misdiagnosed cirrhosis?

[juneblue]

I was diagnosed with cirrhosis approximately a year ago. Had all the classic symptoms with ascites being the worst. Every time the gastroenterologist sent me for an MRI, the ascites has interfered with the test. He reluctantly gave me a diagnosis of cirrhosis when pushed but didn’t seem confident. Been feeling good for about 8 months. Mild ascites ie maintaining current weight. Exercising , eating relatively healthy and haven’t drink in about a year. Still using diuretics. Blood work looks relatively good. Hopefully this thing is turning around. God Bless all of you. Happy holidays to all.

[larkat99]

I believe there are only 2 ways to get ascites is alcoholic hepatitis or cirrhosis. Ask your doctor. I had alcoholic hepatitis and that is what the hepatologist told me. Ask your doctor regarding this.

[juneblue in reply to larkat99]

Thanks for the info. How is your ascites and overall health now?

[larkat99 in reply to juneblue]

My health is good. Normal blood results, and no symptoms. It's a matter of figuring out if I have cirrhosis or not. FibroScan shows on the cusp of F1/F2, ultrasound shows beginning of F3, numerous CT scan shows normal liver and one CT shows very midly nodular contour surface. So, another ultrasound in January. Depends on those results, biopsy after that.

[Pete728]

Hi, this seems very similar to me...I was getting high blood numbers for a number of months, due to drinking 2x bottles of vodka constantly daily. Eventually had a biopsy and was told there was very slight scaring around 11 months ago which looks like it has developed into cirrhosis unfortunately, I stopped drinking immediately after a 2 week stay in detox place in nottingham, sorted my diet out a bit, exercise when I can but mostly just walking. Fast forward to 6th nov with the 6 month chat with consultant, and she said all your bloods are coming back fine, the 2nd biopsy in August was showing again still very faint scaring that she said leads to cirrhosis. She also said, they couldn't have caught it any earlier etc... I asked her...so this means it's not cirrhosis? And luckily I stopped when I did? She said, maybe? But we will just keep treating you as a cirrhosis patient to be on the safe side but you should be fine. I just think it's so wrong that they can lie to you and also make out it's the end of the world. And all this about it can't be reversed! It can be reversed, I've seen many stories, just like loads of people on here. Don't get me wrong, it's not easy, something that happens every day but please stop the lies

[Confused2024 in reply to Pete728]

Thanks and sorry in advance for the long post but I want to give as much info in case anyone else has the same and can shed some light...Pete and juneblue - looking for advice myself as I have just been diagnosed by my GP (family Doctor in Canada) with cirrhosis but the thing is I have ascites which was what brought me in but I have NOTHING else...feel totally fine. I drank more than I should but was still functioning and a working professional, I am a runner and eat pretty well and always have.

Pete - did you have ascites as well? I also have the nodular contour but my Fibroscan tells me I am 9.0 kPa and 1.76 m/s. If I had ascites from cirrhosis would my fibroscan not be much higher? My ultrasounds have all said things like nodular contour (from Jul/Aug when I just quit drinking) but my one Oct 30th with Elastology Nov 1st did not say nodular contour?? I don't think that can go away can it?

Below are the findings from the radiologist on my scan in the summer when this was new and the one on Nov 1st - still only 3.5 months from my first to give you some more info.

The HCC scan (because my Dr sent me for one as soon as she suspected cirrhosis) showed this under liver findings:

HCC Scan - Aug 3rd -(3 weeks after ceasing alcohol)

Findings:

The liver parenchyma is mildly heterogeneous throughout but grossly normal in

echogenicity. There is no focal parenchymal lesion. The liver capsule is nodular. There is

no dilatation of the biliary tract. Doppler evaluation shows normal directional flow in the

portal and hepatic veins. There are no abnormal velocities nor is there spectral broadening.

The common hepatic artery proximally shows antegrade low resistance flow.

This was my most recent one...on Nov 1st 2023:

FINDINGS

Liver: Hyperechoic liver fairly homogeneous, although there is mild contour irregularity at the subcapsular areas of the liver which could be in keeping with underlying chronic hepatopathy such as early cirrhotic/fibrotic change. Measures 15.3 cm in sagittal dimension. Normal echogenicity.

Median Elasticity: 9.0 kPa

IQR/Median: 13%

Median Speed: 1.73 m/s

IMPRESSION

Hyperechoic liver in keeping with steatosis, although there is minimal irregularity of the liver contours today and as seen on the previous study dated October 30, 2023. Allowing for this, underlying early cirrhotic change would not be excluded

[Greengal314 in reply to Confused2024]

Hi Confused. Sounds similar to my ultrasounds. Slightly heterogenous. Mildly increased echogenicity. Nodular surface. No lesions. Normal spleen and blood flow. I had ascites once which was drained and has not come back (thank god).

From what was told to me, it is a description for mild or early cirrhosis.

Hope it is “early” enough, such that it can be reversed more. I’m trying my best ! If it doesn’t get completely back to normal, I was told I should liver a normal life as long as I keep doing what I’m doing. Avoid alcohol. Low sodium. Exercise.

I look at the hcc screening/monitor via ultrasound similar to monitoring for cervical cancer for women positive for HPV. Puts us at a higher cancer risk, although from alcohol is not as high a risk as for viral hepatitis/cirrhosis.

I hope this helps puts your mind at ease and into perspective.

[Confused2024 in reply to Greengal314]

Did the nodular surface go away? I am not sure it can but curious as my summer ultrasounds said nodular contour but the one I had Oct 30 with the elastology on Nov 1 did not mention a nodular contour?

You have never been given a fibroscan...how do they know things are improving just the ultrasound?

[Greengal314 in reply to Confused2024]

Hey confused,

no, slightly nodular and just different adjectives describing mild cirrhosis. 😂 I think the Riddler is reading my ultrasounds. 😂

I don’t know how the elastography is different from a regular ultrasound. Maybe it focuses on numerical stiffness measurements rather than description? I guess a scar can be in some areas and not others maybe.? (I don’t know 🤷‍♀️)

I had a regular Doppler twice, and also a combo vascular one that measured/evaluated the blood flow I’ve only had 2 ultrasounds total since I saw the hepatologist.

My situation, as told involves 1) preventing any portal hypertension and 2) monitoring any early signs for potential cancer. My bloodwork is all normal except my platelets 130’s-140’s.

I guess the progress of the condition is monitored by the bloodwork and scans. Unless my platelets go way above 150 or they lose the nodular/slightly heterogeneous words, I doubt they will recommend a fibroscan.

Take care.

[Confused2024 in reply to Greengal314]

My ultrasound in 2020 which my Dr did not share with meand 2021 both said fatty liver and one said heterogonous back then but that can be the fatty liver from what I understand.