Worried and Confused

[Lisa15]

I don't understand what is going on and I was hoping someone here could help. My GP told me I have PBC after several blood tests were my alkaline was high and I have high AMAs. He sent me to specialist who did an upper gi. What I don't understand is during the procedure he only checked esophagus and small intestine. I thought the procedure was to check for PBC. I am still unsure. Can anyone help?

[Hidden]

Hello Lisa15.

If your GP has informed you you have PBC and I suspect you are in the UK (?) then you have to have certain criteria for diagnosis. In early 2010 I started itching and went to the GP after a fortnight of 24/7 of itching. I never thought much about fatigue that I had at the time as presumed normal due to my workload, etc.

He did the LFTs (the liver function test) and then said it was abnormal as in higher than normal. I started having other blood tests to rule out this and that, one is whether a liver or bone issue as both can show abnormal LFTs. Was decided I had a liver issue so was sent for a scan. The scan I had was the liver and surrounding organs. PBC affects bile ducts of which when I saw the hospital consultant a few months later he said they looked clear as he said he could make them out on the scan I had. Surrounding organs and even my liver looked pretty much normal.

That day I had antibodies check, one was AMA, other ANA (but I have had others). Just my AMAs was said to show a high titre of AMAs, ANA was negative. I also had a blood test known as GGT that day as if a liver problem that is normally abnormal as mine did show. That along with the AST and ALP were abnormal. I did have a couple of the full blood count (FBC) too that showed a bit abnormal but was informed that certain ones can be expected in PBC.

PBC can't be diagnosed via a scan normally. It tends to be a biopsy that shows cell changes that can. A scan can only show changes. If you have the 3 criteria as in symptons (like I had at the beginning) and abnormal LFTs plus antibodies, it is usually enough for diagnosis as this is how I was diagnosed Dec 2010. IF a doctor is usually in any doubt a biopsy tends to be performed but I cannot say for definite there as I'm not a medic.

It could well be that your consultant you saw wanted to check things for him/herself or had a few doubts.

In PBC there are tests that can be performed even after diagnosis to check for various things that can start to occur. Some with PBC can develop ascites or something known as varices but I am not well up on those as currently, almost 5yrs one from diagnosis I am doing pretty well just taking the urso(deoxycholic acid) daily and my bloods although still abnormal aren't so bad and fatigue for me left the following year after starting urso and also the itching has altered and I get it at night.

What you could do is make an appt to speak to a GP in your surgery and ask him/her to go through the hospital test results with you. It is said that a lot of GPs are not that well tuned to PBC as yet but I am certain that a GP can translate the results of the procedure you had.

Did you receive another appointment from the hospital to go back at some point. I presume that if you have been diagnosed with PBC you have now been started on urso?

There is PBC Foundation that if you make yourself a member they could email you the latest newsletter Bear Facts they produce, you can then see older newsletters online on their site and also Liver North you can see their newsletters online anytime. If diagnosed, check out the Liver North site as they can send you their free dvd all about PBC.

livernorth.org.uk/

[Lisa15 in reply to Hidden]

I do have fatigue and itching. I did have an ultrasound first after the second set of blood work showed elevated liver levels and high AMA... The specialist also did more blood work before the upper GI..I know the upper GI was to check for varices and he did take a couple biopsies, but I don't understand why they didn't check my liver. The doctor will not tell me anything until my appointment which is near the end of August. Ugh...I am just worried and having to wait is really frustrating. I am from the States.

[Hidden in reply to Lisa15]

Hello again Lisa15.

If you had a GGT blood test, it normally gives some indication if there is inflammation of the liver. My GGT has always been abnormal since the year (2010) I was diagnosed with PBC. Your ultrasound might have shown pretty much a normal-looking liver, mine did.

I think it depends on hospital consultants and I am sure if one is in any doubt about something they would more than likely want to do a further check.

Your biopsies would have been on your liver surely?

Given you are in the States I am not sure how your system works. I am in the UK and under the NHS. I know in the UK it isn't the norm for anyone diagnosed with PBC these days to then undergo a liver biopsy if they have a certain criteria for diagnosis.

I know certain other bloods that can show up along the way can lead to other things or be pointers to other things that might have started occurring.

Have you got a contact number for your doctor's secretary at all. I know beginning of 2011 when I went for my first hospital outpatient appointment following diagnosis I had a Vit D check that day. The consultant sent me a letter and he was a bit vague re the Vit D, just said 'a bit low, but not bad'. He wasn't recommending Vit D supplements as he said but I was confused as to what this 'a bit low' meant so I rang the secretary who was printed on the letter too and she sent me the print-out of the results so I had a figure to see for myself.

The one thing you have to remember is that if you were of a worry to your doctor then you'd have more than likely been given an earlier appointment. These are usually based on the patient's test results and how things are at the time. In the event you do have PBC then it has to be remembered that it is apparently a slow progressive condition. I know it can vary but I think once things are in motion, there is a definite diagnosis you can start to look ahead and get on with living life. That's my motto. I wasn't sure back at the end of 2010 if I'd be around 5yrs down the line and here I am feeling pretty great despite broken night's sleep due to the itching but I think I am far better than I was during 2010.

[cazer in reply to Lisa15]

Also forgot to say biopsies may have been for related stomach issues e.g sometimes people with pbc can have gluten allergies so this may be to rule this in/out.its just such a shame no one filled you in about the tests/pbc as it could have saved you a lot of heart ache.i usually take a note with the questions I want to ask when I see the consultant as I would otherwise forget. ..so might be worth doing for your appointment. Cazer

[teddybear7]

I'm in the UK. The first thing they did with me was an endoscopic thingy. It's not to check for PBC but to rule out other things it seems to be common practice with some gastro docs. They look far enough down to make sure there's nothing else going on. Hope this helps. X

[Hidden in reply to teddybear7]

From what I understand teddybear7 I suppose it depends on how you are at the time you present to a hospital consultant regarding how it all goes. I saw an hepatologist at local hospital back in later 2010. I'd exhausted what bloods and scan the GP could undertake so I was referred to hospital. I had the antibodies checks at the hospital. I was checked over by the consultant that day and he went over the scan I had a few months prior. After diagnosis he saw me and after a brief chat and how the urso was doing 2 months into taking them he said a bit about PBC and basically that he'd take things then if they happen to come along.

Some consultants in gastro and hepatology can perhaps be a bit keen on wanting to find out certain things, suppose that is the curiosity of being a doctor.

[Hidden]

Hello Lisa15,

We can give our experiances however you should ask the consulatant why they thought it was necessary in your case. I had the upper endoscopy As part of the tests I had done following the dx of pbc. This was primarily done to check for varices, however I was suffering from IBS as well at the time so I had other tests as well.

[mayday-Yeah]

I'm from N.Ireland and like few others have said from U.K . Liver biopsy is not routinely done here to diagnose Pbc. It's usually diagnosed like I suspect yours was on symptoms and blood test results. Many yrs after I was diagnosed havin had a very frightening yr when I was pregnant and my liver dipped so much I was Almost put on list urgently for transplant but thankfully my liver settled down again I had a Fibroscan done to assess state of my liver and was told then had advanced fibrosis possibly early cirrhosis of my liver which though shocked me helped me to prepare for what the future might bring. I.e. In my case need for liver transplant. We are all different though and u could be one of the very lucky ones who will never need a transplant. So my advice to u is don't worry unless u have to if Dr's felt ur liver was in a very bad way they would be seein u much more urgently. Hope that helps. Best of luck with apt. Bring someone with u as extra set of ears for tthe info u will be given re Pbc it's lot to take in. X

[Karaliz]

Hi Lisa....try and not worry too much. As others have said, the endoscopic procedure is normally to check for varices/ state of one's stomach/ bowel and in some cases allows the Dr to take bowel/stomach biopsies to investigate other conditions.

The liver cannot be viewed via endoscopy and you have already had an ultrasound which will give some information as to the condition of your liver.

Other imaging which you may have down the track could include the fibroscan and MRI if your consultant thinks they are warranted. A liver biopsy may also be suggested although as you would have gathered, the decision to perform one of these seems to vary enormously depending on where one lives in the world !

Perhaps you could give the PBC foundation a ring for advice and support and possibly try and have your appointment brought forward ?

Hope you get some relief as soon as possible Lisa

Karaliz

[Abigail53]

Hi Lisa15,

I'm also in the US (Houston) and I understand how you are feeling. When I was first diagnosed I had never heard of pbc, and waiting for my liver biopsy results was extremely nerve racking. My family is located in other states and I didnt want to worry anyone until I had all the facts. My advice would be to confide in one trusted individual until all facts are available. I know it's easy for me to say in hindsight but please try not to worry or dwell on the what ifs until your appointment and you have all the facts. I'm praying that you will have peace. Just remember, you're not alone and if you need to vent, this site is the place to be and get support.

Take care and let us know jow it goes.

[dianekjs]

Hi Lisa, so sorry you're going through this. If your LFT's were out of range, you have high AMA's, and you are experiencing the clinical symptoms of fatigue and itching, I'm afraid that is very consistent with PBC. The ultrasound you had done already looked at your liver - an actual liver biopsy is no longer routinely done by many of the top liver docs because it is invasive and has its own risks

[dianekjs in reply to dianekjs]

Oops- accidentally sent that mid-sentence! ... Has its own risks and usually isn't necessary to confirm a diagnosis. Do you have a copy of your ultrasound report? If not, just call your doctor's office and tell them you need copies of the report and all test results and will be by to pick them up. They belong to you, and you should always get copies of medical reports and keep your own file. Best of luck to you - many do very well with PBC and live to a ripe old age. Improve your odds even more by adhering to as healthy a lifestyle as you can. x

[Calogia]

Lisa - I live in PA and they had me to the same procedure when I was diagnosed. Peridot is right it is to check for varices. I'm sending you a link that can explain it better. It's one test at a time. I know it's hard to be patient.

mayoclinic.org/diseases-con...

Calogia

[Lisa15]

I want to thank everyone for your advice and feed back. I have just been anxious. I am going to try and and keep my mind off it until I go back to the specialist. I did have an ultrasound first and the dr said it was ok. I will let you know what I find out.

[cazer]

The check of your oesophagus would be to check for other problems that can occur with pbc not to check the liver.the high amas antimitpchondrial antibodies are the antibodies that cause dammage im pbc.it sounds as if they are being thorough so be comforted by that.good luck cazer.