Help, need a bit of advice and support... - British Liver Trust

British Liver Trust

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Help, need a bit of advice and support......

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I ended up in hospital in December 2015 with very deranged liver readings and feeling sick.... Kept in local hospital and all they did was blood tests every day until they finally moved me to a liver unit in a bigger hospital many miles from home.... I had biopsy there and straight away put on steroids as I had very bad inflammation. They sent me home once they saw my lft's were reducing...... However ended up back in again as my lfts started to raise again.... My liver was very sick with alt in its 2000's and bilirubin 350 or higher...... So they gave me intravenous steroids as a last resort as I was possibly facing a liver transplant...... This helped me thank God and I got home after almost 3 weeks.... Having 4 children and being away from them and so sick especially as it was Christmas was terrible.....

Anyway for 8 months I was stable. Bloods were great and I got reducing my steroids as another biopsy revealed only minimal inflammation. Dr's at this point were ruling out Auto immune Hepatitis.

Once I got to 1mg of steroids I took a virus and my lft's started to rise again. Have had abnormal Lft's since Dec, a few weeks going up and then coming back down.... However last week my consultant rang me as he was concerned my Alt was 121 and has changed his mind about the AIH.... He thinks its looking like i do have it.... Asked me to up my steroids to 5mg... and wants to add in azathophrine........

This week my alt went down to 93 even before i started upping my steroids.......

I am not convinced I have AIH. I've never shown any of the markers and my biopsy didn't show much.... I think because I've had a wee blip that their going to treat me like I have it anyway...

I'm so scared of going on that new medication. I've been on steroids for over a year and was nearly off them....

I've not went back to my work as I'm a fitness instructor with my own studio, and just don't have the same fitness anymore....

I am so down with it all.... My youngest child is just 2......

I'm currently seeking a Naturopath to help me as they believe on fixing things from the inside not just putting a sticky plaster on things by medications.

I feel my case is just unusual and they don't have enough experience....

What should I do?

Currently on 5mg of steroids, vit d, minerals and taking wheatgrass. Have been told that cutting out dairy, wheat and sugar will heal my body naturally....

I just don't think theres enough knowledge over here in Northern Ireland.

Thanks in advance, and sorry for the ramble lol, I feel I'm just hitting a brick wall!

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Millie09 profile image
Millie09

well I think you have been through enough and about time there was a confirmed diagnosis. I have found over the last two years since discharge from hospital I have been left. don't have any tests done apart from LFT bloods. well.that all changed last November as I was not feeling well .I have cirrhosis of the Iver caused by alcohol.well they found in was vertu low on vitamin d so I was on an intense course for 6 weeks and now on one a day for life. I then demanded I be seen by a hepetologist of which it took 3 months but I have to go to my hepetologist on 28 Feb. your alt levels are higher than mine have ever been and I would go with your gut instinct as only you know your own body and how you feel. if we don't push for answers we get left. hope thdy find out what's wrong. try not to worry. we are all here for each other on this group.

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