I’m new here and very grateful for this group and information. I joined because after doing some research - I suspect I may possibly have PBC - even though my gastroenterologist suspects AIH (autoimmune hepatitis) instead. I would greatly appreciate your insights.
I am a 65 year old female and I have no physical symptoms and generally, feel well. My bloodwork results were found incidentally when exploring why I may have some pings under my left ribs. It could be due to a nerve from spinal compression - but to investigate this - I’ve had endoscopy, colonoscopy, a chest X-ray and abdominal U/S - all showed no problems anywhere - lungs, heart, spleen, liver - all good except I have lots of gallstones - but no thickening of gallbladder seen on U/S. I’ve had them for years and I do get mild pings in the gallbladder area when I eat fatty meals - but they go away when I take Milk Thistle. I’ve never had a gallbladder attack.
If I agree to have my gallbladder removed they could also do a liver biopsy which would be more definitive. I’m wondering, however - if removing the gallbladder would be bad for the liver ducts and thus make control of PBC more difficult if that is indeed what I have.
I am planning to get a second opinion from a hepatologist but am waiting to hear from them to make an appointment.
Here are my bloodwork numbers that I believe may be pertinent. I would appreciate very much - if anyone has some insights as to whether this might be either AIH, PBC or perhaps something else…
AST - 40 - U/L - slightly elevated
ALT - 46 U/L - slightly elevated
GGT - 143 U/L - high
ALP - 94 U/L - normal
Bilirubin .5mg/dL - normal
AMA - positive Mitochondrial AB Titer 1:640
ANA Titer - 1:280 - High
ANA Screen, IFA - positive
Fibrosis Score - .43 Fibrosis stage F1 - F2
Necroinflamm Activity Grade - .40 (AL)
IgA - 159 normal
IgG - 1,110 mg/dL - normal
Ig4 - 46.1 mg/dL - normal
Anti Smooth Muscle screen - negative
CBC - normal
Thanks so much!!!
PS - I also had a urine test that came back with high arsenic level - due to arsenic in our drinking water. My Gastroenterologist said this would not have affected my possible diagnosis of an autoimmune disease….
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Mpbc
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Hi Mpbc, sorry to hear about your health issues. I just wanted to provide a brief response on the bits I know about, and others will I’m sure contribute more soon.Some people who are AMA + don’t develop PBC, but your complex of results suggests a few things are or might be going on, with PBC a possibility, and a combination of PBC with AIH also a possibility. Typically AMA and raised ALP or PBC markers on liver biopsy are used for firm diagnosis. Raised GGT and IgM are a common PBC profile, so they can help with diagnosis too. You may want to ask if you could start taking Ursodeoxycholic acid, as this is the treatment generally used for PBC but I don’t know anything about Urso and gallbladder issues - your consultant will advise I’m sure.
Your ultrasound is encouraging, and you feel well, which is great news! I do hope you receive good care and soon reach a point where you can understand what’s happening. Continue to advocate for yourself, join the PBC Foundation, keep in touch with this helpful group, and best wishes!
Thanks kindly for your reply, Skypony. Btw - another thing that I did not mention above - but will add in a PS - is that my Primary Care Dr ordered a urine test for arsenic because we have it in our water and it needs to be remediated - and the results show high levels in my urine. My Gastroenterologist says this does not apply to my liver results - but I wonder….
On the arsenic in your water, you should filter your water for cooking and drinking. Can’t comment on arsenic and its effects if any on liver or pbc.
I did a biospy to diagnose the pbc though the preliminary tests pointed towards AIH.
The gall bladder stores bile to digest fat. Don’t believe it has a direct impact on the liver. That is a question you should ask the hepatologist to confirm.
Looks like you are likely in stage 0 or 1 of whatever you have, your liver numbers are not too concerning especially the alk phos. That is the one the hep focuses on for pbc.
Hep will probably want a biospy to diagnose as well. I am sure you will be fine once diagnosed and put on meds. Not to worry as you caught it very early. Probably no damage at all. If you are responsive to meds, you will have normal life expectancy for pbc.
Thanks very much for your reply, ninjagirlwebb. Yes, we will be remediating the arsenic in the whole house. It actually had been remediated but had not kept up with the upkeep on time. We also have a drip filter for drinking water that was supposed to filter out any remaining arsenic - but upon testing it after my bloodwork came in - we found it was, unfortunately- not doing the job! Thanks again!
Thank you, ninjagirlwebb - hope so! Just want to be sure I am not misdiagnosed and given the wrong treatment! Still unclear on whether or not this could be AIH as well. Hope you are doing well, also!
Your biopsy will shed clarity on the AIH. With me, the first pathologist reviewing the biopsy could not give a definitive answer. So my hepatologist had the biopsy slides sent to another pathologist who was one of the leading experts on liver disease for a 2nd opinion and he said it was pbc. Was put on urso right away. You will be fine!
These days I just let my hepatologist manage this condition for me. I see him every 3 months and he told me to leave the worrying to him.
Thank you, ninjagirlwebb. The biopsy would be ordered if I have my gallbladder removed - while I’m under anesthesia - which sounded good to me - but if I decide not to have the gallbladder surgery - I was hoping I could have a diagnosis through just bloodwork and avoid the need for biopsy if possible….
The arsenic is interesting. Did you have any other symptoms? I had a strange nail symptom (a few times), called Mee's lines, horizontal white lines, that grow out as the nail grows. Usually caused by arsenic exposure, which I didn't have. I don't know if it was related to PBC or what caused it. Never got to the bottom of it.
No, Kakey - I have no other symptoms other than some pain under my left ribs which I’ve been checked out for - and nothing really explains it. My general practitioner feels that it’s most likely a nerve from my spine - I’ve have spinal fusion for scoliosis in the past - and there is degeneration that may be causing nerve Compression. Hard to know for certain….
I looked up Mees lines - and no - I have nothing like that. Do you have well water? If so - have you had it tested for arsenic? Also - rice contains arsenic - some types more than others as well as apple juice…. I also read that if you live near mining sites, industrial sites and former orchards - you should test your soil and water…. Hope you are doing well…
For comparison, at the time of my PBC diagnosis, my AMA, ALT, and AST were all basically identical to your results. My alkaline phos and bilirubin were a bit lower than yours. My GGT was normal, and my ANA was negative. I was diagnosed at stage 0 PBC after a biopsy. 12 years later, I'm still very early stage PBC. My alkaline phos has never been out of range, it's my ALT and AST that tend to elevate just slightly, so it looks a bit more like AIH than PBC on paper (but it's not AIH) . My hep says it manifests as a milder variant of PBC. Hope that helps, and good luck!
Yes - that comparison makes me continue to lean toward believing it’s PBC. I’m wondering if just going on the Urso and seeing what happens would be a good course to take. The Urso may also help with the gallstones - and I’d like to avoid prednisone due to the side effects - (especially risk of osteoporosis). Have you been on Urso or just watched it all these years? I’m glad you are doing so well, periwinkle88! Thank you, again!
I was just monitored with labs every three months for a few years, and then started urso when my ALT and AST kept creeping higher. The urso brought them into range. But, the urso also caused a lot of weight gain, which has caused other issues. I was able to lose some, but not all. It's a work in progress.
I see - I did not know that Urso could cause weight gain. Btw - although my Alt and AST are just slightly raised - my GGT - unlike yours - is high. I know that is the case with PBC - but also wonder if my high arsenic levels could be causing it and perhaps no longer being exposed to arsenic in our water - will bring it down. Thanks again, periwinkle88 - for your reply and info…
Urso doesn't cause weight gain in everybody. If you have PBC it's better to keep your liver happy than worry about the weight gain, because it may not happen. I don't know about the high arsenic causing the high GGT, though interestingly I have lived near what is now a superfund site for much of my life, after smelters spewed arsenic in our area for decades. The smelters were torn down many years ago, and they are still cleaning up.
Thank you, Kakey. Yes - I have researched the Milk Thistle and have concluded that it has been of help to me - but I know many believe otherwise. Do you have further insights regarding it? Thanks kindly.
Should clear it with your hepatologist before taking any meds or supplements even if “all natural.”
I usually ask my hep to opine on anything I take on a long term basis. I get as silly as asking him if I can drink kombucha (it does ferment to a bit of alcohol) or drink turmeric tea. He told me both are okay to drink.
Thanks - Yes ninjagirlwebb - the gastroenterologist knows the supplements I take and he did advise no herbals. I am seeing a hepatologist on Thursday and will certainly list what I take there as well.
My thought is that it may be that the milk thistle has kept me well this long… I take only very good brands of supplements prescribed by a naturopath. I used to take curcumin but read that there has been a rare case where it may have raised someone’s liver enzymes so I had discontinued that.
It is curious to me though - why my Gastroenterologist says that the high level of arsenic in my system is not what affected my liver enzymes - (he would not even order the test when I told him I suspected arsenic due to the high level in our water - he told me I could ask my primary care doc to order it) - yet he would be concerned about milk thistle - which has always eliminated the little pings I get in my gallbladder after I eat a fatty meal….
That said though - if the hepatologist recommends against it - I plan to comply.
Makes no sense why the GI defer the arsenic test to your primary care doctor.
My hepatologist is also a GI and he orders whatever tests I need, he wouldnt tell me to go to my primary care doctor. You probably dont need both a GI and a hepatologist. Hepatologists are really GI’s with a special interest in the liver.
Hopefully you will have a good rapport with the hepatologist.
Thank you, yes - I hope so. My gastroenterologist was insightful enough to order the in depth liver panel even though my ALT/AST were only slightly elevated on my yearly bloodwork - but he would not order the arsenic. Also - he said that I didn’t really need a hepatologist unless I wanted to consult one - because he (the gastroenterologist) could treat me.
He’s very nice - and I’m grateful to him that he had the insight to order that liver panel and discovered that I have a liver problem - but Im not confident with him right now - because he immediately suspected AIH and has dismissed the possibility of PBC when I inquired about it. I’m sure a liver biopsy would clarify and prevent a misdiagnosis - but still - I think the hepatologist will have more experience with autoimmune diseases….
Hi Friends,I did see the hepatologist today - and he says that I am predisposed to PBC - (based on my having a high Titer of AMA’s) - but I do not have the second necessary criteria - (elevated ASP) - so I don’t need any treatment at this time. I just need to do bloodwork every 6 months to see if anything changes. He believes that at my age - 65 - it’s not likely I’ll be having a problem with this in my lifetime. He’s also ordering a Fibroscan just for further info.
I again - thank you all for your insights and concern - it’s been very helpful. I’ll continue to follow this site to update and continue learning and also keep up with how you’re all doing. Sending wishes for you all to do well. ❤️
Thank you! Yes - and as I was leaving he said - I did a good job advocating for myself. I’m rather puzzled as to why the GI could even suspect AIH - turns out he’s rather new snd not so experienced- but even I as a lay-person researching this could see that it looked closer to PBC - and yet did not have numbers high enough to even treat….I hope you will continue doing well also, ninjagirlwebb!
Thank you for your thoughts. Keep advocating for yourself. Hope your GI learns from this experience and not jump to conclusions without a good understanding of the situation. Most patients would not 2nd guess the doctor.
Thank you, Kakey! Yes - he does not believe the arsenic is the cause of this and he is fine with using Milk Thistle. I asked if going on Urso to treat the gallstones might be a good idea and he said no one is using Urso these days for that purpose and it is not a true desiccant - but it would be fine to continue treating with the Milk Thistle. Hmmm - I still wonder about the Urso though……
Oh - and he did not advise removing the gallbladder because I do not have cholestasis. I wonder about this though - because I did see a surgeon the GI had referred me to - who recommended removal soon - to prevent possibility of a stone coming out into duct. I wouldn’t want that to happen - and have also read that the gallbladder can burst! I will talk to a Naturopath on ways to keep those stones in check - and will probably still consider whether or not I should have it removed at some point…
I have read, btw that 10% of people have AMAs in their bodies naturally - mostly women - and only 1.5 to 2% of them go on to get PBC - but he said that my Titer is rather high - so it indicates that I am truly predisposed.
Btw - it’s interesting that he also said that GGT is not a good indication of anything because it can change daily - and that it is a useless test promoted by insurance companies and mainly used to test for alcoholism. Interesting…
Thanks so much for sharing your discussion. That's great news all round for you, hopefully you'll continue to do well, and you will not go on to develop PBC.
Thanks so much, Kakey! Before I saw this reply - I edited and added a second paragraph above regarding the gallbladder issue - in case you are not notified of the edit and would like to read it….xx
You are right you don't want a stone in your common bile duct. I had that, and it was really bad. I think it may even have kicked off my liver issues. I had to get my GB out, as it was an emergency situation, but I didn't feel any better for it. I'm not sure what I would do if I had it all to do again.
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