I have recently (Feb 23) been diagnosed with Cirrhosis. Was a shock as I am also a Type 1 Diabetic , so just something else to add to the list Had no and still don’t have any symptoms - alarms bells were raised from low platelets with my bloods from my diabetes checks. For the last six years my ALT have always been raised to around 3 times normal levels - I had an ultra sound in 2019 and everything was fine so nothing went any further until low platelets shown up in Dec 22.
I had a repeat ultrasound in March in this year and they diagnosed cirrhosis. I had a fibroscan in June and this returned a score of 13. I didn’t drink much alcohol but was overweight (obese on the bmi scale) so they put the damage down to non alcoholic fatty liver.
Finally my question I haven’t had any alcohol at all since Feb and have lost two and a half stone in weight. My BMI is down to healthy weight and had bloods done today as part of my diabetes check. My liver results came back with still high ALT (very little difference in previous tests) and high GGT and platelets going lower than previous.
How does ALT readings work ? Is it a measure of damage already there or if changes are made to lifestyle would you see a decrease ? It’s just I am in the dark with it all really and I don’t want to rely on google - the GP I guess will just refer it on again and I haven’t heard anything from the hospital since my fibroscan . I am just worried that since they said it was fatty liver and I have made changes I expected to see a decrease in these levels and don’t want to mither the GP unnecessarily. Thanks for reading the essay - any info greatly appreciated from anyone who had been in the same unfortunate boat - all the best
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Well done on the weight loss and your lifestyle adjustments that will help you enormously. I’d go back to your GP asap. Your bloods are not normal and that should routinely trigger a follow up. You don’t say where the bloods were done, so your GP may be unaware…just to be safe I’d book an appointment to discuss with them. With a diagnosis of cirrhosis you should be having appointments with a consultant hepatologist/ gastroenterologist. I have a six monthly check up with my consultant, coupled with routine bloods and ultrasound. They screen me for liver cancer and check the stability of my liver. I also have a endoscopy to check for varices. I wouldn’t leave it as you’ve moved from fatty liver to cirrhosis which in itself should be being followed up alongside your diabetes. It may all be in hand and it’s great you have no symptoms at the moment, but you don’t want to develop some so go and talk to your doctor to check. In terms of your bloods - they can improve and your ALT by no means needs to remain high. Nor do your platelets need to remain low. The underlying cause of your liver damage needs to be addressed and then things can improve. Your weight loss and abstinence will all be helping…it may just be that the benefits are taking time to come through in terms of your bloods. It does take time. The cause of my cirrhosis was alcohol…I stopped drinking and things have improved to a point where all my bloods are now normal. It took a bit of time for that to happen. GGT is notoriously slow in reducing. I’ve become very well informed about my cirrhosis…through asking my medical staff lots of questions and through this forum. I never take things for granted around my appointments and follow up…as things can get lost/ overlooked and I think I’m the expert on my own body.
My bloods were called up by the GP as part of ongoing monitoring for diabetes - I will call for an appointment this morning to see their take on it. I think it’s part frustration part unknowing on my part as I expected to see a marked improvement between this set of blood tests and previous ones from 4 months ago but they are pretty much the same.
I had the joy of an endoscopy in June (I made sounds I didn’t think I could make ) They diagnosed a couple of grade 1 varices the same day and that was my last contact with the hospital.
This diagnosis has been a bolt from the blue if I am honest. When I was diagnosed with T1, I had as much information as I wanted but with this all I have had is a 30 min appointment with a consultant who confirmed cirrhosis and no further contact.
Again it’s probably frustration on my part at the cogs turning slowly because like you when I have a problem I throw myself into it and want to become an expert on the things that are harming my body.
Thanks for taking the time to reply - it’s good to hear that maybe I am expecting to much to quickly in the terms of blood results and by the sounds of it a massive well done on changing your life around - takes deep resolve and strong character to do that. 👏🏻👏🏻
A lot of ppl don't know they have cirrhosis until platelets show up low, thats when docs start to look at the liver, Most people( 85%) with cirrhosis have low platelets, and usually the first sign something is wrong.
Can understand that if Sophia if some cases are like mine - I am completely asymptomatic. If the bloods didn’t show any issues I wouldn’t know - in fact when the GP called me last December to say we have an issue - I was completely blasé to it - the high ALT has been with me for six years - I have had comments from GPs in the past saying it’s probably “your sensitive to alcohol” or “some people just have high readings” so I just went along with it as diabetes was always my number one concern and as as long as that ticked the box I was happy enough. It’s frustrating as this all seems preventable but we are here now so there’s no point dwelling on what could have been. Thanks for the reply Sophia.
I am wonder if Fib-4 was calculated during this six years? (as you are Type 1 Diabetic and NAFLD)? As I know alone ALT value is not enough to diagnose liver issue.
To calculate FIB-4 you need: Age, ALT, AST, platelet count. You can check this with your hepatologist.
I don’t think so - I have had high ALT readings since being diagnosed with T1 6 years ago - the GP sent me for an ultrasound in 2019 and it came back all clear - no follow ups and anything was said - every blood test since had high ALT then December 22 my platelets had dropped - another ultrasound in Mar 23 and this time they diagnosed Cirrhosis - I phoned the GP today to enquire about this latest set of readings but he’s basically shrugged his shoulders and says it’s in the hands of the specialists now. His exact words were that because of the cirrhosis the ALT levels I am getting are the new norm for me
Hi, I’m sorry to hear about your new diagnosis. Diabetes is enough to be going on with, you don’t need liver problems too. As you have T1 it would be worth asking your GP if they could test for autoimmune liver diseases e.g Autoimmune hepatitis and Primary Biliary Cholangitis. If it’s autoimmune it might explain why your blood results aren’t showing the expected improvement and you could get medication to help. If your GP cant do the tests ask for a referral to a hepatologist. With cirrhosis you should be seeing one anyway as others have suggested. And you’re absolutely right to avoid Google! Good luck
Thanks Readlots - I have made note of these and will ask my consultant about them when I next see her because after speaking to my GP today I feel as though I am not getting anywhere.
With diabetes and cirrhosis in the absence of much alcohol, you should have a precautionary blood test for genetic haemochromatosis (iron overload) just in case. It's eminently treatable by the way.
Also, if you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
I am in the exact same position. Changed my doctor. Met my new one today and nothing . Spent hours on the phone to try and speak to my consultant (guess he is on strike) can't even make an appointment to see him. I have just been left to get on with it . ATM I feel like I have been handed a death sentence. Why is there no-one to talk too. I have down loaded the appropriate booklets from the liver Trust but have loads of questions. Really stuck. All I want is dome reassurance I,m doing the right things.
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