New on here and seeking advice

[Pootleflump]

Hi everyone. Until last week, I knew nothing about PBC and I have found out a lot from this forum and from the pbc foundation website. So thank you. I am going to see my GP this week, and I am looking for some advice. First a brief background. Until 4 months ago I was well ... then I started getting terrible fatigue, brain fog, IBS-like bloating and pain. My GI specialist found that I was TPO antibody positive and my thyroid levels were off, and I was diagnosed with Hashimoto’s thyroiditis. I am now on medication for that. He also found gallstones on ultrasound and very low levels of Vit B12, iron and Vit D and startled to suspect I might have pernicious anaemia so sent off bloods to test for gastric parietal cell antibodies. However, he told me last week that because of the presence of AMA M2 antibodies they can not get a reading for gastric parietal cell Abs so I can not confirm or rule out pernicious anaemia (my intrinsic factor is negative). He tells me that I do not have PBC as my LFTs are normal but that my AMA M2 levels are a precursor to PBC so I will need to see my GP to be monitored (level detected - titre of 160). This was an incidental finding but he has now suggested I stop the B12 and just do annual labs on B12 and LFTs to find out when to intervene. He does suggest I have my gallbladder out, but I am not convinced that the pain is related (my pain is more central and left sided if anything). I know you can not comment on the other autoimmune conditions, but I am still so tired all the time despite titrating up my thyroid Levo medication so the reason for my post is simply to ask whether the tiredness could be related in any way to the presence of the AMA antibodies and whether this level (160) is likely to be clinically relevant for fatigue in the absence of a pbc diagnosis (I read somewhere that above 50 meant it was more likely to progress to PBC more quickly but I have no idea if there is any more relevance). Sorry for the long post but I welcome any comments before I see my GP this week. He knew very little about Hashimoto’s so I suspect AMA Ab positivity and PBC will mean very little to him too. Thanks in advance.

[butterflyEi]

Hi welcome to the group, as you have probably already found out PBC is a difficult one to get diagnosed in part because the doctors are still not really aware of it and will look for more common ailments first. As you have also probably learned fatigue and itching are the two main symptoms although more symptoms are now being recognised such as brain fog.

I have been diagnosed with pernicious anaemia and one doctor said that I was a typical candidate for PA being over 60 blond haired and blue eyed - I don't know if that will help and I am sure there are others with PA younger and dark haired but it is what the doctor said. I have discovered being low in B12 can cause tiredness and brain fog. If it is not PA then a B12 supplement would help, I understand that the spray is very effective but if you are having blood tests in the future any supplementation would skew the results.

I think trying to isolate fatigue to PBC is difficult as a hashimoto symtom is also fatigue as is PA.

I wonder if a referral to a hepatologist may give you the answers you are looking for, although there is currently no treatment for fatigue in PBC.

A telephone conversation with one of the advisers at the PBC Foundation may also be an advantage to you.

good luck, come back and let us know what happens.

[mrspeffer2]

Good Morning....You have found a great forum for so many disorders and ailments. I'm sorry to hear you are having to deal with any of this. What surprises me is that this doctor who diagnosed Hashimoto's neglected to tell you that AMA's are a sign of autoimmune processes. Hashimoto's is autoimmune. If you LFT's are normal, I would not be concerned about PBC. The fatigue and brain fog are most likely related to your thyroid condition. Maybe once you are at optimal dose of medication for your body, these symptoms will lessen or hopefully subside. I do not Hashimoto's but I have had thyroid cancer and a total thyroidectomy. When my levels of medication are off, all the symptoms you described come back in full force. For me NDT works better than synthetic thyroid. I use Nature-Thyroid, as I need the T3 to have any energy. I never thought pain and thyroid levels would correlate, but for me they sure do. So....take a big breath, be grateful you're autoimmune disease is very common and easily treatable. I would follow up with labs just to be sure, but unless those LFT's get crazy, that is one less thing to worry about.

Just one more thought....It is very important to take your thyroid meds ONE hour before coffee, food, other meds. You need to wait 4 hours before you take any calcium. Let me know how you do. Be well