Thalassemia Patients and Friends

Discussion Forums => Thalassemia-related Issues => Topic started by: dlevy on July 29, 2006, 05:59:18 AM

Title: Liver pain
Post by: dlevy on July 29, 2006, 05:59:18 AM
Hi everyone,

I was wondering if liver pain can be caused at a serum ferritin level between 1000 and 2000 ng, or if this might be due to something else like hepatomegaly, hep c, not getting enough transfusions, fibrosis, or something else.  Does anyone know at what ferritin level fibrosis can start to occur?

Also, why does hepatomegaly occur in thalassemia?  Is it because of overcompensation or because of the iron overload?  Does anyone know whether or not hepatomegaly can be reversed with sufficient treatments? 

Finally, how can you tell if drinking alcohol while being iron overloaded has caused any damage to the liver?  Is a liver biopsy the only way or can a CT show this as well?  I read somewhere that this could sometimes lead to cancer ... is this what other people have understood too?

This is kind of a loaded discussion of the liver.  If anyone can help with any of these questions, it would be appreciated.  Thanks much.

-David 
Title: Re: Liver pain
Post by: Poirot on July 29, 2006, 09:06:04 AM
I was wondering if liver pain can be caused at a serum ferritin level between 1000 and 2000 ng, or if this might be due to something else like hepatomegaly, hep c, not getting enough transfusions, fibrosis, or something else.  Does anyone know at what ferritin level fibrosis can start to occur?

You should do a Liver function test (LFT) and a liver MRI before reaching any conclusion. SF levels may not be indicative of organ damage due to iron overload, so you can not really draw any conclusions from that. Liver pain could be due to something as basic as jaundice to something more serious. It is unlikely that not getting enough transfusions is causing you the pain, though.

Quote
Also, why does hepatomegaly occur in thalassemia?  Is it because of overcompensation or because of the iron overload?  Does anyone know whether or not hepatomegaly can be reversed with sufficient treatments? 

Hepatomegaly occurs due to the toxicity of iron when the liver is overloaded. Adequate chelation usually stops the progress of this breakdown in liver cells. L1 has been proven to be exceptionally good at removing organ iron. However, reversal is tough as damaged liver cells are tough to regenerate.


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Finally, how can you tell if drinking alcohol while being iron overloaded has caused any damage to the liver?  Is a liver biopsy the only way or can a CT show this as well?  I read somewhere that this could sometimes lead to cancer ... is this what other people have understood too?

MRI/Ferriscan or SQUID testing are non-invasive methods of testing. IMO, better than liver biopsy, since the entire liver is scanned as opposed to diagnosing based on just one sample. Hep C is more likely to lead to liver cancer than just pain iron overload. But, the latter untreated would kill liver cells, in any case.

Hope that is useful as a starting point for discussion on this important topic.

Cheers

Poirot
Title: Re: Liver pain
Post by: lily on August 18, 2006, 08:51:43 PM
as to poirot comment,    liver biopsy not as accurate as MRI/SQUID

i believe that to be completely untrue and completely the other way around.  if theres any form of damage to the liver the biopsy is the only real  indicator as to the severity,  also depending on the severity of damaged liver the MRI, CT, SQID testing are all useless.

my son has had around 8 biopsies to date.  when he was younger we relied completely on blood work and CTs and all other noninvasive form of testing that we did not know how damaged his liver was until he had the first biopsy because acording to all other form of testing the liver looked fine.

also you are incorrect and that the liver can regenerate itself even when severely damaged.  at my son's last biopsy his fibrosis stage dropped from a 4 to a 3.  my son was placed on a liver transplant list about 5yrs ago, to date we've had no need for a transplant.

so, 2 things,
liver biopsy is the most acurate form of testing being done.
yes, even a severely damaged liver can regenerate to some degree.

take care
Title: Re: Liver pain
Post by: §ãJ¡Ð ساجد on August 19, 2006, 05:26:22 AM
Well Lily, that sounds like a pretty logical reason. It's just like that an apple or a picture of it looks normal on the outside but only when you cut it open you know that it has gone bad or not.

Sorry for using such an unusual example.  :-\
Title: Re: Liver pain
Post by: Poirot on August 20, 2006, 03:16:35 PM
as to poirot comment,    liver biopsy not as accurate as MRI/SQUID
i believe that to be completely untrue and completely the other way around.  if theres any form of damage to the liver the biopsy is the only real  indicator as to the severity,  also depending on the severity of damaged liver the MRI, CT, SQID testing are all useless.

I guess if you are unable to use MRI or SQUID, then biopsy is the best indicator of liver quality. Doctors told me that MRI was better because it scanned the entire liver, while the biopsy was based on a sample. The MRI uses magnetic rays to detect metal deposits in the entire liver, irrespective of where it is located, so you get a complete picture.

However, if cirrhosis has already developed, then biopsy may be the better option as you get a real piece of tissue to analyse the extent of cirrhosis.

Poirot
Title: Re: Liver pain
Post by: lily on August 21, 2006, 07:38:26 PM
all i know is that my son wouldve never been taken off of desferal for over a year if he had a bx done instead of those other non invasive tests.  we relied solely on those tests that indicated to us that everything was good including real low ferritin levels, and i believe that because of that he is where he is today with his liver.  i believe his damage couldve been prevented, so forgive me if i get a little frustrated with this subject.  all of you patients go thru so much already with this horrible disease i dont want anyone to add a bad liver to that list of problems that you already have. just be aware of all the possibilities from these non invasive tests.

as sajid said an apple can look good on the outside but be bad in the inside and a bx can tell you if its bad on the inside.  well put sajid.

take care,
Title: Re: Liver pain
Post by: Poirot on August 22, 2006, 11:47:18 AM
Lily,

I am really sorry to hear that your son was misdiagnosed on the basis of those tests. It is a terrible thing to happen, on top of everything else, as you said.

I wish him a complete recovery. Do keep us posted on his progress.

Poirot