NASH and frustration

[Rogerro]

Hi, I have been diagnosed with NASH and have been to QE Hosp for an appointment second coming up in Feb.

Feeling worried nervous confused and allvthat but feel slightly irritated that everything so far appears to be based on guesswork. Over the last three years all I have had is two ultrasounds(the results of which I have never seen) a CT scan of my lower digestive system, a long time ago, and a few blood tests that show nothing really out of the ordinary??

No one has laid hands on me for at least two years and I am told that later this year I will start suffering from HE and will lose my licence. And then may be listed for a transplant in around two years.

anyone else had so little investigation? It seems it is all being done by alchemy or smoke and mirrors.

it just worries me that they may be missing something else by just assuming things and not testing.

[GrandmaDylan]

When and who told you that you'd develop HE later this year and need a transplant? If no one has done any tests or physical examinations how can they tell?

[Hidden in reply to GrandmaDylan]

Good question GrandmaD I'd love to know what quack in the box said this as well. From whats being said here you had tests that revealed nothing conclusive 2 years ago and now you are being told you have Nash and are on your way to HE and transplant based on nothing more than the scans done 2 years ago?

Either you've missed something here or your doctor is a quack. I'd get a second opinion.

[Rogerro in reply to Hidden]

I don't think they are quacks at all, but if they know why they are so certain I would just like to know. Every one I have met seems to have the best intentions and seem to know what they are talking about I just want them to let me know. I think I have to make a list of my questions and make sure I understand the answer.

[Hidden in reply to Rogerro]

Well then there's something I'm not understanding about your initial post. When were you diagnosed with NASH?

[Rogerro in reply to Hidden]

1st visit to QE Birmingham was four months ago but initially told by local specialist 9 months ago. Before that it was classed as nafld.

[Hidden in reply to Rogerro]

Ok sorry. Seemed like your post had said that they diagnosed you with NASH recently from tests done 2 years ago.

[Rogerro in reply to Hidden]

No you are right, that's what's confusing, the majority of tests were two years ago, only the odd blood test since. They just seemed to decide last year that it was NASH.

[Hidden in reply to Rogerro]

Sounds like they aren't being very transparent with you. If it was NASH the blood tests would certainly show raised liver enzymes as NASH is defined by its ongoing inflamattion in the liver. I would ask them for copies of the blood test results over the past 2 years and the ultrasound/CT reports. Just so you can make heads or tails of where they are getting the diagnosis basis from. Alternatively I would tell the doctor next you see them exactly the same thing you've said in your initial post here. That you were diagnosed with NAFLD and are now being told you have NASH without any explanation as to why the diagnosis has changed and upon what grounds they ha e changed it.

It's amazing how sometimes things get lost in translation between different doctors. I'll give you a quick but purposeful example. A friend of mine who works in insurance defense has a plaintff claiming injuries for a car accident. So my friend has to go through all the medical briefs for the plaintiff. In the plaintiff reports its noted by 3 different doctors about her liver. 1 doctor vaguly called it alcoholic liver disease. The 2nd doctor noted that she had alcoholic hepatitis. And the 3rd noted it as cirrhosis. Even though all three doctors were looking at the same scan and bloodwork they all staged it different in their reports.

[Hidden]

Hi Roger and Welcome

Many of us, I think, have been through the frustrations you are going through unfortunately. It took three years nearly before I got to be referred to the quintessential liver Hospital QEHB having been going to the Royal Derby before QEHB. This is not a criticism of Royal Derby, but QEHB is one of the best liver hospitals there is. So if you have been referred there get out the 🇬🇧🏴󠁧󠁢󠁳󠁣󠁴󠁿🏴󠁧󠁢󠁥󠁮󠁧󠁿🏴󠁧󠁢󠁷󠁬󠁳󠁿 and rejoice, and please please don’t get frustrated!

It does take time but having a transplant (if that is what you think you are headed for) has to be a very considered process for obvious reasons, and if you are “lucky” enough to have a transplant (worse case scenario if they can’t use other means) then you will not, hopefully, regret it. I didn’t, and to the contrary, am having another chance of life and enjoying it immensely 😁👍.

The requisite testing will follow - hang on in there.

Miles

[Rogerro in reply to Hidden]

Thanks piloMilo, I am just confused as to how we got to this position without some sort of confirmation tests.

I am going back for the next appointment and may be I need to ask more questions.

[Rogerro]

Yes, and I looked at the bloodtests, everything looks normal or very close, the only one a bit high was potassium.