Hepatitis and the future moving forward

[Miche49uk]

Hi folks,

New here, I fell apart recently and drank copious amounts of alcohol (PTSD related), the long and the short was thanks to a local alcohol support person he got me in hospital having turned yellow!

Whilst in hospital I had a Ultrasound and daily blood tests, obviously I had/have alcoholic hepatitis, my bloods at one point weren't improving so they started me on prednisolone (40mg), then things improved and after 3 weeks I came home albeit with slightly yellow eyeballs!

I then had 2 x blood tests shortly after coming home on 30th January, after a good few weeks I started to eat ALOT and had a lot of other symptoms and having looked up steroids I called the hospital and went on to a reducing dose, reducing by 5mg after 5 days (now on 5mg as of today). I have enhanced anxiety, dizziness still, itch here and there but historically had dermatographia, I am 49.

I saw a general medicine consultant this last Monday, he arranged for a full liver profile blood test, also wants a fibroscan done, I know in hospital they mentioned fatty liver post the US. Every day the consultants put the fear of god in me telling me I wasn't out of the woods, 1 in 3 can die, etc... I was really scared and to be honest I still am.

Haven't drunk a thing of course since I went into hospital (10th Jan) but to be honest I have scared myself more googling things.

One of the questions I asked this chap was doesn't hepatitis stay in your system forever but he wasn't convinced for me. I saw him look at the last blood results taken on the 28th Feb and ALT was 175 and bilirubin he wrote down as 36. I think my main fears are of something suddenly going very wrong, my anxiety is such that I cant leave the house now but as mentioned I am aware and he confirmed that being on steroids can increase this.

The really annoying and strange thing about me is that provided I am not stressed to the nines I am usually fine and don't drink at all, this was bad, I had no idea PTSD doesn't really go per se as I had had therapy post a rape in Feb 15 when I developed PTSD a few months later. I didn't see this coming this time, BUT my Mum who I cared for andlived with, died last July, then I moved us all last October as I couldn't bear the memories, then as soon as I moved I started a new job but they treated me like dirt and were extremely unethical so I left (I still have my own business albeit a tad dormant at the moment whilst getting better)... so a lot went wrong and it was after losing this job, which has caused major financial struggle now, that I lost the plot, this was November, I stopped briefly but when my partner said he was never coming back plus he had my daughter, I lost all hope and fell back down again...my goal is abstinence forever. I have GAD anyway so that in itself makes it pretty dumb to drink.

I am petrified of the Fibroscan, I am due to go and see him again 30th May, but its the what ifs, the what if it isn't fatty liver, what if its cirrhosis, what if the scan is awful, what if the blood tests don't improve now I'm coming off the damn steroids, I am full of what ifs!

I know, in hospital, the consultants were all saying that provided I didn't drink id be fine...but equally they were doom and gloom in terms of making it sound, at times, like I wouldn't make it so obviously I was getting very mixed messages.

I am not yellow at all now which I assume is good and at the meeting Monday he discontinued the Ranitidine for my stomach. So now on Thiamin 2 x a day, vit B compound and as of today 5mg of prednisolone. My goodness I have never eaten so much...

And..my partner did come back, I have heaps of support from outside agencies which is really good and helpful. Has anyone else been on steroids and had increased symptoms such as anxiety, vision affected, itch, dizziness...?

I don't really understand how this consultant is saying the hepatitis may not be forever..in fact I just don't understand anything really except that I am lucky to have got through this.

Anyway, nice to be here Just wish we were all here for happier reasons.

Michelle

[Miche49uk]

oops just realised as I have read a post to the side, that I shouldn't post medical blood test results sorry!!

[RodeoJoe]

I think the Dr's right in saying that the Hepatitis won't be there forever, you might be thinking about Hepatitis C which will likely stay forever unless treated with a course of very strong drugs. Hepatitis is a word used for inflammation of the liver. Yours was caused by alcohol and can get better.

I'd be encouraged that they haven't mentioned cirrhosis as this tends to be irreversible even after lifestyle changes. Of course there will be many what if's, but to avoid all the anxiety try to live one day at a time. Be good to your body, make sure you don't drink and take any more bad news only if it comes.

Honestly, in many ways whats happened to you is a blessing. You stressed your liver to the point that it temporarily had a flip out, you can put this all right. Many people with liver disease don't know anything about it until it's too late.

Also as you probably know the steroids will give you a massive appetite, it's important to restrict yourself.

It sounds like it really is up to you now!

[Miche49uk in reply to RodeoJoe]

Thanks RodeoJoe, for your response.

Yes it was a very large wake up call,and very very scarey. I still don't like looking in the mirror in the mornings in case I turn yellow again!

I am not afraid to remain abstinent it just scares me that when the PTSD symptoms returned I don't even remember going to buy alcohol (I was sober obviously)...so I am being very self aware especially at times of higher stress.

I have never eaten so much as with these steroids. It wasn't like that initially as everything tasted horrible, I really struggled to eat in hospital, had to drink these protein supplements that thankfully I liked. Now I eat for England but I do try and cut back on garbage...not always easy.

I seem to have developed a wrap fetish, I literally eat wraps daily and have this daft idea in my mind that a wrap is better than a sandwich because of no butter...forget thhe cheese and coleslaw....sigh...

Thanks again,

Michelle

[Hidden]

Hello Miche49uk, hopefully this episode has given you food for thought, but in a good way. Sorry to hear of your reasons for getting to this point in your life. Firstly, as someone who has reached this stage by means of alcohol, you do have the ability to restore the health of your liver, although only the doctors can tell you the extent of the damage and thus the ability to return to better health.

I belong to a group of people on Facebook with a different type of hepatitis (not alcohol induced, so I am unable to give you specifics regarding improved health), many of whom are on steroids and they too have experienced raging appetite, but also increased anxiety. Bearing in mind the reasons for you getting here, I would think it wise to ask your doctor for some type of counselling. CBT could be beneficial to you. I have used it for the anxiety and found it very useful.

When on steroids I made and ate a lot of soup on order to avoid the weight gain. It was very difficult to ignore the food cravings, but after several weeks (or months - I can't remember) my stomach got the message. I know a few people join a weight watchers type thing to deal with this (some people can be on steroids forever).

Try and tackle one issue at a time. Make a list of questions you want to ask the doctor/consultant and take the list with you.

Many people in my group do have cirrhosis and have lived with it for a long time, so a diagnosis of cirrhosis does not have to be doom and gloom. You might have to go on meds for life, but I can't really say since mine has been caused by my own body attacking my liver, hence not knowing specifically about your situation.

Take heart from the fact that your partner clearly cares about you very much and has come back to support you. Secondly, you have someone who supported you enough to get you to hospital. Also you have support from agencies.

Dr Google is only really helpful when you know what your condition and you want a better explanation than the one you got from the docs/consultants. Otherwise steer clear of Dr Google!!

All the very best, and I hope you get the answers to your questions.

[Miche49uk in reply to Hidden]

Hi MC,

Many many thanks for your reply, I am down to 5mg a day on these steroids now for 5 days then hopefully that is it but my goodness anxiety levels whilst reducing have been awful, that horrible out of nowhere anxiety that can be so debilitating.

As for food, having weighed myself today and now reducing the steroids, clearly my body is working differently than when on 40mgs a day as suddenly I am gaining weight fast so perhaps my poor liver has to work that much harder now.

I am therefore really watching what I eat now, soup sounds a great idea. I lost a stone in hospital so I am not panicking but clearly now some life changes need to take place.

I am awaiting CBT based therapy for bereavement and equally attended an alcohol support group today (SMART), which incorporated CBT and the ABC model. My goal is definitely abstinence, I am not going to even entertain the idea of 1 drink, it's just too risky now and indefinitely...

Dr Google is soooooo dangerous, I can literally end up thinking about funeral plans!

I had my fibroscan date through today...7th July so I guess they aren't exactly panicking at the hospital, it has actually made me feel relieved as I wont get anxious about something so far away.

I need to learn to give myself a break, be kind to myself, and I have been very humbled by the whole thing really...I am certainly lucky to be here.

All the best to you too....

Michelle

[Hidden]

Hi Michelle, sounds as if you are taking a very positive and proactive approach- good for you! Giving yourself a break- women are notoriously bad at that, but maybe book yourself in for a pampering treatment to give yourself something nice to look forward to. Episodes like this can really make you look at life differently and re-evaluate what is important. The fibroscan is just a number and will literally take few minutes at most. It will tell them the extent of scarring or otherwise. I really hope all goes well for you. Hopefully people who have been in your position will see your post and say something enlightening to help you. After reading Dr Google and experiencing some dramatic episodes associated with my health, I too have thought about funeral plans. It's what women tend to do I think, plan for the worst, but hope for the best, so you're not alone

Good luck and keep us updated

[Miche49uk in reply to Hidden]

Hi MC, you are right, giving ourselves a break always comes second to something else! Thanks for the heads up regarding the Fibroscan. I guess whatever will be will be....I know a consultant the day I was discharged said "you haven't got Cirrhosis" but in my mind I thought to myself how does she know... I don't mean that pompously I mean that as I had only had daily blood tests and a US I had always assumed a biopsy or indeed Fibroscans now, are the only true way of knowing that.

I have a stinker cold and cough now, I think the meds mess with immunity. I really try not to scare myself, it wont help.

At the weekend I am baking with my daughter (10) we are doing a dummy run of cake baking from scratch as her school would like cake donations on Friday so that will be fun. The most therapeutic thing for me is being with her.

I will indeed keep updating here & thanks again,

M

[Hidden in reply to Miche49uk]

Hi Michelle,

the blood tests have specific markers that indicate hepatitis or not as far as I know. It is true in my case anyway. When these markers are elevated, they indicate that the liver is inflamed. i.e under attack. The US will usually pick up scarring or fibrosis and it is only if they deem the scarring severe enough or need to confirm a diagnosis (such as AIH in my case) that they will order a biopsy. Biopsies are the final confirmation, but only done if necessary, since there is an associated risk attached to having them. If they can diagnose without doing a biopsy, then they will. The fibroscan measures the elasticity of the liver, which is what helps them to determine the level of scarring.

The cake bake sounds like fun, if not a little messy, so I hope you have a great time. Being with the kids doing fun stuff can be very therapeutic.

Have a great weekend (cold allowing) and all the best

[Miche49uk in reply to Hidden]

Thanks for explaining that, hope you have a fab weekend too!

[briccolone]

hi Michelle,

if you have alcoholic hepatitis it's not permanent unless it turns into chronic hepatitis. That doesn't appear to be the case from what you say. Meanwhile stay off the booze and look after your diet and things should come good...

[Miche49uk in reply to briccolone]

Hi Bricolone,

Thanks for your message, no idea if it was chronic, I know they kept saying things like 1 in 3 day from this, you aren't out of the woods yet, nice scary things that I guess they have to say. I do remember that the US had shown a fatty liver with a bit of something else, goodness knows. I also know that I stopped getting better and that is why they used steroids.

I am quite into alternative remedies but I asked the consultant on Monday what his view was regarding Milk Thistle and he blasted it out of the water stating not enough trials have been done. My view is that there never are many trials done on something herbal but that doesn't mean its bad. However on this occasion I wont risk it I guess.

Lemon and hot water it is then and red things of a healthy nature.

Best wishes,

M

[briccolone in reply to Miche49uk]

well none of us are out of the woods really....! re milk thistle-I tried it a few years ago-no benefit as far as I could see but at the time it had a bit of a placebo effect. There are benefits to eating artichokes which is the same family as milk thistle. Artichokes a liver friendly food but not a supplement.

AS far as alcholic hepatitis is concerned it can take a few weeks for it to get out of the system. Just take it slowly you should see an improvement. Best of luck.

[Miche49uk in reply to briccolone]

Thanks Briccolone, I went into hospital on the 10th/11th Jan and escaped on the 30th January so been out a while now. One of my legs is still semi-numb at the top, I must remember to speak to my GP Monday about that.

Other than that and a icky cold and anxiety I am not too bad really, yesterday was a good day, I have noticed every time I reduce the steroids after a few days anxiety is high but I am hoping that once I stop them it will settle down, haven't had anxiety like this since I was a teenager!

I can't help feeling that they put fear in people where it is alcohol related in order to help ensure that person wont do it again, it's all I ever kept hearing in terms of leaving there "what will you do when you get out, that's our concern, will you drink"? No I wont !!!! I tried desperately to explain that I have never been a daily drinker, don't crave alcohol, get no urges and that it was PTSD linked but they just look at you as if you are fibbing!!

Well I haven't drunk, I don't crave alcohol and have absolutely no urges... all I want to do is carry on with life and recover, I would have to be utterly bonkers to drink. I am extra vigilant of PTSD symptoms though as they crept up on me at an alarming rate...it is only when you look back on things that you think "hmm yes actually I was more irritable, quite withdrawn and a tad irrational weeks before I drank...so my key is to spot changes early".

[briccolone]

good for you-onwards and upwards...

[Miche49uk in reply to briccolone]

Update today, saw my GP, he managed to pull up the blood test at hossie a week ago, my ALT is now 87 from 175 on the 28th Feb and Bilirubin now 17 from 38 with all other levels fine except I've very very low Vitamin D so on pills for that now

Happier than I was he said coming off prednisolone so fast is definitely a cause of lots of these symptoms but in a few weeks I should feel heaps better

[briccolone]

excellent

[Miche49uk in reply to briccolone]

Thanks Briccolone, dread to think what my levels were in January 😳 So I'm not going to!

[Miche49uk in reply to Miche49uk]

6 months ago? I forgot about this thread my memory is shocking.. so 6 months down the line, blood tests all normal since end of May although have one tomorrow its to check my Vit D levels have got better, off the Vit B totally, a further Ultrasound in July was completely normal and a Fibroscan today was 5.3Kpa and I also note on my medical records it seems to now say acute alcohol related Hepatitis from January... so judging by the positivity of the nurse who did the scan today I hope the consultant puts it all together and says all is good.

[Dd4560]

Thank you Miche48uk for the amazing story and wonderful turnaround. Shows the resilience of the liver with cessation of alcohol.