Hi. I was diagnosed with seronegative PBC around 11 years ago. There has always been a question about overlap with AIH but there has never been enough compelling evidence to put me on steroids or immunosuppressants. My bloods are generally well controlled with urso and are usually within or just above normal levels. However my consultant says I have a ‘smouldering’ ALT and he wants to be sure there’s nothing else going on under the surface. He was also a little unsure about my diagnosis as when I first met him, 2.5 years ago, I’d just had my son, and having come off Urso for the pregnancy and not having gone back on it straight away afterwards I had a big spike in my bloods, and around six months after my son was born I broke out in a weird rash. My consultant believes I had a drug-induced liver injury due to some antibiotics I was given post-partum. He ordered a biopsy which pretty much confirmed the diagnosis of PBC.
Anyway, here we are now, 2.5 years on, back on the urso, bloods close to normal, clinically well but with an ALT that is consistently slightly raised (eg last test it was 42). Consultant wants me to have a fibroscan just to be sure he’s not missing anything else- he said he’s not particularly worried about me. However I’m really nervous about it. I have health anxiety pretty badly since having my son, and can’t help but worry they’ll find out something really bad.
I don’t know what I’m looking for really other than any indication as to the likelihood of them finding out that actually my liver is much worse than they thought based on my blood tests?
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Smarties18
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Look at this from another perspective, you are fortunate to have an attentive consultant looking to do his best to treat you. The fibroscan will give him more data and get you treatment if needed rather than have it progress. Not all doctors are attentive enough to do this and would write it off as your numbers are only slightly high.
Chances are you are fine because your alt is only slightly raised. The fibroscan is only a precaution. Lots of folks cant even get a fibroscan because the machine may not be available in their location or their doctors won’t go the extra mile. It is good to get a fibroscan done so that you have a baseline for comparison for the future.
A fatty liver which is a fairly common condition in the general population might impact ALT and a fibroscan can detect that.
I can relate to your anxiety as I suffered from worry most of my life. That’s why I love ninja girls answer so much. Anxiety is the number one enemy of anyone with our disease. It amps up the immune system and worsens the attack on our bodies and livers. I beat anxiety by doing exactly what ninja girl told you. Looking at a situation from a perspective of gratitude. Even before I read her response I was thinking the exact same thing: What an attentive physician! Most aren’t like that. Every time I had a fear thought I replaced it with a gratitude thought. The more you practice it, the better you get.
Also there are other ways we can help heal our livers and slow down the inflammation besides URSO. When URSO alone didn’t work for me I turned to intermittent fasting and a plant based diet. Turns out my liver loved that! My enzymes were all normal within two months.
You sound just like me. I have health anxiety as well. I’m due for a Fibroscan in November. A little nerve wrecking but all I can do what is in my control ... eat well, reduce stress , and exercise . Good to meet you!
Like others here, I also have suffered from anxiety and worry. When I was diagnosed 3 years ago, it felt like the rug was pulled from under me. I felt healthy, energetic and had no symptoms. My hepatologist put me on Fenofibrate 6 months ago, which has brought my numbers down, including cholesterol. Although I was fearful/anxious when I received the diagnosis, I’m thankful for Jesus gift of eternal life. I can lay my fears, worries and anxiety at the cross and know that no matter what happens to me He will sustain me and give me strength and courage. I can lean on His promises and it fills me with peace. I’ll be praying for you and others here. This disease is scary and, for some who are in a progressed state, debilitating. But there is hope in Jesus. I pray that you find His peace through your journey of life. 🙏💕
I was put on steroids for 3 years as my consultant thought I had the overlap then immunosuppressant which made me extremely ill so I stopped taking them and researched a different consultant at another hospital as I was getting nowhere, my GP got in touch with the guy I’d found I saw him about 6 years ago and he recommended stopping the steroids slowly reducing the dosage and although my ALT is almost always raised which is an indicator of the overlap it’s the same as yours on the last test which is only just outside the guidelines they like it to be under 40 whenever possible. I personally would avoid immunosuppressant especially at this time with the COVID you will be open to every thing that’s going around. If you are a member of PBC foundation give them a call or log in to their meetings on Facebook on Thursdays every week at 2pm UK time and put your questions to the consultant he will give you an answer/advice how to move forward. Good luck let me know how you get on
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Upset and confused 😭
