Hello PBCers

[upintheair]

Happy New Year! I am so glad I found this community of fellow PBCers both for support and for information. I'm glad to be here and would love to hear everyone's story. As for me, I was diagnosed 12 years ago. I've been taking Ursodiol since my diagnosis and I am thankfully still in stage 1.

[Ballymahon2]

Good to hear you you are doing well

[Hidden]

Happy New Year! All the best in 2018!

I was on statins for high cholesterol & my LFT's fluctuated slightly above range, but my then primary care physician, PCP was not concerned because statins can cause elevated LFT's. He also thought it was caused by a fatty liver as I was a bit overweight. My PCP was trained in internal medicine & he sub specialized in pulmonary medicine. I only used him for general internal medicine concerns.

He was out on medical leave & the doctor covering for him noticed the elevated LFTs 2 months in a row and as his due diligence sent me to a GI for further investigation. That GI wanted me to do a biopsy but I was too scared to do so. Also I thought it was the statins, so I proposed stopping the meds to see what happens to the LFT's. He agreed we can do that before resorting to a biopsy.

For whatever reason, while I am sure that GI is competent & knowledgeable, I just didn't like him. So I found another GI & consulted with him, giving him my blood test results over the years. This GI also practiced internal medicine & was a primary care physician.

Because of my elevated LFT's & the fact that my other doctor was not as readily available to me as he used to be due to his own health issues, I switched over to this GI as my primary care doctor. I liked him a lot more than the first GI I consulted with.

So under his care, my LFTs fluctuated & hover every so often a little higher than normal range. I also completely overhauled my diet & lower the dosage of the statins. After ~2 years of these fluctuations, my doctor felt that we needed to get to the bottom of it because he was concerned about my liver. He asked me to do a biopsy. I was very hesitant & he sensed it. So he said, okay let's do a sonogram first. The sonogram came back normal.

He then said, okay, I know I won't be able to convince you to do a biopsy. So I am going to send you to a specialist (Hepatologist) & maybe he can convince you. He also told me that the hepatologist was extremely nice & he promised me that I will like him. (I am a bit of a diva. I need my doctors to have a great bedside manner in addition to being experts at what they do. He, once sent me to a dermatologist whose bedside manner was totally lacking. I didn't like him at all. So I went back to my doctor & complained. He laughed & told me we will keep looking for another one until we find one you like.)

So the hepatologist saw me & did more tests & promised me he won't ask me to do a biopsy unless absolutely necessary. He is like the best doctor I have. My PCP was so right about this doctor. At my first consultation, he spent a little over an hour with me. He wrote everything down for me on how we were going to investigate what is causing the elevated LFT's & all the possibilities. He made a copy for me & told me we will cross each of this off together until we find the answer. Told me I was his last appointment that day & that we can spend as much time as we needed to discuss my case & get all my questions answered.

I have to say, my GI-PCP is also wonderful. He had sent my tests to the hepatologist & discuss my case with him prior to my appointment.

Anyway I ended up with a biopsy & got put on urso. Though I have this condition, I am grateful for my doctors. I know I don't have to worry because they will look out for me & take care of me. They are always available to me via phone or secured email.

Sorry I wrote you a book!

[Mirimaur in reply to Hidden]

I feel as you do , it’s scary but with kindness and compassion along with their expertise our specialists can make us feel so much better and less fearful . I have a wonderfully kind Professor who I trust completely . My Urso seems to have put my L f t s back the normal . Wish you well

Mirism x

[Hidden in reply to Mirimaur]

All the best for 2018!!!

[upintheair in reply to Hidden]

That's an interesting story, nycgirl2012. I think it's so important to have trust and confidence in your doctor. A pleasant understanding manner goes a long way to make you feel taken care of, providing the medical competence is there, of course. You have to feel there is a rapport and that your questions will be welcomed and answered thoroughly. If you don't mind my asking who is your hepatologist?

[Hidden in reply to upintheair]

I am sending you a private message on that.

[Hidden in reply to Hidden]

Sent you that with a link in message.

[upintheair in reply to Hidden]

Thank you. I got it. I may one day want to see a qualified and compassionate hepatologist if my disease progresses, so your recommendation is very helpful.

[Hidden in reply to upintheair]

Great! I hope you have good doctors looking out for you now. Makes all of this much better.

Take Care.

[Hidden in reply to Hidden]

How do you send a private message?

[gwillistexas in reply to Hidden]

From home page you will see “message “ toward right at bottom. Click that

[butterflyEi]

Hi upintheair

Hello and Happy New Year.

My story in brief is that I presented with symptoms back in '96 but it took until 2004 to get a diagnosis. Since then I have been on Ursofalk. In 2014 the so called itch of PBC kicked off after a stressful event and it took until 2017 to be referred to a hepatologist to get the right balance of medication to keep me sane. I have a good hepatologist but a mediocre surgery. Some GPs are totally understanding but some of the female doctors are less so. In the UK we don't seem to be staged but I hope that my PBC is one of the slow progressing ones.

Glad you are doing so well.

best wishes