Hello everyone, I've just joined and started reading. I've probably had liver problems to some extent ..now I know what they are maybe since about 15? I started getting itchy then and I had this fat tummy no matter how skinny I managed to get at 15 onwards. People would ask me if I was pregnant. So now I know what probably causes the itching. I have very elevated liver enzymes on and off since 2011 but raised occasionally before then. I will have to sort out my blood tests.
My test last week had mostly elevated liver enzymes, ALT was 103? and the rheumy stopped my methotrexate. I had tried it twice , once 7.5mg for two weeks (once a week) and then got my liver enzymes back just into normal range with strict diet, no alcohol, and stopping my statin (rosuvastatin, Crestor). 2nd time was 5mg Methotrexate once a week for 3 weeks. not a lot I would think! My tummy looked like I was 8 mths pregnant all of a sudden..up from just fat! Now I know ... so today, after seeing this site I now have the incentive to look for a scan for myself.
Honestly, the GPsDon't seem to care at all? just lose weight? Oh, one GP told me to get my gallbladder removed as I had high liver enzymes?? I still do not know if it would help? I got sent for the op about 7 years ago, then thought no the gallbladder is after the liver? then today I am reading there could be a backflow blocked and it may affect the liver. I've never had any pain at all? in liver or gallbladder?
I have been on pred for the past 3.8 years so just gained weight! Should be 50kg, was 58KG, now 68KG! I read about a fibroscan on the PMR group I am on. They are wonderful, so I have started reading here..and so far found out about the tummy and the itching! I NEVER knew!! thanks guys. BTW I am in Sydney, Australia. I have PMR and Hashimoto's as well I have never drunk a lot of alcohol but I do like a nip of scotch occasionally or a beer on a hot day. I have not touched any alcohol in the past 6 weeks...and still high liver enzymes. So today I have started a strict diet. Today I ate one chicken drumstick roasted previously and had a coffee with milk and 3 cups tea with milk. I have spent today looking for where to get a scan and what to get. I have found a place that does garranmedicalimaging.com.au.... They use an ultrasound machine, not a dedicated machine , and I have to get a scrip for "Ultrasound Abdomen with Liver Elastography". I understand from reading it may work better with my fat tummy than a fibroscan. I hear abut a fibroscan from a lady on the PMRGCAUK group. I've asked docs before if maybe I have autoimmune liver problems but have been scoffed at and dismissed. After reading here I am concerned. I usually ea ow carb and low fat with some carbs like veges and some fruits.. maybe too many fruits. I have been drinking a lot of home juiced oranges lately from my own trees in my yard.(obviously no added sugar, but one tree is sweeter and the other more tart). Hope this isn't too long an intro and I hope folk can post on any tiny part of it.. but I still have a lot of reading to do on here and I do not want to ask questions that have been answered a lot before!
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Jan_Noack
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As we are UK based- I can only discuss from knowledge of our NHS service.
Here if you have elevated liver bloods then you would usually be sent for imaging such as an ultrasound scan. Dependent on results, you may also be sent to a hepatologist for further investigation such as fibrosis testing ( FibroScan etc) and specialist blood tests.
If you have a history of autoimmune disease you may also want to re-discuss autoimmune liver testing.
A referral to a liver specialist would be a good place to start.
Have they ever referred you to a hepatologist or liver specialist? You seem to have had a lot of problems but no real answer.
Just on your food for the day, 1 chicken drumstick? I hope you had more than that to eat? If, only if there is an issue with your liver ask to also speak with a nutritionist so you can get a good balance of nutrients to help your liver. After reading posts on here, my suggestion would be to write your questions down for the doctor so you know you are getting some answers, all the best 🌻
no I am going to ask for a hepatologist. I went to a gastroenterologist from 2011 to 2016 or so , but all he would say was go on a diet and lose weight, then I got PMR and on prednisone, but even then I spent months trying likes like the green juice diet with no effect. The gastroenterologist did give me a endoscopy and it showed a hiatus hernia but despite my pleading for help like an operation he said "they don'rt work". When I asked him in 2019 he scheduled me for another endoscopy as I was concerned that whenever I took the prednsione especially to ate I'd get bad reflux. I never had the heart burn but did lose my voice and get COPD and a very sore throat and had to sit at night if I ate too much. Pred make me starving !! I asked him if he would please sew my mouth shut! LOL.. he just said funny girl. The emthotrextae I trailled actually suppressed my appetite. I'm just trailly a protein at least one teaspoon full a day diet to see if I can get my tummy to get smaller for a few days (probably 3) as the methotrexate is still having an effect . I really cannot tolerate prednsione anymore form the reflux, and I cant get eneteric coated or even the Lodotra/Rayos delayed release...people in the UK don't know how lucky there are with meds. Apparently there wasn't sufficient demand for the enteric coated pred so Its being discontinued over there too. I have a few autoimmune diseases like Hashimotos (or I had very high TPO and TG antiboides int he thousands for decades and my thryoid ultrasounds shows destruction by thryoiditis, I have something like moyamoya syndrome but only in one area not apparently two that most get and that is about one in 200K (usually to be one a a million a few years ago but being diagnosed with with more MRI's..my brain vessels in one area are like smaike)..that is maybe autoimmune too and PMR is autoimme . I have two kids with psoriasis and yet when I asked a couple of times different GPs and the gastroenterologist about could I be tested to see if I have autoimmune hepatitist , I was pretty much scoffed at. I am very fatigued..but all the things can do that. They can'r say I do to have autoimmune hepatitist without testing me? as its rare and yet moyamlya must be rarer? I've had all of this now for about 50 years... just getting more severe. I've been on prednsione for 3.8years so antibodies will be suppressed I guess? I am thinking of getting a referral for the and going to Canberra for a 'Ultrasound Abdomen with Liver Elastography" as there is no known covid there at present. I would like my bile ducts and gallbladder scanned as well, just in case some blockage or partial blockage there is causing a back up that is damaging my liver..I was told this by a GP who refferd me for a gallbaledder removal but it didn't make sense as the gallbladder was after the liver and I have no pain in the gallbladder? .. but I have been reading somewhere yesterday that it is possible ?l so I'll have to find our now . From previous experience to get my moyamya diagnosis aI got scans in the wrong place on my brain a couple of times!..as I have so many symtms and the radiologists asks the symoms ..I they only t=do one tiny area and miss what is going on... like I had tinnitus and a very sore head all ovc=ver and massive headaches but I wanted a total brain MRI or CT I forget now..but I got the inner ear of something like that? which didn't show anything. I've found if everything is not written on the scrip I only get the minimal areas... so anyone know what should be written to get everything done related to the liver and gallbladder and ducts on an ultrasound would like some help..
Don't worry I give up when I get starving but I am scared now about my liver..
I've had yellowy skin on and off and yellow in the eyes, but at present my eyes are only glazed and slightly red with the mild headache that's tarted with the methotrextae (I think , it may have been the progesterone capsule I took one of last week as well!). I never could work out why my eyes would have yellow blotches in them.. but I haven;t had them for a while, so hopefully a good sign.
also on one ultrasound the girl doing it who probably did not know a lot was exclaiming loadly about one of my organs in my abdomen ..oooh look at that , I'venever seen one so large. Looking at where and the shape of the liver I think it was that. I was in my twenties then.. she thought it might be my spleen..like I said she didn't know a lot. The report just said normal for everything though...will see if I can still find that one!..but It seems that maybe my liver was enlarged early on, so I need to find out why do livers get enlarged.
another ultrasound later on said the attendant said I had a fatty liver , and i do not knop if that got in the report or not either. The problem is some doctor writes up repost a day or so after the test... going by the scans and they don't seem to see what the operator sees. The operator are not supposed to comment but sometimes if I ask they do say what their experience seems to show...
one thing I did notice was the hiatus hernia and the reflux problems (which only showed as a cough and asthma or COPD it was called until 2017 on the prednisone made t worse) was the hiatus hernia occurred about the same time the cough started and the liver enzymes were raised. Is the hiatus e\hernia and GORD related to the liver at all? It just seems so to me?
I've just been diagnosed with coarse liver no explanation to what caused it I don't drink I have copd ben on and off prenisone and amoxicillin and had a slight heart attack in Dec and diagnosed with a fib waiting for full series of bloods to be done I thought it was beta blockers channel blocker and statins that have been causing probs but no explanation of what next ?
I'm on statins , crestor..before that I had stopped for a short time but was on lipitor. I was thinking it was stsins and stopped the crestor to get my liver enzymes back in range and like you at the time no driving and good food for years mostly..i did slip up I must admit in past few months and baked a cake (actually two cakes), and have been eating some meals on wheels type meals which are trash! as I have been too tired to cope.. I trialled methotrexate twice. I think it's the prednsione too, it is definitely getting my GORD and my GORD I blamed completely for my COPD.
Now I have looked up ascites and it looks like I may have that too.. My tummy just grew big over a few weeks but really over a couple of days mostly and I could feel it grow.. but the top of my legs too.. I do not know if this is an emergency of or what or where to go? My urine went frothy after methotrexate as well and still is a bit but not as much. I tried 7.5mg weekly for two weeks..tested ,liver enzymes had gone up.. thenwent off for about 3 months and had to stop Crestor to get the nos down. Stopping crestor made my cholesterol go from 4.9 to 8.5 in a month or so. The started methotrexate again at 5mg weekly for 3 weeks tested and liver enzymes raised again . Bth times I had frothy urine but wasn't sure. iT disappeared after the first time. Now I have it again..and the tummy, I think it went a bit larger the first time too..just not so I couldn't sit vertically. I now have to recline. AT first it was taught but after a couple of days it is more like flab..but I do have some pressure on my bladder mostly? I ram really lost here... The closest hospital has COVID and someone got it while visiting a few days ago, and 4 patients I think? I'll have to wait until Monday to ask my GP.. butunfortunately he doesn't know a lot. he just told me I was to stop statins as everyone has to atpp statins..so I've been trying to teach hi..but when I asked for the cholesterol to be checked he told me to find another doctor. Luckily or unluckily for me the result of test has made hiaccept me again. The problem is he is disobeying the guidelines for GPs which say, everyone do not need statins and cholesterol can only be checked so often. It eve telss him it doesn't t change in less than 3 months!! sihgh I am not in any pain so I do not know. With PMR i went to emergency a few times over ten years or so and they just shrugged and tld me to go home... so you have to find the right emergency dept... and HI BTW I've cut back and only take the Crestor every 2nd day so as not to hit my liver too much.. lost again here
it's been in the back of my mind if the prednisone itself doesn't cause it? It has to go thru the liver first..whereas prednisolone doesn't? I think?? I have tried prednisolone but it only works for a few hrs it seems.. and pred nsione last at least 12 hrs, so I can away with twice a day , or even once a day with some stufness and pain. It must tax the liver ? I really appreciated your reply
You definitely need to see a liver specialist and also perhaps a rheumatologist to investigate all your auto immune conditions together and check whether indeed you do have an auto immune condition affecting your liver. When you have one it is highly likely to have more AI condition (as indeed you can attest).
Prednisolone is the first line treatment used in many auto immune conditions (including autoimmune hepatitis) and often requires a PPI (proton pump inhibitor) such as omeprazole or lanzaparole to be prescribed at the same time to protect your stomach lining as pred is very harsh on your stomach and can lead to bad reflux type symptoms. Usually you will also need a calcium/vit D supplement along with pred too to counteract the calcium stripping properties of pred. Pred wouldn't be the reason for your raised enzymes and if anything it will be helping to bring them down.
Methotrexate though has been linked with the development of drug induced liver issues.
I think you need a very thorough work up by a rheumatologist and a hepatologist with investigations as to what 's going on. I don't know how your health system works down under but you need to push for appropriate care and tests.
thanks Katie, I was on pantoprazole for years in large doses ( I had an endoscopy in 2011 and it showed a hiatus hernia but the gastroenterologist did not want to operate and said the ops didn't work!?) My liver enzymes were raised back then too, and I wandered if they were related to the hiatus hernia at all?
PPIs never worked completely (even taking twice a day) and I just felt sicker and sicker and then I came down with PMR. I actually blam the PPIs on exasperating the PMR tso that one day I could not longer get out of bed.
I am under a rheumatologist for the PMR and it was he who trialled the methotrexate. He now want me to trial leflunomide , which looked to me to be fatal with the liver for some, though works well for others..so I will be checking what is going on with my liver first!! I had to get my liver enzymes back t normal to begin the methotrextae on both trials, but they rose quickly at low doses.
My tummy may be ascites??(Just googling and reading n here and looking at images) , and I am wondering if that with raised liver enzymes from the Methotrexate and /or Crestor and the frothy urine after methotrexate means an emergency or not. I will phone my GP on Monday (I did try Friday when my tummy was really hard..it is now just biggish. It got that way all of a sudden over a couple of days though it had been getting large for a while gradually too..just on a couple of occasions lately I could just feel the expansion?., though its never been slim..at least since I was about 15!(even when I was about 6st! I still had a tummy, unlike other girls.) I am even wondering if prednisone tablets themselves will hurt the liver? I agree with you they have wrecked havoc on my GORD!..so much that i dread taking them now. I am putting them in a capulse, I did try putting a coating on the cap (a shelac used in cake decorating, but it still releases in my tummy and I awaken to GORD about 2.5 to 3.5 hrs later. I guess I need an enteric coated tablet. the rheumy wants me off the pred..hence trialling the methotrextae and it did seem to make it clearer for me to think. I am no wondering if the liver has been at least a part of my fatigue too.
Hi, as others have said having auto immune issues can predispose you to further AI illnesses. Just to reassure you though, ascites is an end stage liver problem caused by very low albumen levels. It is not likely to occur from an early age, and persist without other end stage symptoms. I would be very surprised if this is what's causing your big tummy. Bloated Ness from dietary things and hormonal fluctuations are more likely candidates. You could also be unfortunate in carrying weight in that area, some people find they can be slim with a bigger tummy??
Some of the problems you report could be from blockage/gallbladder issues, so a scan is needed to confirm or rule out that issue. Either way, reducing fats, and processed foods should help. Bile duct issues can cause itching, the condition Primary Biliary Cholangitis (PBC) is an autoimmune illness characterised by high ALP, GGT and AMA m2. Those blood tests can be enough to diagnose PBC, but sometimes they like to confirm with biopsy. The difficulty for you will be what symptoms ares caused by the conditions you currently have, and the medication you take. As itching and fatigue etc can be caused by many other things too.
thanks.. don't know why my tummy got soo big though..i could feel it and the top of my thighs growing when I ate for a few days. I'cve cut back to a small meal per day and its stopped growing. I can't sit as it's on the way! My urine went frothing at the same time, but it stopped this morning and I've been pee-ing a lot the past couple of days. I feel a lot of pressure on my bladder. I wonder if yo do get it but not severe what it's like. I guess I just gained a load of fat all of a sudden then? either way I'm too scared to eat much, so once a day and a small amount of protein . I'm going to my Gp's tomorrow to see what he says. I wasn't sure if I should have gone to emergency,.. but with covid in the hospital closest that has a liver unit.... I could go to Canberra which is about 4 hrs away..they have no covid. I guess I'll find out tomorrow , and thanks for the reassurance.
Pred is used to bring down inflammation when the liver enzymes are raised. I have never known anyone say that pred damages the liver.
It is entirely possible to have an enlarged tummy not caused by ascites, I have this problem. Even when my tummy area is enlarged, I know it is not due to ascites because I have had an ultrasound which confirmed very small amounts of fluid. My GP tells me it is likely to be gas! Exercise and diet have no effect for me.
If you had gallstones that were blocking the bile ducts, this would become an issue that needs dealing with promptly as it can lead to jaundice etc.
Pred causes you to feel hungry even when you have just eaten and can also cause the tummy to swell. This is how it works on me, but everyone is different.
thanks so much. that makes sense. My tummy swelling has gone back to the pred swelling now.. like you said it seems softer, mostly fat with perhaps some fluid. I feel a lot better too. I stopped the crestor on Friday.. so maybe I was getting over the methotrexate or it was the Crestor. Yes pred made me soooo hungry. and I will ask for an ultrasound to cover the gallbladder and bile ducts as a check. My liver enzymes were high. ALT went up to 101(was 40before adding back methotrextae and Crestor); AST 57 (has been 155 in earlier years) , GGT 47 (has been 78 in earlier years), ALP 149 (has been 208 in earlier years). Liver enzymes has been raised for a few decades but always told it just means my liver is working hard...until now when the rheumy told me to stop methotrexate as my ALT was too high. Hence my concern. Now my tummy has gone down enough for me to be able to sit again and I feel better overall and I've stopped most of the fothy urine, strangely I am not as concerned! I have been a tad jaundiced over the decades in skin coloring sometimes and especially whites of eyes but they're OK now. They only went a bit red-glazed with the headache with the methotrexate this time.. again better. Thanks for your help.
No problem. I know your liver enzymes are outside of the range, but in the grand scheme of things, they aren't really that high at the mo (always assuming the ranges are similar to ours-but labs have different ranges and I have no idea about Australia). Just for reference, when I was jaundiced, my ALT was over 1000. Here in the UK, it is normal to look at the gallbladder on an ultrasound (they only don't bother if you are being transplanted as the gallbladder is coming out anyway). In terms of following the numbers, here in the UK, the tendency is to look at the trends rather than the numbers. This is because certain numbers, whilst out of the range for someone fully healthy, can be considered normal for you when they remain the same over a period of time, which is one of the reasons we are asked not to interpret anyone's results.
As for removal of the gallbladder, the thinking here is to keep hold of it as long as it isn't causing you problems as the surgery can cause unwanted side effects and isn't always a magic bullet. If however you are getting regular problems, then removal is considered or even recommended.
Glad things appear to be settling down for you and long may it continue. All the best
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BTW I've cut back and only take the Crestor every 2nd day so as not to hit my liver too much.. lost again here
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