Hi All, I’m looking for some information regarding cirrhosis and Alpha 1 syndrome, as they call it in Canada.
I was initially diagnosed with alcoholic cirrhosis, after a bout with jaundice. Mainly a moderate drinker, so I was a bit stunned by the diagnosis. I haven’t had any alcohol since and am having blood tests every 6 months, as well as endoscopy once a year. So far, so good, maintaining elevated levels due to liver damage, but no progression, no varices.
Because I was surprised at the the diagnosis, I requested a second opinion. The 2nd liver doc confirmed Alpha1 MZ diagnosis, and advised me to have my siblings and children tested. He said it could have exacerbated the cirrhosis.
I asked my 1st liver doc, why he didn’t tell me about this and he said he didn’t think the MZ variant was significant to my liver disease. So, now I feel confused.
Has anyone else had this type of issue?
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White-pine
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Welcome to the forum White-pine. We seem to have had a fair few new members of late where Alpha 1 antitrypsin deficiency is being mentioned as a cause of their liver ill health. The British Liver Trust has a page about the condition plus a downloadable fact sheet at:- britishlivertrust.org.uk/in...
You need to keep an eye on your lungs as well with this particular condition so hopefully doctors are on top of that.
Hi White-pine I too have been diagnosed with Alpha 1. My F3/F4 (tbc) fibrosis is currently under investigation pending biopsy and I’ve been told to eat healthy and not drink (I’m a binger on both over years) it can have an effect on liver and lungs and seems to cause higher risks alright. Well done getting a second opinion it can help put the pieces of the puzzle together. I hope you are feeling well.
Hello, yes I’m new to the group and I was diagnosed with Alpha1 PIMZ, My gastroenterologist said that my cirrhosis was mainly caused by fatty infiltration I.e. poor diet however having alpha1 has possibly increased its development. I’m in the process of having further discussions as I have always been a healthy eater didn’t drink much just at social times and always kept my weight down so as you can imagine I was stunned to be told this. I feel personally they didn’t focus on the alpha1 part that much so I’ve asked the question is there a difference how the liver appears when affected by cirrhosis and alpha1, is there a different pattern ? Just think it’s too easy to put the damage down to poor diet. I have spoken to other group members of other alpha1 forums and they have extensive liver damage down to Alpha1 so I’m just looking for further answers.
Excellent question, please let me know what you find out.
I was under the impression that a ZZ variant was the worst offender for lungs and liver, and MZ was not as bad, but could still impact liver and lung function.
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