Worried about high alt

Hi all

After reading lots of different stories about Pbc and elevated alt I feel even more panicky now (if that's possible) about how high mine have risen since August-November. In Aug alt was 70 and November were 421😳 with ggt of 261. Both my consultant and gp said its inflammation that is making them elevated. I'm just scared about the big rise. Pbc is still yet to b diagnosed of which I have a biopsy on Friday (scared again). I don't have symptoms at all only a bit of itching on the odd day but I only seem to itch when I think about this whole nightmare plus get stressed and when I forget about It I don't itch. Apart from that I feel physically normal. I can't help but think am I in the later stages because of my lft's shooting up but then I grasp onto a positive that my 2 ultrasound scans plus fibro scan showed no liver damage/cirrhosis back a few months ago. Can my liver have been damaged between Aug and November because of my high results? I look at my children and don't know if I'll see them grow up, my consultant said this disease would take decades to affect me but that was said before he saw my latest lft's. So many questions, so much going round my head. Any advice would be appreciated x

22 Replies

  • Hello,

    Try not to jump to conclusion from blood results. I had very high lft for 8 months before diagnosis and I didn't suffer any fibrosis or cirrhosis from it. All my lft back in normal range now , I now take urso. Have you had the AMA blood test? Hopefully you should have the results from biopsy soon and you will know more. Try not to worry too much.

  • Thankyou for your reply, it helps a lot x

  • Hello Bellalou10

    I think your story is the same for many before getting diagnosis. Detection and diagnosis of PBC seems to be so much better than before. The PBC Foundation have a video on their website, which is free to join, go to the members section, which gives a good explanation and presentation from Dr. Neuburger,

    There is also a more recent report - follow this link


    Dr. Neuburger during his presentation in the PBC Foundation video talks about asking for a light sedative to help you through the biopsy. For myself I had not researched anything before being diagnosed so my biopsy was done without any sedative. However the doctor did ask me to relax, breath and advised that I would experience upper right quadrant pain./discomfort for the time of the biopsy. It was, for me, not a bad experience just a little uncomfortable.

    One thing which may help you reduce your stress level on this is to know that because of early detection and the use of Ursodeoxycholic Acid - Urso for short - life expectancy of a good majority of PBC sufferers is the same for any other group of people. It is said that most of us will die with PBC rather than because of it.

    I have been diagnosed with PBC for at least 10 years but I am positive that I was suffering for at least 4-5 years before diagnosis.

    let us know how you get on

    best wishes

  • Thankyou butterflyei for your reply, I agree with everything you have mentioned, I am actually under prof neuberger so yes I'll watch his video thankyou x

  • Hi! Excellent advice you gave Bellalou.. I could'nt have done it better

  • I don't think the numbers relate to damage, not sure but my numbers were 1800 before Urso and 900 after three months. Told that this is as good as it gets and I was only at stage 0/1. Will be interesting to find out what's been happening when I have a scan later this month. Don't worry about the biopsy, a bit uncomfortable and it's over very quickly.

  • That's really encouraging kathyg, thanks so much. Hope u get on ok with your scan x

  • Try to be stress free, why worry about something that maybe is not there. Handle problems as the emerge. Stressing out does not help. I hope it all goes well, take care...

  • I know Brummi I do tend to be a stresser and look to the worst possible case scenario. Thanks for your advice x

  • Hi Bellalou, Im a stresser too, always think the worse, always scared, , Im 72 , was diagnosed 10 yrs ago, just had my latest bt results, scared me ,liver function worsened, cant take urso, they have given me another drug called Budesonide, does anyone know anything about this drug? Anyway !!! we can stress together Bellalou LOL , BEST WISHES mylo2

  • Keep calm :) I know much easier said than done. Don't fear the biopsy, it's really not too bad. I am diagnosed over 3 year. At diagnosis, Very high bloods and jaundice. Also had AIH at time of diagnosis so was on steroids for 18 months. Taking urso and imuran, bloods have come back down and liver function normal, I've had CT, MRI and untra sounds this year, mild scarring of 3 years ago is still mild scarring no further damage. Touch wood stays that way for many years to come. Other than lack of absorption of certain vitamins and iron I am and feel absolutely fine. Try not to worry to much, you will be well looked after regardless of result x

  • Dont you suffer from itching. That is my biggest problem and then this pain in my right side, it comes and goes. I cut gluten out and all fatty, spicy foods.

  • No, I have no itching. I got mild pain if I've eaten too much fat, but nothing major. I have been tested for coeliac disease a few times due to low iron but thankfully not coeliac, have enough to worry about. I was told cathegorily not to cut gluten unless confirmed, we have enough problems with nutrient difficency not to cut anything except don't eat too much fat.

  • No I don't have any symptoms either rockie (yet) I'll make the most while I can x

  • Hi Bellalou. It is understandable that you will feel scared. I was also.The MRI, Scans showed no liver abnormalities, only after the biopsy, but to confirm I had to go for the ERCP and then PBC was confirmed. That is now 6 years ago. I know I must go for blood tets again, but with the itching getting worse, I dont expect a good blood result. Just try and relax. I was told to try and not stress. Keep me posted

  • Hi Bellalou, I seldom suffer from itching - only when I feel stressed. Had high APL (over 8 x upper limit) prior to diagnosis 6 years ago. Now almost normal thanks to urso. Occasional pain under ribs on right side but generally feel fine. Get tired so pace myself but although PBC is a nuisance luckily for me has not changed my lifestyle much at all. Don't worry too much with the medication I find it quite manageable. Take care x

  • I remember being told 15 odd years ago by my consultant that blood tests are only an indication of how your liver may be. The only sure way was (at that time) by biopsy. Now I get yearly ultrasound scans to check on liver damage. So far blood tests havent been great but by ultrasound the liver is fine. All I have is raised glands in duct between liver and pancreas and they keep an eye on these by measuring them. So try not to worry please. X

  • Thanks june9961 for your kind words, my consultant also said my high results are inflammation not necessarily my liver. think I will have to go on steroids as well as urso. Keep well x

  • I would say maybe u have something else going on, AIH, a biopsy will tell. I'm scheduled in January for biopsy to rule in or out AIH overlap with PBC. But, better to get on the meds and get it treated is the way I look at it.

  • Hi donna2641

    I did maybe wonder that but all my bloods for hepatitis have come back negative so I think they think this is the next most obvious thing as I fit the criteria. Although there is enough doubt do a biopsy so I'll just have to wait.😕

    My gp says he is pretty sure it's Pbc so I just pray it's in the early stages but if I go by when I first itched that was 15 ish years ago and I'm only 42 now with no symptoms still. 🤔

  • That sounds a bit confusing! I meant I had the itch 15 yrs ago, went to dr who said stress was prob why and itched about once a yr ever since normally after a stressful event. Never guessing it could b a chronic disease, itch came back a yr ago nearly and it's just now being investigated but haven't itched for nearly a year. Weird

  • Your bloods won't come back for hepatitis.... I had all bloodwork and don't have any antibodies for hepatitis...only way to dx is thru biopsy. However, the smooth muscle antibody SMA, and IgG positive r indicators as well as high ALT. I also have PBC....although it's rare, some have both. I have no symptoms. I just got dx with PBC October 2, 2015. Biopsy will tell the story. But not as accurate on stage. From what I've heard.

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