I'm 35 and I was diagnosed with cirrhosis of the liver today.
I was referred six months ago to a Hepatologist who thinks that this is due to Haemochromatosis but my biopsy came back suggesting that there was no evidence of iron in the tissue sample. My specialist says this is odd because my initial bloods showed high iron levels (500 or so). Bloods have been done again today to see what the story is there, the biopsy results are also being sent off for a second opinion.
So, I now will be seeing them every 6 months to monitor what's happening to me, which I'm grateful for, but I'm told that my liver is functioning 'normally', and if the gene work comes back saying I've actually got Haemochromatosis, phlebotomy will alleviate the symptoms.
I'm completely confused here... Can I ask to see my results to show another doctor that can tell me what's happening?
So basically, I've been told that I've got mild Cirrhosis of the liver, and that's all the info I've got until I see them again in six months.
Frankly, I'm terrified and I don't know what to do. Everything I read tells me that there's no such thing as 'mild scarring' and that I've pretty much got an irreversible death sentence.
Any advice appreciated. Thank you for taking the time to read this.
Written by
oddub
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Welcome to the family nobody wants to join but who offer support in a million ways.
It is a bolt from the blue when you are diagnosed as there isn't much information out there for liver problems so you can feel thrown in at the deep end.
Don't panic toover much (no point telling you not to panic attacks all because we are all human). Cirrhosis is a lot less scary than portrayed in the media.
British liver trust is a good way to start as they have some information leaflets you can either download or request print copies. These are certainly worth checking out.
I know that there are different grades of cirrhosis and it is possiblethat you have 'compensated cirrhosis ' which does mean that the damage is not bad enough yet to stop it working properly. There's enough healthy liver to make up for the damaged.
There are a lot of tests that can be done but as you are being seen 6 monthly I would say take that as a sign that things are fairly ok.
Take a deep breath and shout,scream, moan and whatever you need to do. There will be people here who understand and offer a shoulder when needed, and who are far more knowledgeable than me.
Rita x
ritas reply is good info yes it can be very upsetting and your in the right place,,i am suffering from Cirrhosis i also very badly and have learnt a lot on here ...dont be freighted to ask for second opinions .....remember drs deal with everything and are not specialists in the liver ,,,your hematologist is ,,and i would listen to him ,,,i saw mine for the first time 12 days ago was very daunting but he explained how bad it was and to just keep healthy as best i can ,,,you'll find lots a new friends on here its a great place to go matt
Don't panic yet. There are basically 3 stages of cirrhosis. You are clearly in the first and mildest and it is reversible at that stage despite what you read. Even at the second stage it can be reversed. It's not a guarantee but it can be. Reading your post I don't think you need to panic just yet and if the worst comes to the worst it's been diagnosed early and you will get the best treatment. Don't worry, you're not going to die. Worst case you will need and get a transplant but you are a long way from that right now.
I completely understand how you are feeling about your diagnosis, having been similarly diagnosed with Cryptogenic (i.e. of unknown cause) Cirrhosis ten years ago at age 49.
Chronic liver disease (of whatever type) is a serious illness, but I would not describe it as an 'irreversible death sentence' any more than all the other things that can and eventually will kill you. Every living thing has the same fate. However, I know only too well how this diagnosis can effect one's psychological well-being.
Many clinicians, from junior doctors to senior consultants often ignore the psychological effect of diagnosis, they simply do not have the reserves of empathy and the time to communicate with their patients. One of the memorable pieces of advice I've had from a consultant was "just go away and get on with your life" which was both pragmatic and useful. You can ask to see your test results – mine are routinely sent to me and my GP by my consultant and you can always ask for a second opinion – after all, it's your body!.
For several years I was determined to try and discover what the cause of my condition may have been, having kept reasonably fit and avoiding all the things that I knew could affect my health adversely.
In hindsight, this was my way of coping with the diagnosis, but it became apparent that whatever the cause, the damage had been done and I had to face the reality of the situation. If the time and circumstances arrive, liver transplant is now hugely successful procedure, but it is important to accept that you may never be in such a poor condition to need it. My condition was discovered incidentally – and I'm fortunate that it was and that my condition is now monitored regularly and that I benefit from the advice of hepatologists.
So, to summarise:
Try to reconcile yourself to your condition (perhaps think of it in terms of a more serious 'having to wear glasses'?).
Eat sensibly and keep as fit and healthy as you can as an insurance against your condition worsening.
The six-monthly clinic visits together with the associated scans and blood tests can provoke some anxiety, but it might help to think of your regular clinic appointments much as having a dental check – it's not always going to be bad news!
I agree with the comments in other replies: a diagnosis is not the end of the world but a) a wake up call re diet and lifestyle and b) a future where your condition will be monitored on a regular basis. It may be that after some years, you might need a transplant but as long as you stay otherwise fit and well and maintain a good diet and no alcohol, you would be a good candidate.
The possibility of a diagnosis of genetic haemochromatosis might account for your liver problem and the genetic test will clarify that. Treatment is relatively straightforward (regular blood "donations") until your ferritin levels return to normal. If this is your diagnosis, you might find the Haemochomatosis Society website useful - haemochromatosis.org.uk
Mike
Hi and welcome , you have already had great advice , the liver is an incredible organ and even when badly damaged can carry out some of its some 500 plus functions. Do what you can in terms of diet and exercise and you will see the benefits , use this site as the expertise, knowledge , compassion and friendship of those who contribute is wonderful and really restores your faith in human nature. 😊
It has all been said, I add the liver is capable of regenerating itself. Read up about this aspect of the liver!! also listen to others advice, healthly life style, give your liver the best conditions to thrive. Seek help here too. Good luck!
Hi, an interesting post this. I have Genetic Haemochromatosis (GH), diagnosed 26 years ago at which point my liver was very swollen but after biopsy not deemed cirrhotic, although certainly on its way there! Once I was de-ironed, which took 18 months or so by venesection, my liver returned to normal size and seems ok. What intrigues me about your case is that your ferritin levels are high-ish but not disastrously so, top end of normal for a man is about 400 a bit less for a woman, so your 500 isn't likely to be causing organ damage yet. As a for instance mine was 3200 at diagnosis. Also do not run away with the idea that a genetic test proves you have GH it will only show whether you have two copies of the gene or not (ie you are homozygous), if you do then that means you have the propensity to load iron and nothing more. By no means all people who are homozygous load iron and the only way to tell is by checking your ferritin and transferrin saturation levels which appears to have been done. Are you sure the figure was 500 and not 5000?
Hi Oddub, I completely understand what you are going through, I am 29 years old and I was diagnosed with Cirrhosis 3 years ago.
It is still only sinking in that the fact that I have Cirrhosis of the Liver, people think Cirrhosis is all alcohol based but it isn't I haven't drank for 10 years (by choice) but now I can't touch a drop.
It was only last month I was told that the medication I have been prescribed is to prolong me needing a transplant, this hit me like a ton of bricks, being told at 29 that you will need to have a Liver transplant is hard to get your head around.
I have had to change my diet and remove all white carbohydrates (not the easiest thing to do) but I have managed it for the last 3 months. To get my head around my diagnosis I visited the British Liver Trust website and this helped my understand what was going on with my body and what it meant moving forward.
I can only recommend you use leaflets specifically for Liver issues along with the British Liver Trust to help you understand more, I am sure you have people around you who you can turn to when you need to talk but if not this is forum is always good to get help and advice from people who are in the same boat as yourself.
Your guess is as good as mine, my specialist at the QE told me to avoid white carbs. I think it is something to do with your digestive system working harder to break these food groups down. I am just following orders if i am honest.
Welcome to the family.I to was diagnosed with cirrhosis ov the liver.and yes you have the right to see another doctor to look at your results and tell him to explain more about cirrhosis and what to expect in the future.and that your scared to death .but people can have cirrhosis for 20 years with no problems .ask im to send you for a fibro scan which tests how stiffness you liver is .but it can't tell you how bad the scarring is .theirs also a site on here but you'll have to ask one of the others what it is.what ever you do don't Google up about it as it will scare you to death and not very accurate.I hope I've help you good look xx
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