PBC and Diabetes

[Caz1908]

Hi, I have just been diagnosed with PBC and have been put on URSO by my Liver Consultant who I have met once after being referred by my GP. I don't see him again until end of Feb. I am a diabetic on insulin and was wondering if my PBC is more likely t.o progress quicker due to being a diabetic as I have not read about many people on here also having diabetes. I was sent a letter from the hospital telling me that my blood tests indicate PBC and told to go online to research it!

[Curlymac]

Hi Caz. I too have type 1 diabetes and PBC and GERDS. My specialist said quite often ppl with PBC will have other autoimmune diseases. The Ursodiol controls the PBC and having diabetes will likely make you have some of the symptoms of OBC felt more like fatigue . But if you are managing your diabetes well you shouldn't worry too much, and you may never progress past stage 1 of PBC anyway. I have stayed at stage one for the past 4 years and it doesn't seem to be any worse. My numbers went from 669 to 205 and holding in just a year after starting Ursodiol. Rest well at night don't run marathons and eat well as you have to be diabetic and you should do fine.

[Caz1908 in reply to Curlymac]

Thank you for reassuring me. It's good to hear from another diabetic.

[lkraft in reply to Curlymac]

I have type 2 diabetes. with pbc at stage one

[Hidden]

I am not diabetic however you post reminded me of when I was dx 5 years ago. The consultant i saw also said research it on line i was shocked that he could not be bothered to explain anything.

If you have not done so join the PBC Foundation, for information that is up to date.

[Hidden]

Hello Caz1908.

Hello, I've only got PBC and only take urso. My son-in-law and graddaughter both have type 1 diabetes and are on daily insulin. Apparently it is the pancreas that ceases working with this type of diabetes so insulin is an addition.

With PBC in my view urso isn't exactly a medication though it is prescribed as a prescription only medication (POM). I have always seen it (I was diagnosed with PBC Dec 2010 and on urso since) as a supplement to our system as we are basically taking a bile component to add further to our own due to the compromised biliary system we are said to have in PBC.

Urso is said to attempt to slow down the progression of PBC as with additional bile in the system that helps deal with fat usually (it breaks it down as bile acts like a detergent). By taking urso the LFTs tend to start coming down for the majority of us with PBC (mine have slowly over the last 4yrs., I was said to have only had PBC 'a few years' at diagnosis. It was itching that took me to the doctor early 2010). Our liver then can start to regenerate itself as best as it can with PBC thus slowing PBC down.

Now you have PBC as much as you thought you looked after yourself previously it can pay to take that bit more care I have found. I still tend to go for quality in food as opposed to quantity. For me I've found the itching has settled down over time and I only get it at night-time. Pre-urso it was pretty kmuch a 24hr thing!

You might find that feel more tired than usual. I get tired but fatigue was something I did have in 2010 but at some point in 2011 it vanished and I no longer have that. I find being tired alter in the afternoon isn't good but that is caused by night-time itching and often not being able to sleep for many hours at night.

There is also another site here in the UK - Liver North - that offers a lot of information about PBC. You can find their newsletter that is current and previous ones on the site as well as requesting their copy of PBC on a free dvd. There is of course Bear Facts from PBC Foundation which I expect you probably already know about being on this site. I've put the link for Liver North below. There is also British Liver Trust that has online leaflet on PBC but I have to say I don't really favour this organisation as I have found since diagnosis it seems there has been too much emphasis on liver disease via alcohol and I don't think it is stressed upon enough that there are other conditions like PBC that you can get that are nothing whatsoever due to alcohol.

livernorth.org.uk/

(Just click on Publications for the newsletters.)

[Caz1908]

Thank you peridot. That was very explanatory. I will check out the link

[GrittyReads]

Hi Caz1908,

I don't know much about diabetes and PBC, but I can see that already there is really good advice on here, from people with more knowledge.

However, I wholeheartedly second what some have already said about contacting the PBC Foundation. They host this site on 'Health Unlocked' and there is a link to their site at the top of this page; either email them from the link on the website, or better still, phone up and talk to their advisors.

I also think that it might be worth trying to get a message through to either Collette Thain herself (she started the 'PBC F' after she was diagnosed and given no help or advice) or via the 'PBC F' to one or more of the senior consultants in the field of PBC, who do deal regularly with the 'PBC F', such as Dr Neuberger, or Dr Gideon Hirschfield. This is because I think it is completely unacceptable for a liver specialist to be telling you to look up PBC online, and it would help if the PBC F, and the leading consultants could get this message out to their (obviously less well-informed) peers. Many of the articles on the web are out-of-date, or otherwise wrong, or too brief, or horribly scaremongering, or just complex research papers (although once you become proficient in 'PBC-ese' you can have a read of these and see what steps forward are being made).

I believe the Foundation send PBC information packs out to GP practices: it would seem that they also need to be sent to hospital consultants.

I hope that you get all the information you need, and that once everything settles down you can get back to good, normal, everyday life. Remember to look after yourself: good food, helpful exercise, pacing yourself, avoiding stress and enjoying life to the full are the main keys to tackling autoimmune conditions.

Live well and spoil yourself. Best wishes.

[nessiewolfe]

The Mayo clinic website is a wonderful resource for many health issues when I was first diagnosed I referred my family to read about PBC there because it's thorough and put where most people can understand it without having to look up every other word. They have also specialized in PBC for 40 Yrs and created the urso treatment.