High Bilirubin, Not Gilbert's

[BrownTapir]

Hello,

I was hoping for any advice on this situation - please be brutal if you think I've lost perspective.

I'm 38m & used to drink stupid amounts (like a bottle of wine/night). In August 2021, aged 36, I started panicking about this and went through a series of LFTs and CBCs, all of which showed everything fine (apart from occasional, mild anaemia) and high bilirubin. The bilirubin level has wobbled between 17-47 umol/L (I think that's 0.99-2.75mg/dL on the US scale). The most recent test shows it sitting at 24 umol/L (~1.4mg/dL).

Since more-or-less the start, GPs were telling me that I probably just had Gilbert's Syndrome, but at some point a genetic test was carried out which came back negative. At the time, this was marked as "no action required", but when I chased it up I had a very confusing phonecall with the GP, in which I think he tried to suggest that even though I didn't have the gene, I probably did have GS, just via some other genetic mechanism. Stupidly, I accepted this, and even returned to drinking in moderation, having been abstinent for several months.

Fast forward to late last year & I was denied life insurance on the basis of my bilirubin levels & drinking history & the lack of explanation. I chased this up with a GP, who did a haemotology referral which doesn't seem to have found anything (some spherocytes apparently, but not in the conditions that would suggest any of the haemolytic anaemias).

I moved and changed GPs recently, and tried to chase this up with the new GP, who doesn't seem particularly worried, provided I don't drink. When I try to pursue it she tends to suggest treatment for health anxiety.

On one level, I can't contradict that (it's to do with my health, and I'm anxious about it). She might genuinely be right - maybe I have lost perspective & should leave her (and the NHS) alone. With that said, there are still out-of-range results that we can't explain. I guess if I have cirrhosis, I'm currently compensated & can be trying to live my life as healthily as possible & don't need further intervention for that. What worries me though is the thought of missing out on occasional scans for varices or HCC if it is cirrhosis.

We've never done any imaging/scans, or a fractionated bilirubin test. I bought some dipsticks and noticed that my urine is sometimes positive for bilirubin, which I think is suggestive of cirrhosis/gallstones. My current thinking is that I'll ask for an ultrasound referral and agree to pursue whatever health anxiety treatment might be suggested if I can get one. Any other thoughts/perspectives welcome though.

Thanks very much for reading,

BrownTapir

[KillerT]

I would request a Fibroscan and a new set of blood tests done. As for mild anaemia, what's the range of your haemoglobin? I would also suggest that you reduce your alcohol intake or stop if possible?

[BrownTapir in reply to KillerT]

Thanks, I'll ask about that. It turns out my work has some private insurance, so have set up an appointment via that to try to organise some scans. It's a month away, but I guess things aren't likely to change much in the meantime.

Haemoglobin actually looks to have been in range (132-149, for range 130-180), I think it's RBC count that has been low (4.39, 4.14, 4.51, 4.31, for range 4.5-6). I have stopped drinking & am trying to be a bit healthier in the meantime. Thanks very much for the reply.

[Oldbits]

Hi, my hubbie had bilirubin level 173 U/L In 2021 and is now heading to 40 levels and now feeling great. He also had health anxiety and drank along with other problems. But a healthy diet and quitting the drink has made a huge improvement aswell as help with the anxiety with medication and councelling (the councelling we paid for) I dont know about Gilbert's but dont leave the gp or the nhs, they can keep an eye on your levels with 6 monthly blood tests and scans if they feel you need them after blood test results. As you say maybe an ultrasound will help. BILIRUBIN 0 - 20 U/L or 0.174 to 1.04 mg/dL is the acceptable range. This will fluctuate with alcohol and bad diet. If you can cut out the alcohol (not easy I know, but you can turn things about and being so young you have a lot to live for) take it as a warning and grab the chance.

[BrownTapir in reply to Oldbits]

Thanks, kind of you to reply & you're completely right, of course.

[Ubwa]

High bilirubin in and of itself does not mean you have cirrhosis, so I would stop going straight to the deep end. Mines currently 600 and I don't (yet) have cirrhosis (long story).

It can show your liver is struggling if the Gilbert's test was negative. Do the rises correspond to periods of high drinking activity?

At any rate, if it worries you, simply stop drinking (easier said than done, I know)

[BrownTapir in reply to Ubwa]

Sorry to hear you're dealing with such a high level, and thanks very much for replying, that makes me feel a bit better about it.

I should have said: I have stopped drinking since starting to worry about this stuff again & have generally been trying to lose weight & get a bit healthier.

TBH I kind of think the rises correspond to periods of health anxiety when I tend to be exercising lots and not eating much in an effort to lose weight. I know that can cause rises in people with GS, but I guess that doesn't include me.

[MINTVCX]

" At the time, this was marked as "no action required", but when I chased it up I had a very confusing phonecall with the GP, in which I think he tried to suggest that even though I didn't have the gene, I probably did have GS, just via some other genetic mechanism"

It is possible however not sure what is the probability of this. In fact some rare genetic variant can be the cause.

Chat GPT:

"However, not all cases of Gilbert's syndrome are caused by this specific genetic variation. Other genetic or environmental factors may also play a role in the development of the condition. Additionally, genetic testing is not always 100% accurate and may not detect all variations in the UGT1A1 gene that are associated with Gilbert's syndrome.

Therefore, a negative genetic test for Gilbert's syndrome does not definitively rule out the possibility of having the condition. Clinical diagnosis of Gilbert's syndrome is usually based on a combination of symptoms, physical examination, and laboratory tests showing elevated levels of unconjugated bilirubin in the blood. If you are experiencing symptoms of Gilbert's syndrome, it is important to speak with your healthcare provider for a proper evaluation and diagnosis."