Saw second liver specialist yesterday. I wish everyone could have as caring and informative of a specialist as she is. She is at George Washington University Medical School, so for those of you in the UK unfortunatley it would be hard to see her. Anyway, there were some anomalies with my tests, the blood said AIH the biopsy PBC. So the second opinion is good plus she is also a pathologist. Anyway the best thing about Dr Latham is she listens and seems to treat me as someone with PBC not as a PBC with a patient attached to it, like so many doctors do. Also she is the first medical professional besides therapists wh has asked me how I was doing coping with this. Just her asking made a difference.
I don't know about you guys, but I sometimes feel as if the non-specialists think I am just a complainer because there are so many complaints. This brings up the age old question, (not not the one about the tree falling) the one about the hypochondriac;, are you a hypochondriac if you actually do have all these things wrong with you?
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Maddieroo
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Glad you found someone to listen and explain to you. -
You said- "I sometimes feel as if the non-specialists think I am just a complainer because there are so many complaints". I absolutely agree. Even my husband was beginning to think so. Then we got the AIH/PBC dx and he mellowed out for awhile. Then I started having problems with my heart and they couldn't find
anything and then it was back to 'his' complaining again. - Then a heart specialist had me go thru a newer heart test and found there was/is a problem. So my husband doesn't say too much anymore. - My original PC (GP to you all on the other side of the big water) is very compliant but I think she thinks along the "complainer" lines sometimes.
Well, "life is grand if you don't weaken". The AA (Alchoholics Anonymous) has a saying that can be applied to most everything > "One day at a time".
That is all we ever have anyway so might as well do the best that we can each day.
I am also very lucky in my GP and Consultant. When I was first diagnosed I went into shock disbelief etc. But my Consultant reassured me, and gave me the relevant information and said it in laymen terms, I still didn't take it all in and he handed me a PBC Foundation UK Leaflet this was in July 1996. My Husband phoned Collette Thain and the rest is history. I found out I was not alone and have never looked back.
Your prognosis is exactly the same as mine. Bloods indicitive of AIH but biopsy came back with PBC therefore diagnosed with AIH/PBC overlap syndrome.
From what you say in your blog it sounds to me like they are only treating the PBC and not the AIH! If that is the case, Why? Are your LFT's okay then?
My LFT's were high (due to the blood results) and I have been on a steroid for 4 months (currently being wesned off it) and I am also on an autoimmune suppressant (for at least 2 years) - this is the standard treatment for AIH. I am also on Urso for PBC.
Please let me know what your specialist told you the other day. I am really interested in your treatment plan. x
Good questions Jtxx. What is LFT? Apparently they think I do not have AIH too, even though blood says ASMA (atit-smooth muscle antibodies). When I asked the liver specialist as to why I might have ASMA in blood but nothing on biopsy, she said that ASMA is not necessarily a sign of AIH by itself, and ASMA can indicate other stuff in the liver like PBC. I will discuss this with my lupus specialist. I am glad that I don't have to take steroids and Imuran again. Unfortunately, I took one URSo pill and I had such bad heartburn/acid reflux that I stopped at one and am trying to get acid under control before I try URSO again. So complicated!
An interesting side note which is very telling about medical treatment here and in UK. We should all have veterinarian's give us treatment, they seem to be more caring! My cat had a very high fever yesterday and while the vet was examining her and explaining everything to me, I mentioned my new PBC diagnosis. He was concerned that I might be on immune suppressing drugs and wanted to make sure I didn't get scratched by kitty. I said I was only on URso but that it gave me terrible heartburn. He recommended I try a pharmacy not too far away that gives urso in tablet form that might be better handled. He looked up the number and wrote it down for me! Also, the cat's test results were ready this morning and they called to see how she was doing (nobody called me to see how I was doing after biopsy). I wish I could go to the cat's doctor instead of mine! (I don't think I would fit on the scale though. Unfortunately I don't have insurance for cat so the bill was astronomical, I will have to rob a bank soon (Ironically one place in America where you can get free health care is in prison!)
LFT'S stands for Liver Function Test. I take a tablet form of Urso which has been fine. I also take Omeprazole to counteract the indigestion and reflux caused by my autoimmune suppressants. Hope this helps. X
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(Ironically one place in America where you can get free health care is in prison!)
Seeing liver specialist tomorrow
Right sided pain fatigue. GI specialist confused. 
Biopsy results back... 
New research on PBC and light therapy
Finally Seen Specialist 
