Problems with liver
Posted , 8 users are following.
Hi im new to this group but I am a member of other groups due to my list of ailments. I have lupus and sjorgens which was diagnosed over 17 years ago im never sure whether it my lupus or my sjorgens playing up. I have been having problems with my liver Alkaline Phosphate levels have been going up and up for no apparent reason I was recently diagnosed with a fatty liver which showed up on an ultrasound scan. Im really getting worried now I don't drink at all and im not overweight I have recently come off steroids after 17 years and this has been a very long process. Does anybody else have problems with their liver
1 like, 26 replies
margaret22116 christine63572
Posted
hi, I have Behcet's which is similar to Sjogren's and Lupus. Like you I have been told I have a slightly 'fatty' liver - though I drink alcohol I'm not an excessive drinker so I can't explain that. I have never used steroids but was on interferon for quite a long time and also mycophenolate. Not taking either at the moment. No one has explained the liver problem to me. In fact usually nothing is particularly said about most of my symptoms unless they are extreme (by which I mean when I had really bad neuro type symptoms). I appreciate your concern. Perhaps you could ask for a referral to a hepatologist or gastroenterologist whichever would be most appropriate. has anyone tried to explain so far what is going on with your liver?
christine63572 margaret22116
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margaret22116 christine63572
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It does seem it could be related doesn't it. If you have a good specialist they should be able to evaluate it. Are you taking anything else now you've stopped using the steroids?
christine63572 margaret22116
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No Margaret I wasn't offered anything but hoping if liver problems are sjorgens related the gastro consultant will start me on something. Iv had lupus and sjorgens for many year and haven't had any organ involvement but having said that I have always been on steroids. I live in Kent UK and my rheumatologist is totally useless I saw him in September and he told me that my alkaline phosphate was high but gave me no advice or suggestion as to why or even whether it could be a result of sjorgens. Told me to see him in a years time and gave me no blood test sheets because I have been stable. how the hell will he know how im doing in a years time without looking at my blood grrrr,
margaret22116 christine63572
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Yes that's awful treatment isn't it. I know sometimes you have to be such a hard nosed 'self advocate' in these situations but I am just so insistent these days on getting proper treatment I move if I feel I'm not being treated properly. I see a renal specialist in Cambridge these days who is great and I really trust him. I live in London. You can ask for a referral outside of your area if you're unhappy with treatment. It is basically up to the consultant in question whether they see you or not.
I would urge anyone unhappy with their care to get a referral elsewhere though I know it can be difficult if you have a GP who doesn't want to cooperate.
I would have a word with your GP explain your concerns and why you're unhappy. Try to have somewhere in mind to ask to be referred. You can also always speak to Vasculitis UK who are always very helpful.
Free helpline number 0300 365 0075 they are much more knowledgeable than I could ever be and they will hopefully be able to talk you through the issues and treatment options.
christine63572 margaret22116
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margaret22116 christine63572
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hi Christine, can you go ahead with your plans? Would you have somewhere to stay if you came back temporarily to see a specialist? That way you can carry on with your plans. I doubt that there will be an emergency situation here. I understand your concern and obviously I can't say that for sure. I am not a specialist. But can only imagine that your rheum is at least informed enough to know you are not in an emergency situation with the liver situation. One would hope he/she would at least know that. We get pretty poor treatment sometimes don't we. So annoying x
lily65668 christine63572
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Christine,
If I were in your shoes I'd investigate the healthcare situation in Cyprus. I worked in the NHS for more than 10 years and have now lived in another European country for more than 40 years, and I can assure you that healthcare is better in most EU countries than it is in the UK - including those we perhaps think of as being less developed. (Sweden is one exception that I know of - they operate an identical system to the UK, which is totally free at point of service but with identical drawbacks.)
If you get your Cyprus trip in before 2019 you might well be eligible for treatment under the Cyprus system - well, at least in the Greek jurisdiction. Not so sure about the Turkish half. You'd need to look into the forms you'd have to take with you to ensure your NHS contributions would be taken into account. It's true that most EU countries require the patient to pay a small part of the costs of treatment - even for fully-paid up nationals of the country - but most of them offer much more choice than the UK.
I'm not kidding - it really might be worth looking into. But hurry up - the Br exit clock is ticking!
christine63572 margaret22116
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I will see what the gastro specialist says when I see her hopefully it isn't anything too serious and she puts me on steroids or another med to stabilize it and bring down the enzymes if that's the case I will still go and get it checked out in Cyprus from time to time but obviously if it my liver has anything too nasty I wont be able to do that. Im not even sure it is anything to do with autoimmune yet it was just a coincidence on my part that the enzymes rose as I tapered off the steroids. I was only on 5mg a week in the first place which was a maintenance dose.
christine63572 lily65668
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That's what I was hoping to hear Lily I am retired so should be able to go to the hospital in Paphos and pay a small charge to see a doctor who will then give me my repeat prescriptions. I was planning to take a copy of my blood tests with me to show them, I was hoping that they would give me regular blood checks. I was due to go for three months in May but a month before I went I was diagnosed with diverticulitis so I missed three weeks because of all the tests I needed. where do you live Lily
lily65668 christine63572
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Hi Christine,
I live in Belgium, and I'm certainly no expert on Cyprus. I've never even been there on holiday. My only visit was a two-hour refuelling stop at the old RAF base at Dhekelia on a troop transport flight returning from Hong Kong to RAF Brize Norton in 1973!
However, I have a pretty good overall understanding of how the various EU health systems work. Here in Belgium, as in most EU countries outside of Scandinavia, we operate on a kind of public-private combination. This means that even if someone isn't eligible for treatment under our health service, they don't have to see a fully private doctor and pay exorbitant fees. They pay the going rate (fixed by the government) for their treatment, but without getting anything back from the State medical insurance, as a Belgian resident would. Here, a consultation with a rheumatologist would cost around €70 and a blood test probably €40-100 (depending on what was ordered). Both residents and foreigners would pay the same amount, but residents would get a partial reimbursement from the government.
Ditto for prescriptions. There's no such thing as the scandalous UK private prescription here. A prescription is a prescription. Everyone pays the government-set rate for medications, but foreigners don't get the reimbursement.
However, foreigners who have private health insurance can usually claim back some of their costs for treatment, and you can claim from the NHS under some circumstances, using the EHIC card.
As I say, this is only a general overview, and I know there are some exceptions. Perhaps you could spend a month or so in Cyprus first and check out the situation before committing? I'm sure a bit of nice weather would make you feel better!
Incidentally, I suppose you know that one of the side-effects of long-term corticosteroid use is fatty liver? I take your point that it was only noticed after you stopped the steroids, and you were only on a low dose anyway, but I suspect there could still be a connection. I wouldn't worry too much in any case. Fatty liver in itself isn't considered very serious, unless it's advancing or causing other problems.
christine63572 lily65668
Posted
Thanks Lily that info helps. gp thinks there is more going on with my liver than the fatty side of it as the alkaline phosphate is rising all the time but will find out when I see the gastro consultant, well I hopefully will anyway. fatty liver stinks especially as I don't drink im 5ft 2in weigh 8st 7lbs and go to do two aqua classes a week using water weights and I also do a body sculp class which involves lifting weights. Im 67 this year x
lily65668 christine63572
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Oh dear, it's just not fair is it? I'm 73, the same height as you but weigh 9st 8lb and drink a bit more than I should - though no bingeing - and my doctor says my liver is in better nick than his! I do, however, exercise regularly like you, as well as making sure I avoid junk food and eat plenty of vegetables and oily fish.
christine63572 lily65668
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lily65668 christine63572
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I was a sickly child too. The survivor of twins, I weighed only about 4lb at birth (in the middle of an air raid in the East End of London) and nearly died of pneumonia and bronchitis every winter till I was 8. It probably didn't help that I lived in all that smog, in a single, damp room with two chain-smoking parents.
I was lucky in that we finally got rehoused away from it all in the spring of 1952. I think this was probably just in time. If we hadn't, I suspect I'd have been among the 30,000 deaths caused by the (in)famous smog of the winter of 52-53. Once I got into clean air and proper housing, there was no stopping me!
I'm amazed that my lungs have got away with it so far, given the damage they must have suffered during my first 8 years. I can still remember crying when I left the house to go to school on winter mornings because the acidic fog felt like a knife in my chest at every breath. Yet I had no chest problems at all from the age of 8 till two years ago, when Sjogren's started affecting my lungs. The resilience of the human body truly is amazing!