*Update: Based on some of the replies, I've added a few photos to helps illustrate where I'm experiencing localized discomfort (the images are not of me, specifically).
Hello, everyone.
I'm looking forward to meeting some of you and – just maybe – getting closer to a diagnosis. I've made a series of posts on the British Liver Trust community but wanted to broaden my search a little bit.
So, at the risk of sharing too much detail, here's my story (apologies for the long post).
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First, a bit about me. I'm a 32 year-old male, 5' 7", 141 lbs. I don't use any prescription or recreational drugs (except for alcohol) and have no pre-existing medical conditions. Lastly, I work a desk job, I'm a vegetarian, I do high-intensity exercise two days a week, and practice sitting meditation for twenty minutes a day.
Truthfully, my only vice has been beer. For a few years, I was a beer while making dinner, a beer with dinner, and a beer after dinner sort of guy. However, I have been abstinent for three months now.
Now for the medical business – back in July of 2019, I started experiencing mild discomfort in right side. I've described it as beginning just to the right of the center of my chest, wrapping around my right floating ribs, and extending to the middle of my back. To be clear, the pain has never been debilitating – maybe a two on a scale of ten.
Thanks to Dr. Google, I thought I had liver disease – especially because, at the time, I was a drinker.
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Since then, here's the journey that I've been on:
– JULY, 2019 –
1. Normal blood test (comprehensive metabolic panel and complete blood count)
– OCTOBER 2019 –
1. An “unremarkable” multi-planar ultrasound.
2. Officially stopped drinking.
– NOVEMBER 2019 –
1. Experienced a panic attack and checked myself into the ER.
2. An “unremarkable” CT scan with contrast.
3. Normal blood test (comprehensive metabolic panel and complete blood count)
– DECEMBER 2019 –
1. A normal upper endoscopy with biopsy (testing negative for helicobacter pylori bacteria).
– JANUARY 2020 –
1. A normal HIDA scan.
2. And a negative MRI.
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Likewise, since all this began several months ago, I've also made the following observations:
1. I kept a food log for three months and was unable to identify any triggers e.g. fatty foods, alcohol, etc.
2. The discomfort is particularly noticeable while sitting for long periods of time e.g. in the car, at the movies, during sitting mediation, etc.
3. Likewise, the pain intensifies if I'm frequently bending over during housework or lifting my 3 year-old daughter.
4. And the sensation gets worse in the evenings and can sometimes be described as a numb spot in the middle of my back.
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With all that history out of the way, here's where I am today. Both my family doctor and gastroenterologist are out of ideas. So, the leading theory from my doctor of physical medicine is the pain may be a result of a case of shingles I had in 2016. In fact, he prescribed Gabapentin for a few weeks to see if things improved. Which I think they did but, truthfully, I'm not totally sure.
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So, my specific questions for the community are:
1. For those who have NAFLD or NASH, what tests or tests ultimately confirmed the diagnosis?
2. Based on my history and tests, is it worth getting a FibroScan or liver biopsy?
3. Can someone, in simple terms, explain the difference between simple fatty liver, NAFLD, and NASH? Part of what's made this whole process frustrating is the idea that it could be “nothing” or “life-threatening”.
Thanks in advance!
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Well I would start with an ast and alt blood tests. From there have a fibrosure blood test and a fibroscan ultrasound. If those show high numbers and a stiff liver, you could then get a biopsy for ultimate answer on your livers condition. But start with ast and alt.
Later they can do a color doppler ultrasound to see if bile ducts are affected.
Baby steps for now and dont panic.
I have NASH with f3 fibrosis and some cirrhosis. I am seeing a specialist at a local hospital, Lahey Clinic, for follow up. Ih, you might want a hep c, a, and b test. My Nash was brought on from hep c. I treated with Harvoni. I was cured of the hep c but have had damage from the Harvoni and continuing liver issues. If they find hep c, you need to know what version it is, so to speak.
So ast & alt, plus hepatitis blood tests. And go from there.
Good luck and I wouldn't worry too much at this point.
Thank you for the advice, Moonsts. Duly noted on the not panicking.
I should clarify, I have had my AST and ALT tested. I understand that it's preferred we don't share test results, but for the sake of the conversation, here are the outcomes of my last two blood tests:
Jul '19 – AST: 13, ALT: 11
Nov '19 – AST: 19, ALT: 17
So, there was a small increase over the course of three months but both are well within the normal range (I believe 0-40 U/L is considered normal).
Ultimately, between the two normal blood panels and the series of negative scans (ultrasound, CT scan, MRI, and HIDA), my doctor simply doesn't see any reason to move forward with a FibroScan (he and I have never talked about a FirboSure test). Likewise, I have not been tested for hepatitis simply because it has not come up in conversation.
You mentioned that you have NASH with F3 fibrosis and some cirrhosis. What test – or series of tests – ultimately lead to your diagnosis? In other words, did you have elevated enzymes that warranted a scan? And, if so, what scan confirmed your illness?
A lot of people arrive at cirrhosis without ever having an abnormal liver panel since that measures acute or rapid cell death. A slow process doesn't drive blood chemistry up very much. Fibrosure can indicate if you warrant more advanced testing. That test in combination with FibroScan rivals biopsy for diagnosis. I prefer FibroScan because it is a mechanical measurement of stiffness.
Yes, I've heard this before. Specifically, that people who have confirmed cirrhosis can regularly have normal blood tests. However, my doctor said that, with all my scans, it's unlikely that I have cirrhosis.
So, as it relates to NALFD and NASH, would either of those conditions result in elevated enzymes?
I feel like I may be splitting hairs but, in this case, I believe specificity matters.
People don't think of it this way but those are both just phases of fatty liver disease. NAFLD is the early period where fat is being deposited in the cells. When damage starts to cause inflammation, cell death, and scar formation they call it NASH. Liver enzymes are usually normal with NAFLD and may remain normal with NASH depending on how intense the inflammation and cell death occur. The scans you had would have indicated F4 NASH, also called cirrhosis, but aren't very good at detecting asymptomatic advancing fibrosis, hence the suggestion to get a Fibroscan.
I tested positive for hepc. My alt and ast was very high. I was sent to my gastroenterologists office and met with that no I mentioned. I was given color doppler ultrasound and a liver biopsy. I was f2 at that time with nash.
I took the Harvoni and cleared the hep c.
But since then, I've felt sicker. My liver has worsened into f3 and I read the results on an mri for a different thing that stated mild cirrhosis was visualized.
That's when i realized i truly was not well.
Initially i had more right upper quadrant pain. Now it is only a little achy at times.
I had extensive blood tests including fibrosure and two fibroscan. They showed a higher degree of liver stiffness and more scarring.
Get a FibroScan to see if you have significant liver fibrosis. Your other testing won't show that and that often leads to right upper quadrant pain. FibroScan isn't perfect but is the next, cheapest test.
NAFLD means there is an abnormal amount of fat in the liver. It becomes NASH when liver cells start to die at an abnormal rate so that scar tissue begins to form.
It isn't typical but thin active people can have fibrosis for a variety of reasons and it is often overlooked by docs. Alcohol is a primary driver but can also aggravate other scar forming processes.
The boring version of story is, my doctor is unwilling to order a FibroScan because all my other tests and scans are clear. On a certain level, I can empathize with him – there's simply nothing, aside from unexplained right upper quadrant discomfort, that would warrant a FibroScan – I have no other symptoms.
I do have the option of having the scan done at a private practice but I just wanted to see if there was anyone else that had similar blood, ultrasound, CT scan, and MRI results but still wound up having a FibroScan done. And, if so, what was their outcome.
All that said, I understand that everyone's unique. So, it's just as likely that I'm asking the wrong question.
I personally never had an abnormal blood test or symptom until I had cirrhosis. I had a FibroScan reading of 21.5 at diagnosis and 14 is typically considered to be cirrhosis. We don't believe in waiting until real symptoms appear to get liver specific testing. Just as a side note, ultrasound can't detect liver fat below about 30% fat. CT and MRI aren't a lot better as they don't measure liver stiffness. They can detect cirrhotic damage but that is too late in the process. Most docs were trained that fat is benign and don't look for early stage fibrosis because it is hard to determine. Here is a bit of history that might be of interest.
At the risk of oversimplifying things, it sounds like most tests are unable to diagnose the early stages of liver disease. In other words, blood tests, ultrasound, CT scan, and MRI typically only confirm the disease in its later stages e.g. NASH and cirrhosis.
Which may explain why a liver biopsy has been described as the “gold standard” as it relates to diagnosing liver disease – but is that at all stages?
Ultimately, I guess my burning question is – can a FibroScan diagnose simple fatty liver or NAFLD? Or is it just another test that, if there are any red flags, will simply lead to a biopsy anyway?
depends on the doc. Some will diagnose without biopsy but some want it. A hepatologist is the best bet for getting a diagnosis as the other docs don't have the training. Nothing is really good at early stage fibrosis but FibroScan is your best guide but it has a wide margin for error at F1 and F2. Pretty good for more advanced cases. There are some blood calculators that help some people but may not apply to you but here is a link
The impression that I'm getting after all this research is, basically, there's a variety of tests that might indicate (but not confirm) the early stages of liver disease.
Nonetheless, I appreciate the insight. After some time, I may look into scheduling an appointment with a hepatologist who, if they're not satisfied with my current results, will be more likely to recommend additional testing (e.g. blood tests for hepatitis, FibroScan, FibroSure, etc.)
Lastly, thank you for the additional links. I understand that these sort of calculators are pretty limited but, for what it's worth, I scored -4.27 points (Correlated Fibrosis Severity: F0-F2). Obviously, it's no replacement for a physician but it is reassuring.
I wound up getting an order for a FibroScan from my gastroenterologist after all.
Again, I know there's some trepidation about sharing specific test results in the community but I think it's very relevant to the conversation – these were the readings:
kPa: 4.3
CAP: 172
My understanding is that, generally speaking, these are very good results. In other words, the average normal kPa score is around 5.3 and, as it relates to the CAP measurement, anything below 238 is considered S0 (no steatosis). Likewise, while I don’t totally understand what was meant by it, I was told that the readings were accurate to the degree of 33% – which is also ideal.
So, I believe that my mind is officially at ease.
Regardless, as embarrassing as it can be, this whole experience has been a wake up call and I will continue to take a more sincere approach to my health – both mentally and physically.
Duly noted on the blood tests. I will mention it during my next visit.
However, I can confirm that I have never had a blood transfusion, I do not have any tattoos, I've never used intravenous drugs, I've never had unprotected sex with anyone other than my wife, nor have I ever come into contact with blood “on the job”.
Like you said, it can't hurt. But, based on my history, my guess is that I would test negative for hepatitis A, B, and C.
Hello,, have you ever been told you have NAFLD or Nash? I’m not a doctor but I am a Nurse it sounds like muscle skeletal issues or maybe possible abdominal hernia.? I think Nash makes you liver enlarged and inflamed with stages of fibrosis which can lead too cirrhosis. Fatty liver can be reversed don’t let doctors tell you different I even heard Nash can get better also. Read the book skinny liver book it’s a great resource for diet changes. Don’t do liver biopsy I heard it’s not that accurate because it only samples a small section of liver. I was told In October 2019 that I have hepatomegaly with fibrosis with suspected cirrhosis according to CT with contrast. I was having CT to rule out kidney stone, no stone but possible cirrhosis I freaked out. I went to my regular doctor sent me every blood test you can think . Fibrosure test came back normal with no fibrosis or inflammation no hep a b or c, I never had elevated liver enzymes either. I feel fine last week went to ED for kidney stone Ct with no contrast said liver wasn’t enlarged. I’m going for ultrasound in April. Dec. 2019 started whole plant based diet with no diary or meat, no white flour and no sugar lost 17 pounds.
It's very dangerous to say not to do a biopsy. You are right though, that they may not get a sample from the right area. But never discount it. In fact it might be a requirement to get on certain drugs.
No, I have not been previously diagnosed with either NAFLD or NASH. Like you mentioned, the leading theory is that may pain is either musculoskeletal or nerve-related – which, dare I say, would be preferred over liver disease.
I apologize if I'm not following your story. So, you were told you have an enlarged liver with fibrosis via a CT scan but that diagnosis was not corroborated by the FibroSure test? So, in your doctor's opinion did you or did you not have liver disease?
At the end of the day, I believe that the “hit or miss” nature of all these tests is what's frustrating to most patients.
You really don't sound like you have NASH to me. Do you get flu like systems? Do you itch? Do you have stabbing pains in your side? To you feel your liver pushing up into your rib cage? Do you have acid reflux? I'm at stage 4 liver fibroses, with cirrhosis. They say I am stable at the moment, but that can change. The worst thing you can do is eat Beef. If you eat beef and are extremely tired and you can feel it trying to digest and then you get flu like systems. I'd say you have Nash, but if you eat beef and your fine.. Then you only at the fatty liver stage.
I can confidently say that I do not have the following symptoms: no flu-like feeling, no itching, and no acid reflux.
However, the only thing I'm experiencing is, what I've been describing as, a dull pain that typically localizes in four areas – about an inch to the right of the bottom of my sternum, about an inch to the right of my navel, in between my right floating ribs, and between my spine and the bottom of my right shoulder blade (I've included a few pictures to help illustrate).
Likewise, after slowly removing and adding things back into my diet, I have not been able to identify a specific food trigger. Lastly, I'm a vegetarian and can't remember the last time I had beef.
Do you still have your gallbladder? Mine was hard to diagnosis. It was diseased and flaking. It did not have stones like most. I was much better after it was removed many years ago about your age.
You sound very concerned and convinced that you have liver disease despite nothing abnormal showing up on your test results.
That is not to say you don’t have liver disease, however, other things could be causing your symptoms.
I am thinking along the lines of Bowel or muscle spasm , both very painful.
May I suggest a good physiotherapist assessment (not massage therapist) and perhaps talk to your doctor about antispasmodic medication.
The more worried you become, the more stressed your body will be.
There are very few proven medical treatments for non alcoholic liver disease (NAFLD) or non alcoholic steatosis hepatitis (NASH) however, both are reversible with diet and exercise, which you seem to have a grip on.
Admittedly, until recently, I have been worrying a lot. Needless to say, Dr. Google is not always helpful (specifically for my mental health). Nonetheless, I'm beginning to believe that my symptoms are not liver-related.
Likewise, I'm not totally convinced that it could be bowel or muscle spasms. While I appreciate the hypothesis, I don't think I have a lot of the symptoms – for example, my right upper quadrant is not “very painful”, I haven't had any indigestion, and I have not been able identify any food triggers. That said, I don't know if that's what you were getting at.
But, ultimately, you are right about taking care of myself and reducing stress are the best things I can do, right now. Likewise, a physiotherapist might be a good idea in the future.
The physio suggestion for me would be the next step to rule out some muscle spasms or a lazy diaphragm. All entirely treatable without medication.
Bowel spasms don’t tend to cause indigestion especially if located in the colon (large Bowel) and don’t necessarily need to be food related. Spasms of the small and large intestine can be triggered by many things including stress.
If your symptoms do not cause you distress with regards to the sensation of pain, why are you so worried?
Your self description is of a young healthy male, perhaps you could reassess your situation in a more holistic approach. Taking into consideration how you feel at home, in the workplace and socially. Ask yourself if you are happy, if the answer is no, reconsider your self diagnosis and speak to your doctor again.
Whatever the cause of your symptoms, I wish you well and hope you return to full health soon.
Duly noted. I think I misunderstood what you meant by bowel spasms in your original reply. But I think I understand now.
For the record, I am experiencing some discomfort. But like I said before, the pain has never been debilitating – maybe a two on a scale of ten. I think the concern was fueled by the fact that, when you Google “right upper quadrant pain” (and all its permutations), you're met with some pretty scary results.
Likewise, I think the situation is exacerbated when – even with plenty of good news and negative tests results – you don't have a satisfactory diagnosis. In other words, when physicians are unable to provide answers, your mind can wonder to some pretty dark and far-flung places.
I just replied to an earlier comment with some more optimistic test results and believe I'm ready to learn from this experience and move on.
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