Feeling confused

Hi everyone,

I am new to the site and would be grateful for any feedback 🙂

I have been under a gastroenterologist for the last year and after various scans I was diagnosed with a non alcoholic fatty liver in February of this year. I was told I needed to lose weight and exercise. In April I had a fibroscan. I lost a stone in weight although to be honest I did not do a lot of exercise.

When I saw the specialist a week ago he told me that my fibroscan was showing fibrosis and the scan reading was 9.9 I had high readings in several blood tests, my Alkaline phosphatase level was 222 ! High red blood count

He is repeating my blood tests at the beginning of Nov with a view to seeing me a month later. He has also said he will write to my doctor re referring me to see a blood specialist. He also stressed the importance of eating healthy which I have for the last six months and I now have a cross trainer for exercise.

What I’m confused about is how people say these results go up and down and aren’t reliable. Surely the specialists know more regarding our livers.

Also how people with cirrhosis say they that everything stays okay if they keep to the healthy eating and exercise.

I do not mean to come across wrongly but after the last few days thinking I’m not long for this world I feel reassured by the blogs on here that I’m not bad at all so therefore I’m confused.

I realise that I am in much better health than a lot of people on the site and I hope that everyone finds some relief soon 💕

[Hidden]

It appears that you have NASH as well as fatty liver. Fatty liver on its own is fairly benign but NASH isn't and can lead to progressive scarring of the liver. At least it sounds like you have a good gastroenterologist who is on top of your issues. If you do everything right from here on you should be able to stop any further scarring & reverse the damage. The challenge is finding what works to normalise your liver function & start reversing the fatty liver.

I exercise pretty much every day for up to an hour & my body mass index is 24 but my waist is too big so I'm trying to lose belly fat. I haven't had a drop of alcohol for close on 3 years & I haven't had a painkiller for over a year yet I still don't feel healthy & I've yet to have a blood test where there aren't at least a few values out of the normal range. My last blood test ALT was slightly raised along with ferritin & my platelet count was slightly low so my liver is mildly inflamed. I'm aiming to get my body mass index down to the lower end of the normal range and lose my belly fat. At my age (66) this isn't as easy as when I was younger.

The only remaining option I see if all of the above fails is to try a different diet like the one in the following link: drmcdougall.com/health/educ...

I see looking after my liver as primarily my responsibility and something that I'll do for the rest of my life. I don't overly rely on doctors. I've seen several GPs about my liver problems and none of them knew much about liver health. My long term GP happily gave me painkillers and downplayed the significance of the multiple values in my blood tests in recent years that were out of the normal range. He should have warned me that they were warning signs that my liver was struggling. The hepatologist I saw admitted that he spends most of his time poking cameras up peoples' backsides and down their mouths to check for cancer and he only sees a few people with liver problems. I at least appreciated his honesty.

[Hidden in reply to Hidden]

Thank you for taking the time to reply Edward, it is much appreciated. I will take a look at the diet you suggest and I will definitely step up my exercise.

Best wishes

Elaine

[freddie76 in reply to Hidden]

U sure u did not misunderstand. Was that definitely a hepatologist that made those comments. They see many patients on a daily basis with liver issues.

Which hospital was this?

[Hidden in reply to freddie76]

I'm in Sydney Australia. The doctor I saw trained as a gastroenterologist. His résumé said that he had a special interest in hepatology, gastroenterology, endoscopy, hepatitis B and C management, and liver FibroScans and that he provides Fibroscan liver assessment at Liverpool Hospital (the one in Sydney). The impression I got was that most of his résumé was nonsense. It turned out that he used to do FibroScan assessments but that was before a large scanning centre took over doing them.

He told me that most of his work consisted of giving endoscopies and gastroscopies to check for cancers. He only had a few liver patients mainly ex-alcoholics who stopped drinking when they got sick. When he saw my FibroScan result of 4.3 kPa and ultrasound scan showing a normal liver he didn't know why my liver was inflamed given that I'd given up drinking alcohol several years earlier (I was never a heavy drinker) and painkillers 6 months before I saw him. I suggested waiting another 6 months to see if my liver settled down. The 6 months is up & I'm due for a blood test. If it shows that my ALT & ferritin are still raised and my platelet count is still low he won't have a clue as to why.

There are very few gastroenterologists in Australia that only see patients with liver problems. Most gastroenterologists mainly see people with possible bowel cancer with people with liver problems being a small percentage of their patients. The guy I saw told me he usually only sees people with liver problems once in his consulting office and then they don’t show up for follow up appointments and the next time he sees them is when they are dying in hospital from cirrhosis because they continued drinking.

[freddie76 in reply to Hidden]

It seems this chap needs some lessons on cirrhosis.

There are many different reasons for cirhossis icluding genetic and autoimmune probs, all the heps, alpha1 to name a few. He seems to stick with alcohol so obviously untrained as far as liver diseases are concerned. I would go elsewhere.

Good luck

[Hidden in reply to Hidden]

Edward, if your ferritin is still high, why hasn't your doctor removed some blood? Are you able to donate? When my doctor found my ferritin only in the triple digits, he removed some to get it down in the double digits. He stated, too much iron not good for the liver.

[Hidden in reply to Hidden]

The gastroenterologist I saw did suggest giving blood but I'd have to go to a hospital to do it & the hospital would have to throw my blood out as I was infected with tuberculosis as a child so my blood couldn't be reused. Giving blood to lower ferritin is only usually recommended for people with haemochromatosis & I don't have haemochromatosis.

Ferritin is a non liver specific marker for inflammation present in the body & I have arthritis in my neck, hips & spine. I can feel pain in these places present all the time & when I exercise heavily daily I irritate my arthritic joints & probably cause some muscle inflammation as well. Because of this I'm always likely to have mildly raised ferritin. If I gave blood my ferritin would probably only drop temporarily and my iron stores which are a little below the middle of the normal range would drop & this might cause problems like low energy due to a low iron level. At my last blood test 3 months ago my ferritin was down to 385 & I'm prepared to live with that.

My ALT level & platelet count are the blood values I want to see normalise. Only a few years ago my ALT was typically 25 to 30 even when I was taking painkillers & drinking alcohol in moderate amounts. I started to feel noticeably poorly when my ALT rose a little above normal where it has stayed for a couple of years together with my platelet count being a little below the normal range. I'm lucky compared to many other people on the forum in that my liver damage appears to be relatively mild & should be fixable with lifestyle changes.

[Gordon99]

Hi, the liver can regenerate and repair unless scarred by cirrhosis. Fibrosis is a stage before cirrhosis so if you change your diet then repair and regeneration can happen, hence changing results. Keep up the good work you are doing. See it as an early warning and hopefully you can avoid surgery. Further tests may be required to determine if there is any scarring, even so the changes you have made are beneficial. Good luck.

[Hidden in reply to Gordon99]

Thanks Gordon, many thanks for your input.

[Dldtx]

Maybe this will help you understand the progress if you don’t know. A buildup of scar tissue in your liver is called fibrosis. ... stage 2: mild to moderate fibrosis with walls of scarring. stage 3: bridging fibrosis or scarring that has spread to different parts of the liver but no cirrhosis. stage 4: severe scarring, or cirrhosis. There are two main stages of Cirrhosis -- compensated and decompensated, since you didn’t mention either of these your doing great probably not even close to Cirrhosis at all so from what you said I would think your life expectancies would be normal if you follow the drs requests an they get the fibrosis to stop or slow down. Us with Cirrhosis we have stages and chance, Stage 1 cirrhosis is considered compensated cirrhosis. Stage 2 cirrhosis is marked by the development of esophageal varices, due to worsening portal hypertension, but without the presence of ascites. Stage 3 cirrhosis is marked by the development of ascites, with or without the presence of varices.

Also a variety of signs and symptoms may be present with stage 3 cirrhosis, including:

pale and/or yellowish skin

weight loss and loss of appetite

shortness of breath

extreme fatigue

persistent, widespread itchiness

swelling of the feet, ankles and lower legs

wasting of the muscles of the arms and legs,

Stage 4 Cirrhosis The defining feature of stage 4 is gastrointestinal bleeding, usually from ruptured varices in the esophagus or stomach but also Signs and symptoms that might develop include those that may occur with stage 3 cirrhosis as well as others, such as:

confusion, personality changes and/or extreme sleepiness

hand tremors

reduced urination, which may indicate kidney failure

high fever, signalling infection of the abdominal cavity.

🤠DLD TX

[Hidden]

That explains a lot to me, thank you very much. I wish you well in your journey and send good thoughts your way. 🌻