What should I expect my specialist to do to... - PBC Foundation

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What should I expect my specialist to do to me at my first appointment once he sees these results...

Bundymiss profile image
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ST-BIL 83H. Normal-3-15

S ALP 153. 20-105

SGGT 867. 5-35

S ALT. 1264. 5-30

S AST. 494. 10-35

These are the major differences from the normal range. But no evidence of kidney disease. And CT scan just shown slightly fatty liver. But my Dr practically panicked when seeing these results and managed to get me an appointment that usually has a 4 month plus waiting period..... I'm scared to be honest.

Symptoms

Bad pain upper right tummy and back

Constantly nauseous

Tired all the time

Urine nearly dark brown

Bowel movements nearly white.... Have gone up to 29 days without a poo

Dry mouth all the time

Vomit practically everything up except porridge made with water.

Only can keep water down.

I have no idea what to ask or expect from this appointment. I've always been an active, healthy person. But the pain is debilitating. Can it be due to medication I was put on 13 years ago when I busted a couple of bones in my back? What is the dr likely to do? What other tests should I expect? Will I be put in hospital? I just want to sleep all the time as well.

Any answers would be appreciated... What is the panic? Am I really sick. I know I feel really sick but is this unusual for a 36 yo? What could be causing it? What can they do to fix it; whatever "it" is???

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Bundymiss profile image
Bundymiss
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Hello Bundymiss.

My LFTs and GGT during 2010 prior to diagnosis Dec 2010 were elevated but at a quick glance at yours, they are higher than what mine were. One of mine as I recall was in the 600s at the time and think that was GGT. (I do have the results filed away.)

I only presented with itching and fatigue. My stools did start to look a bit pasty as that is a sympton of PBC as is darker urine. So is a dry mouth (and also eyes). I am 50 later this month.

Obviously I am not doctor and I couldn't really say but I think if you have diagnosed PBC (you didn't state) though it sounds like it (though there are other liver conditions that give same symptons) then it would be usual to start on ursodeoxycholic acid (urso or UDCA for short) and that should improve the LFTs andd GGT.

There is actually a different range for the LFTs in PBC as we aren't considered to be within what is normal range so ours varies somewhat.

From what I can gather from this site and my way of thinking is that only if someone with a liver condition is showing signs of jaundice would they perhaps be in hospital to have that sorted.

On my first hospital appt following bloods aftrer bloods and also a scan (showed a relatively normal liver and surrounding organs) I was asked questions by the doctor, then I had repeat bloods and one that is known as the AMA (an antibodies check - mine was positive that gave the diagnosis PBC). He had a prod in my tummy area and checked my eyes and hands and feet. That's all at that point. I guess had the AMAs come back negative (the ANA did, that is another antibodies check) then it would have been taken further.

The first hospital consult for me was fraught with worry and I'd 13wks to wait until I went for my appt. I didn't know what to expect as I'd never frequented a doctor prior to 2010.

Certain medications can put strain on the liver but not thought to contribute to a person developing PBC. I have no idea how I came by PBC myself though I have my own theory.

You can experience liver pain with PBC, a lot of others on this site do (I don't at present), seems it can be a normal occurrence in PBC.

Though it is a big worry having to go to hospital, I'd say that once you know exactly what is going on, you can deal with it far better and in some way it of a little relief, was for me.

skippydownunder profile image
skippydownunder

Hi Bundymiss

I had similar results last May. Bilirubin 76, ALP 768, GGT 425, AST 662, and ALT 1179. My eyes were a shade a yellow and I felt tired and had a bit of pain in my back, my urine was dark and the stools lighter, but eating was fine. Was diagnosed with PBC as had raised AMA in April last year. Had a liver biopsy which said early stage 3, late stage 2. My gastro started me on Ursofalk which didn't have a great impact so he decided on methotrexate and this has brought the bilirubin down to almost normal but even though the liver tests are lower they are not in the normal range and have tended to hover in that area. These results had come down to Bilirubin 21, ALP 551, GGT 311, AST 59, and ALT 107 by September last year. Don't have the latest ones with me as only spoke to my gastro over the phone but he said they are about the same. (February 2014). He put the dose of methotrexate up to 20mg last Feb (2014) so we will see if there has been further change with this. Having a blood test today. Can't remember if I see him this week or next for results but will let you know.

My eyes are not yellow any more. I still get some pain in my back and a bit in my joints but I am 46 so maybe this is normal. Skin still gets a bit itchy from time to time.

I don't know a lot about this PBC. I think it is important though to get the bilirubin levels down as that is probably what is making you feel sick. I continue on with life as normal, bit tired from work but I have been lucky enough for it not to affect me in a great way yet. My GP did say though that it was lucky I went and had the blood test when I did.

Hope your appointment goes well. Write down lots of questions as you often forget if you keep them all in your head. I am in Sydney.

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