Autoimmune hepatits

[Silvergilt]

Well this hasn't been a very fun day! Back from my rheumy appointment in which my bloods were reviewed and apparently there's a raised indicator of my liver not functioning properly, and I'm off back to the GP to have a word or two about more tests - along with discussions about trying to get some tests done for back pain and potentially for blood pressure which has been slowly creeping up over the past couple of years.

I'm a bit concerned I'll get another 'everything is fine' speech (I've wondered that my blood pressure was getting high but all I seemed to get was a pat on the head...until today, that is, and now I suddenly feel guilty I haven't been trying to do something about it). But I've been having symptoms for the past year which has made me wonder - itching whenever I have a pint (so I pretty much stopped drinking entirely last year, wasn't worth it), lack of appetite to the point I sometimes don't eat for two days before I force something down, incontinence and darkened urine, (and I've flagged that one before but was always told I just needed to be more hydrated). I've noticed my stomach getting bigger as well but as I'm always getting the 'lose some weight' speech I figured it was just weight gain.

Now, I know that the borders of 'fine' and 'not fine' tend to have some really wide variables of interpretation, but I've never really experienced this kind of thing before. If I'm having liver trouble, is there anything in particular I should try to avoid? I cut coffee out ages ago, but admit I've been drinking a lot of tea. Food is such a struggle - I literally don't want to eat anything at all.

I'm usually a pretty healthy person (considering!) and try to eat right and take my supplements, no junk food in the house, etc. But I can tell there's something wrong, and maybe I'll get treatment for it, but I also want to try and do a bit of self-care in addition. There must be something else I can do.

Thanks in advance.

[73snoopy]

Hey, what a day you have had ! It sounds like you are doing the right things. If your liver isn't breaking down things as effectively as it should, that can show as itchy skin as the bile salts get excreted through the skin. Cutting out anything like alcohol that is metabolised by the liver,was the right thing to do. Also reducing salt as much as possible may help, and watch your vit a intake too? They might scan your liver which would help and if it's enlarged may account for weight around your stomach ? I am not an expert but have had experience in this and hopefully your gp will help.Nothing is straightforward with lupus is it? Hope you get sorted soon and feel better x

[bluebell99 in reply to 73snoopy]

I was diagnosed with this about ten years ago. I took large doses of azathioprine and it helped a lot. My liver function tests are all still out of range but I feel a great deal better. They have settled down and apart from the odd raised blip I take no notice. I do have new GPs in my Health Centre ring me in a panic and demand repeat bloods, so I ask them to look back at the previous few blood results and they are generally in agreement that they are "normal" for me. They are unlikely ever to get better.

I find that I cannot eat a lot of pastry or fatty foods, but that might also be my age Tea and coffee can sometimes be a problem, it just doesn't taste right. I have weak squash or fruit tea instead.

I had my gallbladder removed, along with the many stones, and that helped somewhat with the LFTs, it may be worth enquiring about an ultrasound.

I do get asked if I have a drink problem, which makes me a bit cross as I drink less than 2 units a week, balanced over a year. When one rheumy looked at me sceptically I hotly replied "I was not in denial either!!" He did have the grace to look abashed!!.

You need to keep your fluids up, not only for your liver but for your kidneys as well. Be careful with painkillers like paracetamol, also some other medications which may make you feel unwell and your results worse. If you notice a yellow tinge to your skin or the whites of your eyes then you need to see your GP urgently.

Really it is a case of trial and error and it may take many months to get the balance right. I was lucky in that I avoided having a liver biopsy as the azathioprine worked.

Hope this helps.

[Footygirl]

Hi Silvergilt

I have AIH too. I had jaundice for four years in the summer. You have any yellowing of eyes, skin?

How I remember how ill I became. Doc tested for all the Heps and was puzzled until I attended a GP appointment in a really screaming yellow. My bum had hardly hit the seat before I was ussered in. I noticed some scary eyes following me.

My first awful symptom was such terrible itching under my feet at night. I was on holiday and had to try to keep two cold facecloths on my feet if I wanted any sleep. Bizarre. As I say it took years before further tests as I got more and more ill each summer. The final bloodtests made my GP go pale and he ushered me off to hospital. The GI consultant had never seen tests with such high results. I was put on steroids and Azathioprine. The steroids did the trick and I have only had one increase in medication (Az) in 13 years.

I do sympathise with you. I lay on the couch for months each summer not drinking or eating, just barely breathing.

I was diagnosed by Gastro as AI hep. I continued with the usual varied symptoms and diagnosed myself with Lupus. I got thrue to doc eventually even when he shook his head and said " but it's very rare" (!). He did the fbc and lfts and ana test. Ooh look, Lupus!

Oh the other hepatitis symptoms of wee like strong tea and very pale greyish stools were other first symptoms. And then came the itching! Oh man that was enough to make you scratch, when you had the energy.

The liver falls under the title of the Gastrointerologist and you should be referred to him for ultrasound (same as baby one) no side effects and liverbiopsy which is an odd thing. Local anaesthetic and bit of a punch in you side and that is all to that. These are both diagnostic and I am a little surprised that you have not been referred on.

I now have a GI appointment every year and Rhuemmy one yearly too although the Rheummy has me have a once monthly blood test for all tests plus lfts for my liver and because I am on Azathioprine. Recently I have felt as though my liver has swollen, but 13 years on why not?

If I attempt to have a glass of wine with a meal, my first mouthful goes straight to my feet, would you believe, and the itching kicks straight in! So yes, apart from the very occassional sip of champagne at significant family celebrations, I too am tee total. If I feel peeved, I make myself remember that couch, months, just breathing.

I am so sorry that you are feeling so awful. I empathise.

My wonderful hubby was forever cooking any tidbits he thought I might try. The day I raised my head and went, hmmm food was a day of great celebration to those with energy.

I would try to see a different GP if you belong to a practice. Spill it all, all your symptoms, how bloody awful you feel, how you have tried to help yourself and that after all this time, no one has done anything for you. Try for referral to a GI specialist as the liver is part of the digestive system. Ask also for the ANA blood test.

The only food I have been put off is coconut milk for curries.

Luckily I have been stable for some time and though I have Diabetes, Menieres Disease, and the dreaded fatigue which does take a long time to adjust to, I feel lucky that my flares are now and then, not for months.

I urge you to gird your loins and to get another appointment and tell them how it is buddy.

I am sending positive vibes to you.

I do not profess to be an expert except for my experience, which is so close to mine. Do stick in there. Take great care

Footy

[Silvergilt]

Thanks to everyone for replies. I've scheduled an appointment with my GP next week. I tend to not really notice anything is wrong with me usually, which doesn't help when I try to raise issues. I'm what the US south would call "high yaller' colour anyway, but now I've thought about it I had to change the colour of my makeup foundation recently because it made me look a bit orange. I'll definitely see if I can get the GP to give me something definitive; I don't want to be patted on the head and told not to worry, I want to know if there are issues, and I've always found the 'softly-softly' approach in medicine here rather frustrating.

So I will do some deep breaths and try to hydrate more (the water here is so hard calcium deposits build up on the soil of my houseplants, so I'll have to figure something out to filter it), and then we'll see if I will get anywhere. Thanks!

[kimc]

Hi, last year a time that I felt very tired of not sleep well and itchy all over my body. I called my rheumatologist and had my blood results of hight sugar instate in my liver, doctor suggest to not drinking at all and cut down sugar instates even fruits are natural sugar for two weeks and retest my liver. It was from 240 down to normal as 84.

I read about the liver filts trade your body. When it can't clean your body well, it actually can damage the liver in the long run. Helping liver to not working so hard by cut down sugar and drinking more water to helping liver clean the body better is very important. Now if I have a drink, I drink 3 or 4 bottles of water to help my liver to clean out my system, I can tell if I don't, my body becomes warm and itchy. I always a big drinking water anyway...

I was there and know how frustrating you are...So, good luck.

[Silvergilt]

Well this went well....

I really know I should just give up on this GP, as the only thing he wants to talk about is my weight. Every single thing I have is because I'm fat, from blood pressure to fibromyalgia to my arthritis. Losing weight will cure everything.

I went in to discuss blood pressure and there was no cuff for my arm that would fit (never is), and the raised protein levels was fobbed off as a possible side effect of medication (note this GP had never heard of the stuff I'm taking before, I had to give him a leaflet). Cue the habitual lecture about weight, and about changing my 'eating behaviour' by going to a health coach- again, WHY do people assume what my diet is without asking me? ? My issue is I barely eat, a health coach isn't going to be able to do a bloody thing - and I did actually call her and tell her I am a former bodybuilder, she said she felt a bit 'intimidated' by the fact I knew more about nutrition than she did.

Welp. Nothing was taken seriously. And until I lose the accepted amount of weight, it probably never will.

I'm so done. I think I'll just give up on trying to check up on symptoms - I'm getting nowhere if people can't look past the whole fat-chick thing. I'm pretty sure thin people get these problems too. Only difference is they're taken seriously.

Meh, fed up sooooo badly.

On the upswing I've been taking some hints from a dietician in Canada, re-organising my eating. I've accepted no one is going to believe a word about what I'm eating, so I'm no longer putting a heavy restriction on my food from a strictly moral stance. I eat what I want, which for a week brought up some crazy cravings for food I haven't eaten in decades, but at least I ate it. I'm drinking lots of water, and I try and deal with the shakes when I get them from not eating and my blood sugar plummets. I gained even more weight for a few weeks because I think my body went 'ZOMG, FOOD! QUICK DO SOMETHING BEFORE IT DISAPPEARS AGAIN" but I'm starting to even out. I'm doing some light yoga routines; I used to roll my eyes at these when I was lifting weights, but doing them now has become a lesson in 'this only looks easy'! It's helping my posture and my heart rate so that's good.

If my options are now 'heal thyself' as there isn't another GP for miles, then that is what I will do. And if it ends up I keel over from heart failure or something else, then fair dos; it happens. I'll make myself mad trying to get GPs to look up from the scales, so I think I'll just do a fair bit of research and figure out what works for me for now.