Worrying Autoimmune: Good afternoon I... - British Liver Trust

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Worrying Autoimmune

Bumblebee288 profile image
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Good afternoon I hope everyone is enjoying the bank holiday and keeping safe, my question is I have been told I have NAFLD which is being monitored, also I worry a lot as I have a very large retrosternal goitre which is growing downwards and has caused narrowing of the trachea, I have to decide whether I want it removed as it causes pain in the heart area, I read this is an autoimmune and that it can lead to things like effecting the liver and can been genetic as a member of my family had to have a liver transplant because of autoimmune it's causing huge anxiety

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Bumblebee288 profile image
Bumblebee288
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AyrshireK profile image
AyrshireK

How did they establish your diagnosis of Non Alcohol Related Fatty Liver Disease? What are your liver function tests revealing?

You obviously already have a thyroid issue with your enlarged thyroid gland / goitre and the reason behind this could indeed by an auto immune issue and once you have one auto immune condition then it is likely you have others.

They should test you auto immune antibodies, if your liver is inflamed and your markers high they should carry out tests for auto immune hepatitis (a liver biopsy might reveal where the liver is inflamed and could perhaps say whether it is NAFLD or indeed AIH). A positive response to steroids is also usually a test for AIH. i.e. do steroids bring down any inflammation.

IF it were discovered you had AIH on top of your other diagnosis's it isn't the end of the road, AIH is treatable - usually with steroids to start and then the phasing in of an immune suppressant. If caught early enough you can live a long and healthy life with controlled AIH. Even if it is later in the day, it still isn't all doom and gloom. My hubby has cirrhosis due to AIH, his condition never gave any symptoms until he already had advanced cirrhosis. He was diagnosed in April 2012 and living life as each day presents. None (fingers crossed) of the advanced stage symptoms just now. He was listed for transplant in 2014 but ended up recovering sufficiently to be delisted in 2015.

The British Liver Trust has a page all about Auto Immune Hepatitis and if you do Facebook there is an excellent UK an NI based support group on there. Try to keep calm until you 100% know what you are dealing with. AI conditions thrive when you are stressed.

britishlivertrust.org.uk/in...

facebook.com/groups/AIHorgUK/

Katie

Lisa6161 profile image
Lisa6161

Hi Bumblebee. I have a liver problem plus had my thyroid removed, and it's linked to my Lupus. As previously mentioned, these auto immune conditions, can 'tag' onto each other. These are issues that you have to 'fight,' for any in Depth investigation. The quiet patients always go to the back of the queue.

With regards to your goitre, I found my surgery was quite straightforward. The thought of having an incision on your neck, is very alarming. But like you, I had to have it done. I wasn't sore or in pain at all. Swallowing and talking were affected a little bit, for a few days only. Also my voice did not change. I view my body like a car engine!!! Fix what you know can be fixed, and keep the engine running.

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