, 23 October 2006 (UTC)

I'm putting the response to this in my talk page, as I feel it likely has a greater relevance there than in this article. As a short answer, I was unaware of this, and I appreciate the feedback. --Puellanivis 18:41, 23 October 2006 (UTC)

I discovered my GS by accident, during a check-up at the doctors. I have read the symptoms, and I found that I don't remember getting any of them. So, what Puellanivis says is good. Hmm...After re-reading my comment, I have discovered there is no point in saying this. Hooray! YazzaMatazza 10:37, 17 March 2007 (UTC)

[edit] citation needed/found

Frome this artile

"More controversially, some patients report experiencing unpleasant physical symptoms during episodes of high bilirubin levels. These may include persistent or meal-related fatigue, dizziness, tremors, nausea, abdominal pain, and "brain fog", with or without jaundice[citation needed]. There is some evidence that Gilbert's syndrome also reduces the liver's ability to detoxify certain chemicals; it may be wise to avoid drugs that tax liver function, such as paracetamol."

Is Action on Gilbert's Syndrome a decent source. if it is it mentons this on What is Gilbert's Syndrome?. Is it a source or is it some randome person on the web. I had a tough time a few years ago when all of thoes side effects listed hapened to me and i had alot of Blood test to find out what wrong. Afterwords i found the sight but my parece told me the sight wasn't true. (please not Testimonials are by nature misleading becoe they represent a disproporinate amout of people so don't take what i said as a testimonial. I have sevral rare explanation for my condition, each being rare enoguh not really qualifying as any explanation)--E-Bod 23:26, 26 March 2006 (UTC)

Sorry the quote is breaking the page--E-Bod 23:26, 26 March 2006 (UTC)

Another metnion of just "Symptoms of this defect in liver detoxification are anorexia (loss of appetite), malaise (weakness), fatigue, a chronically elevated serum bilirubin level and a slight yellowing of the white of the eye in the absence of hepatitis." and this page is already citted in the artile. actually same as Action on Gilbert's Syndrome is already under links it could be copied to refrences. If the sorce is reputable.--E-Bod 23:35, 26 March 2006 (UTC)

Is the sorce Reputabe? (sorry if i'm having a conversation with myslef)--E-Bod 23:35, 26 March 2006 (UTC)

[edit] Acetaminophen Metabolism

The information on acetaminophen (Tylenol) has gone back and forth a bit, but it's settled on an answer. Here's what happened:

There was an original study that showed that people with GS had 31% slower processing of acetaminophen, so it was thought to be processed by UGT1A1, the enzyme deficient in GS. The advice given was for people with GS to avoid acetaminophen. Later experiments showed that acetaminophen was actually processed by UGT1A7, and so acetaminophin was given the green light for people with GS. Later still, it was shown that most people with the UGT1A1 mutation also had an even worse mutation in UGT1A7. This explained the results of both the previous studies, and justified the results of the original experiment - that people with GS should avoid acetaminophen (Tylenol).

I've updated the article with references to each of these three studies. Shambala 12:34, 16 July 2006 (UTC)

[edit] regarding symptoms

I apologize if my posts/edits are inexpert. I've been reading Wikipedia a long time and have just started editing. I take issue with the "More controversially" part, as I have been diagnosed with Gilbert's Syndrome and have had these symptoms for a long time. From every source I have found on the web from those who actually have it, I have seen these symptoms described. How is it that doctors can invalidate this widespread report of similar symptoms? In truth, there hasnt been many studies on Gilbert's Syndrome, and lack of knowledge is no reason to invalidate the reported symptoms of a population. Shambala 02:58, 23 April 2006 (UTC)

• The web, I'm afraid is not generally a good primary source for establishing accepted/consensus medical opinion on specific diseases. Published peer-reviewed research and subsequent peer-reviewed journals' scientific debate are not reviewed, but rather often one website replicates information found on other sites. The information may or may not be correct, but the number of sites stating an idea is poorly correlated to veracity of checking from primary sources. As an example, the London Lock Hospital is often mistaken for the Albert Dock Seamen's Hospital, the first being world's first venereal disease hospital, the other would become the first tropical disease centre - look here for how same phrasing wrongly duplicated in multiple sites on performing Google "Dock Hospital" - page 2 onwards).
• That aside, Gilbert's is medically considered a benign asymptomatic/usually non-apparent condition (i.e. only occasionally causing symptom of mild jaundice, but being more issue of a laboratory result's significance being wrongly pursued for a possible active hepatitis). So if there are chronic symptoms arising from this condition, then that is controversial in as much as it is in conflict with the current definition of the condition. Is the medical formal description of the condition wrong ? It is possible, there certainly seems to be a lack of evidence to either support or refute the claim. However a possibility, until there is evidence, remains a conjecture and in the absence of citable primary evidence would fail under WP:NOR criteria for inclusion in wikipedia.
• One person's symptoms can not of course infer much, and may be due to some other unrecognised condition. Might not such a collection of people with GS be suffering from one of a number of similar poorly-recognised conditions, e.g. mild lactose intolerance or a mild variety of chronic fatigue syndrome (I’m not saying they are, but one could speculate) ?
• The presence of the websites with claims of more than one patient may of course suggest a real link to GS. Care naturally has to be taken, one could find thousands of people with GS who have heart disease, but as 1 in 3 of the general population die from heart disease anyway, this is not of any special significance. However, if studies were ever to show rates of heart disease in GS being different from that of the general population, then the effect would be proven.
• So, collective claims of illness as a consequence of GS needs to be supported by epidemiological evidence - have such studies been performed ? If so, then they need to be cited and the symptoms linked to GS would not be "controversial" (depending upon the findings of such studies we would then no doubt be discussing terms such as "sometimes", "rarely", "occasionally", "typically", "often") David Ruben ^Talk 04:36, 23 April 2006 (UTC)

[edit] Vaccination recommendation

I'm not familiar with a specific recommendation targeted at patients with Gilbert's syndrome for hep A and hep B vaccinations. Anyone else out there more knowledgeable about this? Andrew73 11:42, 26 May 2006 (UTC)

I've never heard of this. In fact, I know of a few people with GS (including myself) whose symptoms became permanently worse shortly after hepatitis vaccinations. I've commented this out as it could be dangerous, and I see no reason why it would be helpful. Shambala 22:36, 13 July 2006 (UTC)

I have GS, and I have received exactly this recommendation from my GP. I got the vaccination series and experienced no GS symptoms. I have experienced terrible GS symptoms in the past, for example when I had mononucleosis and became very jaundiced for many weeks. The Hep B vaccine is a protein, not even a killed virus. All it will do is generate an immune response, and nothing it does will be liver-specific.

On the other hand, a Hep B infection will be very, very, bad for someone with GS. This was my GP's advice, and I followed it. That makes my statement not citable, but WP:OR. However, I think you are very wrong.

For those of you physicians who doubt that GS patients notice GS, please stop doubting. I went to physicians many, many times and asked them why I was so ill. I would be tired, nearly exhausted, and become somewhat jaundiced. I came to believe that my mononucleosis infection might actually have been chronic hepatitis or something. I would go to doctors with slight jaundice, a headache, exhaustion, and a cold. They made marks in my chart about how they knew I had GS but was a bit of a hypochondriac and should not be told.

Finally, I gained access to a detailed liver panel test taken from my own blood. My ratio of unconjugated:conjugated bilirubin was 5-times higher than expected! So I went to a new GP with my 'proof' and he finally was the doctor who told me that I have GS. Now, I'm completely not worried about it.

Whether people should or should not get the hepatitis vaccination to go with GS is not something I am an expert on. I can definitely say that I got it and suffered no GS-related symptoms. However, since GS-related disorders are a spectrum, it is possible that some who have been diagnosed with "GS" actually have a more severe disorder of bilirubin conjugation. Perhaps the vaccination could harm such people, but I can't imagine how. Namaste, Heathhunnicutt 22:40, 14 July 2006 (UTC)

Caveat: I already had Hep A antibodies, so there was no need for me to get the Hep A vaccine. The Hep A vaccine is "attenuated" by passage through cell types that aren't its normal habitat. Perhaps vaccination with attenuated Hep A virus really could cause symptoms in a GS patient. It is hard for me to see how such symptoms could be permanent, though. I really can't see how it is in any way possible that Hep B would cause a problem, and I would be sort of surprised if Hep A did, even though the Hep A vaccines are live virus. Heathhunnicutt 23:03, 14 July 2006 (UTC)

For myself, the vaccination was one of several events during the onset of my symptoms which could have brought them on (the others being severe food poisoning and simply getting older), but I've talked to others who have had symptoms intensify soon after the vaccination. Thinking that hepatitis would be worse for someone with GS seems to make sense, but I havent heard evidence of this. There's also talk that the mercury (previously? still?) used in the vaccinations can cause long-term problems. At any rate, you're right, it's WP:OR. It shouldnt be in the article. And I'm glad you found a doctor who would talk to you about it. Keeping GS secret seems to be a not uncommon practice. Shambala 12:16, 16 July 2006 (UTC)

No, Shambala, I'm right that my experience was WP:OR, but the question of whether that is common practice remains open, and you haven't produced any evidence other than your gut feel. Also, no there is no longer mercury (thimerosal) in very many vaccines, and there is ample evidence that thimerosal was harmless to begin with. (See Talk:MMR_Vaccine). Heathhunnicutt 00:19, 17 July 2006 (UTC)

The burden of proof rests on the one making the claim. Shambala 22:50, 27 July 2006 (UTC)

That is laughable, considering the level of 'proof' you have brought in comparison. Heathhunnicutt 16:03, 29 July 2006 (UTC)

[edit] Highest bilirubin

What is the highest billirubin ever recorded for someone with gilberts, mine has been up to 179 mmol/dl --Dr. B