No true diagnosis..but my symptoms may indicate alcoholic cirrhosis! Praying against this ; decompensated to compensated to healthy! 🙏

[Jowheeler84]

My story :36 year old female started feeling a swelling in my liver area on Feb 8th, immediately scheduled an appointment with GI doctor. After an ultrasound and bloodwork nothing showed any concern so for the time I was relieved. However, days after that i felt a sense of fullness and could not eat and started to lose weight along with muscle mass, clay like stools, chills and night sweats so severe I could not sleep. Seemed to experience some bouts of Hepatic encephalopathy which had me calling 24 hour nurse lines nightly and some family members to prepare for my demise.

Fast forward March 2021: While some things appear to be better , some things are concerning. Currently dealing with some dizziness, loss of ***drive, flushing feelings in my body sometimes, chronic fatigue, stool is darker now. My Bun/creat is 3.5 which is much lower than before, monocytes were higher than normal, etc had some blood work show that I may be going into early menopause. At this point, I am so lost and afraid not sure where to turn.

Test Ive had: LFTts , mri w and w/o contrast, ctscan shows some lesions on liver but they say they are benign yet my symptoms are very real. Any insight would be greatly appreciated .

[Worriesalot]

Sounds like menopause, some girls have a hard time with it. Can cause anxiety and of course the horrible sweats.

[Jowheeler84 in reply to Worriesalot]

I would love for this to be 100% menopause yet it seems like much more my friend. still praying against it.

[Worriesalot in reply to Jowheeler84]

I am in your position, not diagnosed, had clear bloods but sick with worry. I have worrying symptoms and so depressed. I really think you should be happy. Your liver has been thoroughly looked at and early menopause has been identified in blood. My friend had early menopause and was very down. I think she had some treatment and is great now. Good luck!

[Jowheeler84 in reply to Worriesalot]

Blessings to you my friend. I thank you for your positivity. It seems my menopause was triggered by something else and not just randomly. I only say that because of some lab work indicating inflammation and/or chronic infection in the body. Im still staying positive yet observant to what is going on. As for you and myself, worrying causes whatever is going on in our bodies to be worse so as hard as it is we must try to stay positive and give our bodies the support it needs to get us through this. Easier said than done for sure but worth the try my friend

[Worriesalot in reply to Jowheeler84]

True.

[Jowheeler84 in reply to Worriesalot]

I just sent you a message in our chat.

[Worriesalot in reply to Jowheeler84]

Just seen a post from an ex basketball player, same name! 😃

[Jowheeler84 in reply to Worriesalot]

I think that was me . i am an ex basketball player my friend

[Onesmallstep1969]

Drink coffee. It helps your liver.

[Jowheeler84 in reply to Onesmallstep1969]

I just finished a cup of black organic coffee. Are you battling liver dis-ease as well?

[Onesmallstep1969 in reply to Jowheeler84]

Oh yes, I am. These days, I am in a good place with the tests but I drink coffee to help the liver stay happy. I also try to eat healthy. None of us can ever get complacent because of course things can change.

[Jowheeler84 in reply to Onesmallstep1969]

Absolutely! Do you mind me asking what type of liver disease are you battling and for how long?

[Onesmallstep1969 in reply to Jowheeler84]

AIH since 2018. Lovely disease. Your immune system attacks your liver. My liver enzymes responded to the steroids and the immunosuppressants but really went low normal when I stopped eating meat/drinking dairy.

[Jowheeler84 in reply to Onesmallstep1969]

Wow! Thank you so much for sharing. How are you doing today?

[AyrshireK]

I don't know what you've got going on but it seems very, very unlikely that it would be cirrhosis based on not being diagnosed with it after all the tests you've had. Cirrhosis is not likely to be missed on ultrasound, CT and MRI scans unless they identified the lesions as areas of cirrhotic tissue. Plus, normal bloods.

When the liver is under attack then it emits all sorts of markers into the blood stream so things that show it is inflamed - inflammation markers etc.

When it's compensated and yet still cirrhotic then bloods can appear pretty normal but symptoms are far less and the bits of the liver that are still working try and dot he job the best they can (the cirrhotic bits of the liver are in effect dead scar tissue so they don't emit markers) and the well bits trying and keep the chemical factory going.

When the cirrhotic liver starts to suffer then you'll see different bloods go out of sync i.e. those that the liver is struggling to break down or eject from the liver, those that it should be making decrease and your bloods go deranged.

None of the symptoms you describe are isolated to liver issues alone and can be representative of other things.

Also, if you were to be say symptomatic of HE as you say, this would be identified in your blood results since HE is a symptom of having too much ammonia and toxins building up in your blood stream. (Also be very wary of labelling yourself with such a condition because if you have a driving licence you have to quit driving and your insurance is invalidated).

I don't know what you've got going on and doctors seem to be trying to get to the bottom of it for you.

Katie

[Jowheeler84 in reply to AyrshireK]

Thank you Katie, I am in the US and some of our doctors are not so thorough. I havent labeled myself quite just concerned of the possibility. As I wake up this morning, I have a flushing cold feeling in lower legs and I just got warm in my upper body, my stool was pretty dark yesterday, with bouts of dizziness. So its things like that that concern me daily. My CA 125 marker was slightly elevated and BUN/creatinine just dropped, I had my ammonia levels checked once and it was at 72 opposed to 53. So many different things

[AyrshireK in reply to Jowheeler84]

My husband has full on cirrhosis and none of the symptoms you've discussed are anything like what what he's had. He's been diagnosed since April 2012 and tries to get on with his life the best he can, he NEVER looks up any medical stuff and really he only gets me to explain things if he hasn't understood it. He doesn't dwell on the minutii and although I keep an eye on symptoms he doesn't think day in day out about his diagnosis or what it means.I do find that at the moment we have a contingent of posters who arn't believing what tests are telling them, continueing to search themselves and online for potential symptoms and some of these are manifesting in physical symptoms. Health Anxiety seems to be one thing we are seeing a lot on the forum just now, which ends up being a vicious cycle - stress leads to symptoms - hair loss, bowel issues, sleep problems and more.

I would be hugely amazed if you did actually have cirrhosis based on it absolutely not showing on the scans you've had - CT and MRI in particular are able to tell the difference between one type of lesion and another (I would want the diagnosis of those lesions clarified). My hubby has only ever had one MRI scan and that was to establish what some lesions were that showed up on a 6 monthly ultrasound scan - he has numerous benign liver cysts, haemangioma and some lesions that turned out to be denser lumps of cirrhotic tissue.

His day to day symptoms are minor HE, cognitive difficulties, sleep disturbance and fatigue. He eats well and is maintaining weight and muscle mass after an initial malnourished period where he was instructed to follow a specific diet plan. He's had various treatments over the years for varices, aneurysms and more. Was listed for t/p but delisted after 10 months because his condition stabilized.

His bloods are relatively normal and he has none of the red flag symptoms of advanced liver disease (just now) though cirrhosis is very much evident on his ultrasound scans.

I don't know what else doctors can look for in your case as I am not a medic nor have any background in medicine.

Katie

[Jowheeler84 in reply to AyrshireK]

With my concern being alcohol related doesn't the symptoms vary from other causes? I know you are not a medic I just value your insight greatly.

[AyrshireK in reply to Jowheeler84]

No, once a liver is cirrhotic the underlying cause become irrelevent other than if that cause is still ongoing then it's important to identify it and stop it if possible. Symptoms do vary from person to person and each persons journey is different but the tests are the same.

Use only reliable sources of information such at the British Liver Trust site, a lot of the American ones send you straight to your grave (i.e. those with symptoms checkers - headache leads to brain tumour rather than headache - eye strain, simple migraine over tiredness if you get my drift).

BLT has guides on ARLD and cirrhosis which you might find useful.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

In my hubbies case he was diagnosed after a massive upper GI bleed from burst varices, deranged LFT's and he had an ultrasound and that was sufficient to diagnose cirrhosis. He later had a liver biopsy to establish the cause of his illness which as a life long t-total chap turned out to be an auto immune illness.

Katie

[Jowheeler84 in reply to AyrshireK]

Thank you so very much for your insight! Would you say your husband leads a pretty "normal" life at this time?

[AyrshireK in reply to Jowheeler84]

He can't work (his occupation was welder in heavy engineering and he doen't have the concentration or steady enough hand to do this now and his fatigue would mean he wouldn't be safe working in that sort of environment), he struggles with making himself understood and understanding complicated instructions, he can't drive again knowing he would be unsafe because of concentration and fatigue issues.He is stable, has a terrible sleep pattern, can't plan ahead because he doesn't know what each day will bring. He's not long back in from a local 3 1/2 mile walk, on Friday we both went out and did a 7 mile walk together but also last week he spent the afternoons on 3 days napping in bed.

He is by far not 100% fit compared to the guy who used to take part in timed 100 mile challenge walks, long distance walks for holidays etc.

But his condition is under control just now, no 'obvious' outward signs of liver disease, colour is sallow but not jaundiced, no current issues with varices, never any ascites.

The sudden over night diagnosis meant he struggled for a while to adapt to this new life but he doesn't let it take over his all, he makes films, fills his time with crafts and hobbies, walks when he can and we have a touring caravan which we get away in when we can.

Doctors liaise with me re. the management of his condition and I accompany him to all appointments to 'make sense of things'. Hubby gets on with life, like I say he barely pays heed to having the condition, just lives life the best he can.

Katie

[Jowheeler84 in reply to AyrshireK]

Wow! I was under the impression that he was operating at 100%. I applaud him for continuing on and you for supporting him continuously. Despite all things, this all gives me hope still. Still feels like im in a dream .

[Scoobydoo100 in reply to AyrshireK]

Hi Katie, your reply and hubby approach is really helpful to me personally. I have been diagnosed July 2020 and have been proactively managing my health, with some great advice from this forum. It has helped with understanding some of the language used and I am mindful of not reading or searching too much as it is easy to become really anxious. My view is to understand the issue and do all the right things to take care of my health and whilst I can beat myself up about the past I have to look at the future, what is done is done sadly and feel sad not enough educational or awareness is out there about alcohol cirrhosis or the amazing function the liver does. Stigma still a big issue and I am guilty of not sharing my diagnosis with anyone for the fear of my shame. However I am positive, follow all the medical and specialist advice concentrating on being the best I can be 🌈

[Jowheeler84 in reply to Scoobydoo100]

How are you doing physically now?

[Scoobydoo100 in reply to Jowheeler84]

Hi, I feel okay, had my first 6 month ultrasound today.

[Jowheeler84 in reply to Scoobydoo100]

Do you have cirrhosis of the liver? Decompensated?

[Laurenluv in reply to Jowheeler84]

It sounds more like gut dysbiosis.

[Jowheeler84 in reply to Laurenluv]

Not sure what that is but ill check into it. Thank you

[SevereFattyLiver in reply to Jowheeler84]

Have you had a Fibroscan?

[Jowheeler84 in reply to SevereFattyLiver]

Yes ive had a fibroscan and everything seems normal per nurse practitioner

[Laurenluv]

It’s when the bacteria or Candida in the body is out of balance. Causes pain and indigestion. Remember part of your intestines run just below your liver. There might also be nutrition issues if the cause is from drinking such as low b vitamins etc.

[Jowheeler84 in reply to Laurenluv]

Were you able to read my entire story?

[Laurenluv in reply to Jowheeler84]

Yes, I did read your full story which is why I think it can be an issue with gut dysbiosis and malnutrition from drinking.

[Jowheeler84 in reply to Laurenluv]

Ok thank you so much for sharing your insight

[AyrshireK in reply to Jowheeler84]

Jo, I see you also had a Fibroscan which you say came back ok. All of these tests returning a negative for cirrhosis ALL seems to point away from a diagnosis of cirrhosis.

[Jowheeler84 in reply to AyrshireK]

You are absolutely correct! How would I go about asking for more clarity surrounding my liver lesions? They say the MRI would determine for sure, yet a biopsy is the only sure fire way to determine which is the super last option. Other symptoms, Easy bruising, dry mouth, none of the drs here seem to know what direction to go in at this time. If not liver cirrhosis.. Then what? Is my most asked question to drs. Still nothing. So it just keeps me lost.

[AyrshireK in reply to Jowheeler84]

What did the scan report say? It should have identified the lesions. Your doctor should be pulling all the evidence together, it's not up to you to go chasing further evidence.

[Jowheeler84 in reply to AyrshireK]

Thats just it. My doctors are not putting anything together for me. I keep getting passed around to different drs and no one is following through for meFINDINGS:Liver: Normal in size with normal background parenchymal signal characteristics. Multiple subcentimeter T2 hyperintense rounded lesions with the largest measuring 0.9 cm at the anterior junction of the right and left hepatic lobes at the level of the portal venous bifurcation (axial series 4, image 24). No associated diffusion restriction or abnormal enhancement. Portal and hepatic veins remain patent.

[AyrshireK in reply to Jowheeler84]

You need to pin down one doctor and have them review every single piece of evidence to give you an answer once and for all. I think you said you are in the USA so sadly i've no idea how your health system works. Who has been ordering all the different tests? Over here if a doctor orders a scan or tests then they provide the feedback based on the results and they are included in your medical records with this also fed back to your GP records.

[Jowheeler84 in reply to AyrshireK]

A hepatologist has been ordering those test and when I review everything with primary care dr they dont even bother to further investigate they just say according to this nothing is wrong with your liver and dont go beyond that.

[AyrshireK in reply to Jowheeler84]

I really don't know what else to offer, if the hepatologist who has ordered and reviewed the tests and said their is nothing wrong with your liver then evidently they are convinced of the accuracy of those results.

One thing you don't mention being tested is condition called Helicobacter pylori (H. pylori). This is only a suggestion based on the fact some other folk here have that as a diagnosis and it leads to abdominal and stomach issues and weight loss. This isn't liver related but is gastro related.

Katie

[Jowheeler84 in reply to AyrshireK]

H.pylori was tested and it was negative. Endoscopy / colonoscopy / hida scan completed. So not gastro at this moment.

[AyrshireK in reply to Jowheeler84]

Not gastro, not liver, maybe it is bouncing back to the earlier hormonal diagnosis. That's me out. Out of my area of expertise.

[Jowheeler84 in reply to AyrshireK]

Thank you for your listening ear! Its a difficult one for sure