"There's a myth that anyone who has a liver problem has brought it on themselves" This quote is from a Crohn's disease patient living with a blocked portal vein hoping for a liver transplant (Independent 31st Oct 2010)

Tuesday, 18 January 2011

Congratulations! You have a diagnosis ... Erm, maybe not ...

Letter from Dr C arrives with the confident words: DIAGNOSIS at the top.
His words in
grey, mine in blue. I’ve changed names for confidentiality
The letter is to my GP with a copy to me, to the pathologist and to the surgeon. It starts

Dear Dr M…
Re: Fiona
Chronic hepatitis B
HBsAg Hepatitis B surface antigen positive
HBeAg Hep B antigen negative
HBeAb Hep B antibody positive
Translation:- I have a long standing hep B infection, that isn’t replicating in the liver cells, that has converted to non-infectious and is doing less damage than it was at the beginning. These tests (above) were also done in 1993 with the same result, which means I’ve had an inactive virus for at least 17 years
Hepatitis B virus PCR negative
This test, done for the first time in 2010 is a sophisticated test looking for a virus DNA blueprint in the blood. I have undetectable levels which confirms an inactive infection with low replication in the liver
Established cirrhosis
So apart from the cirrhosis this diagnosis is good, because it’s full of words like ‘inactive’ and ‘negative’ and ‘undetectable’.
Now we throw in some variables, my questions put to him in December:-
Raised iGg @ 37
Positive SMA 1:800.
Positive LKS
The raised iGg is more than double normal and can indicate autoimmune diseases. However it's also elevated in someone HBsAg positive who has HCC and cirrhosis - which was me when the sample was taken -so could be a red herring. The iGg was also raised in 1993 but no action was taken
The SMA is a positive test for autoimmune …. But can also be raised in cirrhosis.
LKS stands for Liver Kidney Spleen. I think it means they used liver kidney spleen tissue for a technique called ‘indirect immunofluorescence assay (IFA)’ as this is known to be the best type of tissue sampling for finding smooth muscle antibodies.
He carries on:

I reviewed Mrs Onwards and Upwards today in the out-patient clinic.
I addressed several of her questions regarding her underlying condition. She was concerned about the inflammation on her latest specimen. Her biopsies are due to be reviewed by Dr ‘Pathology’ at North Manchester. I suspect the florid activity could have been related to surgery.
She does have a positive smooth muscle antibody in titres of 1/800 with positive LKS antibodies and a raised immunoglobulin. IgG was 37. Her ALT has remained normal/mildly elevated in the past. I suspect this may be secondary to her cirrhosis.
She has been complaining of myalgia
(muscle pain) and generalised aches and certainly one needs to exclude auto-immune hepatitis (so there may be something else going on) in combination with chronic hepatitis.
I have requested Dr ‘Pathology’ to review the biopsies with regards to Hep B surface antigen and also to comment whether there is interface hepatitis
(I think 'interface' means active chronic hepatitis but it’s also a check for primary biliary cirrhosis, another liver disease) or plasma cell infiltrate (don’t know what he’s up to here but may be a test for another liver disease called primary sclerosing cholangitis) Ultimately we will need to consider a liver biopsy to assess this further .
So we don’t really have a diagnosis because although we know what it’s not (Hep B) we now have a list of what it might be – autoimmune, primary biliary cirrhosis, primary sclerosing cholangitis. The British Liver Trust site has a heading ‘Liver Diseases’ with a list of 20 different ones – God help me should we end up working through the list eliminating them one by one!
She is due to have a routine gastroscopy to assess her for varices. She will also have a CT scan in March 2011. She is due to be reviewed by Mr O’Blimey in May 2011.
We will write to her once I have had the biopsies reviewed.

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