The not knowing

I have never met a gp who knows of Nash. I worry constantly about the outcome of my illness even though I watch my diet etc. More study needs to be done to help us conquer this disease

[Hidden]

We really need lot's of research into NASH and also it shows that its good if you can see a specialist.

[Granny56 in reply to Hidden]

How can we see a specialist if no one refers us because no one seems to understand the disease?

[Hidden in reply to Granny56]

Getting access to a specialist is important for a number of reasons, including having an accurate understanding of any changes and getting expert advice from someone who is likely to be following the latest research. You also have a much higher chance of participating in a clinical trial if you are seeing a specialist. But also it might be that there are few specialists in the area so it's a long journey or a long wait time. It sounds like you are doing your best to be proactive and be your own advocate.

[mauschen in reply to Hidden]

Is there something we can say which would encourage our GP's to refer us to specialist care.

My GP says all people over 50 years has a degree of fatty liver disease.

[Hidden in reply to mauschen]

Perhaps it would be worthwhile to ask for clarification as to why you have not / would not be referred to a specialist, and if there is any plan to do so, and what your overall treatment plan actually is. You could also ask about research participation. Most research in this area right now is looking at NASH rather than NAFLD but it could be helpful to make enquiries . In the UK a good place to start looking at what clinical trials are going on is ukctg.nihr.ac.uk/ AND the equivalent in the US is clinicaltrials.gov hope that is helpful!

[mauschen in reply to Hidden]

I have asked and have been told that my endocrinologist will cover this issue as my NASH and NALD (diagnosed a few years before my diabetes) are linked to my endocrine status.

Thank you for the links

[Hidden in reply to mauschen]

OK good luck with following up with your endocrinologist. If you endocrinologist refers you back to a liver specialist let me know - seems like people get caught in the middle sometimes.

[Sallywolf]

Studies are being done, but they get buried. I spend dozens of hours a week researching but without knowledge of all the medical terms this can be limited since most of the new studies aren't being reported on, so you have to read the actual text of the studies themselves and figure it out on your own. Google is really bad for "correcting" you searches too, as well as returning results opposite from what you asked for. For example, if you ask google how to increase your LDL, it will tell you how to lower it, and insist that HDL is "good" and LDL is "bad> Completely ignoring the proven fact that HDL is made from LDL in the liver. If you don't have any LDL, you can't make HDL