Which tests do your providers recommend annually?

[SciFiWriter]

Hello Everyone,

I was diagnosed in 2018 and have had no issues, as bloodwork abnormalities led to my diagnosis, rather than symptoms. Fortunately for me, after I began taking Ursodiol, I have had normal bloodwork also. However, I've bounced around providers, in part due to the pandemic, and in part due to changing primary care physicians. Currently, I only see my PCP, who prescribes medication and insists on a liver ultra sound annually, to look for signs of advancement of disease. My question is what tests do your providers consider appropriate, if any of you are fortunate to be asymptomatic?

[Candy12]

It didn’t say where your from so my experience may differ I’am from the UK. I had/have annual ultrasound and six monthly bloods. I had this when I was first diagnosed and I was also asymptomatic at the time. I also had a one off DEXA scan to check bones.

I’ve always been seen by a consultant gastro since diagnosis not a GP.

I still have the same level of testing even now after 14 years, although I now have fatigue as well.

The hospital where I go, to the tech to do a sheerwave elastography so I can have one if I request it. Hope that helps.

[SciFiWriter in reply to Candy12]

Yes, that helps. I'm in the southern US and have seen a couple of gastroenterologists and one transplant liver physician; however, as I was asymptomatic, each of those providers essentially put me on PRN status, i.e. call if you need anything and see your PCP otherwise.

[DonnaBoll Administrator in reply to SciFiWriter]

Often when someone is seen at a large teaching medical center, they may be seen by a doctor who is part of the transplant team. There is much to be said for this total care approach so they entire team can be involved at any given time. The team can be a social worker, financial consultant, transplant surgeon, and a hepatologist as well. How often are you seen by the hep doc? I hope at the minimum of yearly... most of us in the US are seen every 6 months with lab work in between visits.

[SciFiWriter in reply to DonnaBoll]

The area where I live doesn't have any liver specialists, but the gastroenterologists purport to treat liver diseases. However, I have found that they (the 2 I saw anyway) make their living by doing colonoscopies and don't know much about my somewhat rare condition. My PCP does do comprehensive bloodwork annually, and if there are any issues, he repeats it more frequently, but for the last few years, it has been normal. He also wants me to have an ultrasound annually, and I was wondering if that is appropriate or even necessary, as my bloodwork has been normal.

[DonnaBoll Administrator in reply to SciFiWriter]

Your experience with the GI docs is pretty common. Very few really know about PBC. In this case I really think it's even more important for you to know as much as you can about it - that way you will know if you are getting the right care or know if there might a potential for a problem. Do you have Dr. Jones's book? Sorry if I've asked this before. Available on Amazon... so worth reading and written so lay people can easily understand. The Definitive Guide for Patients With Primary Biliary Cirrhosis. As far as the ultrasound, it is done just to be sure there isn't any evidence of liver tumors or cysts that need observation... Sure wish you could get to a hepatologist though - even just yearly with the lab work in between. I hope you can see you lab work too in a patient portal?? just to make sure all the results are 'normal' and you can track the overall trend especially of the liver panel numbers. Glad you have had good results though. Even though they are 'ok', please make sure you are on the right dose of Urso. 13-15mgs/kg of body weight. Dosage is always based on your body weight - never lab results or symptoms. Glad you posted about this. Hope to hear from you again.

[SciFiWriter in reply to DonnaBoll]

Yes, I have the book. It's great!

[Michi1]

vitamin D level, DXA bone density scan, lipid panel, comprehensive metabolic panel, fibroscan every 2 years now.

[SciFiWriter in reply to Michi1]

I have had all of those routinely, other than I had to ask for fibroscan. I've had two of them, so that would be about every couple of years. I guess I'm on the right track. Thanks.

[DonnaBoll Administrator in reply to SciFiWriter]

yes you are! the lab work for the liver panel, however, should be drawn every 3-6 months according to the Standard of Care. Ultrasounds and bone density testing can be done every 1-2 years.

[DonnaBoll Administrator in reply to Michi1]

Even adding a CBC (complete blood count) is important to often detect any signs of anemia or even infection. The lab work I have done every 3 months is a liver panel, CBC, and a Comprehensive Profile.

[Michi1 in reply to DonnaBoll]

CBC too. I forgot to mention that one.

[SciFiWriter in reply to Michi1]

Yes, my PCP does that annually. And, after I had surgery, a couple of areas were out of whack, so he repeated the test a couple of months later to see that things had gotten back to normal.

[DonnaBoll Administrator in reply to SciFiWriter]

That was a good decision on his part. Events like surgery, illnesses, or stress can cause liver enzymes to rise. Always good to check they go back to normal.... so glad!

[DonnaBoll Administrator in reply to Michi1]

good.... all 3 are important to get done. liver panel, CBC, and CMP every 3-6 months.

[DonnaBoll Administrator in reply to Michi1]

You do get lab work done more often than yearly, I hope? Standard of Care for PBC is every 3-6 months for blood work. Just want to make sure....

[Michi1 in reply to DonnaBoll]

My hepatologist does it yearly, but as a member of Forward I can get labs as part of my membership so I take advantage of that and do them quarterly there.

[DonnaBoll Administrator in reply to Michi1]

What is 'Forward'? I'm not familiar with that.. glad you get your labs done quarterly though. It gives you peace of mind, I'm sure.

[Michi1 in reply to DonnaBoll]

It’s a membership primary care medical provider that is very tech forward. I use them for primary care instead of the inaccessible doc who’s assigned as my primary with my insurance.

[SciFiWriter in reply to Michi1]

Glad you have that. My PCP is a partner in a "direct primary care" practice. It's really good in that I have access to him via email or text. If I need something (prescription refills, scheduling tests, etc.) those are usually handled within a couple of hours. Sick visits are usually same day. It has been worth it, as the PCP I had before (the insurance kind) could take days to do similar tasks.

[DonnaBoll Administrator in reply to SciFiWriter]

Sounds like a much more 'personal' and efficient way to provide care for their patients. Thanks for the explanation. This is in the US?

[SciFiWriter in reply to DonnaBoll]

Yes, it is in the U.S. My PCP is in Watkinsville, Georgia (not far from the University of Georgia.) I've been a member there for a couple of years, and it is so much better than my previous group. I have two scheduled visits per year, and unlimited sick visits, as well as access via text or email. While I liked my other doctor, the practice had been purchased by a medical conglomerate, so she was literally unavailable other than my annual check-up. Instead, I might get in to see a nurse practitioner in a reasonable amount of time. Or one could put in a message on the patient portal and hope someone would respond.

[SciFiWriter]

Ursodiol seems to be working great, as my liver numbers are very stable. I had bloodwork every 3 months when first diagnosed, then every 6 months, and after a couple of years, the gastroenterologist went to once a year. Right now, my PCP does follows that, plus ordering an ultrasound to check for any progression. I don't doubt the standard of care says more frequently, but my PCP just does bloodwork annually, absent any problems.

[DonnaBoll Administrator in reply to SciFiWriter]

I have to be truthful, it does make me nervous that you only have labs annually. I'm just glad as is going well for you. Keep up the good work!!!!