Been a long time since I posted but I have noticed a few posts about not getting proper monitoring so I thought I would update you.
After a few years of pretty stable disease with a fibroscan result between 10 and 15 yearly, (treated as NAFLD/AIH as both apply - greedy aren't I?
9 months ago I was found to have some fibrosis but not that much. 8 months later and there was significant worsening.
1 month later (last week) I have been diagnosed with f3 borderline f4 cirrhosis. Came as a bit of a shock that it nosedived so quickly after being stable for so long.
I have now been put on 6 monthly ultrasound (checking for signs of cancer), 6 monthly endoscopes, monthly bloods, 6 months with specialist and 2 monthly with GP assuming no further changes.
I'm not too scared to be honest because I have gleaned so much information from this forum and the BLT directly. I know what I'm facing and know I can call my GP and/or specialist with any questions or worries.
I have been told to use CBD hemp oil (cannabis seed oil with the bad bits taken out) so am adding that in to my daily diet - surprisingly fresh and herby.
The reason for this update is to illustrate that your doctors should never be complacent about your disease. Once you have been given a diagnosis based on specialist tests you not only have a right to, but positively need monitoring even if yearly. A blood test alone is not enough for diagnosis but does require follow up unless it's a minor rise and you have have a current reason for the rise, unless the results are unchanged on further blood tests. 'Normal' is a wide range in the results.
I know that I am lucky with my doctors, possibly because I live in a rural town and things seem to run differently. If you aren't lucky and you need to know more then push for it. Be the mosquito in the ear of your doctor and insist on further testing and referral to a hospital specialist. You could dive as quickly as I have without knowing about it.