Chronic active hepatitis in my youth

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hi, I need some advice, I am a 50yr old woman, when I was 13 I was diagnosed with TB, I was successfully treated but my mother was still concerned about my ill health, in 1984 after a routine blood test at Heath hospital I was called in for further medical investigations as a inpatient,  I remember doctors calling me the mystery patient on the ward, after a month in hospital & a whole load of various tests the doctors introduced me to a liver specialist who asked for a liver biopsy, that confirmed I was suffering from chronic active hepatitis, I was put on steroid prednisone treatment for 5yrs, then azathioprine was added to the steroids for another 6/7 yrs, my medication was slowly reduced in the late 90s & I was told my illness was clear & I was discharged from the liver clinic.

Over the yrs I have regular blood tests, liver function tests at the gp's, i have been told my bilirubin is high & white blood platelets are low but it's normal for me, I been diagnosed with under active thyroid & vitamin d deficiency through the blood tests.

in the last 5/6yrs the discomfort/pain in my upper right side has increased, sometimes it's so bad it hurts even to breath & wakes me up in the night, doctor has sent me for a ultrasound a few yrs ago with a suspicion of gallbladder, my bowel was clear but the radiographer did mention my liver was looking a bit "furry", my gp referred me to the urology clinic & I was seen by a nurse at the Heath hospital a couple of times, the nurse had some blood tests done & informed me that nothing was showing up in blood tests, I explained to the nurse that originally in 1984 the blood tests weren't showing anything sinister either, the nurse told me that she could only see my medical history as far back as 2003, she didn't do a physical exam, the consultant came into the room, asked the nurse a few things & I was discharged from the clinic.

since then I have been coping with the pain, I have small round dark bruising on my arms & legs, sometimes on my stomach too, the pain travels up to my right breast & around to my upper back but affects my whole right rib cage.

i feel like a total hypochondriac going to the doctors trying to explain my symptoms, not sure how to proceed with this, if anyone has any ideas I'd be very grateful, does liver damage always show up in liver function tests? The last ultrasound I had was inconclusive as I was told the bladder was in the way.

thanks in advance

 

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    Hello! It's sounds like what you are describing is now called Autoimmune Hepatitis or AIH. Damage is usually only picked up on blood tests like high ALT etc, but your bilirubin shouldn't be high! Sometimes those in biochemical remissions (people with AIH who no longer have deranged liver enzymes) can still suffer from liver damage if their liver is still inflamed which can only really be checked with a biopsy again. They should also really be checking your immune markers and things like GGT. I'm surprised they're not keeping more of an eye on you. Most people with AIH go through a relapse of liver disease at some point after remission and this can be years after meds have been weaned. rolleyes Drs are generally pretty ignorant about AIH because of its rarity but I really would go back to your GP because you could be suffering from liver damage without knowing. sad If you are on Facebook, there is a great page called AIHorgUK filled with knowledgable people who will be able to help more than me! Best of luck, Finn

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    • Posted

      Thank you Finn, I don't go on Facebook that often but will check it out, I feel a bit silly going back to my gp as when I'm explaining my symptoms doctors/nurses just look at me with a vague look & I end up feeling like a hypochondriac 😳, Like I said earlier they always say the high bilirubin is normal parameters for me & with the NHS cuts etc, i feel like im wasting time/money that could be helping other ppl 😐

      Khald

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    • Posted

      Hi Finn, thanks for posting. I've been seeing posts about autoimmune liver hepatitis lately and wondered if my condition falls into this category. I'll check out the page you mention. I've been dealing with toxicity for decades and have found pharmaceuticals to only add to the toxicity. So I've had to be treated for virtually everything with natural medicine for most of my adult life.

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    • Posted

      You are not wasting time or money or a hypochondriac at all! AIH can be so serious if left to tick along and I can't believe they're not taking you seriously. A third of AIH sufferers are already at the stage of cirrhosis when they are diagnosed. Without any concrete rise in LFTs it's understandably difficult to be taken seriously but they should at least be listening to you. I'm really sorry you've been made to feel so rubbish. Honestly, the group is great. There's also a website for AIHOrgUK- not sure if they also have a forum on there.

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    • Posted

      Hi Catherine. AIH has some very specific parameters for diagnosis. There's more in the attached article if you're interested. AIH is almost always treated with corticosteroid treatment like prednisolone/prednisone/budenoside and maybe tachrolimus or cyclosporin if those avenues fail. It's normally accompanied by or replaced by immunosuppressant therapy with azathioprine or 6-mercaptopurine which are cytotoxins. There is really limited conclusive data on natural therapies to treat AIH, and most hepatologists from what I can gather will advise against them used instead of the steroid/immunosuppressant treatment (though I've heard anecdotally that some people have maintained some slight added stability alongside drugs with a change in diet). But anything helps, eh! The way that the presenting liver issues react to steroid treatment is actually one of the defining characteristics of AIH (they tend to improve). Anyway, Sorry for talking your ear off. Also sorry you've been exposed to such horrible toxicity. AIH can be triggered by drugs or chemical exposure, too. I hope the article helps! It's a bit wordy but very comprehensive. https://www.aasld.org/sites/default/files/guideline_documents/autoimmunehepatitis2010.pdf

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    • Posted

      Hi Finn, thanks for the info. I'll check it out. I have such a history of autoimmune disease following chemical exposure decades ago, I really don't react well to pharmaceuticals because after all, they're just more chemicals. Seems like this is yet another autoimmune disease that they really don't know much about and have a protocol they use but my feeling is that autoimmune disease results In a very delicate system. So blasting it with steroids and immunosuppressive drugs is more than likely a "fix" for some sort of relief, but at the cost of the whole system. Have you experienced long term side effects? Any related health problems? Other immune issues? Gut problems? Hormonal imbalances?

      It's certainly something to consider. I'll check out the link.

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    • Posted

      Hi Finn, I checked out the article. It was very informative and although most of those tests were not widely available when I had acute symptoms, the existence of chemical exposure with the vomiting alone is enough to make me suspect liver issues even back then. I do believe the symptoms  I was having would now be classified as AIH. 

      I was was treated by an immunologist with IgG and by another specialist on chemical sensitivity with supplements. All of this was slow to work, but after about five years, I could keep meat down, finally! From there, I read tons and have treated myself with diet, cleansing and supplements, as IgG treatment is very expensive and not always available. I've had many autoimmune issues with varying remission over the years. Particularly thyroid disease (also autoimmune), as the chemical exposure (I has) is known to interfere with thyroid function.    Though I could never explain the vomiting and felt is was liver related rather than thyroid.

      Also 5 years after the exposure, Avery large compound cyst was found on my thyroid. Doctors did not advise treatment for this. And after more cleansing and dietary changes, as well as weightloss, thy hypothyroid symptoms went into remission, though the cyst stayed. I had ten years of remission, though still never had great energy levels, until the thyroid cyst got really out of control. This happened to coincide with several nuclear events in or affecting California. 

      Several years in in useless thyroid meds nearly killed me. Meanwhile docs actually got it together enough to find a spot in my liver while I was having gallbladder pain. I dealt with this by more cleansing. The liver function still feels sluggish, as I feel toxic all the time. So I've been doing a lot of vegetable and green juices, made fresh at home, to help gently cleanse. There are other cleanses I do when I can tolerate. But the juice along with activated charcoal or turmeric seems to be pretty gentle while still kicking out a lot of toxins.

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    • Posted

      I totally can't even imagine what you've been through but I worked in a chemical lab for years too and always wondered if it had any effect. We had some lovely beauties- phenol, benzene, bromine and sodium dichromate to name a few! Interesting but deadly!

      I've developed insulin dependent diabetes, but I'm not convinced that's as a result of steroids. Mostly my disease is very poorly controlled, although that avenue I describes works perfectly for around 85% of AIH sufferers I think. I'm actually in hospital as I write this with my ALT over 500. Haha.

      AIH is very rare, it's true there's very little research that been done on it since the 50s/60s. There are roughly 7-8,000 people in the UK with the disease and about 60k in the USA maybe?

      We need more clinical trials!

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    • Posted

      I can imagine that in the USA AIH would be very expensive to diagnose!

      There was actually a discussion recently about the use of tumeric and whether it's good or bad for AIH in the AIHOrgUK group, but I'm afraid I can't remember the outcome. Also seen a lot written about milk thistle generally being used for liver complaints but people have heard mixed advice from hepatologists.

      When I get a flare of abnormal LFTs the first thing to go is usually my appetite in it's entirety for a few weeks/months. Then toilet symptoms and upper right quadrant pain under the ribs. Debilitating constant vomiting/intense nausea. Being worn out. Then finally the jaundice, itching large spleen and poor blood clotting. From what I've read from multiple people's stories the disease is highly idiosyncratic but I hope that helps somewhat.

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    • Posted

      Bromine. I worked with many chemicals also, but the ones I feel were most harmful were the brominated ones.   Holy cow! Thanks for posting! 

      I worked in in a biotech lab. IEF, Eliza, all the usual stuff. So yes, tons of reagents.

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    • Posted

      I e been taking turmeric along with the juicing for the detoxing. The juicing pulls the toxins out, but then I get all itchy and burning and red. So then I take the turmeric and charcoal and it seems to soak the junk up long enough to get out of my system.
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    • Posted

      As for milk thistle, I've never been able to tolerate this herb. I can tolerate most herbs. Just not this one. I once read that certain blood types (including type O) do not do well with milk thistle. 

      I also do do not do well with goldenseal.

      i suspect these herbs are from flowers, which is why they tend to trigger the immune system. Or maybe, I was just so toxic when I tried these that I was unable to tolerate the detox.

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    • Posted

      Honestly, I think it would be worth your while joining the group. There are some people on there who talk about less chemical ways of supporting AIH. There's also a different FB group for AIH used by a lot of people from the USA which might be helpful (I can't remember what it's called but it has a LOT of members).

      Bromine is definitely awful. I nearly topped myself by stupid mistakes through inexperience so many times (until I got a lot more experience and fear/respect of chemicals)! Once I was carefully pouring Phenol and it accidentally spilled and ended up dripping from the workbench onto my legs through a pair of tights just under where my lab coat ended. Another time I made some NO2 and the fume hood wasn't strong enough and I could taste it from breathing it in. Another time someone left an unknown clear chemical which looked like water to be cleaned up and mixed with a small amount of warm water it dispersed into the air. I never found out what it was but the oxygen was choked from my lungs despite breathing and I couldn't get into the lab for HOURS. I suspect some kind of solvent.

      Definitely learned the hard way. Needless to say I'm a lot more careful in labs nowadays. Haha.

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    • Posted

      Yeah, I was out of the lab after that exposure job. Had severe chemical sensitivity. No going back- ever. Should have gone on disability straight away, as I've never been well enough to work a real job and have struggled... Oh well. I'll check out the FB group.

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    • Posted

      I'm so sorry to hear about you not being well. It does suck. sad I tried to retrain and do more research in microbiology/water pathology last year after having to leave my job but had to drop out because of jaundice etc. Funnily enough, they also weren't mad keen on an immunosuppressed person working with stuff like cryptosporidium! Anyway. I hope things work out for you eventually. Best of luck, and maybe see you on FB! smile xx

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    • Posted

      PS- in a weird way, I'm glad to know others have had similar problems. I wonder how many others like us, have become sick our entire lives from working in a lab?

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