Hi everyone! I've been a lurker for a couple months as I await a follow up with my Gastro; however I decided to write.
Back in November, I tested positive for Ama. I was sent a note with this information and asked to follow up in 6 months...no other explanation.
I'm also ANA positive and currently taking 200mg hydroxychlorquine for an unspecified connective tissue disorder (thinking lupus or sjogrens). I only discovered this back in September.
Anyways, today I established care with a new primary Doctor. He thought it was quite urgent to see a liver specialist right away instead of wait for the Gastro follow up! I'll schedule an appointment tomorrow.
Here's the thing- my liver tests are quite normal. My bilirubin is slightly raised (1.6) about half the time. My alkaline phosphtase runs low at 26 normally. Once, in my early 20s (I'm 31 now), I was sent for a liver ultrasound because my alt was slightly elevated (34). It never amounted to anything and has never been high again (that I know of).
My question is....does a LOW alkaline phosphate indicate anything in PBC?
What should I expect at the liver Doctor?
Does anyone know if lupus or another autoimmune disease can raise AMA? My AMA was reported as: 25.4 (reference: over 25 positive). Can your AMA be slightly positive without any reason to be concerned?
I feel as though I know some of you, just by reading your stories and never posting myself. Thank you all for sharing! you guys really helped me calm down back in November (when I first got test results) without even knowing it
thanks!
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Galintx
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I'm in a hurry right now, and cannot write much, but just wanted to say that my GPs and my new-to-me liver consultant (one of the UK's leading PBC specialists) are adamant that just having AMAs, on their own, is not enough for a diagnosis of PBC. However, a lot of people are not happy with me (and others like me) saying this, and some still think that: AMAs equals PBC
Formally, you need consistently abnormal lfts - that are typical for PBC - as well as the presence of AMAs, to be then given a diagnosis of PBC. If you have AMAs as well as symptoms of PBC, or there are doubts about the lfts, then I believe a biopsy should be offered. I don't know about the significance of low ALP, and I'm not aware of it ever being discussed on here.
Not all gastros (or even liver specialists) are really aware of all the ins and outs of PBC, so seeing a liver specialist is good, especially if they are familiar with PBC.
You can check back through my posts on here - plus, I'm not the only one who has been told I 'don't have PBC' even though I have AMAs.
I'm not saying you don't have, or won't develop PBC (I could still get PBC after 23 years, and I still have regular lft and other bloods), but AMAs alone are not a definitive diagnosis. I've tested +ve for AMAs for over 23 years, yet still have perfect lfts, no symptoms of PBC, and have generally good health. However, you obviously have other things going on, so you need to be thoroughly checked out by a liver/PBC specialist, and given lots more tests and checks, including tests for all other possible autoimmune conditions.
Join the PBC Foundation, if you have not already (you will see that their wonderful compendium/file on PBC states that the levels of AMAs are not a guideline to severity of PBC, although they don't make the point - that I and my consultant take - on AMAs alone. But talk to one of their advisors, as they may be able to help with the low ALp reading. There are a lot of things that cause liver enzyme fluctuation, so this further investigation is good.
GrittyReads-- Thanks for writing! I will certainly join the PBC foundation.
So, you've had positive AMA for 23 years without any development? Wow, that is hopeful!
I hope that I get one of the doctors that tell me that the AMA does NOT equal PBC---which I know doesn't change much. But maybe it will give me a little peace-of-mind.
Thanks again for the info!
Hello Galintx.
Well I can't say for certain that any other auto-immune condition could raise the AMAs. I thought these were a seperate issue and antibodies tend to be at work on certain specific bodily areas. (I am no medic but take vaccinations for instance, some that we can have can cause the body to produce certain antibodies that then recognise whatever they have been designed for if needs be, hence my theory.)
I think certain auto-immune conditions could perhaps cause one to be a bit more symptomatic perhaps.
My LFTs and the ALP and the ALT since diagnosis Dec 2010 have bounced up and down together like a see-saw. One can go down at blood check and the other up a bit. Seems to be very differing between us all. I think regardless if someone has any of the LFTs that are showing normal (bilirubin is one of them) then a doctor would be able to read the results as certain higher readings only can mean different things just like in the full blood count (FBC) certain abnormalities can point to something else. I know in PBC it is expected for us to have abnormal (or elevated as they can be referred) LFTs but they tend to be on a different scale to someone who hasn't got a liver disorder. There is also the GGT blood test that tends to be taken with liver conditions and again as mine always has been since checking 2010, higher than normal range.
I am in the UK and currently to be diagnosed with PBC without a biopsy you have to have 3 criteria. I went to see my doctor early 2010 with itching 24/7. I was at the time fatigued but never thought much of that, it was the itching that didn't seem right as was something new to me. I had the LFTs taken and they were found to be higher than normal. From then on I had a scan, ended up being seen in outpatient Hepatology and had antibodies check (both ANA and AMA). The ANA was negative, the AMA was found to have a 'high titre' so with this I was diagnosed with PBC. Had the antibodies check come back all negative I expect I'd have been asked to go in for a biopsy. I started urso Dec 2010, my LFTs started to come down over time (they are still elevated but considered normal for PBC), the itching altered in frequency so I tend to have late at night until around 5-6a.m., fatigue vanished sometime 2011.
I can't say that I have many symptoms as far a liver issues are concerned. Most of my symptoms are more joint pain and muscle pain (maybe from the ANA).....but all these darn auto immune disease are really intertwined with each other. It is hard to tell when one ends and the other begins.
However, as far as "PBC symptoms"---My new primary doctor was very interested in the fact that I had my gallbladder taken out in October for polyps. He said there is a connection between gallbladder cancer and PBC. Never heard that one before. I suppose that is my only "symptom" ---but the polyps were thankfully benign.
I'm in the U.S (texas), so I'm not sure what the standard is for diagnosing PBC here. I guess I'll find out soon....and fingers crossed that they do not find it necessary for me to begin treatment. I'm very uncomfortable with that idea! I guess I don't want to come to terms with ANOTHER diagnosis.
Like you I was told I had positive AMA with no explanation whatsoever. So naturally I researched on the internet and worried myself silly. It's taken a long time to calm down. Like Gritty Reads, I have positive AMA M2 but due to lack of any other symptoms and normal LFT's, I have been told I do not have PBC and just have to have annual blood tests.
As far as I know the actual level of AMA does not influence the diagnosis of PBC, you can have positive AMA without having PBC, you can go from having a slightly positive AMA to having a negative AMA, the level of a positive AMA is not indicative of how advanced PBC is if you have been diagnosed with PBC. In fact the actual level of AMA is so unimportant that the laboratory that does my blood tests does not give a level but merely says positive or negative.
It is pretty important that you look at your test results in relation to the reference ranges given by the laboratory that carried out your tests - as labs do not necessarily work with the same ranges and certainly country to country varies. The ranges are normally printed beside your results. The difference from lab to lab and country to country is why it is hard for anyone to comment on someone's results, as we're all so different from very different locations.
There seems to be a huge number of conditions that can cause a low ALP - huge. But if you've got an appointment to see a liver specialist soon, I'm sure they'll cover it, especially if you point it out. But if you're like me, I seem to forget at least 50% of what I mean to ask whenever I see a doctor. So taking a list of questions and/or a friend may be an idea.
As far as what to expect when you see your specialist, it will vary a little depending on where you live. In the UK, you will probably have your weight checked and for a first appointment, have to fill out a general question and answer form. Note that your specialist my not have time to read that form before seeing you and so will still need to hear you say about any illnesses and operations you've ever had and physical symptoms or worries that are bothering you. As you talk, they'll be looking at your skin, your eyes, your hands (palms and nails). They should feel your abdomen. After your consultation you'll probably have more blood tests done, some of which may be asked for directly because of any issues you've told them about - which is again why it's so important to get over to the specialist any problems or issues you feel are possibly not normal. If the specialist feels it necessary they'll also ask for additional tests eg ultrasound. Biopsies are not carried out in the UK unless everything points to one being of benefit.
Oh, they'll also want a list of any medications you take but also a list of any vitamins and supplements. They may also ask for details of where you get any vits/supplements as there seems to be increasing concern over the dodgy and in some instances, dangerous content of some supplements.
At least your doctor sounds as if he's on the ball. That's reassuring - I had to jump up and down and throw a wobbly to get to see a specialist!
Yes, I am certainly like you in regards to forgetting half of the questions I have for the doc. I've already started my list this time! I'm going to cover them all
Yes, my new primary doctor is wonderful! Certainly on the ball! He is young, energetic and eager to find the cause of my "complex" case---as he called it.
Hi Galintx! I'm so glad you decided to write! I am interested in your experiences because I am also AMA positive, but perhaps more importantly, my mom is having issues with testing ANA positive and having no real follow up or diagnosis from her doctors. She has all the signs of Sjogrens, so I'm hoping for some progress soon and it helps to read about other people's experiences.
Oddly enough, my grandmother, my mother have low alkaline phosphate. But all the doctors say its nothing. They have told my grandmother and mother that it only matters if it is higher than the normal range. I don't know if I believe that though. Why would there be a "normal range" but anything less than the normal range is considered fine? Shouldn't that be considered abnormal? Let me know if you find out anything about this!
So far as the AMA's, AMA M2 is very specific for PBC. However, it does not mean that you automatically have PBC. Doctors go by different criteria for actual, formal diagnosis and rely on their own judgement as well, which can vary. Like GrittyReads said, you could be AMA positive and never show any other signs of PBC and therefore never need to be diagnosed and put on medication. They are asymptomatic.
Then you have the other side of the spectrum: I am AMA positive with normal ALP and normal Bilirubin levels, however my doctor decided to diagnose me with PBC without a biopsy and put me on medications. I had terrible fatigue, but since I've been on Ursodiol for 8 weeks, my energy levels have greatly improved and I feel very good. I can tell a big difference with my digestion, swelling, mood, brain function, and I am finally able to lose some weight. I'm not 100% back to normal, but its only been 8 weeks. For me, it helped greatly for my doctor to diagnose me based on AMAs and fatigue alone. So, it depends on the doctor and every patient is different.
Right before I was diagnosed and started Ursodiol, my bilirubin levels tested at 1.8, which is slightly elevated like yours. It has never been high before, at least not that I know of. Elevated bilirubin can be caused by things other than PBC, however.
I have also been advised that a low AP is not cause for concern. Several doctors told me this, but it was all before the positive AMA was discovered. Like you, I question this. I'm interested to find out what the specialist has to say about it in conjunction with my other blood work/symptoms.
I am very surprised to hear that they started you on a medicine so quickly! So, I guess they began you based solely on the AMA, exhaustion and slightly elevated bilirubin? I'm happy it is working for your tiredness! I hope it continues!
I am a super busy mom, so of course I have exhaustion by the end of the day....but I do not think it is abnormal. I will not be comfortable beginning medicine....but we shall see!
Hi Galintx, I live in the US (Washington State) I was diagnosed with PBC in December. I had abnormal LFT's in September and my PCP, sent me to a specialist to find out why. My specialist had me go for an ultrasound of the liver and a liver biopsy in October. Some how my liver has moved. I don't know what is up with that. But the liver biopsy came back with the results of positive for PBC. Quite a shock. I was diagnosed with depression, fibromyalgia and ptsd. I have come out of the depression, it was a tough battle. Now after 25 years of dealing with that, I now have a new ideas to deal with. I have been on urso Forte since November. I deal with itching, so I take cholestyrmine, it's nasty stuff. I also deal with the fatigue. I am fighting through the fatigue the best way I can. I hope you get the answers you need. I am sending you all my best!
Hi Galintx: make sure you have copies of all your blood work, scan reports ( copy of the scans if possible) with you & let them make copies. If possible, phone the liver dr office & ask them if they want ant blood work done before your appt, then you have those results to talk about. ( so what if they say no). Ask if liver guy recommends seeing a rheumatologist for lupus/ Sjorgens , ask what drugs are bad for your liver ( what about the one you taking for connective tissue disorder?). What supplements can / should you take or avoid? What does he think is going on with your liver, treatment available, name/ location of doctors more well versed in your condition. What should you avoid ( oysters?), what should you be doing, etc be sure to write them down, cos you won't remember them. Good Luck!
Thank you all for your advice and comments! Greatly appreciated!
My last set of LFTs came back today and PCP nurse said they are all normal. Headed to see the liver specialist early next month and will definitely ask some of these questions!
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I really need some advice
Worried and stressed out 
Seeing dr for possible diagnosis today... stressed
No diagnosis yet but AMA+. Any advice?
No doagnosis, still waiting. Next stop MRI
