Numbers

[Jaycee]

I have had PBC for about 15 years now, I was given Urso when first diagnosed, it made me violently ill, I have never been on any meds since, I get 6 monthly blood tests 6 monthly ultrasounds, they tell me my liver looks ok. my numbers are as follows. Alpha Phos,143, ALT 11 Bilirubin 8 Albumen 44, they are much the same as the 6 months before. I have low iron and have been given Folic Acid 5mg. I also have mild varices, I also have a large hernia at the top of my tummy which gives me horrendous indigestion .My GP keeps saying everything is ok. Should I ask to see a Heptologist as I would like to know what stage (If any) I am at. Thankyou for reading, any info will be gratefully received.

[gwillistexas]

Seems your levels are doing okay but I think many here would highly suggest you seeing a hepatologist.

[Jaycee in reply to gwillistexas]

How do I go about seeing a Heptologist, do I ask my GP to refer me?

[gwillistexas in reply to Jaycee]

Probably the best way. My GI referred me. Most specialists have to be a referral.

[Kakey]

I agree, a referral from your GP. People who can't tolerate Urso can try one of the alternative medications. PBC foundation has all the info about that.

[butterflyEi]

Hi Jaycee, I see you are in the UK and yes you would have to be referred to a hepatologist or gastro enterologist by your GP. However you can have a look at the local hospitals to see if there is a hepatologist and then ask your GP for the referral. The PBC Foundation may be able to give you some idea of specialists in your area. Your results are good although according to the parameters from my last blood test (they can differ from different laboratories) your ALP is elevated but not by a huge amount. The parameters from my last print out show <30-130> There are now other medications available other than the URSO, obetacholic acid (Ocalivia) which I believe has to be specially prescribed and there is quite a bit of chatter about fibrates which seem to work quite well for some. I have read that others suffered badly when taking URSO but after reducing the dose and then slowly building up they did not have the same reaction. I maybe worth trying to find out more about that, again perhaps the PBC Foundation will be able to ask one of their specialists. The PBC Foundation have a daily facebook fun hour at 4 p.m. UK time but on a Tuesday they have a specialist of whom questions can be asked. Have a look at the website or their facebook page for more information.

I once went without any specialist control for over 5 years, although I was on URSO, I went to see the retiring GP about another matter and she said "people like you should be under the care of the specialist". I had to wait for the referral but since that time the specialist ordered several tests which the GP had not. Like you a hernia was found, gall stones which do not bother me but fortunately no varices.

let us know how you get on

[June9961]

Where are you in Scotland JC? In most of Scotland you just see a gastro. If it is PBC they will first give you a blood test and then possibly a biopsy. They will then put you on Urso? Like me sounds like you also have a hiatus hernia (more of a nuisance than anything just now). However they will monitor you. Just speak to your GP and say you want to see a specialist. Might be difficult just now due to Covid though. Contact pbc foundation in Edinburgh. They will give you great adviceX

[Hidden]

Hi Jaycee,

Your numbers are great and to have them without medication is even better. Im in Scotland, west coast and its a gastro i see. I was on Urso for 6 1/2 years and never got my numbers anywhere near normal ,at start of year i started on Ocalivia, numbers still not normal but coming down. Ocalivia has to be prescribed by consultant and they have to make a case to health board before approval due to the cost . This being said im unsure with normal lfts they would approve unless there is damage done to liver because of not taking any nedication. I have to ask though, how have you slipped through the system and not be assigned to a consultant for so many years? Did you not see one for diagnosis? You have been getting appropriate care with blood checked and ultrasounds. X

[kimphoebe]

Hi there

If you ask you gp he has to refer you, it’s your right to see one. How do they know you have varies.

Xx

[HermansMom]

In my opinion anyone diagnosed with PBC should be sent to a Hepatologist, as it's a serious disease, plus it's relatively rare, so general practitioners generally don't know enough to be exclusively treating patients.

Your ALT Phos is elevated. Ultrasounds only show size of liver and a Fibroscan (or biopsy when Fibroscan is not available) is required to determine staging (damage to the liver). It's not uncommon for PBC to go years without being diagnosed. It is possible you got an early diagnosis and your liver health/values could change for the worse without treatment. Once the damage is done to the liver, there is no reversing that damage. I was recently diagnosed and I'm already stage 4 PBC, with significant liver cirrhosis.

20 years ago, the diagnosis of PBC, especially at a younger age, was a death sentence without a liver transplant. This changed with the advancement of medication, Uros, being the mainline treatment. I don't think any specialist would recommend no treatment, especially if you're not a senior. It is a slow, chronic disease, so it does give you years, but if you're diagnosed younger, the damage from PBC can leave you with a severely damaged liver.

If you couldn't tolerate the Urso, I've heard of people needing to start out with a lower dose and work up to the full dose, so that might work for you. There are also different brands of Urso, so sometimes people cannot tolerate one, but can take another with no issues. I'm sure a specialist would want to try it again, given it's the front line drug for the disease. However, some people can't tolerate it, or more commonly, it doesn't work for them, so now they have a second line drug for PBC called Obeticholic acid (Ocaliva). The fact that your doctor didn't suggest these options and instead has left you untreated shows how little they know about the disease, IMO.

[krazy-girl]

There is a newer medicine for PBC you might want to try? I'd got to the doctor and have yourself checked out, better safe than sorry! I hope things work out for you.

[Jlruggie]

Jaycee

Yes see a Hepatologist who specializes in PBC and a n alternate medicine Practictioner with experience in PBC and auto immune disorders. Let them follow the progression.

If you find the later, let me know a name. 25 years on Urso, my enzyme numbers are always slightly above normal. They assume my biliary tubes are deteriorating more slowly with the ursodoil and ursodoil is prolonging my life. Maybe you should figure out how to handle the ursodoil? I don’t know. I’m 25 years diagnosed, 63.

Use me, I do lots with diet and yoga to feel better.

Jlruggie

[Sydgal in reply to Jlruggie]

Wow 25 years and your still doing great 👍🙂 your an inspiration.. i was diagnosed a year ago, im 38 years old.. Thankyou for sharing x

[zinchunter]

I have to say that your results look so good I really wonder if you have PBC. Could your symptoms be something else? W