What to do next?: I have all the... - British Liver Trust

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What to do next?

buffy154 profile image

I have all the clinical signs of liver disease, however my bloodwork comes back normal. I had another ultrasound and that came back normal. I have itching, feel bloated and am constantly dizzy and have no appetite. I believe that I have HE. I have no appetite. My hepatologist looked at basic bloodwork and cat scan and says nothing is wrong. I cant work because I feel like I have the flu. nausea and malaise. I asked for further tests and he will not do them because nothing shows at all in bloodwork, This has been going on for a year. I had another ultrasound and it said all normal yesterday. Cold sweats and confusion. One Dr. diagnosed me with depression so I think that's what dr.s see and they say mental health. I have a long history of alcohol abuse. I am at a loss. Hopeless. I thought that the hepatologist would have done additional bloodwork. Does anyone know what further bloodtests they do besides standard liver panel. Tnank you!

30 Replies

I think you should be happy you don't have liver disease. Dont drink eat somewhat healthy and enjoy your life doctors know what to look for sometimes we have to trust them. You may have other issues going on if you have recently quit drinking your body might still be adjusting I know I felt worse for months befor I got better physically and emotionally.

Good luck

Boone

buffy154 profile image
buffy154 in reply to

Thanks for the reply. It's been over a year that I stopped drinking. I have heard and have read that your bloodwork and imaging can read as normal. I have been nauseas and have had no appetite for a year. I cannot work and spend my days in bed because of symptoms. I am housebound and was looking for this hepatologist to investigate further than what a GP can do. He looked at tests done by my regular doctor. Given the fact of drinking heavily for over 30 years and symptoms I was looking for tests like GGT I think its called. I have asked for his help and waited a long time for an appointment. He spent ten minutes looking at my GP's bloodwork and suggested diet changes. I am at a loss why he wont at least do another level of bloodwork. I just keep getting sicker. I guess I just wait until I end up going into the hospital. My whole body feels sick and different. I even smell differently in the past month. When people describe HE with dizziness and confusion, its another reason I don't go anywhere. I often walk around a parking lot looking for my car for ten minutes when I do decide to drive which isn't often. Just frustrated after a year. If they are so sure I don't have liver disease than do a fibroscan or biopsy. I know biosopy is painful but I'm not really living anyway. Sorry for the long reply.

The "Enhanced Liver Fibrosis" blood panel (ELF) might be something to look at.

"The Enhanced Liver Fibrosis (ELF) score is an ECM marker set consisting of tissue inhibitor of metalloproteinases 1 (TIMP-1), amino-terminal propeptide of type III procollagen (PIIINP) and hyaluronic acid (HA) showing good correlations with fibrosis stages in chronic liver disease."

In the United States, we have ASH Fibrosure (aka Fibrotest), which is a different test which does basically the same thing.

"FibroTest, known as FibroSure in the US, is a biomarker test that uses the results of six blood serum tests to generate a score that is correlated with the degree of liver damage in people with a variety of liver diseases. FibroTest has the same prognostic value as a liver biopsy."

Fibroscan, an enhanced ultrasound would also be good. ARFI is a similar diagnostic frequently used in Asia. Fibroscan is more common in USA & UK/Europe.

All four of these appear to provide similar accuracy.

You may have to go private for these tests. My ASH Fibrosure ran around $305 (American)

buffy154 profile image
buffy154 in reply to

Thank you! I am in the US and I thought there was a more advanced bloodwork Where did you go privately for these tests?

in reply to buffy154

I had a good experience with True Health Labs. If you google ASH Fibrosure, the True Health site usually shows up on the first page. Their list price is $339, but if you look at the top of the page, there is a "Fall Discount" code for 15% off which brings the price down close to $300.

I printed out the lab order that night and got my blood drawn the next day. Results came back within a week, & I got good news!

Be sure and notice the "Important Note" in red font... (In the "order instructions" area of checkout, please provide us with your height and weight.). The algorithm used requires height & weight, so don't miss this! I had the lab tech add my height & weight to the paper requisition when he drew my blood too.

P.S. You need to be near a "LabCorp" testing facility in order to get the draw done. The LabCorp site has a location finder that is easy to use.

The test is also NOT available in NY, NJ, MA, MD, RI due to the laws there.

buffy154 profile image
buffy154 in reply to

I'm in NY. It seems like I should be able to have my hepatologist just order this. I have a diagnosis of depression so I think he sees that and figures that is the reason I don't feel well. He sees the normal GP basic bloodwork and uses that as diagnosis.

I wish there was a private hepatologist I could go to.

in reply to buffy154

Don't know if you're going to be doing any travelling for the (remaining) holidays, but if you're going out of state (to an area where it's legal), you could use your friend/relative's address & get drawn while you're there.

You download the result on your computer, so you could legally do this back home the following week. Don't know if your credit card info would flag your address, but you might get some help from an out of state friend or relative.

Just because you have a long history of heavy drinking doesn't mean that you have alcoholic liver disease. Only a quarter of alcoholics get alcoholic liver disease which means that three quarters of alcoholics avoid it & only 10 to 15 percent of alcoholics are found to have cirrhosis during autopsy. When I felt sick from hepatitis (caused mainly from overuse of painkillers) I spent a lot of time imagining that every time I felt a little off-colour it was due to my liver. I've stopped doing that now.

In your case a FibroScan would probably have been worth doing to measure liver stiffness & scarring but if a doctor won't refer you for one then your only remaining option is to have one done privately. I believe that FibroScans are worth doing to put people like yourself who are worried that they may have liver disease due to a history of heavy drinking, at ease. In Australia where I live any GP can send you for an ultrasound & FibroScan paid for by Medicare & most GPs would do it for someone like you with your history of heavy drinking.

A neighbour in the apartment complex I live in had a FibroScan done six months ago. The man weighs about 140 kg & he is trying to get himself medically retired. Despite his enormous weight & huge belly his FibroScan result was good because he's never been a drinker or taken drugs. Apparently he doesn't even have fatty liver. By the look of him he won't last many more years though because of the strain his enormous weight is placing on his body however his liver is healthy.

In your situation the logical thing to do is never drink alcohol again & stop worrying that every off-colour feeling is a sign of liver disease. I continue to be reminded of the problems that my overuse of painkillers caused by the pruritus that I’ve had for at least 20 years and which may never go away however if I feel a little off-colour I no longer automatically think it might be my liver. In your case if you avoid alcohol, exercise regularly (walking is a good one to start with) & eat a healthy diet then any liver damage from your long history of drinking is likely to fix itself. Imagining the worst isn’t helpful so why not focus on lifestyle changes to improve your health?

Thank you for responding to me. I think you responded to me before and quoted Dr. Melissa Palmer about the livers ability to camoflage and appear normal even if severely damaged. I haven't drank alcohol in over a year. I am at the point where I have continuous nausea. I have no appetite. I feel continuously dizzy. I spend the day in bed and get up to eat a small meal and go to Drs appts. The impairment of simple things like memory and talking. Bloating and feeling like I have the flu. A person responding said Enhanced Liver Fibrosis blood tests, that's what I thought a hepatologist would order since I have clinical symptoms and past history. I would have thought that he would of least ordered that after I told him how sick I have been. Just frustrated because of nausea and what I believe to be HE. Dr. Palmer basically says more than once that blood tests and imaging can look normal and states that it bears repeating. I don't see anything in her book about the ELF tests or fibroscan, I know the book is older and was written a while ago. I just want to try and find help.

It's true that Dr Melissa Palmer did say in her book that the liver is a master of camouflage so despite your blood tests & CT scan indicating that your liver is okay there is a chance that your liver is damaged. The odds however (as I pointed out in my previous post) are strongly in your favour that you don't have alcoholic liver disease & so far the tests you've had suggest this to be the case.

I still sometimes wonder if I might have mild encephalopathy because my short term memory is poor. Also when I look for objects I sometimes miss them despite finding them later where I looked however I no longer imagine the worst. Instead I focus on exercising regularly, eating a healthy diet & not worrying too much. I'm retired & I have interests that keep me busy. I couldn't imagine anything worse than spending most of my time obsessing about my health.

There could be any number of reasons besides your liver for why you feel poorly. Are you neurotically obsessing about possible liver damage because of your long history of heavy drinking or is your liver damaged & causing you to feel poorly or are there other reasons for you feeling poorly? Because you drank heavily for so long and you've read many stories on this forum by people with severe liver problems are you wrongly assuming that your liver is causing your problems? When I got hepatitis I imagined that every time I felt poorly it was due to my liver but now if I feel poorly I remind myself that everyone my age has ups & downs.

Even if your liver is damaged the way of handling a damaged liver would be following a healthy lifestyle to help it heal so you may as well do that & see if your health improves as a result.

I am just so nauseous constantly and no appetite. Also, I am constantly dizzy and get irritated by little things. I cant concentrate, confused at times. Everything is such a chore. Also, I have to lie down after the smallest chores. I'm only 51. Bloated and extreme itching.

Whatever this is, it has taken over because I just stay home because I am too ill feeling like Im going to vomit and dizzy. I always have to sit down or lay down. All of the symptoms I have match up with liver disease. The thing that bothers me the most is the HE if that is what it is. Always lightheaded. I hope that I'm wrong that this is liver disease. Thank you for listening. Just looking for answers, its been a year. I have to live with my parents because of not being able to work.

By the sounds your having panic attacks, and suffer from anxiety, believe me from some one that has had a transplant, if the bloods and scans say your ok then be bloody happy, get on with your life and stop worrying.

buffy154 profile image
buffy154 in reply to

That's the thing, I am so nauseous and fatigued that I cant work. I cant go anywhere because of the feeling of dizziness. I have to think about taking a short trip to store instead of just going and getting it done. Its hard to explain the confusion I feel. I have seen and heard from people that their tests come back normal. Granted, I am depressed but am being treated for that. All I can tell you is that something is wrong and it is physical. When you have nausea and dizziness etc, it effects everything and life is spent trying to feel better so you can get on with it.

Worriesalot profile image
Worriesalot in reply to buffy154

Wonder if it’s Meniers? Excuse spelling, you have tinnitus too.

I have stage 4 cirrohsis my bloodwork was actually reading normal for a while, this can happen. Though it makes no sense.

buffy154 profile image
buffy154 in reply to Memoore686

Thank you for responding. I've heard that this can happen. I just don't know where to go because I was hoping hepatologist would help me by my symptoms. At least rule it out if he's so sure with these ELF tests or Fibroscan. How did they finally find out your diagnosis?

Thank you!

I have had normal bloodwork every time. I have had cirrhosis for several years. An endscopy and ct confirmed what dr suspected. That is one way to definitely say yes or no.

buffy154 profile image
buffy154 in reply to Mel2637

Did you have additional bloodwork ELF test? Thanks for responding!

Memoore686 profile image
Memoore686 in reply to buffy154

I had to have surgery on a hiatel hernia so i requested a liver biopsy, to my shock it came back stage 4 cirrohsis.

Memoore686 profile image
Memoore686 in reply to buffy154

Its been 3 years since and having lots of infections! I have been in ICU twice in last month, last one went septic shock. I thought that was the end of the line. It was a close one but i managed to pull through, scared me bad, very worried about next time as i know it will come again. Ugggg the horrors of this disease are insane.

buffy154 profile image
buffy154 in reply to Memoore686

Did you have symptoms so you requested a biopsy while they were doing surgery?

I believe I have HE because of chronic dizziness. I had Ultrasound and it was normal. My Gp says he highly doubts liver disease. Also. Hepatologist looked at GPs blood test and says no way. All of my symptoms lead me to liver. I am sorry you are suffering, Are you trying to get a transplant?

Memoore686 profile image
Memoore686 in reply to buffy154

Yes i had all the symtons you have decribed, funny thing is i had many ultrasounds and they showed nothing! What i have learned is the only true way to diagnose cirrohsis is by biopsy or fibroscan, ultrasound is only good for fatty liver, liver cancer, tumors and such.

I also get very dizzy and confused and blurred vision i know this if from H.E

Memoore686 profile image
Memoore686 in reply to buffy154

Im in the us too :) not sure if thats a good thing! Lol

I have asked for these tests from my hepatologist and he refuses because he looks at my GPs bloodwork. I don't know what to do.

I basically have begged him but I have a diagnosis of depression, so I think he sees that as why I have these symptoms.

I had ME and was so dizzy I couldn't walk by myself, I always had to link arms with someone. I just wanted to lie down and my head felt like it was full of cotton wool. An ME nurse came to see me and had me lie down with a book on my chest and watched me breathing. She then told me that I was hyperventilating which was causing the dizziness. I made a concerted effort to slow my breathing down and the dizziness was much less of a problem. My diagnosis was later changed to fibromyalgia which causes widespread pain, confusion, extreme fatigue and poor memory. It may be worth mentioning this to your doctor. From what you have said it sounds like health anxiety too. I struggle to do any exercise due to my fibromyalgia and other health conditions but I know that just lying in bed isn't good for you. It just gives you more time to worry about your health. Try to get out of the house for a short time every day, you could just walk round the block and maybe the fresh air will make you feel more alert. Take care. Deb

Thanks for responding. I get severe nausea. I try and do little things and get dizzy. When I go anywhere I feel like there is a haze surrounding everything, I have to really think about a trip around the corner. No appetite and bloating. I have to lay down to stop the dizziness. You feel off balance and like you have the flu. Within the last month my body has this fruity smell that even after taking a shower within 10 minutes it comes back. Extreme exhaustion. People within this group have said that only by having a biopsy is how they found out. Im just looking for my drs to do a fibroscan even. I was diagnosed with depression because of this so Dr.s think this is the reason. I wouldn't wish this on anyone.

After reading all your replies to the numerous posts, I have to believe the only way you are truly going to get a definitive answer with your symptoms is by getting a Fibroscan. You do not need a doctors referral to go and get one. Granted you will have to private pay for it if your insurance won’t cover it. I went two years ago to Los Angeles to have mine done and paid $300. I think in your situation it is worth it for you to put your mind at rest. If the results are not in your favor (which I would be shocked if it’s not favorable) then take that back to your GP or Hepatologist. My Fibroscan was 4.2kpa but my ultrasound did show a fatty liver. A fatty liver can present a lot of symptoms also or none. The thing with liver disease is that the symptoms can be all over the place from each person to the next...it’s really difficult to go by other people’s symotoms unless there are really big obvious ones such as jaundice or acities of the abdomen.

If you google places to have a Fibroscan you will find places in NY to go. I would do that and start making some calls on Monday. Then you will have your answer to what is causing all these symptoms.

Best of luck

Michelle

Thank you. The only place in my town is at the hospital where the hepatogist I saw runs the clinic. Since he runs the program he can most likely say according to my bloodwork I don't need it even if I pay privately. I'm not sure where I can go. You are so right about the symptoms. I have people on this forum that have told me they only found out this was biopsy, their bloodwork and imaging was normal. It really surprises me that this hepatologist did not listen to my clinical symptoms. he just looked at basic blood work my gp ran. He said theres no way by looking at bloodwork. I guess I just wait until something shows up until I can find a place that will do a fibroscan privately. I went to the hepatologist because I thought he would investigate because of the fact that tests can look normal and its not uncommon. Thanks again for the info.

Ask for ELF test.

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