So, I have had 3 very good blood results....NORMAL.....yes normal, so the steroids, urso and mercaptopurine are doing their job ( AIH/PBC), but I am fatigued, overweight which I was not before, cold all the time, I don't sleep well and many more. Is it normal to feel so unwell with normal liver function tests.
I went to town with my hubby last Friday and when we got home (bus), I just stopped, I couldn't walk. My legs were weak, my back was painful and I slowed down completely......is this normal? I have had these lil blighters since March 2012 and am getting more confused by the day. My Gp does not know enough about it, my gastro has left the NHS and am still waiting to hear who I will be seeing. My last appointment was 7 months ago where I was told I need another appointment in 12 weeks. I think I need to contact the hospital and make an appointment myself or at least be told when I am likely to have a new consultant. I may have to travel further, and if that's the case then so be it. I need an appointment because these last complications have developed recently.
I wish I could be sure what was causing the trouble.
xxconniefused.
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Alley27
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Hi. Have pbc/aih am on steroids and azathioprine. I have had normal lft results for the past 5 months and am suffering from fatigue, muscle and joint pains as well. I don't know if there is a reason why my specialist although helpfull couldnt enlighten me as to why or if it will go. He seemed to think the muscle /joint problem could be a vit D deficiency and recommended faking supplements which he had already put me on! Have noticed a difference though now the days are longer.
I don't have an answer for you but can only say you are not alone.
Hi I read your post and whilst it's good that your bloods are normal it upsetting to feel all the symptoms you are. What symptoms you described (excluding normal bloods) reminded me of how I felt a few years ago. In relation to your weight gain I suspect that's down to the steroids so try not to worry about that (easier said than done) . You don't say why your on mercaptopurine. I put up with being on this drug for a long time and basically it felt my life was over as had so little energy I stayed in bed every weekend and was always cold. I eventually told my dr this and he stopped the drug and after two months I had a bit of my life back and whilst i still get tired, I'm still overweight and have aches and pains I'm a lot lot better. I'm not saying come off this drug as we all experience different side effects when taking medicine but suggest you insist on an appointment with a consultant as what your experiencing isn't normal and I'm sure it's upsetting for both you and your husband. Good luck x
I'm afraid I don't have any answers but can just say you are not alone. My LFTs are normal and I am experiencing the same symptoms. I just try to take each day as it comes and push myself to be more active - even though that's the last thing I want to be - as I find that helps a bit with being unable to sleep at night. Take care x
Hi I get these symptoms too, I work in London and sometimes on a bad day by the time I get there I am confused and become ill for a few days. My family know when this is going to happen as they say I get a look about me. I don't think you should be left I think you should ring the hospital yourself. Does anyone fell like they are going to faint sometimes? I'm off to see my consultant tomorrow but I don't think they have a clue about how we feel... Thats why its so good to chat . I feel have put weight on in the stomach area but that could be something to do with the chocolate biscuits I'm eating were I feel fed up. I wish you all well xxx
Sorry to read that you are not feeling as well as you would expect with normal LFTs.
Is could be possible that all the medications you are taking are somehow clashing and perhaps that is causing these side-effects. I did look up mercaptopurine as I've never heard of it and it seems that you are experiencing some of the side-effects of this drug due to it being an immuno-suppressant it seems. As I understand it these drugs lessen the immune system so that could be why you are feeling how you are. Fatigue is also another common side-effect so that could well be why you feel like that too.
Steroids do tend to make people gain weight (had past experience of these - my late first husband took).
If you should have had an appt 'within 12wks' and you haven't heard anything, I'd see your GP with regards to this matter or if you do have the contact number for the hospital (I have the consultant's secretary on my letters he sent out to me and did contact her for blood results that she posted out), I'd definitely be in touch if worried. The consultant will probably be the best medic to discuss this with.
Please keep us all up to date with when you are going to see a doctor again. I think some of your current worries will lessen slightly when you secure another appt with the doctor and then you can take it from there.
Hi I too have achieved "normal" lft but I suffer all the symptoms you mentioned and a few more. Over the years I have had loads of tests but they all come back clear. I think it is PBC but no one seems to know why, my GP has suggested they are all autoimmune symptoms and it is part of my autoimmune profile. Like you I feel ill everyday, some people have "good days and bad days," but I don't.
My consultant is only interested in my liver.
My only advice is Make sure you have regular blood tests so they can pick up if anything else in going on. While it's great about your liver, there is not a lot they can do about the other symptoms and it is a case of pacing yourself every day so you don't make yourself worst.
Thanks for your replies. I rang consultant secretary half an hour ago and was told that there is a shortage of gastro/liver doctor/consultants at Pinderfields so there are limited appointments with my consultant leaving. I asked how long I would be before I had a new consultant, and when I was likely to get another appointment, she said she would email appointments for me and try to find out and advised me to go see my gp and ask for a letter saying that it is supposed to be shared care and why have I not had an appointment or at least been transferred to Leeds in the mean time.
I have telephone consult with gp in morning and will take it from there.
I am aware also of side effects from my medication, but it said nothing about feeling cold all the time etc, I will have to look further into that. My hubby is worried about me and he will feel better today when he gets in from work and I tell him things are in motion.
I live in the Wakefield district., and I was taken in to Pinderfields when I started with this lot so that is where my appointments have been. I am wondering if I would be far better off going to Leeds (St James). It may be a consideration.
Lol on the vit D...I take calcium and vit D supplement that hospital gave me to protect my bones due to steroid use, I don't take them much because they give me indigestion. I take steroids, urso and mercaptopurine (allergic to azathioprine) These are immune suppressants to prevent the antibodies of AIH damaging my liver further.
Thank you all again for you replies, I will keep you informed on progress.
Hi, have you had your thyroid checked? I had similar complaints & found my levels very low end of normal, was put on 25 mcg levothyroxine & feel a lot better. Thyroid issues very common with PBC.
Hi Belliver....Yes I have had my thyroid checked, I have a diagnosis of hashimotos disease and NO....I am not given any treatment for it. I have had this over 20 years and it has never been treated. My bloods keep coming back in normal range except I get bouts of T3 toxicosis. I take steroids and other drugs to keep antibodies away from my liver (AIH/PBC) and I believe these drugs also kill off some of the TPO thyroid antibodies as well.
I am also aware of the direct link between hashimotos and autoimmune liver disease and am positive my untreated hashis has caused the trouble I have with my liver. 20 years and no treatment, The thyroid antibodies must have got fed up of attacking my thyroid and decided to mutate and attack my liver in stead. This is the only reason I can think of that might have caused my AIH/PBC overlap and no one will make me change my mind.
Hi Conniefused I know where you are coming from I'm so tired all the time my consultant thinks and go think everything is hunky dory because my bloods have Improved I wish they could spend a week in my body and say there's nothing wrong !! Take care xxx
I recognise some of your symptoms-I sleep poorly and have difficulty staying awake in the day. I think though that the most important thing for you right now is to be seen by someone who understands the condition. I don't know where you live but you have every right to contact your hospital/local health boarfd and ask strongly when and where you are likely to be seen. If there is no one locally who can treat you demand to see someone elsewhere who can. I am now trvelling to Birmingham from west wales-some 4-5 h-because there is no hepatologist any closer.. I did not have to fight for this but have had to be pushy locally in the past to get appointments/invesytigations. It is often he who shouts loudest I'm afraid who gets what they need.
Hi there. The symptoms you have described are completely normal for PBC. LOL. What I mean is those symptoms are PBC symptoms. Sometimes though we blame all our symptoms on PBC and we shouldn't. As some have said it could be medication side effects and sometimes another illness comes along so it's always best to talk to your doctor and specialist about symptoms. I was diagnosed in 2008. Normal bloods apart from the high AMA. I went to the doctors because I had developed the following symptoms: fatigue, energy drains, joint and bone pain and feeling out of phase, sort of dreamy and detached, not with it.
My cognitive dysfunction - PBC associated - has increased and my fatigue can be dibilitating. My LFT's etc remain normal. I am on URSO, pregablin, tramadol and Duloxetine. I have PBC associated autonomic dysfunction that includes postural orthostatic hypotension and drops in body temperature. I also have Sicca syndrome, again PBC associated. My itch isn't too bad. So.....all of this and normal LFT's. Hard to get my head round it sometimes. I can't work now, it became impossible. I take each day as it comes. I have been pretty much stuck in bed for two days now and I try to make the most of it, watch tv, read a book, listen to music, play games on my iPad and chat on Facebook. I'm a member of the Facebook PBC group which is great. Instant chat with other PBCers
LOL...ok I have AIH/PBC overlap with 20 years diagnosis of hashimotos disease (autoimmune thyroid) and my LFT is normal but why oh why was I not told that these would affect me for the rest of my life. I was not told that even with normal liver function tests that I would still have symptoms.....I also have the AIH to contend with as well so no wonder I feel unwell lol....my consultant was only gastro....not hepatologist. Perhaps I need to attend a dedicated liver unit, and I think we have one at St James hospital in Leeds, am not sure about that though.
I get brain fog, fatigue, digestive trouble, my joints hurt, itch is easing due to the questran; and last night I went to bed at 8.30 and slept until 9.30 this morning...I can't do what I used to be able to do and that upsets me. I cannot tolerate the cold and cannot afford to keep my heating on; I also clean for someone which is what I did yesterday because I cannot afford my medication......Yes that's true, my hubby works, we get a little working tax credit but I have almost £90.00 worth of medication to get each month. I have, urso, prednisolone, mercaptopurine, questran, omeprazole, adcal, Gabapentin, HRT patches, estrogen cream, symbicort and salbutamol inhalers for asthma...a lot of medication to get. I do not qualify for free prescriptions and am currently looking at getting the £10.00 per week prepayment certificate. My hubby earns 3 pounds too much for us to qualify for free scripts. It is a minefield and I so want a cure so I don't have to worry about necessary, life saving medication...rant over.
I think something should be done for people with long term chronic illness regarding free medication...I
am just so fed up with everything, my hubby is fed up of having no money because my medication takes up such a large chunk of his hard earned money...life is not easy with chronic long term illness.
I am very surprised your doc or chemists has not told you to get a prepayment card for your prescriptions as it would make it much more affordable. You can pay monthly as jane said or quarterly I think.
I go to Boots pharmacy weekly and often hear them telling people about prepayment method for prescriptions.
Thanks guys, I have set this up yesterday. It will cost 10 pounds per week, which I will manage no matter what, I now am going to see my dentist to see if there is anything similar I can do there.
Hello, I was only diagnosed 3 days ago after increasing symptons over the last year, I started with a dry mouth which my Gp said was stress then My dentist sent me to the oral mouth clinic and blood tests taken in Dec showed a problem with my liver but I wasnt infomred of this till Feb by which time I have alot of joint pain ( particulary in my buttocks) and mild itching. My worst sympton is fatigue my body feels like lead and I sleep all night then wake up shattered ? I was confused that my Liver functions tests where normal in June13 and just 2 weeks ago but seems you can have sypmtons and normal LFT. I have been told I therefore dont need to take anything at the moment, but I suspect I will be joining you all on here much more. Whats really strange is I am normaly very fit and well no underlying health condtions and no family histroy I started taking 20mg of Fluxotine for the anxiety in sep, but I was on depo provera injection for many years till August and cant help wondering if there is a connection, anyone else with PBC been on that ?
LFTs except at very end stage have little to no meaning in terms of symptoms. Strongly suggest reading Professor Jones’ book, he describes this extensively
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