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Feeling worse 10 months after treatment

by ilim, Feb 28, 2009 02:55PM
I have been undetected 7 months after treatment.
I never felt healthy although. I have some kind of brain fog almost daily. Sometimes I am very tired.
But still I was thinking that it gets better until now. I was getting some energy to exercise a little few times per week.
My stool was getting more normal color compared to grease pale that was before treatment.
And even brain fog seems to improve. But last few days I got worse. Constant fog, tired, and stool return to
unformed, pale with undigested food pieces (sorry for gross details). Could it be virus break through or something else.Just a couple weeks ago I had blood work done.
My alt , ast are both good 26.
Total bilirubin  is 7 umol with norm <23. Bilirubin in urine is negative

I don't know what is causing pale stool if billirubin is on lower side. I measured bilirubin several times during my 1 years treatment and level was always like that even though stool still was pale.
I suspected cirrhosis but my doctor told me no way, you have high platelets (230) and low billirubin for this to be true.
Any ways I am feeling totally bad and I am already thinking may be it something else not liver causing it, I want to test for parasites in intestines but I am puzzled as I don't believe in such a coincidence as having HCV and liver damage and something else causing pale stool and my symptoms.
Any comments would be appreciated.

Thanks you
Member Comments (12)

by copyman, Feb 28, 2009 03:11PM
sorry you are feeling bad. I have read of other cases of people feeling bad after treating successfully. Did you ever have a liver biopsy? An experienced doctor can get a good idea of liver damage from exam & blood tests but a biopsy is the only sure way. Are you taking any supplements, vitamens,  fiber, etc ? you might want to consider taking some. watch diet and force yourself to exercise. If you do these things there is a good chance you will feel better and maybe even normal again. Best of luck

by jankar, Feb 28, 2009 07:00PM
Is it depression as well?  Brain fog, tiredness suggests it could be depression.  Diet and exercise can help that as well.

by portann, Feb 28, 2009 07:13PM
To: Ilim
Have a look at this link:

http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=64

It will give you an insight into the many post-tx side effects that some members had or still have.

I can't explain the stool color but maybe someone in the link also had this problem.

by HectorSF, Feb 28, 2009 11:25PM
To: ilim
Luckily you don't have cirrhosis (in my opinion). Cirrhosis s**ks, especially when SOC treatment doesn't work. Maybe depression (brain  fog, fatigue, feeling physically ill are typical symptoms of depression) or some other condition. Only a doctor can tell for sure.

The info below is from the California Pacific Medical Center here in SF. They have a transplant center there so they are knowledgeable about liver disease. What are your values for these tests?

"Know the Warning Signs of Cirrhosis"

Cirrhosis is defined as a scarring process where liver cells are replaced or destroyed and are unable to function. Cirrhosis can be caused by many different factors. Alcohol is only one of many causes of cirrhosis. The most common causes of cirrhosis in the world are the viruses such as Hepatitis B and Hepatitis C.

When the liver does not function properly, patients may experience one or more warning signs. Abnormal liver function is a warning sign of cirrhosis that is measured by a blood test. Examples include:

    * "thin" blood (An increased or prolonged prothrombin time – also called a P.T. – this test is now also defined as an "INR." The INR number increases as the liver fails.)
    * high bilirubin – greater than 2.0 mg/dL is a concern
    * low albumin – less than 3.5 mg/dL is a concern
    * low cholesterol – less than 100 mg/dL is a concern
    * low platelets – less than 100,000 is a concern (Platelets are cells involved in blood clotting.)

I have cirrhosis. Portal hypertension, enlarged spleen, and mild varices. Typical compensated cirrhosis. My platelets are 77k. And I feel healthy and fine. It is a myth that if you have (compensated) cirrhosis you will feel ill. This is NOT true. There are many people with compensated cirrhosis living their lives not knowing they have advance liver disease. I was one of them until 1 1/2 years ago when someone looks at my platelet count and said "What's wrong with you?". I didn't know what he meant. That was my start on this journey.

Your ALT and AST are both 26. Total bilirubin  is 7 umol with norm <23. Bilirubin in urine is negative. Platelets 230k!!! (I forgot it could be so high!)

To me your stools sound more like diarrhea than colorless stool. "unformed, pale with undigested food pieces"
If there is no bilirubin in the stool, the stool is a gray, clay-like color, this suggests that the flow of bile into the intestine is blocked. The most common causes of blockage are tumors of the bile ducts or pancreas.  NOT cirrhosis. Your bilirubin, which is produced by the liver is normal. Whether blockage of the bile would make you feel ill I don't know. The chance of this being the case has to be very low.

Cirrhosis is no mystery. It is very easy to diagnose. 230k platelet count? You definitely don't have portal hypertension. PHT is one of the effects a person will first have after being cirrhotic. Yes it is possible to have cirrhosis without portal hypertension (very early stage 4) but I am happy to tell you there is no way you have advanced liver disease in my opinion. A biopsy is not always need to diagnosis cirrhosis as the blood tests above indicate.

Please get a checkup to find out if anything is going on physically. If not it may be depression. I have experienced both. Depression for me was like HCV treatment times 10. A true nightmare. I felt like I was dieing everyday. The good news is the treatments for depression are more effective then the treatments for HCV.

I wish you all the best.
Please get help to stop your suffering.
Hectorsf

by fretboard, Mar 01, 2009 01:30AM
To: ilim
Here's my 2 cents.  You tx'ed successfully and the damage has stopped, but my guess is that the liver is a tender area and needs time to recuperate.  Especially true if you were headed for cirrhosis.  I'd say any day now you should feel right, but you have to make sure you're not depressed on top of it.  Here's the article that gave me my theory.  good luck    

http://www.sciencedaily.com/releases/2008/12/081209111518.htm  

by Bobby1952, Mar 01, 2009 09:48AM
To: ilim
   What about a "Colonoscopy". Sometimes we have other things going on with our bodies along with the Hepatitis C. I know you think it is the Hep C or after effects of the Interferon but there are coincidences sometimes. What I am trying to say is be proactive and get your DR. to pursue your problems. Don't assume it is the after effects of treatment.

Bobby

by ilim, Mar 01, 2009 10:13AM
Thank you very much for your comments.
I will make an appointment to my doctor and will probably have biopsy to check status of liver and will go from there.
I have heard that in cirrhosis biochemistry like ALT and AST and bilirubin normalize.
But if not the liver culprit will have to go through other exams.

Thanks again

by ilim, Mar 01, 2009 10:15AM
By some reasons I don't believe in depression and always was thinking that it is
just self imposed feeling but I guess I will have to check it too somehow.

Thanks

by fretboard, Mar 01, 2009 11:32AM
Sir,
I never believed in depression either until I tried tx.  good luck

by Rockerforlife, Mar 01, 2009 12:16PM
Depression is usually caused bt chemical imbalances in the brain...its something we have little control over...it can happen at anytime

by HectorSF, Mar 01, 2009 01:04PM
To: ilim
The main thing is that you get to the bottom of whatever it is that is making you feeling ill, so you can start feeling better ASAP. Now that you have conquered HCV you have the rest of your life to live a happy and healthy one.

If it is clinical depression, there is no shame in that. It is a totally misunderstood condition, in the same way that Hepatitis C is not understood by the general public either. It too can be overcome like you overcame HCV.

Congratulations on your SVR. That is a huge accomplishment!!!
Hectorsf

by geterdone, Mar 01, 2009 01:07PM
TXPTS yup, that's what it is, it starts anywhere between 4 and 12 post after the initial drop syndrome. It starts off with a high level of euphoria and then a sudden drop. It is during this drop that anxiety and re-symbolization of the horrid effects of treatment resurface in a cyclical cycle and depending on the lenght of treatment it can last anywhere from 4 to 12 months post and even then some may never recover for this cycle may be do to the inability to get passed the now stuck endorphins of past and present. It is a difficult period to get through and is said that once past this phase life as you know it will return to normal before the TXPTS experence.



geterdone
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