Greetings from the US and a relatively newly diagnosed BPC patient

[Kind_of_crazy]

First a bit about how the US and UK differ:

US - we have PCP (Primary Care Physicians). UK - GPs.

US - normally, a PCP catches something suspicious in your blood work and refers you to a specialist. In the US, you must be 'board certified' to call yourself a specialist. Currently, you can be board certified in Internal Medicine and board certified in Gastroenterology which is a sub-specialty of Internal Medicine. Hepatology is considered a sub-specialty of Gastroenterology. So this means, in the US, we see a Gastro (gastroenterologist), who has received special training in hepatology, but we have no "Hepatologists" per se as you do in the UK.

US - we don't go to hospital or clinic or consult. We have Specialists as opposed to Consultants. Our PCP refers us to a Gastro with the appropriate training in hepatology (hopefully, but not certain. The doctor must be on your insurance company's provider list unless you want to pay, and the more rural you are the less doctors and less specialists and less sub-specialists). US specialists usually have their own practice/office, just like our PCPs. I live in a medium-sized town in Ohio and I see a gastroenterologist who has had special training in hepatology. If I lived nearer a major city or a city with a major university near it, I could go to an actual Liver Center staffed with tons of specialists, but only if it were in my provider list or I become fabulously wealthy and paid cash.

Sadly, in the US, our LFTs are only abnormal or elevated. I think that having 'deranged' LFTs is charming.

No, it is not common practice to have a liver biopsy done if you are early stage PBC and asymptomatic. I saw two Gastros. The first Gastro, twice in 2013, who gave me the baseline LFTs and the diagnosis. With the start of 2014, my insurance company's provider list changed so my Gastro changed also. Neither Gastro wanted me to have a biopsy because it is an invasive procedure which always has risks and - as Peridot (who I find has the most consistent, relevant and current knowledge/input/posts about PBC. And she so kindly takes the time to reply to so many posts) says - a liver biopsy just gives you a tiny glimpse of what's going on in your liver. Having a biopsy in the early stages of PBC, they may get a sample from a 'bad' area or a 'good' area.

I am also on this one with Peridot. I don't want to be 'staged' and labelled. Since there's so little one can do about PBC, I prefer willful ignorance. I take my ursodeoxycholic acid (US - ursodiol; UK - urso. Except we tend to shorten it to urso, too). Am asymtomatic and believe I will die with the disease, not from it. If I had a biopsy and was told I was stage 3 - or worse 4 - just because they got a 'bad' sample, I'd worry and fret myself to death.

I also have hypothyroidism so I see my PCP every 6 months for a blood draw. He will now also be doing my LFTs and forwarding them on to my gastro. I will see my gastro annually (unless those pesky LFT's go screwy or I turn yellow).

I have read and read and read and read and read. My PCP will tell you gladly admit to you if you ask that I know more about PBC than he does. I am careful to extract my information from peer-reviewed professional journals while checking the date and the authors to make certain I am reading the most current and best information available. Before the introduction of ursodeoxycholic acid (UDCA), the life expectancy upon diagnosis of PBC was 4 + something years! Online websites often have this dated information and other misinformation about PBC.

Sorry for the length.

Sorry for coming off as a know-it-all if it seemed so to you - I blame all that reading :).

Glad to meet everyone.

Hope you all have a lovely holiday.

[Kind_of_crazy]

I forgot (as everyone rolls their eyes - will she never shut-up?)

US does not normally do GGT's. Why not? Don't know. Something I plan to find out about next week.

[Kind_of_crazy]

PBC induced brain fog is the only explanation....

also forgot, our urso is prescribed with meals 3x a day. Taking your dosage all at one time is not accepted practice in the US.

[ranrace]

Here in North Carolina it worked like this for me.

1st PCP did a blood draw and did some more liver testing due to him doing his job

2nd Gastro Nurse Practitioner (Ultra sound and more blood tests) (Clinic)

3rd Hospital for biopsy

4th Gastro Doctor (appointment next week) (Clinic)

5th Hepatologist (if it gets bad enough) (Duke U is where I would go based on my location and research)

The system is designed to work in a more efficient matter. It would be nice to talk straight to the expert of experts. But like you said $$$$$

Randy

[Kind_of_crazy]

Hi, Randy,

You are so lucky to live near Duke! I drive over 20 miles to see my gastro!

I am working with my insurance company for a 'gap extension' so I can go to the Liver Center at University Hospitals of Cleveland, Ohio because I feel that my second/new gastro is an idiot (and we detested each other on sight, too).

Doctors do make mistakes and he compared my PCP's blood work with my baseline bloodwork. He's not entirely at fault. The first gastro was to forward all the blood work and his office failed to send the post-treatment results. I'll assume, because doctors are busy souls, the second gastro saw two sets of blood work and assumed he was comparing baseline and post-treatment results. What he really compared were two pre-treatment results.

Here's where it gets strange. In July 2013, my PCP did blood work which got me sent for a CT scan and referred to a gastro. Some of my results then were:

BUN/Creatine21 H

ALP435 H

AST52 H

ALT63 H

My numbers from my extensive baseline blood work in Sept (note: I always use Lab Corp :)) were:

Bun/Creatine 11

ALP 262 H

AST 33

ALT 23

AMA 23 (which on Lab Corp's ranges is equivocal BTW)

According to the numbers, in July, something was seriously irritating both my kidneys and my liver. Until I had my baseline tests done in Sept, I did everything I wasn't supposed to do (but I hadn't been told I had liver disease yet either). I was living in my car. I ate fast food every day as my car doesn't have a kitchen. I didn't drink many fluids because you have to find a bathroom somewhere. I started smoking again simply because it is really boring living in a car. You can only read so much. I did have two Long Island Ice Teas in August, too. I was doing everything wrong. Yet all my numbers dropped?! Why?

Had blood work this week. My ALP is now 127. So I accept that ursodiol does lower my ALP and that means I have PCB. I'm in a good place for PCB. I responded well to treatment. Am asymptomatic. Prognosis looks good. I live in a house. I've improved my diet. I haven't had any alcohol since August. I've never done drugs.

Tracked down the missing crucial post-treatment set from December and will have them next week. Will also be getting this week's print-out with more detail.

I wish my best friend was a doctor. I so want to see an entire Liver Center just once to explain all the above because all those decreases while doing everything wrong disturbs me. I've learned that one never knows when one is going to get a dire life-changing diagnosis and what if something even worse or more or less or different is going on in there.

Have to stop myself. This is already too lengthy.

Thanks for your patience and for your response.

Take care.

[Hidden]

Hello Kind-_of_crazy.

Thanks for the mention. I will update and say I still do not believe in staging of PBC. I still go with the flow. Although my LFTs (and GGT) are still abnormal, they are not alarmingly so. I am symptomatic with PBC as it is said and I do itch, that is the only one sympton I seem to have along with the abnormal LFTs.

The GGT apparently informs a doctor how well your liver seems to be at the time. My GGT has come down over time. It is to do with inflammation of the liver. My hospital consultant wrote it on a blood collection envelope after diagnosis as he asked me to have the next repeat bloods at the GP surgery so he would have them when I returned and did state that the GGT was one of the most missed in this case. I always mention it at the GP surgery when I go for the bloods, I have had it missed before.

Seems there are quite a few variants with taking urso (I found out it was originally called UDCA and one of the tablet brands I picked up last year had these letters stamped on them). I was originally prescribed them at 2 a day as that is what my mgs made up of but I did read from our PBC Foundation here in UK that it doesn't matter when you take as long as you take them all daily. It was said that all at once at morning was fine as was all at night. I have experimented and find mine best taken with breakfast and then just following evening meal. The Patient Info Leaflet (PIL) I received with current tablets (I have had 4 different pharmaceutical urso's since starting them Dec 2010 - depends on pharmacy and here in UK we have generics of urso so you could get a brand or generic depending on how your GP has worded the prescription), this leaflet states to start on spaced out during the day and then after so long just take all in one go at night. I found myself itching later morning when I took mine all with breakfast so that was a no no for me as I don't normally itch until after 9p.m.

Hope you keep on trucking Kind_of_crazy as I and the rest of us on this site are trying to do with PBC and my thoughts are "It may never happen".

[Kind_of_crazy in reply to Hidden]

Hi, Peridot,

I've noticed that you often comment on your abnormal LFTs. You do know that there is no universal, one size fits all, normal. I'd seen this chart awhile ago and I tracked it down today because even I assumed at first that 'normal' was relatively agreed upon by the medical profession. It's a chart of 'normal' or in doctor speak 'Criteria of “biochemical response to ursodeoxycholic acid" in primary biliary cirrhosis'.

You may be 'normal' by one of these: ncbi.nlm.nih.gov/pmc/articl... It's from: Hepat Med. 2012; 4: 61–71. Published online Dec 4, 2012

Always read your posts with interest. Oh, if you want the link to the article I can provide it, but you probably know most all of it says

All the best.....

[Hidden in reply to Kind_of_crazy]

Until I had PBC I wasn't aware of the LFTs and the scales. I did ask and was just informed that with PBC the LFTs are not expected to be normal (though some with PBC can and do reach a normal level again) and that mine are within what is considered normal for one with PBC.

I once was messing about online and came across a model for PBC patients and tapped in some of my LFTs that were requested. It apparently tells you some figure for longevity at the time with PBC. Mine was looking good. (The model I used was on the Mayo site. I am not saying I did it accurately as I'm no doctor but it seemed to be that way to me.)

I'm not too bothered about my 'abnormal LFTs', just seems easier to state they are abnormal as for someone with a normal within range reading mine are not so.

I know there can be other bloods that show up slightly over the normal range and are abnormal but due to now having PBC some are actually expected to be so.

Thanks for the reply though, I know I will still continue to state my abnormal LFTs.

[rbwphd]

Hello Kind_of_crazy. I am a middle aged male in North Carolina and I have worked as a pathologist and agree that a needle biopsy only represents a micro-area of the liver. Needle biopsies are invasive and have the risks of bleeding and other complications. In my case, I had an elevated AMA (mid 60s) two years ago but normal LFTs; specifically AP or alkaline phosphatase. I get my LFTs done with yearly checkups and I won't worry about PBC unless my AP starts rising.

Bob

[Kind_of_crazy in reply to rbwphd]

Thanks for your input, Bob. You've said almost verbatim what my doctors did when I asked if I should have a biopsy.

This is from the Journal of Hepatology:

"It is estimated that 0.5% of the general population is AMA-positive, which means that fewer than 10% of patients with AMA will develop PBC."

This is from the the AASLD PRACTICE GUIDELINES published in HEPATOLOGY, Vol. 50, No. 1, 2009.

Here's the link to the article - but you probably won't learn anything you don't already know:

aasld.org/practiceguideline...

I included the quote because I am sending out to you my sincerest wish that you are among the .5%....

Here's to continued normal LFT's. Take care.

[rbwphd in reply to Kind_of_crazy]

Thanks for the reply, Kind_of_crazy. I bookmarked that site.

Bob

[Kind_of_crazy in reply to rbwphd]

I just bookmarked mine, too. Great minds....

[NotorDJP]

Well I am having a biopsy and tomorrow. I for one want to know my stage. They are taking three samples in my liver. Though I am nervous I want to know. My last Alp was 500 and my ast and alt were starting to go up. I highly expect to be stage 2 from this alone but I dont know

I want as much information as possible.

[Kind_of_crazy in reply to NotorDJP]

Hello, NotorDJP.

I hope your biopsy goes well tomorrow and you receive the best possible results.

PBC is experienced uniquely by each individual as you've probably learned from reading and from the contributors here. PBC can progress slowly, speedup, slow down, develop symptoms, lose symptoms... rinse and repeat.

Only you and your doctors can decide what is 'right' for you.

Once again, good luck tomorrow. And do let us know your results.

[NotorDJP]

Thanks. I'm heading to the hospital in about 45 mins. Hopefully it will be done by 11 am. I wasn't too anxious about it yesterday, but now I am. Pray its uneventful.

[nomorepies]

Hope all went well Notor, when you feel up to it let us know how you are.

[Karaliz]

Hi kind_of_crazy.Regarding the taking of Urso, I have been taking the whole dose late at night on my way to bed since I was diagnosed 10.5 years ago. My consultant is part of the liver transplant team here in Melbourne, Australia and he maintains it makes not a jot of difference when/how one takes it. The indication for the timing is really what best suits the individual. Years ago I was trialled on high dose Urso: 2 GMs: and continued to take the 8 capsules in one hit without issue. What works best for you is the aim.

Cheers.

Karaliz.

[Kind_of_crazy in reply to Karaliz]

Hi, Karaliz,

Thanks for kindly sharing your experience. I had asked both my first and second gastro here in the US if I could take mine in one dose. Both answered, "No. Take it as prescribed".

I am holding all the questions (like why can't I take my urso in one dose? and about a thousand more) for my appointment in May at the Liver Center at one of the top hospitals in the US.

Be well.

[Karaliz in reply to Kind_of_crazy]

No worries kind_of_crazy. I think you'll find that many gastroenterologists are not particularly familiar with PBC which can mean they are reluctant to stray outside of standard instructions e.g "Take as prescribed". However most hepatologists such as mine who deal with PBC regularly are aware that Urso is one of many drugs that can be taken to suit the individual. There are several posts on this site discussing this issue where the general consensus is suit oneself.

Good luck with your appointment.

[PatinJersey]

Great info. I think most sites on PBC are DERANGED! Thank you for clearing that up. Makes me feel better!!

Pat in Jersey

[Kind_of_crazy]

Hi, Pat,

Nice to hear from you, too.

[gaby1011]

Hello from "across the pond" also. I am in Washington state in the USA.

I was just diagnosed with PBC although I'm sure I've had it for over 2 yrs. now This would explain some of the symptoms I've had for a few yrs. now.

I am on 300 mgs of urso 3X a day & Clohestramine 2X a day. The itching, which was bad, has now become worse right after starting the urso. It is now a very bad burning itch. I feel like someone is poring acid on my arms & back. My gastro started me on the clohestramine a few days ago after I told him, by phone (he is 2hr. drive one way from my house) how awful I felt. I also have researched quite a bit. I did find out that this combined concoction is sort of the norm. I know the clohestramine is not convenient to take. It must be taken by itself and also not near any mealtimes. I have found myself staying up longer at night so that I can take my second dose within a reasonable time frame after dinner. We eat late.

Tommorow, I will go for my second of 4 Theraputic Phlebotomies also known as "blood letting". No they don't use leeches. I drive an hr. one way to the nearest blood donation center (do you get the feeling that I don't like driving?) where they take a pint every 2 weeks to reduce my too high iron levels. Hemochromotosis, they call it.

The dr. feels that adding the second med combined w/the phlebotomies will help much. I sure hope so. I don't have much faith in any doctor after what I have been put thru in the past 2 yrs. while they "practiced medicine". One Gastro had the stupidity to say "I don't know why you're having this itching all the time!" I have no qualms about telling anyone that needs a gastroenterologist NOT to subject themselves to Dr. Sankik Siddaya in Silverdale, WA. This is a young man who should be up on the newest and the latest information. I, like you, felt like I knew more than he did about. I did not go back . He also must have been absent in school the day they talked about "bedside manner". I didn't expect him to become my best buddy that day or to take me out for dinner but I would have liked some eye contact. He had the warmth of an ice cube. Okay - I'm done. For now.

I had to wait for another 6 weeks to get an appt. w/the dr. I have now.

Has anyone else gotten worse before they got better? Do you have itching that responds to scratching or do you have the sharp, burning itch that makes you want to rip your arms off? I bought a back scratcher for the parts I can't reach. I make myself bleed without even realizing it.

Has anyone else had the elevated iron levels?

Has anyone else realized that they have become or are very sensitive to gluten? According to "Dr. Google" this can also cause an itching reaction. I would kill someone for a pizza right now or real pasta! Stay tuned....

[Kind_of_crazy in reply to gaby1011]

Hi, Gaby,

Greetings from Ohio.

Itching is one of the classic symptoms of PBC. Peridot (see above) knows the most about itching as she suffers from it also. I, cross fingers, do not itch (yet, hopefully never). She's, also, very knowledgeable about all aspects of PBC.

Please do try to stop scratching. You'll scar horribly.

Because PBC is regarded as an autoimmune disease, it is quite common to have more than one autoimmune disease. Perhaps you've read about leaky gut syndrome and its connection to autoimmune diseases. This is NOT hard science - JUST theory at this point. The intestines are the largest organ involved in the immune system. Common sense would seem to indicate that if something is wrong with our 'guts' our immune system's compromised and vice versa; if we have an autoimmune disease we also have something wrong with our 'gut'. Check out Dr Weil on the subject. So, yes, you may be gluten sensitive. But please be cautious. There's nothing wrong with improving your diet, but I wouldn't expect a miracle cure from doing so.

My daughter wanted me to go with the cure-disease-through-diet-and-supplements route.. After much research, I decided to start finally taking my urso instead. My daughter has gluten sensitivity and has been gluten free for years. You can get gluten free pizza and pasta.

After diagnoses, and after starting the urso, most everyone feels worse. I think it's because we are all intensely concentrating on our bodies and what's going on with it and in it.

I know nothing about the iron thing.

Please, please take the time and report your doctor to your health insurance or medical board. It only takes a phone call and those black marks that doctors get actually count. I've started doing this and it feels great. I, too, have had incompetent doctors and flat-out stupid doctors.

You'll find people on this site that can provide you with knowledge on all aspects of PBC as each individual's journey with PBC is unique.

Take care.

PS - I detest driving, too!

[gaby1011 in reply to Kind_of_crazy]

Kind of Crazy,

Thank you for the reply to my post.

I did look Peridot up and have posted to her. She and I are in the same boat with the pruritis.

I do have another medical issue which is HepC - genotype 1. I have tried treatment for it in the past but had to give up after 2 mos. because of the side effects. The new drug therapy still includes the interferon injections if you have genotype 1. I may try it in a few months. My gastro suggested dealing with the PBC first.

Gluten free pizzas and and pastas are horrible. They taste like paste and are also very dry. There seems to be gluten in just about everything - even in bottled salad dressings.

My new motto is " If it comes out of a box or a window - don't eat it.

All for now - Gaby