High bilirubin levels

[Boonsy641]

Ime a 54 year old male. Went to a&e with pain in side and was given full blood count. Told that all normal except bilirubin levels. Which were high. She referred me back to GP. Just waiting for LFT results but I am going anxiety stir crazy with panic over this having read what high bilirubin levels mean on the internet. I am now convinced my liver function tests will be abnormal and I am on a downward slope toward liver failure. Can’t tell you how anxious I am it has affected my whole life.. can anyone please offer me some wise words.. and if it is cirrhosis what and how can I live with that. I make the point that other than a pain in the side I have no symptoms (jaundice etc). I do have a kidney issue hence the possibility of the pain but not sure. Thanks Ben

[Hidden]

Hi

I'm so sorry that you are finding it hard, , this is totally understandable. I have read on here that someone with compensated cirrhosis can live much longer than has often been said. Thinking of you and take care Lynne ii8bll

[Boonsy641 in reply to Hidden]

Thank you for your words of reply. I suppose I am looking for words of comfort really. Thanks so much. God Bless

[Hidden]

Now you can tell I'm not with it, I must have pressed a couple of letter without realising it🤔

[unique4]

Morning

Sorry to hear your bilirubin is raised, it doesn't necessary mean that your liver is going to fail you. Bilirubin and ALT liver blood tests can be unsettled for a variety of reasons, but some consultants find it difficult to get to the bottom of these disturbance. I have Gilberts syndrome which is indicated by high bilirubin levels and I also have high ALT liver tests. I do get severe bouts of pain around upper right rib cage and inflammation of the liver. But please try to pace your thoughts until your results are in hand. I know it is easy to think of the worse scenario, but these blood indications may NOT mean the worse.

I am in my 5th year of being monitored by my consultant and with many tests, scans, and a biopsy apart from some abnormal cells on the liver and slow drainage of the biliary ducts tests are still being done. I absolutely emphasise with the worry that this can cause whilst waiting for your test results. It can be very daunting a frightening when you read about illnesses connected with the liver. I had a scare last September and I felt very similar to you. I don't want to bore you but when I had to see my consultants to get my results, he said he had forgot to chase it up!!!! I broke down feeling very lost and alone with it all and upset to the point I decided that day I was not going to spend my time worrying and reading about it. I found it made me more anxious and causing many sleepless nights I decided that until I get that appointment with test results that proves a life threatning liver disease to be positive, I will carry on with my days with trying to enjoy them and focus on the now and spending time with the family and friends. Its out of my control and the body will do what it needs to, worry is only an aggrevator that turns thoughts into a negative mind. One thing I have learnt through all of this, is to stay positive, look after yourself, and make the most of your day when you feel able to. A healthy mind reflects how your body feels. learning to accept how things are now has helped me also.

You are welcome to private message me if I can be of any help.

Stay positive.

[Boonsy641 in reply to unique4]

Thank you for your wonderful reply. Its difficult to out into word the feelings I have in a family environment. I have a son of 12 and do hide my anxiety and feelings well and will continue to do so. However my wife always knows when something is not right, she is very pragmatic about all things to do with health and is off the same ilk as you I think. I cant help but fear the worst even though I know it is doing me a lot of harm, I just keep on thinking that the center of my world, my beautiful boy, will be without his dad as a result of this and I know how much he adores me, it breaks my heart it truly does, even as I write i am here with tears in my eyes in my office. I seem to have googled everything I possibly can and the ultimate conclusion is that high bilirubin will eventually be the death of me due to Cirrhosis, When I try and be level headed about these things I creep back to google and end up an anxious wreck. I just cant see it being anything other than being the start of liver failure. Its such a negative way of thinking and I really do need to come to my senses and stop Googling. I cam across this website at 2am this morning! and will only turn to this from now on I think as there is no better way to talk of these things than with people that have been through it. God Bless Unique

[Hidden]

Hi Boonsy641

Welcome to the forum. Bilirubin levels can be raised for many different reasons; if the A&E doctor was very concerned then they would have admitted you.

We would suggest you visit your GP, as already advised by the A&E doctor, and fully discuss everything with them. They will probably take some more bloods and possibly order an ultrasound.

Here is a link to our publication 'Liver disease tests explained' that may be useful to read prior to speaking with your GP:

britishlivertrust.org.uk/in...

Keep us posted and try not to google! Our nurse led helpline is also open until 3pm today on 0800 652 7330 if you would like a chat with us.

Best wishes

Trust1

[Boonsy641 in reply to Hidden]

Thank you. At times I dont know what is worse, the potential of what High Bilirubin may lead to or the anxiety I get when I read all the horror stories on the internet. Your words are completely right and I know deep down that is how I should face this by means of taking one step at a time and not jumping to conclusions. I guess when I initially wrote my position above I was looking for any words of comfort at all and in the few replies I have had, they are comforting. This will be the only site I visit from now on. Thank you for the link too. God bless and thanks again

[Hidden in reply to Boonsy641]

There are many different clinical reasons why your Bilirubin may be high.

Gilbert’s syndrome (GS) is a condition in which you have higher than normal amounts of bilirubin in your blood. Gilbert’s Syndrome is usually discovered by chance when a routine or unrelated blood test reveals a rise in the level of bilirubin in your blood. it is likely that you will be told that you have high or raised ‘serum bilirubin’. For many people Gilberts will cause no problems.

britishlivertrust.org.uk/in...

You may want to ask your GP about getting assessed for Gilberts Syndrome if there is not another clinical reason why your bilirubin is high. They will be best placed to look at all your test results and medical history and order the next medical investigations.

Best wishes

Trust1

[Boonsy641 in reply to Hidden]

Thank you so much again. As I say its looking for those fleeting glimpses at positivity that will, I am sure, move me away from the blackness that can effect the mind. God bless.

[Kristian]

Hi Boonsy,

It is possible to have acutely raised bilirubin without chronic liver disease. So it may just be a blip given the other symptoms you were having at the time.

Of course reading doctor google we always tend to look at the worst outcomes rather than all the other, less drastic, outcomes. Having some sort of liver issue doesn't always lead to cirrhosis, cirrhosis doesn't always progress to the need for transplant. Many issues with the liver are very treatable and cause few long lasting issues.

Treatments can include medications, but it could also be just simple lifestyle changes that do the trick. It may even be just a case of altering other medications you may take for any other ailment you may have, noting here you mention issues with your kidneys.

So, it may not be all the doom and gloom it first appears.

[Boonsy641]

Thank you Kristian for your comforting words. Of course, along with the others you are so right. they dont actually mention anything like this on all the websites I have visited. These websites always lead to finality of your situation which is alarming and the main driver of anxiety. I will repost when I have my LFT results. The kidney issue is down to Kidney stones which over the years has plagued me badly and it seems that I have to deal with them every 8-10 years or so. This last time left me with a stone that they cannot deal which again throws open the thought, "is the pain I am feeling (although 3-4 on the pain scale) due to the kidneys or the Liver, and since high Bilirubin came back my feeling is the Liver. I just have to look at the positives. The one thing I do take from your comments is that Cirrhosis doesn't always lead to transplant. You see my thinking was that when you have cirrhosis there is only ONE outcome. From the breif messages on here I see that that is not necessarily the case. Thanks again Kristian and god bless

[Seahorse123456]

What ended up happening? I see my GI doctor tomorrow. My bilirubin is 1.9 ml as of a few weeks ago (end of July). It was 2.5 back in 2018 last time I know it was checked. I am freaking my self out. I had an ultrasound done this week and all appeared to be normal with my gallbladder and bile duct. I am freaking out. I do throw up sometimes after dinner (if I eat too much or food is too greasy). I have not lost any weight at all and I am not jaundice.

[Boonsy641 in reply to Seahorse123456]

All was fine. The levels do go up and down, go suggested I concentrate on losing weight to improve overall health. I had same tests as you and had the same anxiety. Don’t or try not to worry. High bilirubin has other features attached to it that raise concerns. From what I see you don’t have these, you have a higher reading for bilirubin only. It could be raised for many many many reasons more commonly for reasons that are not worrying. I would suggest GP will put your mind at rest.. don’t worry. I strongly believe all is fine

[Seahorse123456 in reply to Boonsy641]

Thanks for responding! I had the full liver panel blood work done on Friday so we shall see. My ultrasound all looked normal as far as they could tell.

[Amethyst91 in reply to Seahorse123456]

I hope everything turned out well for you. I e had mildly elevated bilirubin like your on and off for 7 yrs. I’m freaked out as well as googling it reads pretty much certain doom. I’m getting a fibroscan Thursday and freaking out so bad I feel like I can’t function. My ultrasound also showed mild fatty liver so that’s not great but if it’s true to only be mild fatty liver then I will be so relieved and happy to change my life around for the better so I can have a long and happy one especially since I’m only 28.

[Boonsy641 in reply to Amethyst91]

Your young. Your liver is the only organ that fixes itself. Believe me when I say that you have nothing to worry about. It is usually non explainable or it is down to your fatty liver. I am totally convinced that all you have to do is lose weight and stop stressing. You are fine believe me

[Amethyst91 in reply to Boonsy641]

Thank you. I’m hoping that is although I didn’t really need to lose any weight I’m 5’9 and at the start weighed 137lbs and now I’m down to 116lbs so I think I might be underweight now. I’ll admit I’m skinny but I was definitely not eating healthy at all on top of whatever I was drinking so I guess you could call me skinny fat and I’m hoping the weight loss is due to eating lean healthy food and no booze now and nothing worse.

[Boonsy641 in reply to Amethyst91]

You really have nothing to worry about. Truly. Your signs are negligence at best so the scam will be more to put your mind at rest rather than with a view to something bad. Please. Don’t worry you have your whole life ahead please of you.

[Boonsy641]

I mean to say negligible not negligence👍