Waiting for biopsy results...so many questions

[JennyCville]

I'm so glad to find this board...everything I read on the internet about PBC takes my breath away. Here's my story: I am immune deficient - I have CVID, Common Variable Immune Deficiency. I do immune replacement therapy every week via subcutaneous infusion. My lft's have been abnormal for months and I had lots of gallbladder pain. They removed my gallbladder on Tuesday and did a liver biopsy at the same time. (This recovery is no fun, by the way...with immune deficiency I have lots of other infections to deal with.) As of last week, my GGT is 165, ALP is 338, and AMA is 158. My bilirubin is normal.Also, my IgM levels have been creeping up. I can't imagine that I DON'T have PBC...but would love your thoughts. I'm already grateful for your help!

[Hidden]

Hello JennyCville.

It can be possible to have abnormal (or elevated) liver function test results (LFTs) for other reasons, certain medications can cause a rise and it could also be the case of recent gallbladder removal.

I can't say for certain regarding the AMA check (anti-mitochondrial antibodies) as when I was diagnosed Dec 2010 I didn't get a figure, the consultant just put in his letter to me that I had a 'high titre' and along with abnormal LFTs and itching (I also had fatigue back then) that gave him the diagnosis. I have never had a liver biopsy as in the UK if you have these 3 criteria then there is usually no request.

Your biopsy will show if you have PBC due to cell changes.

[JennyCville in reply to Hidden]

Thank you so much! Do you mind if I ask how you are doing? I know we are all different, but I'm trying to learn as much as possible.

[Hidden in reply to JennyCville]

Hello again JennyCville.

I was 46 in early 2010 when I started itching and at the time I had fatigue that I never thought anything about. My GP at first assumed it was an allergy but decided to do a blood check and then informed me that my LFTs (liver function test) was above the normal range. He started doing other blood tests and one was to decide if bone or liver related as with both you can have abnormal LFTs. He came back and said it was pointing to liver. Had further bloods to eliminate other things (Wilson's Disease for one, that is copper overload, hepatitis, etc) and seemed negative.

I had gone 46 when I had a scan that showed pretty much normal organs. Consultant said on my first outpatient visit eawrly November 2010 that he could see my bile ducts, they were clear. That day he did the AMAs blood check and also another antibodies, the ANA. The latter came back negative.

I started on urso when I was informed I had PBC 3rd December 2010 and wasn't far off being 47 then.

In the 5yrs I've been diagnosed the only thing I really have besides the abnormal LFTs (and a GGT - this is apparently to show liver inflammation - expected to be abnormal in PBC) is itching. Fatigue vanished during 2011. The itching was 24/7 in the very early days but over time it moved to being at night time. I still feel prickly at times in the day if I am not moving about but it isn't like it was back in 2010 and part through 2011.

I don't sleep as good during the night due to the itch that can be anywhere on the body but I find in bed it seems more confined to my waist down to my toes. Due to broken sleep I sometimes find I am tired from 3p.m. onwards but plod on. I try to keep as active as possible. Find I feel better. I've not put on any weight since diagnosis but I put that down to the fact I dont' tend to eat anyting after the evening meal around 6p.m. and then with moving about with the itch during the night probably burn energy then.

5 years on I am doing pretty welll. My LFTs are still abnormal and said to be OK for someone with PBC. I just get on with living life really. Resolved long since that I'd not really take much notice of what PBC may become as it might never be so meanwhile needless worrying. Decided to deal with things as and when.

I think for me the hardest thing to accept in the beginning was the fact I'd not seen a GP for anything for 11years, had always thought I looked after myself and then along arrives the itch that led to being told I had PBC.

[YummyBear in reply to Hidden]

Hi Peridot,

Your articles are always so interesting. PBC is an odd condition; some people will never know they have it and with others it shows up out of the blue, purely by chance, which was the case with me. I went for a scan in the urology area and the consultant found my liver to have an abnormal outline. I had had a fatty liver for 12 years but no tests were ever carried out for this; I was prescribed a statin to help with cholesterol.

I subsequently saw a Gastroenterologist and further tests showed strongly positive AMA reading but everything else, including endoscopy (looking for varices) was normal. However, during the endoscopy, I was found to have a stomach infection (H-Pylori) for which I had no symptoms (I was given medication to treat this).

I am seeing consultant tomorrow for a Fibroscan to investigate further. I am not on any medication for PBC. I have improved on my eating habits (low fat, minimal sugar) as it was a wake-up call to treat my body in a better way and not to overload with sugars/fats. I have always been teetotal and never smoked.

[Hidden in reply to YummyBear]

Hello YummyBear.

I believe we can develop a fatty liver if we have PBC.

I know there is a condition known as NAFLD that has a leaflet on the British LIver Trust site (I looked into certain liver conditions in 2010 before I was diagnosed with PBC because as time kept trucking on and things were ruled out it looked definite there was some problem that was going to be long-term, though I refused to accept it then). Apparently diet can control a fatty liver but I think if on its own probably far easier than if we also have to deal with PBC.

I wasn't a bit alcohol drinker pre-2010. It just never bothered me and the only time in all honesty I might have had several drinks was 24th Dec when I and my children used to spend the evening with my sister and her family. Never bothered me since having the first abnormal LFTs in early 2010. I have to say that in the early days of PBC diagnosis I dreaded going into a pub with my husband and his family in case I was asked if I wanted a drink and then on a refusal tried to be enticed as I didn't want to explain. Nowadays I just say no if it happens and leave it at that. Things take time to be accepted and dealt with.

I have never been partial to the artificial sweeteners but nor do I over-indulge in sweet things either. I stopped having sugar in hot drinks when I was a young teenager. Eat breakfast cereals without adding sugar and even raised my own children the same way. I don't even eat a lot of fried foods either, no take-aways and fish and chips are a one-off treat on holidays.

[YummyBear in reply to Hidden]

Thanks for response Peridot, interesting. I feel that people with PBC are clutching at anything to help understand why they have been diagnosed with PBC, particularly if they have little or no symptoms, so they try changing their diets and avidly read the blogs for help.

My consultant has said they do not know why people get this condition, as there is no one-known common factor for PBC. The short-term solution is mainly to take the Urso but in my case, the consultant said "its benefit is debatable and therefore there is currently no compelling reason to commence this medication".

Hopefully the Fibroscan will shed some light on my PBC status.

[Tracy181 in reply to YummyBear]

Interesting, my doctor said the complete opposite of the urso. Just shows how far off they are still from truly understanding.

[butterflyEi]

Hi JennyCville

Welcome to the group. Like you I find the wealth of experience and knowledge on this site very supportive. I have never heard of your complaint but it sounds like you are really going through it. How long do you have to wait for the results to your biopsy?

For me the itch is my main complaint and dry eyes. I have had PBC for about 10 years and am in my early 60s. When I first got my diagnosis I was told that you are more likely to die with PBC than because of it - a thought which has given me some peace of mind.

best wishes

[JennyCville]

Thank you butterflyEi,

I have to wait until next Weds. I am nervous for many reasons - there isn't a lot of data on people with PBS and CVID (Common Variable Immune Deficiency). I also have Interstitial Cystitis, which causes chronic severe pain, and I had JUST gotten on a great pain management plan before this came up. Now I have no idea what to do.

Until August I was managing the CVID with no problem - I do weekly infusions of gamma globulins, and I was working full time in family ministry. Since August, I have been "circling the drain" - in a downward spiral. I am so scared that I am in a later stage of the disease.

I don't have itching, but have fatigue. Just had my gallbladder out, and the pain of the two procedures has been really bad = because my immune deficiency kicks in and I end up with lots of infections and inflammation.

I am so glad to hear that you are more likely to die "with" pbc than "because" of it.

Thank you for reaching out.