Wrong diagnosis letter from Gastroenterology about my cirrhosis..

[monikoki]

Hello again.. I received already my biopsy appointment which it will be in 31'st August (much sooner than I have expected, but this is great). All good besides the medical letter that I received yesterday, in which almost everything is wrong written.

First is saying that I have F4of severe Cirrhosis, but I hope that could be written by mistake instead severe fibrosis. (hopefully)

They are saying that my ALT level was 150 at my last blood test, instead 195 which it was the real level.

Than, they are saying that I" denied any symptoms of fatigue and weakness, and seems in a good overall health "?! This is sooo wrong! The consultant never asked me about my symptoms, from which I was complaining already for one year. How possible to say such a thing about something that never happened?! He didn't look at my huge bloated belly and he didn't asked me about my symptoms at all.

At the beginning I was jus wanting to lat it go(because I am so tired to fight for gaining the medical help that I need for so long now) , but I keep thinking about the fact that maby can have a negative impact at my future evaluation...

And I don't know what to do now. I should call the consultant gastroenterologist and complain about the letter? But I am afraid that they will say I am a crazy lady. (we already have a passt with the secretary who gave me appointment in November after being diagnosed with cirrhosis...)

Should I go just to my Gp and discuss about it? But I think that email's are not read properly by the consultant, because my Gp already wrote emails about my symptoms, and seems like was never read..

I hope that you can help me with an advice about what I can do..

Thank you

[AyrshireK]

Severe fibrosis at F4 = Cirrhosis. Some doctors use the terms F4 Fibrosis but it basically means the same. Some doctors also use the term end stage liver disease which sounds really scary but really just means it's the last stage on the fibrosis scale.

I thought you had already been told you had cirrhosis based on fibroscan and were now awaiting liver biopsy to try to identify the cause of your cirrhosis. As regards the other comments made in the letter I would wait until you've had your biopsy and got results, if a cause isn't found or you are still left in the dark then perhaps use it as the time to request referral to hepatology.

You've been diagnosed a long time with cirrhosis so you need proper monitoring to make sure you are having your 6 monthly ultrasounds (which should identify whether you have fluid build up causing your swollen tummy) and regular blood tests.

Your GP should be able to assess your swollen tummy.

Hopefully you'll get some answers soon after your biopsy.

Katie

[monikoki in reply to AyrshireK]

Thanks for the reply.

I know that F4 Fibrosys =cirrhosis. In the letter, like a tittle is wrote F4 severe Cirrhosis.

I do not understand just why did he lied in the letter about my symptoms... And worried about it to not influence the next steps into my treatment. Or the other consultant to think at me like I am not an emergency because I do not have any symptoms. Which would be wrong..

[ENuk in reply to monikoki]

It may be that he has assessed your general health, rather than your comments.

I wouldn't worry about the comments, the medical results are what will he reviewed and as you say they have quickly organised a biopsys. Once you have the results back you are likely to be transferred to hepatology.

Only after everything else was ruled out did I get referred to hepatology.

It is good to be proactive with your diagnosis but you also sometimes have to trust that you are being cared for.

[monikoki in reply to ENuk]

Hi there, thanks for the reply.

He did not assess my health, he didn't looked at my huge belly or my legs weakness...

I will see today my Gp for a new blood request referral prior to the biopsy, and will ask about this letter.

Yes you are maby right about giving some trust to my gastroenterologist.

Thank you

[Hidden]

Dear Monikoki,

It is important that any documentation concerning your health/diagnosis is accurate for future reference- you may see several different doctors over the course of time so accurate records/letters are critical to your ongoing care . You might like to call the Patient Advice and Liaison Service (PALS) at the hospital where you are seen, you would be able to contact them through the hospital switchboard. They would be able to advise you on how you could best deal with this.

[monikoki in reply to Hidden]

This is a good idea, thank you for the reply.