"Mild" Cirrhosis? Thoughts?

[Moonunit123]

Hello - First off, sorry for the long post.  Here it goes...After a few yrs of elevated LFTs, my PCP finally referred me to a GI/Hep Dr & also ordered more blood work & an US.  My only symptoms were the elevated LFTs until very recently, bilirubin went up (in the past year), platelets dropped & I developed macrocytic anemia, not due to a B-12 deficiency.  So, I asked my PCP if I should stop drinking altogether (I would describe myself as a on again/off again drinker...having beer or wine when we happened to have it around, mostly a warm weather drinker, sometimes taking weeks/months/ even a year between drinks, for a total of ~ 15 yrs)...he said yes, until we find out what's up with my liver (wondering why he didn't say this at the first sign of elevated LFTs?).  Anyway, blood work showed ALT>AST (176 vs 74), lowered platelets (133,000), bilirubin rose to 2.5.  US showed a "slightly enlarged" spleen, & a nodular liver (described to me as a "few" nodules seen on the liver).  I show no outward signs ie edema, etc., other than bleeding gums which my dentist noted.  Around the time this was taken, I had been drinking wine that week prior.  After stopping drinking, the next blood work (2 months later) showed normal numbers with ALT & AST almost equal, bilirubin normal, & my gums no longer bleed.  ALP however is still elevated.  Albumin & kidney readings were normal, clotting was high-normal.  The Hep Dr said that despite the rapid improvement, he still thought I had cirrhosis due to the US findings of "nodules"...he characterized it as "mild" when pressed for severity, based on labs & symptoms (or lack thereof).  I was told to eat healthy & he will be ordering a biopsy to rule out auto-immune & genetic testing for iron overload - both of which had flags in the blood work (high ferritin, flags for auto-immune condition w/ my intestines - I do have a history of "colitis").  I am hoping that the rapid increase in blood work means my liver is not too damaged.  The doc basically did not seem at all alarmed & also did not believe the problem was due solely to drinking sporadically.  I am now an off-again drinker for the remainder of my days.  I am 51 & otherwise very healthy, having passed my cardio stress test with flying colors & no other problems other than slightly overweight (working on that).  I take no meds, not even aspirin, except for maybe an aspirin twice a year.  Thoughts about the diagnosis?  The nodules worry me - if it weren't for that finding, I'd be feeling much more relieved.

[rpwoodard]

Hello Moonunit,
How have you been doing? What were the results of your hemochromatosis testing?

[Livelife777]

Moonunit.   Let us know how everything works out as you continue on your journey.  With moderate varacies you may want to be careful with lifting heavy weights as thoracic pressure could cause a bleed unfortunately.  With cardio your Ok, but lifting should include higher reps and lower weights.
We are with you all the way
.....Kim

[Moonunit123]

Hello - The endoscopy showed a few moderate sized varices in the very lower portion of my esophagus, so they said there is some portal hypertension (don't know if it is related or not but I also have hypertension not controlled by meds).  Turns out they decided not to do a liver biopsy?  (Not sure why).  I sent the liver doc a message asking if I could still work-out & he called me & said yes, there is nothing to worry about.  He also now says I have Fibrosis 3-4, and says there is "presumed" cirrhosis.  He wants to let my liver rest for another 3 months & do another endoscopy to see if the varices go away on their own.  This kind of leads me to believe that it may not be actual cirrhosis but late stage F3.  I followed-up with my hematologist & he said my blood work was normal, except for serum ferritin, which is still elevated, but bilirubin is back to normal as are LFTs, & platelets increased on their own to almost normal.  He is still concerned about the ferritin, not sure if that's because of the polyp they found while poking around & took a biopsy of or what.  He also ordered a genetic test for hemochromatosis...I guess my ferritin should have come back down to normal along with everything else.  Anyway, I can't eat red meat or leafy greens per the blood doc.  I'm hoping everything goes back to normal...it's very close anyway...hope my liver can make a full recovery or very close to it at least.  :)

[Livelife777]

Hi again.   I also have mild/early Cirrhosis and understand what you must be feeling.  They really won't know for certain until the biopsy and endoscopy results come in.  I hope that they can conclude F3 stage, but even if early cirrhosis is the diagnoses at least that can be managed.
Not really surprised with the weight loss as stress undoubtedly creates a lack of appetite.  The key at this point is to try to eat a "Liver Friendly" diet which encompasses lots of fruits and veggies but particularly a diet low in sodium.
You may also reassess your vitamins and supplements and at this time try to avoid iron if it's in your multivitamin.  Red meat should be somewhat occasionally, and try to get your protein thru lean white meat such as turkey or chicken.  As always make sure your drinking plenty of water.
Let us know if you have any questions and keep us posted on your results.
Whatever the outcome as your Dr has said, it can all be managable..
Be Well
....Kim

[Moonunit123]

Hi Kim - Thanks for your response :)
Well, I was so distraught this whole past week that my boyfriend got a hold of my Hepatologist yesterday & had a long talk with him about my diagnosis (still to be "cemented" by biopsy, though all signs point to cirrhosis).  The doc was surprised that I was so upset because he had told me that it was mild & I only had to eat healthy & avoid alcohol, & follow-up with the biopsy to rule out auto-immune (I will also be getting genetic testing by a hematologist for Hemochromatosis, since I have the signs of that, am Irish, & am in the right decade of life to show symptoms).  So, basically, the doc reassured my b/f that I had nothing to worry about, so long as I avoided alcohol, & would live a normal life.  He didn't deem my condition as life-threatening in the least, and said progression can be stopped in it's tracks.  There may be more to do based on the biopsy (if they find signs of auto-immune activity) & the genetic testing, but those 2 possibilities can also be treated.  So basically, it was his opinion that even though I most likely have cirrhosis, it's very early/mild.  He reassured us that he can determine this based on physical exam plus latest blood work results compared to the baseline, which showed marked improvement.  

Probably the latest thing that worried me as well was my rapid weight loss.  I was 145-148 back around May 20th, now I am 133, 1 1/2 months later.  8 of those pounds I lost in 2 weeks.  The doc didn't seem to be too concerned about this.  I tend to lose weight with any illness when I am in "recovery mode", but this is most impressive.  

[Livelife777]

hi there Moon.  I understand your worry and concern.  I know it's hard to not feel scared but it's really a good thing that you were tested further and the nodular liver was found.  As Hector and ftn above have said, a biopsy will give you the answers you seek.  They are experts in this field and I don't say that lightly.
When faced with the unknown, it is always the most difficult aspect to grasp. Uncertainty about ones future leaves us with more fear then the reality of what's to come.  Once they get to the bottom of your nodular scan and high Bili should something be found you then have a course of action to take. It is only then when you will be able to become proactive in becoming better.  They do have in medicine ways to treat liver disease where you can live a full and happy life.  On the other hand, they may find nothing and the situation can be just a bad memory.  I'm hoping that the latter is true.
Please let us know what you find out and if you need support or guidance we will be here to help.  In the meantime try not to worry, and take care of yourself.
.....Kim

[HectorSF]

It sounds like you are doing what you should be doing at this point based on your liver related test results. The biopsy will tell a lot about how advanced your liver disease may be (stage, cirrhosis being stage 4 liver disease) and its cause and the endoscopy and colonoscopy will help to assess any amount of portal hypertension (with its resulting varices) which is a vascular complication of advanced scarring of the liver (cirrhosis).

The biopsy results should indicate the cause of any liver damage you have and further blood testing can also be used to assess further what has been found by the biopsy.

Once the cause of your liver disease is known than you and your doctor can take steps to at minimum slow the progression of your liver disease if not stop it before you develop irreversible liver disease.

I am glad your doctor seems to be proactive as a nodular liver and high bilirubin can be signs of advanced liver disease and needs further investigation.

Wishing you good good news from your biopsy report.
Hector

[Moonunit123]

Hi fntn - I hope what they found helped you in your treatment.  I'm still scared about the 'nodules'.  While the improved blood picture made me feel better, those nodules are still in the back of my mind.  Sometimes I wish I just never got the ultrasound & just got the improved blood work results because now I'm so worried I can't even concentrate on work, eat, sleep, or anything.  :-/

[fntn]

Your message sounds so familiar, I was dealing with something like this myself a few years back and I had a very confused bunch of doctors. Hector has provided great advice, biopsy is the likely key in your case. I had several and it suddenly made everything very clear so the diagnosis could be final be made. What they are able to extract from the histopathology is amazing. Good luck.

[Moonunit123]

Hi Hector - Thanks for your response.  I am scheduled for a biopsy, & had it on my list to ask the Hep doc about Fibroscans, etc.  So far I've just had blood work-ups & an US which showed "nodules". I'd like a FibroScan so I know what I'm dealing with.  The biopsy is actually the end of this month (along with an endoscopy & colonoscopy while they are at it).  I suspect they think I also have an autoimmune or iron overload problem (according to blood work) which is contributing to the problem.  Alcohol has been removed from the equation...my last glass of wine was back in early May, prior to going to the docs for something unrelated (injured in a car accident).  The blood results with the elevated bilirubin inspired my PCP to send me straight to the GI then the Hep Dr.  I'm just hoping this was caught in time or that any other contributing factors are ID'd.  I have no desire to go back to the wine - bad on the wallet & worse on my health.  I abandoned beer long, long ago, so good on that front too.

Thanks again for the advice!  :)

[HectorSF]

First understand that blood work doesn't tells only a small part about the damage done by having cirrhosis. Many of the blood levels you mention tell little to nothing about the stage of liver disease a person has. A proper abdominal and physical exam, biopsy or FibroScan, scans, endoscopy tell are what is used to diagnose and assess advanced liver disease and cirrhosis.

I would recommend having the biopsy performed soon and then you will know if you have advanced liver disease or cirrhosis. Also the biopsy will determine what is the cause of any liver disease you may have so you can do something about it before it becomes more advanced and is irreversible and life-threatening. Note that if you have cirrhosis you are at additional risk of developing liver cancer and will need to have twice yearly scans and blood tests to check for the development of cancer so if it should develop it can be treated early when it is still treatable.

If you have cirrhosis for any reason you will have to stop drinking, as alcohol is toxic to the liver and will only cause more damage to your liver. If you should have something than alcohol damaging your liver, drinking will speed up the ongoing damage caused by the other condition.

Please be aware that cirrhosis of the liver doesn't develop in someone who 'taking weeks/months/ even a year between drinks'. It take decades of continual damage for the majority of liver cells to be destroyed and become non-functioning scar tissue.

Let us know what your biopsy results are.
Hector

[Moonunit123]

Meant to say "I am hoping that the rapid decrease in blood work means my liver is not too damaged."