Christmas Morning. Wishing everyone a joyous Christmas filled with peace of mind, body and soul. Sprinkled with liberal amounts of love, laughter and cheer.
I am new here. It’s not somewhere I would have thought to be this day but am grateful to find you all.
I have some concerns. I have been dealing with auto-immune disease for many years.
Lupus, hypothyroid, sjogren’s and Addison’s disease and ITP to name the most concerning.
Overtime, I have been told of PBC. The cause long term use of steroids. I have regular blood work and often throughout the years have elevated liver enzymes. Although I truthfully am not to sure what that means. My rheumatologist just keeps watch for me
and sometimes if she thinks it’s drug related my meds change. ie, methotrexate.
But lately I feel something is different. I feel more ill, and very, very tired. Too tired to be normal. My last blood work showed elevated ALT but everything else seemed ok.
So as mentioned I think at this point it is time to learn about this little organ and the
significance of how I feel and any blood work as my rheumatologist cannot know or help me if I do not make known changes of how I feel . With so much going on it is easy
to ignore symptoms unintentionally.
I hope to learn allot in the future and appreciate and thank you for the support.
Tuffymasom.
Written by
Tuffymason
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Welcome and sorry you have to be here on this site at all. It is though, a wonderful place for support and information where PBC is concerned. Did you say you "have" been diagnosed with PBC? If all that is elevated is ALT then it may not be PBC.
It's a good idea to join the PBC foundation above. Depending on where you are from they will send you some information all about PBC.
Usually 2 criteria are needed to diagnose one with PBC. Elevated liver enzymes and over 90% of the time a positive AMA-M2 shows up in labs as well.
Tiredness is definitely experienced by many with PBC, but not all. It sounds like you need to see a hepatologist (liver doctor). Maybe more labs, a Fibroscan or a liver biopsy may be needed. I'm here in the U.S.A., and here they do labs and a biopsy. In the U. k. I think it's labs and a Fibroscan.
Please don't ignore your symptoms. Early diagnosis and getting started on medication is very important.
Please keep us posted when you find out for certain what's going on. Try to get in to see someone who is familiar with this auto immune disease. It can make a big difference in the care you will receive. Oh.. and I liked your remark about getting to know this "little" organ better. Lol.. I'm sure you were kidding as the liver is the largest and most complex organ. It does soooo many vital things. ❤❤
What I can say about diagnosisis that it was made by a hepitologist at Toronto Western Hospital way back in 2003-04.
I saw Dr Wong. I had gone to the Toronto General re SLE and the blood work for liver issues showed up. So I was sent over to the
Western. Dr Wong did many tests and ultrasound. She said she did the ultrasound to search for cancer, but it was all clear.
But that I had fatty liver disease or PBC that was from long term steroid use. She made sure I knew how serious this was. And I was taken back about that as usually doctors don’t do that. So I saw her many times every six months and nothing ever changed. I began to tire of the long three hour drive to the city and the ridiculous parking issues. It wore me out and I felt fine.
One time I told her I had found a new rheumatologist nearer my home in Kingston and that I would like to see a hepitologist there as well. She was not happy. She told me to drive to Oshawa and take the Go Train...and that there was no hepitologist in Kingston and that I was too ill to leave her care.
But I did anyway, something did not feel right, I felt like a pay-check or something.
So she was right there was no hepitologist, but I was sent to two doctors in Kingston maybe internists or something. They studied my charts and listened while my husband and I told them what we had been told.
That day we were told that my liver was fine. That it showed that I had signs of auto-immune disease in my liver but so far my liver functioned very well. I was told that I need not worry, that my rheumatologist would do blood work to keep watch. That she has done.
You can imagine my husband and I walking out of that office...we were in a very excited kind of disbelief, kind of like, did you hear that? or am I nuts? I tell you we started to tiptoe out of the office and down the hall very gingerly and then began to walk faster and faster down the hall until we were almost dancing! So funny weird you know?
So I have never been seen by a hepitologist but do have regular blood work. Often over the years I have had elevated enzymes.
But then the next blood work would be fine. Last year I was diagnosed with ITP which required blood work every week, not sure my liver was tested everytime but at least a few times and the enzymes would be elevated but then they would go back to normal. ????
But I have had a tough summer, actually four years. It began by the death of my brother by an accident on our family farm. The farm in our family for 100 years. Living just off the farm our community and we could not see it sold and developed so even Looking ahead to retirement...we bought it. Renovated the farmhouse and moved this summer. There was also his estate and then the grief. It has never left me, we were peas and carrots.
So the stress was plentiful and the ITP was inevitable, I feel lucky that’s all it was considering my health back ground it could have been much worse.
All the fatigue, and pain from packing and moving could be the reason for my malaise but there seems to be a definite cycle and proticoll.
First terrible fatigue, almost like I can just get to a soft place I. Time to literally pass out. And the sleep is so hard and deep, not normal for me. Prednisone causes terrible insomnia for me.
Then the dark circles under my eyes and the pale grey coloring.
I look awful. Then comes the inability to eat due to nausea. Especially anything sweet, my mouth gets so bitter no matter how I rinse and brush over and over. Sometimes I wake to run to the bathroom to vomit. Sorry about the detail. Then the GI tract just quotes functioning normal too.
I also feel very dry and hot to the touch. Usually mornings are in-doable, but I get better as the day goes on.
Then my joints and tissue begin to hurt me, that could be that this syndrome wakes the sleeping giant SLE?
So you can understand my confusion. What is this that just happens out of the blue? This last time it began a couple of weeks ago and it just so happened the blood work was done at the same time, and the enzymes were again elevated. It has got me thinking....about this as I had just returned from Toronto to make an office visit with my Mother’s urologist. She had just been told she had a mass on both kidney’s. Driving back from the city was a race and I was determined to get to that appointment.
I remember my siblings sitting in the waiting room when I walked in. They were all so solemn. My sister asked how I did I do and I didn’t want to tell her...enough already kind of thing...but she insisted...and the look on her face was something between horror and over the top fatigue and stress. Then she says quietly as she squeezed my hand and said, don’t worry, you can have some of mine. Poor dear it was all the strength she could offer at such a time and situation. Crazy this thing called life.
Anyway there it is and I will get some rest and begin to get to the bottom of things in the New Year. My rheumy is in India visiting family right now, she deserves it, she is the best. When she gets back we’ll tackle this like we tackle everything else.
Welcome to the 'PBC Foundation' site. Lovely reply there from Ktltel, and she is so right: you may not have PBC, so do talk to the advisors at the 'PBC Foundation' site - links above.
Fatigue is common with any autoimmune condition, and as you mention Lupus and others that can vary in their effect, it may just be that they (one or more of them) are responsible for your current tiredness ... Especially at this time of the year, when we have all - probably - been trying to do too much! Also, as Ktltel says, PBC is not based on one result alone, and just high ALT may not mean that it is PBC.
Visit the PBC Foundation site and read all you can, especially the details of diagnosing. Until the guidelines for diagnosis have been followed exactly, preferably by a hepatologist familiar with PBC, there is no need to assume it is PBC.
Take care and try to relax and do things that you enjoy and love, to help you de-stress until you can get some answers.
PBC is an autoimmune condition that attacks the liver. It is, perhaps, (I'm only surmising) possible that all the other treatments that you have had, and the various drugs, could have caused the autoimmune antibodies to become active and upset the liver ... or even cause the PBc, as you suggest .... but I don't know that ... I'm just guessing.
I don't know how good the Hepatologist - who you saw in Toronto - was, but I do think you should be seeing a hepatologist, and preferably one with experience of PBC, just to find out if you really do have PBC or not.
Although you have had a lot of tests and investigations, you don't seem to mention the all the key points that should be covered and tested for, in order to formally and officially diagnose PBC. These diagnostic criteria are very clear and precise and it is not common - these days - for the diagnosis of PBC to be a problem if the PBC/Liver specialists are up-to-date and know what to do.
I really would look at the website of the 'PBC Foundation' (this is their 'help-site'). You can follow links to their website - at the top of this page - where you will find loads of accurate and up-to-date info about PBc: also they have an 8-page guide to the official and formal discussion of PBC, and its symptoms, the exact diagnostic steps, and steps a Hepatologist should follow if it is diagnosed. It would be worth you spending some time to read all of this. Also, if you have all your past letters, reports, diagnostic results etc, the when you know more about how PBC is diagnosed, you could check back through your notes to see if these tests for PBC have ever been done - and if all were dealt with properly, or not. NB It is worth bearing in mind that the knowledge of PBC is growing all the time, yet it is a rare conditions, still, and many Drs have not dealt with it, so it is possible that investigations in the past were not always what would be done now.
Simply, now, 3 tests are done to diagnose PBC: but in most cases, positive results for PBC in 2 out of the 3 are enough for a diagnosis of PBC. They are:
1) The presence of AMAs (antimitochondrial antibodies - sub-type AMA-M2 codes for PBC) and/or:
2) Abnormal levels of certain blood tests and liver function tests (lfts). The common bloods to be high are ALP, GGT, AST, ALT, but: lots of others are taken, and it takes a skilled hepatologist to really know what is going on - also you would be re-tested over months, to check there was no aberration, and to make sure that the blood results were dropping, if you were given Urso, which is the first main drug to be used for PBC. and/or:
3) A liver biopsy of the liver, which shows microscopic damage to the tiny biliary tubules in the liver that is typical of PBC. [NB Ultrasounds do not show this level of detail - they can show mass scarring if liver damage is advanced, but a biopsy is needed to see PBC at a microscopic level and an ultrasound of the liver is not enough to diagnose PBC, or to rule it out].
In the UK the presence of AMAs and abnormal lfts are enough for a diagnosis of PBC; a biopsy will be done if only one of the first two tests is worrying - but especially if the symptoms of PBC are there: eg: fatigue, joint & muscle ache, itching, yellowing of skin or eyes, dark urine and pale stools (it is usually the first 3). However, symptoms are not enough - alone - for a diagnosis. the 3 numbered steps (above) should be followed.
Some people can have PBC without AMAs, being present (but this only occurs in about 10% of PBC sufferers) while some people can have AMAs without having PBC - or anything else wrong with them - although biopsies may be given in these cases, especially the first.
As I said, 2 out of 3, of the above 3 need to be there for a formal/official diagnosis of PBC, whereupon the medicine Urso is given. PBC will progress if no urso is given, and there are other treatments to go with Urso, if the person does not respond to Urso: but medicine is necessary.
Sorry it's so long, I hope this helps, but please do read the info on the 'PBC F' website.
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