Mayo clinic

[Mg40]

Has anyone gone to Mayo Clinic in Rochester, MN, USA for diagnosis of PBC and then followed up. I have PBC for past 7 years now. I take Urso regularly and see gastro once a year. My results are not normal but it’s only slightly high. I was wondering if Mayo Clinic’s diagnosis be any different from already diagnosed PBC. Many people told me that I should get myself checked up again with them. I know PBC is progressive and there is no cure as such but I wanted to know others opinion on seeing a new clinic for PBC and if it made any difference to their liver results.

[ninjagirlwebb]

It wouldn’t hurt to get a 2nd opinion if it eases your concerns. Have you ever seen a hepatologist (liver specialist) for your pbc? Who is monitoring you on the condition currently?

Haley

[Mg40 in reply to ninjagirlwebb]

I used to see gastroenterologist for about six years twice a year and then I switched to hepatologist once a year and now I am going to see bile ducts specialist. Not sure who is the right specialist for this in Minneapolis. My hepatologist had no patients who had PBC otherthan me so she was not a good source of information. My energy levels have been mostly down after I started OCaliva. I have stopped it for two weeks now.

[ninjagirlwebb in reply to Mg40]

Please don’t take yourself off meds unless your doctor approves. & yes, if you can’t find a doctor knowlegeable to assist with pbc, would be best to go to the Mayo clinic. Maybe they can recommend someone in your city or work in tandem with your GP or gastro on this.

Good Luck.

[EileenUSA]

Do you have the details- labs etc.. that were used to diagnose your PBC? I'm asking because you mention wondering if Mayo would come up with same diagnosis.

The AMA specific antibody test and elevated Alk Phos

and sometime biopsy is useful ( to rule out or in an AIH overlap)

Anyway if you don't have old records, you could ask current dr. what criteria was used to diagnose your PBC.

Might help you decide if second opinion is needed.

Are you questioning now because labs are rising?

[Mg40 in reply to EileenUSA]

I have all my old labs. I am asking because I was told that Mayo Clinic is great but I was already diagnosed and being treated so I don’t see a point to go through all the procedures and biopsies again unless they have found a cure. I dont have overlapping condition but my Alkaline phosphate is always higher than standard even after taking Ursodiol and OCaliva. So I wanted to compare with people who have been to Mayo Clinic and being treated.

[Michi1]

It’s always good to go to the best doctor for what you have. Mayo is among the best in the US.

[SunnyXXOO in reply to Michi1]

Hi Michi1, I heard Mayo is the best.

SunnyXXOO

[doodlelove]

Hi. Regarding Mayo, I went to a gastroenterologist in 2011 where I live. From my labs he suspected liver disease and ordered a liver biopsy. He didn't like what the doctor who read the biopsy said and sent my sample to Mayo in Rochester. They came back with a diagnosis of PBC and autoimmune liver disease. He recommended a hepatologist about an hour and a half away, who I see once a year. He is great. Also, he used to be at Mayo Clinic and now teaches at the university. I am very confident in his care as PBC is his passion and I have nothing but great things to say about Mayo Clinic.

[Mg40 in reply to doodlelove]

Thanks for your reply. If you don’t mind sharing what medicines you are taking then it will be great. Are your liver function tests absolutely normal with medication. Do you follow any specific diet?

[doodlelove in reply to Mg40]

I was told I have stage 1. My liver function tests have been normal. I take urso 750/day. Then he has me taking calcium 1200 mg and 1000iu of D3 daily. I do have Hashimotos so I also take 75mcg levothyroxine daily.

I do experience fatigue but no itching so far.

I do not follow any special diet but fatty foods make me feel sick so I stay away from them. I also have IBS, so he encouraged me to regularly take MiraLax which I do 3 times a week. I also have been drinking lactose free milk and have been feeling better since starting that. Used to be, I just felt lousy all the time especially after eating.

I believe you have to tweak things food wise to see what helps you to feel better.

Hope this helps, friend.

[rrs333]

I went to Mayo and had a great experience there. I am originally from MN, so I have a lot of family and friends who have also had positive experiences there. My primary reason for going was to avoid a biopsy, which is not always necessary for a diagnosis. Instead, they ran blood tests, and I had an MRE (Magnetic Resonance Elastography). MRE is kind of like a specialized MRI. It takes some time, but is completely noninvasive. It is very good at showing any liver fibrosis or cirrhosis. I believe Mayo actually invented the MRE. They put me on Urso, and so far I have been responding well. I also had a bone density scan as part of my visit, since PBC patients are at risk for osteoporosis.

The doctors there who I saw are great. They will sit down and talk with you as long as you need. They are paid on salary, so they are not rushed like most docs. Since I have been responding to Urso, I just have blood tests done locally every few months (I am in TX), and my Mayo doc gets the results. If I continue to respond well, I should not have to go back to Mayo more than once a year at the most just to check in. My Mayo doc is amazing about responding right away via email to any questions I have.

Mayo was in network for my insurance, so the cost was about the same as a biopsy done locally would have been, possibly even a little less. If you go, they will tell you to set aside at least a week in Rochester to get everything done. We got an Airbnb to save on costs; there are many there.

Let me know if you have any other questions, and good luck!

[Mg40 in reply to rrs333]

Thanks that’s very helpful. Airbnb is a very good idea. I will certainly get myself checked there next year. I was reluctant to go there as I already am on medication and did not see what different diagnosis they could come up with. My Alkaline phosphate after 1000mg of Urso is 195. Then I started OCaliva 5mg a year and it went slightly lower but still higher than normal range but my fatigue gone higher. That’s the main reason I thought I should get checked there and see if I really need OCaliva. Or there might be another underlying health reason for my alkaline phosphate to be higher even with medicine.

Have your LFTs come back to normal? Are you on Ursodiol only.

[rrs333]

Yes, I have been on Urso only since March of this year, and my tests are all normal now. I went from ALP of 174 down to 74. My ALT and AST were only slightly elevated in the 40-50s, but are now down in the teens.

I don't know if Mayo would necessarily find anything different for you, but I have heard that they are amazing at unwinding medical puzzles. In my case, I was pretty sure it was PBC, and I primarily wanted to avoid a biopsy. I was very reassured when the MRE showed no fibrosis, just some inflammation. I also liked that the MRE shows more of the liver than just the small sample of a biopsy.

I have heard that high ALP can be a sign of bone issues as well. Have your doctors ruled that out for you?

[Mg40 in reply to rrs333]

Thanks. Your info is very helpful. I think I should get bone density test done. I will ask my doc.