struggling liver due to alpha 1 antytripsine deficiency

[9867]

I’ve never been a big drinker - one or two glasses of wine a week and not every week, but have just been told by the GP to cut out all alcohol no matter how small due to a struggling liver as a result of genetic alpha 1 antytripsine deficiency. Wondered if anyone’s had the same and whether the liver was able to improve with diet changes - ie no alcohol and liver friendly foods/drink - or whether the alpha 1 condition stops any improvements regardless of diet and life changes - hope that makes sense.

[carmik]

Hi

Sorry to hear of your diagnosis.

Unfortunately A1Ad is out of your control, regardless of how well you look after yourself.

You could be lucky and spend the rest of your life never becoming really ill, it is just the luck of the draw.

My hubby was one of the unlucky ones, but is now 10 years post transplant and still here!!

Good Luck

[9867 in reply to carmik]

Thank you very much for taking the time to reply, I'm so sorry about your husband but am glad that his transplant went well.

[Peter_Plymouth]

Hi - as carmik says genetics are out of our control however there is a very good information sheet from the NHS that discusses it in detail since there are several versions depending which gene is missing.

nbt.nhs.uk/sites/default/fi...

If you have any problems following the link please PM me and I’ll send it to you directly.

You do need to ask your GP exactly which genetic issue you have since there are 8 variations of the gene error and the issues, best plan of action etc are very much dependent on which variation you have.

Good luck - Peter

[9867 in reply to Peter_Plymouth]

Thank you so much for your reply Peter and for the information, that's really helpful. None of this has been discussed with me by the GP and I've felt quite let down so far, so it is good to know that there is information and when I go for my next check up I will feel a little more prepared and know what to ask. Thank you.

[Readlots]

Hi, I have A1ATD alleles SZ. I also have autoimmune hepatitis and Primary biliary cholangitis (autoimmune liver diseases) so whilst I know that as Carmichael says my liver disease is out of my control, I don’t drink or smoke and try to avoid chemicals e.g cleaning chemicals and hair dye that can put additional strain on my liver and lungs. I try to eat healthily and walk daily but do struggle with my weight but have decided that I’m not going to beat myself up about that. So far I’ve been lucky and my liver function tests are OK.

[9867 in reply to Readlots]

Thank you for your reply and for the tips on keeping generally well, I do try to exercise as much as I can and I eat healthily and am not overweight so hopefully all that will help. I'm glad your liver function tests are currently OK.

[Readlots in reply to 9867]

You’re welcome. It can be tough getting a diagnosis so be kind to yourself and just keep doing what you’re already doing. You will adjust, give it time

[Fluffysian]

Hi 9867

I’m sorry to hear about your diagnosis. I was diagnosed with decompensated cirrhosis in January 2022 and after a liver biopsy, the cause was due to me taking medication for rheumatoid arthritis for 25 years (methotrexate) and being a carrier of A1AD (MZ genotype). There was no evidence of any alcohol damage. A work colleague told me my eyes looked yellow so I went to my doctor and after loads of tests, scans, etc, was told I needed a transplant. The scary thing is I didn’t realise I was so poorly and my two monthly liver function tests didn’t show any issues until the time I was jaundiced (raised bilirubin). I was put on the transplant list in August and had the transplant at beginning of September. A1AD can affect your liver and/or lungs……I was only a carrier but problems can happen due to other factors like alcohol, toxins in medication and smoking. I was told to stop drinking alcohol, to stop the medication immediately and to eat a high protein diet. Unfortunately my liver was well past the ability to get better but hopefully yours has been found at an earlier stage.

If you know the gene you have, you can find loads of info online from the nhs as Peter suggested. We have since found out that my sister, Dad and Aunty all have the same gene so it’s worth relatives get investigated.

It’d be good for you to see a liver consultant because they will tell you you the best course of action…..everyone I have seen so far in Birmingham have been amazing and have really sorted me out. I’m now 3 months post transplant and am feeling so much better than I have in a long time.

Good luck with everything! x

[9867 in reply to Fluffysian]

Thank you very much for your reply and information and I'm glad you're feeling better post transplant. I was told to stop drinking - even thought I hardly drink was told to go t-total but the high protein diet wasn't mentioned. I'll have a look at the information Peter has sent the link to and will try and find out which gene I have. Thanks also for the heads up on family members; this was also not mentioned to me by the GP. I'm very grateful for the support from this group. Wishing you well.