I was diagnosed nearly 2 yrs. ago. I have been going to a gastroenterologist & once a year I receive an ultrasound of my liver, which was normal. Recently, I changed over to a hepatologist, due to the fact that my gastro Dr. informed me she was not that familiar with PBC, & wanted me to see the liver specialist. I am told I am in stage 1. I am asymptomatic & feel great. So anyway, once I changed doctors, the liver Dr. ordered a MRI/MRCP. I took this, & he called to say it was fine, but wants me to repeat it in 6 months. I asked why & his reply was that some of the pics were not very clear & although he does not expect to see anything different, he would like for me to have the test repeated in 6 months. My question is this. What ever happened to the normal once a year liver ultrasound? Why am I having this much more extensive & expensive test instead, & twice a year?? Has anyone else taken these test & 2x per year?

7 Replies

  • Hello WendyMarie.

    Sorry to read of your recently problems with these tests. Are you in the UK?

    I was diagnosed here in the UK back in Dec 2010. I have only h ad an ultrasound a few months prior to having the AMA blood test that along with my itching and fatigue and abnormal LFTs gave me diagnosis of PBC.

    I am still itching but fatigue left me long ago. Been on urso almost 4yrs now. LFTs still abnormal but said to be quite ok for someone with PBC.

    I don't go in for stages and as a gauge think I am early stages accordiong to the hospital consultant at diagnosis, his words were, "You've probably had it a few years".

    According to the consultant when he looked at my scan on my first hospital outpatient appt start of Nov 2010 he said it looked pretty much normal and he said he could see bile ducts, they appeared clear. I attended his clinic for 12mths and he never mentioned a further ultrasound scan. I was doing quite well at the time, no fatigue by then but the itching was still with me but has subsided somewhat since urso and my LFTs were coming down. I asked for a discharge as I couldn't see the point at the present time of returning and he agreed with me when I explained, saying that in future if anything of any concern I would be referred back. I've not seen him now for 3yrs.

    Now I saw a programme on tv only 2mths before I was informed I had PBC and it was live on air at the time. There were 2 men on, one was I think late 20s now and he was quite overweight and the scan that was shown as the doctor was performing it and pointing out things showed the man to have a fatty liver. The other man was about my age at the time (I am now 50) and he was an alcoholic. He was shown to be in the stage of cirrhosis. So my deduction from this is that if these things can be seen on an ultrasound why go further to an MRCP. I know an MRCP can show the bile ducts clearly and it can also deal with certain things at the time but I did think that unless one was showing certain symptons in PBC one wouldn't be performed. The reason I asked if you were in the UK as I somehow don't think that one would be performed withuot adequate reason, the ultrasound is the basic one.

    Have you asked your doctor about why perform another one. Without an adequate reason to me anyway and I speak as if it was myself who is in this situation, I'd defintely want a good reply before I considered such. But at the end of the day even with an explanation it is entirely up to yourself whether you want to proceed.

    I know in America it seems the norm for someone who has been diagnosed with PBC to then undertake a biopsy if they wre diagnosed without. Seem to want to have some stage. I know for me I haven't had a biopsy as I was diagnosed without and I'd not have agreed to one of these just for a stage as for me at the end of the day it wouldn't have altered any treatment at all plus I see a lot of tests whether simple or evasive to be of some risk and if I can do without.

  • Thanks for your reply Peridot. I am in the US. The bottom line of this problem is that I don't understand the purpose of having the MRI & MRCP, v.s. the annual ultrasound, especially when my other test results are doing well & I am asymptomatic. (so far) Even if he finds something in the tests, what can be done about it? Nothing, except continue to take the Urso. So why put myself through this unnecessary stress? I am worried that if I refuse this test, the Dr. may get an attitude of disgusted with me & back off from trying to be through in the future. He already told me to stop worrying about this PBC & let him handle everything as he finds necessary.

  • Hello again WendyMarie.

    Any good doctor should understand his/her patient and be prepared for patients to want to discuss further or air their own views.

    I personally do deem it unnecessary too. Can you not just barter for possibly an ultrasound with the doctor? I'd certainly give it a try. Out of interest the MRCP do you have the dye with that as you can to see bile ducts. I know in this day and age I do think myself that with ultrasound and LFts being monitored plus the patient progress a doctor can get a pretty good idea of how a patient is with PBC.

    From past experience (my former late husband) I sometimes find that you have to ask a doctor why certain things and I'd personally not leave myself to my doctors. Doctors might do good things for us all but I also think that at times not listening to a patient can be of some detriment.

  • Thanks for your quick response. I look back on my life & the health issues I have faced, & think there have been a few unnecessary tests, that I regret putting myself through. This is the best doctor I have ever encountered in my entire life. He is super kind, genuinely cares about his patients, & is also a genius in his field of hepatology. He is the director of the transplant clinic in a huge hospital that is rated #2 in the country. He did his internship 28 yrs. ago under Dr. Gershwin. So I am quite intimidated by him as well. He tells me to trust him to make the decisions concerning PBC. When I asked him why he wanted me to repeat this test in 6 months, he only stated that he wanted clearer pictures, because the last MRCP was not that clear. Yes, I had the dye with the MRCP, but not the MRI. I also wonder if his extensive thoroughness is maybe partly a cultural thing, since he is Japanese. It seems that doctors from other countries I have seen before, such as India & Africa, seem to be far more extensive with their testing, than American or European doctors. (?) Just wondering if anyone else thinks this.

  • I'm in the US and seeing a hepatologist. I initially had an MRCP to rule out any other issues--mainly cancer--to be honest. I am on URSO, stage 2 PBC, and have quarterly blood draws, and 1 yearly ultrasound. That is what my hepatologist said. He said the ultrasound was to look for enlargement of liver and spleen. Check for tumors etc... Otherwise, he will watch my bloodwork for any weirdness with my bilirubin, albumin, and LFTs.

    Hope that helps. MRCP sounds weird to do again in 6 months. It is also expensive.

  • Oh--and my Dr. is from India.

  • My consultant in Cambridge has told me her wants ultrasound scans every 6 months because there is a higher risk of cancer - at least in my case - and he has the chance to do something about it then. I have four 'moles' on my liver. Had an MRI in March.

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