Another Question

[ZeldaGodoy]

I have been wandering around the internet most of the week after receiving the suggestion I may have auto immune hepatitis. I am a little bit lost because I come from having another illness (pancreatitis) and was wondering if you have many people on this site who have found you in a similar way?

You all seem very supportive and it's lovely to be in such a caring environment but I am not sure if my questions would be a little too out there. My ALTs are ridiculously high in comparison to some of the other peoples (mine were 1171 whilst I was in hospital) and now I am beginning to worry mine are excessive when I read other results from people. I am unsure of what I need to be thinking about when I have my meeting with the Gastro specialist next week but I think now I will be asking what the hell would cause my ALT to be that high. The last time I had a huge reading like that was in 2019 when my Amylase was 2381.

I don't touch alcohol and eat a low fat diet because I have to. I suppose what I am asking is is there anyone who has been through something similar that can give me any kind of idea what I should be looking for? I don't think I could bear to be told that I am seriously ill which by my ALT result I appear to be. I don't know now if I want a diagnosis but can't bear to be told they don't know why I was so ill either especially as they have no idea why I got pancreatitis in the first place.

I guess it's just sinking in and I feel traumatised. When in hospital people didn't believe I was ill because I looked well but looking at this site has just compounded where my health really lies. I thought I was over PTSD from the last hospital stay in 2019 but I'm not sure if I've just replaced it.

Any advice would be welcome. Thank you

[AyrshireK]

Hi Zelda, hopefully your gastro doctor is going to run all necessary tests to establish why your liver inflammation markers are so high. Diagnosing auto immune hepatitis involves a jigsaw of stuff - ruling out the stuff that it isn't i.e. testing for viral hepatitis, ruling out drink involvement etc. then looking at bloods, auto immune markers, potentially (probably) a liver biopsy to check out the liver on a cellular level to see which cells are implicated in the current inflammation and then a positive response to steroids.

The good news with AIH is that it is treatable, usually a dose of steroids to bring down the inflammation (like a fire extinguisher putting out the flames) then slowly weaning from steroids to be replaced by an immune suppressant which will keep the immune system tamped down to prevent future flares. (like a sprinkler system just keeping the embers from re-igniting).

There are members on the AIH forum on Facebook who have had AIH for many, many years and most live pretty normal lives just taking their meds and looking after themselves.

BLT has page about the condition and the AIH Facebook group mentioned has 3000+ members from around the world all of whom either have AIH themselves or like me are supporting someone with the condition. Group is moderated by fellow AIH patients and supported by some of the top doctors in the UK working in the field of AIH treatment and research and you'll get a warm welcome there with people who have been on every stage of the AIH journey.

britishlivertrust.org.uk/in...

Facebook support group at:- facebook.com/groups/AIHorgUK

Katie

[AyrshireK in reply to AyrshireK]

Make sure you tell your gastro doctors everything in particular your history of UTI's. Have you by any chance had a prolonged prescription of Nitrofurantoin for UTI's? Whilst it is a good first line antibiotic and ok in single doses it has also been identified as a potential trigger for some peoples auto immune hepatitis.

Katie

[ZeldaGodoy in reply to AyrshireK]

Hi AyrshireK. I have a long history with UTI. Luckily for me i was treated at the same hospital I am currently at for my Pancreatitis/Liver problems so they should, if they listen to me, have all the relevant information relating to the worst UTI's I had including my hospitalisation as a child due to a respiratory tract infection related to a UTI.

My meeting is over the phone. I have been told the specialist I will be talking to is very patient so I am compiling a list of questions which I always do now because I have a bad memory but i know there'll be others cropping up once in mid conversation.

I previously took Nitrofurantoin for UTI but when researching pancreatitis (I looked into everything as they cannot fathom why I have it) I came across a research paper that mentioned drug induced Pancreatitis naming Nitrofurantoin as a possible cause so I refused to take this. I still get UTIs though so for the last two I had Amoxycilin which is not on the list of drugs to avoid. Yet I still became ill, this time more so with my liver enzymes being raised than my Amylase which raises with Pancreatitis. I have to say my stay in hospital this time was terrible and after 2 days they let me go home without a blood test with only an MDT meeting as a follow up. I had to contact my GP and literally tell him what I needed in way of blood tests and ask for a urine sample to be done. The result; my Gamma GT was slightly raised but no other information and I had a UTI again which is now resistant to Amoxycillin. The alternative medication Trimethoprim has terrible side effects and I refuse to take it because some of the effects include stomach issues, rashes and swellings, none of which I want. I also had to decide if I was to have my vaccination for Covid and again this was left to me to decide as there was no further information regarding this. I'd refused AstraZeneca due to it having alcohol content and L Histidine, a known cause of Pancreatitis (from my trusty list) and opted for the Pfizer. I did have it and am now on the flip side of that.

My UTIs seem to be the only consistent thing throughout these illnesses but I can't remember if I had one on my first A&E visit because it was all such a shock and I've put my discharge summary somewhere too safe for me to find at the mo.

I need the doctors to hear what I am saying, some do and of course some don't but I know with my history of UTIs there may be some correlation even if it is later ruled out.

Sorry for the novel but I am nearly 56 and have spent a lot of my life going through the motions. I had to leave work at various points due to other illnesses (I have CFS/ME and a prolapsed disc) plus I now have arthritis. I can't foresee me returning to a job other than making jewellery which suits me but it may not provide a stable income. After studying for 5 years to change my lifestyle because of my health to now being thwarted because of my health, my patience is dwindling and I'm truly worried about the next steps and what the results mean.

Thank you for your concern and for answering my question and for pointing out that Nitrofurantoin is also a consideration in AIH but I don't feel I fulfil the criteria for AIH and fit more into the NAFLD but then again not completely there either and, as I am already idiopathic for Pancreatitis I am so desperate for an answer whilst fearing it too.

[ZeldaGodoy in reply to AyrshireK]

Hi AyrshireK,

Maybe I am being oversensitive but I haven't really found AIH support group on Facebook overly friendly. The first response I had seemed to suggest that maybe I was a drinker in denial, I am assuming it was because my markers were so high and I'd also been diagnosed with Pancreatitis too. It did annoy me because the person doesn't know me. The second response was much more helpful. I am also part of 2 Pancreatitis groups and a UTI group. I am desperately seeking answers. I will look for the BLT Facebook page.

I am used to fighting an uphill slog. I have Chronic Fatigue Syndrome (ME) and lost my job because of this. I had to constantly fight HR and a very nasty supervisor whilst being very ill and it made me worse. I am now not as tolerant of people as perhaps I should be so if I come across as blunt, bordering rude I apologise now.

What is perhaps the most annoying is when your doctor of 23 years tells you your Gamma GT is slightly raised then brackets (?alcohol related). I think if there had been any alcohol related issues over that 23 years then yes I could understand it but the only relationship he knows I have with alcohol is the 2 bottles I give him at Christmas. I am in fact teetotal, I'm not into self inflicted pain and previous to half a glass of wine in 2019, I hadn't touched alcohol for 15 years or so (except in food) which I now avoid at all costs. I have given up fats for the most part and am not diabetic although it does run in my family; I do have a sweet tooth but they seem to keep brushing over that, however I am trying to give up sugar, I really only have a teaspoon on my cereal (opting for pure sweets) my downfall though is mints.

I've even wondered if I could have heavy metal poisoning being that I work with copper at times but I don't work with it enough to warrant it. I will mention this at my meeting in August.

I don't really fit into any one category and I think that's why I'm idiopathic with my pancreatitis, they kept telling me it was a rogue stone but after three years I think even they don't believe it. Now it's affecting my liver I am more worried, two serious conditions after years of standing on the bad health side lines. I worry for my partner and sons and what happens if they can't find an answer. I do worry about the financial side too as I was earning good money but had to give up work and now I am overqualified with a bad track record, I'm doubting I'll find much to suit within the next 11 years before I officially retire.