This weekend I went to a specialist in sunny San Diego. He is said to be an excellent doctor and knowledgeable with PBC. I went for a second opinion as to whether I have PBC or not? His response was in some ways informative, but left me more puzzled than ever and sad.
The only marker I have at this time is elevated ama 140 Titer. I do have sicca dry symptoms & heavy fatigue both which have been attributed in past to hormones and Fibromyalgia since 2008. He baffled me when he straight out said yes you have it! Your sister has it so do you. Given my knowledge from this helpful site and had to disagree with him and found his answer to quick and easy. He did a fibroscan and thank God, it was normal. I questioned that typically it is supposed to have other liver tests to make a PBC diagnosis to which he said that I was in a difficult category and usually it was his experience that patients with my symptoms and history developeed PBC later & it would start first with smaller issues that i now have. The only positive I derived from this visit is that he agreed that I do not need to be URSO at this time only when other markers start to change. Baffled!
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Yes, you do need to have more than just the presence of AMA-M2 to be officially/formally diagnosed with PBC. However, as some of the symptoms you have are also typical of several autoimmune conditions, as well as PBC, I would expect your specialists to have tested you for all other possible autoimmune conditions (especially those linked to the AMA-range of conditions), as well as all other liver conditions, and maybe to keep an eye on you. You should also be tested for PBC - and a wide range of other autoimmune issues, annually (this is standard for anyone who just has AMAs).
I only have AMA-M2, and it has been known I have had it since 1992, but I don't have PBC. However, I could still develop PBC, and so I have blood tests every year. Some years back a new-to-me Medic tried to suggest that I had PBC, but I saw a leading PBC specialist, who overruled this, although he suggested some other tests should be added to the annual tests that my GP does.
I'm also developing some dry eye/mouth issue, but my recent tests show all is still okay otherwise, and my optician says this can just happen as we get older. I would also ask to have a full vitamin and mineral check, as this could be the cause of some of the symptoms, and shortages are common in many otherwise 'good' diets, while some absorption gets worse as we get older.
Thank you so much. Yes i had a full check blood workup for varios autoimmune conditions & liver tests by my gp prior to new to me specialist. I get bloodwork checked every 6 months which seems like maybe I should do every 8-9 months instead
After 1.5 years, positive AMA, fibroscan score of 7.7, biopsy showing a damaged duct and inflammation, and slightly elevated GGT and ALT, my doctor is questioning my PBC diagnosis. I held off on taking urso, yet my numbers have not changed. His main reasoning is that my ALP has never been elevated. He is thinking steohepatosis with fatty liver and is encouraging me to adopt a healthier lifestyle, reduce fat in liver and all over, and see what happens. He thinks most symptoms will go away if inflammation is reduced. I also read that there is a chance that the body will repair ducts in some cases. So, I am trying and we shall see!
Keeping you in my healing thoughts! I really do believe that there is a connection with foods and toxins that we ingest that trigger this ongoing inflammation and then damage. For many years 10 at least I had an elevated ESR rate with no other tests showing any positive results of anykind. I was eating gluten like crazy until I had symptoms from it. I am 99% gluten free now sometimes 100% whether the damage was done already prior to changing that, it's hard to say as my AMA was at its highest in my last workup and my diet at its best except for fatty foods. I was eating ALOT of good fats and not so good chocolate before the AMA test and had a Urine infection at the time
Not sure about this doctor..... if you have a + AMA titer and elevated liver enzymes that is, in most cases, sufficient for a diagnosis of PBC. Repeating your liver enzymes every 3-6 months be wise to see what the overall trend of the results are. If no labs have been ordered I think that needs to be your first thing to do.... I would suggest a CBC, CMP, liver panel , and thryroid testing. Go to The PBC Foundation and read all you can there. There is so much information on their phone app You definitely need a diagnosis so you can start on the right treatment. Sicca syndome of one of the most common other auto immune diseases that happen when someone has PBC.
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