I am new and going to ask for some advice. I have seen a hepatologist and he has told me according to bloodwork my GP ran and CT scan that was taken for adrenal issues that he doesn't see any liver disease. I have been a extreme alcoholic for 30 years. I have what it feels like to be HE, bloating, fatigue, itching. I cannot work because of symptoms. My question is the ct scan was done for adrenal but he showed me my liver and said it was smooth and he didn't see anything. I told him how sick I was and asked if we could do further tests, he told me no reason to. I am now going back to GP because of bloating. I feel so frustrated because I have been trying to get a diagnosis for almost a year. Why wouldn't he at least do a fibroscan just to rule it out. I am starting over again with an ultrasound to look for ascites as I feel uncomfortably bloated. Any advice would be appreciated. Im in the U.S.
Thanks,
Buffy
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buffy154
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Dr. Melissa Palmer's Guide To Hepatitis and Liver Disease:
"It is very important to understand that the liver is a master of camouflage. Even people with severe liver disease and cirrhosis may have normal imaging studies. This is a key point to remember, and it bears repeating. Sonograms, CT scans, and MRIs can look totally normal at any stage of liver disease. That is why doctors have come to rely on the liver biopsy as the gold standard for evaluating liver disease."
The hepatologist you saw who says there’s no need for further investigation doesn’t have X-ray vision & shouldn’t assume that there’s nothing wrong with your liver on the basis of a CT scan done to check your adrenals. You should get a second opinion.
With your history of 30 years of very heavy drinking & symptoms of possible liver damage a FibroScan should be done to check for fibrosis which won’t necessarily show up on an ultrasound or CT scan. After 30 years of very heavy drinking there’s a chance that your liver has a significant amount of fibrosis or may even be cirrhotic but still has enough function left to compensate & produce normal or near normal blood test results.
I’m lucky that in Australia where I live all GPs can refer patients for ultrasounds & FibroScans & they are paid for by Medicare with the patient paying nothing. The system in the US is different but it shouldn’t preclude a patient being given sufficient tests to eliminate the possibility of liver damage causing your symptoms.
Thank you for the info. I begged this hepatologist to do further testing. The problem is there's only one hospital where I live that has hepatologists. I see my GP Monday and I'm thinking of asking him if he will send me for a MRI. My hepatogists nurse told me to get an ultrasound from my gp if I think theres fluid built up. She was so rude. If it shows on ultrasound, then they will see me again. I wanted to complain, but I don't want to alienate. I cry everyday.
Ask your GP to send you for an ultrasound & a FibroScan on the basis of your history of long term heavy drinking & recent possible symptoms of liver damage. An MRI is a more expensive procedure than an ultrasound & FibroScan involving injecting a radioactive substance into a vein & seeing what it reveals about your liver after putting you into a high tech tunnel shaped machine that scans your liver. An MRI would detect things like fatty liver & cancers but a FibroScan which measures liver stiffness would reveal the degree of any scarring on your liver from your drinking. I'd want to know that if I had a history of heavy alcohol use like you & was experiencing the symptoms you mentioned.
If the FibroScan confirms that your liver is in good shape then it will put your mind at ease. If it shows that your liver is damaged then you'll need to take care of it to prevent it getting any worse. Peace of mind when a person is worried about liver damage & has a history of heavy drinking & symptoms like yours is in my view sufficient reason to get an ultrasound & FibroScan.
I'm having an MRI on my liver next week after my hepatologist recently sent me off for a second FibroScan & ultrasound after he saw all of the abnormal values in blood tests I've had over the last 7 years which I'd scanned into my computer & showed him. I appear to have been lucky in that my problem with my liver was simple hepatitis from taking too many painkillers.
The hepatologist took one look at my blood test results over the last 7 years & said 'you did the right thing stopping painkillers when you did'. The GP I saw when I felt sick with hepatitis ignored my symptoms & told me there was nothing wrong with my liver & that she wasn't prepared to refer me to a specialist. I had the sense to trust what my body was telling me & find a GP who sent me to hepatologist who had no problem sending me off for two ultrasounds & FibroScans 9 months apart & an MRI. He also said that he might have to do a biopsy if I continue to have abnormal blood tests & feel poorly but I'm confident that won't be necessary.
The hepatologist suggested that I get an ultrasound & FibroScan once a year to make sure my liver remains in good shape! It makes me glad I live in a country with a good public healthcare system where the quality of healthcare isn't dependent on how wealthy you are.
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Hi Edward
I have never had a nuclear substance injected for my MRI scans during my long history of cirrhosis...NHS website says “Some MRI scans involve having an injection of contrast dye.” Maybe you are a special case?
I wish I could feel “confident” that I won’t need certain procedures! I find it difficult to be confident about any medical issue I have!!
Miles
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Thanks for the information. I'm going to make an appointment for an MRI next week so I looked up the procedure on the internet & I read about the type of MRI using the contrast dye & I wrongly assumed that they all involved the dye. I'd much rather just have the MRI machine check my liver without the dye. I'm satisfied that my liver is okay but when the gastroenterologist suggested that I have an MRI I thought I may as well get one to see what it says.
My liver problems turned out to be simple hepatitis from overuse of painkillers. The hepatitis had been gradually creeping up on me for years & it became really bad to the point where I felt very sick about 16 months ago. In the last 16 months I've had 6 blood tests & the first 5 had various abnormal values the most important ones being a persistently raised ALT & a low platelet count that fluctuated markedly from one test to the next (which the gastroenterologist said was highly unusual). Everything finally came back into the normal range at my last blood test a couple of weeks ago. It took 16 months of living clean & experimenting with diet & exercise before my liver came good.
The liver is amazingly resilient. After 30 years of continually taking painkillers, drinking alcohol in moderation, taking a cocktail of vitamins, energy drinks & caffeine pills, tests have confirmed that structurally my liver is relatively undamaged. My liver is normal in size & smooth & two FibroScans produced exactly the same result of 4.3 which means there is no significant fibrosis.
Now the only drug I take is coffee which benefits the liver when drunk in moderation. I still have pruritus which suggests that my liver isn't 100% healed. The hair that fell out when the hepatitis was really bad doesn't appear to have all grown back & my libido is almost non-existent but I'm 66 years old & it could just be aging.
I feel very sorry for people with cirrhosis. The bout of hepatitis I suffered shook me to the core. I value my health a lot more now.
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Thx for that Edward. I’m only 64 hahahaha!
Simple hepatitis- isn’t that undersated 😁
All the best and continuing good health!
Miles
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Hi buffy154,
We are in the US, too. I don't think doing fibroscans is as common here as may be in other countries.
My husband's liver doctor said alcohol based cirrhosis is less common than people think. One of my Aunts was an alcoholic and never developed liver disease - so maybe your blood work is good and not showing signs of cirrhosis at this time.
Since you are going to see your GP and have an ultrasound soon it might help to get a notebook and write down any questions you have and ask if these symptoms might have other causes.
Best wishes,
Mary
Hi buffy from across the pond 😁
I had a liver problem that couldn’t be bottomed out despite several Ultra Sound scans. (I have told the following before so apologies to those who’ve been here before 😁). Fortunately my “new consultant” insisted they look for a thrombosis in the portal vein. (This during my last hospitalisation due to HE hepatic encephalopathy). Sent for Ultra Scan. The operator and her senior person, who she called, said they couldn’t get a clear view of the whole portal vein. Back in ward, the round doctor said I could go home because the US Scan didn’t show a thrombosis! I challenged him, much to his disgust, and told him what the US scan operator had said... two days later (still in hospital 😁) I was sent for MRI scan. And guess what - they found a thrombosis. Ever since I have been slightly wary about US Scan tests - but that’s just me 😁
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