Hey folks. Just wondered how often everyone got either a ultrasound or fibroscan?
I was told last year that I should have bloods done every 6 months and an annual fibroscan. Well, when I went for my yearly review the doctor said I no longer need a scan because my bloods are normal. I am delighted that urso appears to be working but I was under the impression that we may still progress even with normal bloods. What’s everyone else’s experience?
Hmm that's a good question. First of all, great news that your bloods and response to Urso are good!
My Hepatologist has been fairly laid back after he established that I've been largely stable for some years and getting a reasonably reassuring Fibroscan.
I'm now on annual consultations and I feel okay with that, knowing that if something changes (e.g. bloods) I can ask to be seen sooner. Probably I could request an annual scan if I wanted.
To summarise, I think the ideal is a partnership with your hepatologist so you're both happy with your chosen approach. Don't be put off though if lack of monitoring causes you to worry; speak up. A calm mind is good for us!
Best wishes
I am in the US & my hepatologist likes to see me every 3 months. He does labs, listens to my updates, & offers his insights. We do a sonogram every few years. I did a fibroscan this year because I read about it on this site & asked him to explain what the test does. He actually has a machine in his office so he offered to do one & reviewed the results with me that same day . He said we can do one every few years to put my mind at ease.
He also orders a Dexa for me every few years to check the bone density.
I’am In the UK and apart from the 3 monthly bloods, endoscopy and ultrasounds at diagnosis when I first went on URSO. My routine had been the same for 8 years.
I have always had six monthly bloods and an annual ultrasound of the upper abdomen. Last year when the hospital got a shearwave sonogram (fibroscan) the consultant added this , which she will repeat again in 3 years. So until then I’am back to annual ultrasounds this is to watch for any changes that may occour.
Hi Angel_b my ultrasounds vary dependant on what my bloods are like, I have had 5 scans in 9 years, but also had a CT scan a couple of years ago, I think it's different for everyone, and doctors appear to do things differently, I'm due to see the consultant in September so I'll find out more then, if bloods aren't good I tend to see him 6 months later, if there's no change I will go longer,I do have a few health issues besides PBC, so like I said, different for everyone. I hear what you're saying about progression even though bloods are ok, I've actually taken things in my own hands and stopped the Urso 5 months ago as I felt nauseous all the time, (not recommending you do this) but nausea has improved, for me, if the outcomes are no different even though bloods are ok, my logic is why would i take something that makes me feel unwell. I'm sure the consultant won't be best pleased but he doesn't know what I feel like either. hope this makes sense, good luck.
Thanks guys.
I am delighted with my bloods and the doctor seems quite confident. So think I’ll just have trust him and relax. It’s sometimes difficult to know what’s best because everyone seems to be monitored differently. But I suppose it’s probably as everyone’s case is different.
Hope everyone is doing well and enjoying the weekend.
Best wishes
My hep has arranged a consultation in 12 months time bloods to be done every 6 months i had ultrasound recently she said she will do a fibroscan in 3 years time
Angel_b...your last comment is true. My labs have been normal for 6 months or more & my fibrosis score increased a small amount, but increased. But that may not be true with everyone.
It’s such a strange disease and so much conflicting information out there. Maybe we just need to judge more by how we are feeling.
I agree. I feel perfectly normal. Lots of energy. Eyes are white, urine clear to light yellow. Great appetite. 👍🤗
This question about the value of the LFTs in indicating the progression of PBC has been raised before - I have also posted the article below a couple of times here. The article is no longer available on the Pbcers.org 'Question and Answer' site, but I had saved it. Also, I am one of those who are Stage 4, on Urso and have near normal LFTs.
"
Howard Worman, MD
Division of Digestive and Liver Diseases
Departments of Medicine and of Anatomy and Cell Biology
College of Physicians & Surgeons
Columbia University
New York, NY 10032
December 1999
Question
Is it possible to be in stage 3 or 4 by the biopsy and have normal LFTs taking Actigall or URSO? Are the LFTs actual indicators of the disease progress?
Answer
I always tell the second year medical students that "liver enzymes are NOT liver function tests (LFTs)." The term "LFTs" is a terrible one and really should not be used. [Help me convince your doctors!]
The values of the blood ALT, AST, alkaline phosphatase and gamma-glutamyltranspeptidase (GGT) activities do NOT tell you about the function of the liver. They also do not tell you about disease progression (i.e. the development of cirrhosis or deteriorating liver function). The so-called "LFTs" can be normal in individuals with end-stage liver disease.
In contrast, they can be markedly elevated in individuals with liver disease but normally functioning liver. In PBC, ursodiol (Actigall or URSO) may lower the blood alkaline phosphatase activity in the setting of significant liver damage (Stage III or Stage IV histology).
The best biochemical tests of liver "function" are serum albumin concentration, serum bilirubin concentration and prothrombin time. In PBC, the serum bilirubin concentration (which may also be lowered by ursodiol) is probably the best biochemical predictor of disease progression."
That’s interesting DianneS as I only usually get ALT AST and ALK PHOS checked. The doctor took some blood to check bilirubin etc this time as haven’t been done for over a year.
I learned that from Dr Gish as well. The true LFT is bilirubin. He says “direct is the main one. Should be .30 or below.
That article seems to be dated 1999 . Perhaps diagnosis and prognosis have developed and changed since then . I prefer to read the more up to date articles written by some of the top professors in the Bear facts news letter and go by what my consultant tells me. As I believe things have moved on a bit.
Yes, the article is dated, but as I said in my post I am one of those who is Stage 4, been on Urso (for 25 years), and have near normal LFTs, so this article reflects my experience.
The only difference I can see about the diagnosis of PBC is that people are being diagnosed earlier. As for the prognosis, unless they find a cure I can't see that changing either.
Yes thank goodness we have earlier diagnosis now . Which is better long term hopefully for everyone . I wish you well .
I have a fibro scan yearly but although my bloods show I have responded to Urso they never returned to completely normal.
I am under Kings College in London and I have my bloods taken every 3 months, I have an ultra sound every three months, a fibroscan annually with a CT contrast scan and a endoscope. I don’t respond to Urso but appears to be responding to Ociliva. Have you had your disease staged think that may determine when you need various tests. I’m Stage 4 with fibrosis so not heading in the right direction. I have also responded to my disease by changing my diet completely. Not sure what helps but every little effect is good. Best advice I’d give it to own you condition don’t let it define you and don’t think too much about it but Live life to the full.
can young people get PBC?
Do many people with PBC have pain in the area of the liver?
How can people be so cruel
Advice about getting a fibroscan
