Just waiting blood test results very anxioud - PBC Foundation

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Just waiting blood test results very anxioud

Mirimaur profile image

Still waiting diagnosis . Saw professor Pinzani at the at the Royal free. He is so very kind and caring . He even stayed with me when my bloods were taken . He booked me in for a fibro scan then and there . I was the higher. end of normal . 6. 5 was mentioned and 12 . There is some moderate fibrosis .he called me to say liver function tests still elevated . They have been for a few years now but have recently got worse. They went out of control about three years ago when I took herbal tablets of spirulina .once stopped lft s returned to normal except ggt . Bilirubin has always been normal and still is. My gall bladder was inflamed and I had gall stones near the bike duct . Gall bladder was removed in February. However lft s did not go down ,In Feb I had ultra sound , Liver MRI and mrcp all normal. I had blood tests for all auto immune disease inc autoimmune Hep and Pbc . All negative . My igm was raised . There was also some staining on one of the tests. I don't understand exactly why . No one picked up on these things. I believe they were so sure it was my gall bladder. I was very shocked and upset to find out recently I have fibrosis all blood tests have been repeated will have results on Monday . Pbc has been mentioned .i am meg for Hep a,b and c, I feel very scared a lhowever reading some of your comments have been comforting . I am not tired and seem to still have energy I little bit of itching I'm not sure of that is stress or part of whatever I have . I am so thankful I have found Professor Pinzani . He said he would take good care of me .i am still very frightened though , I am 63 and weigh eight and a half stone I do not drink and eat a healthy diet .i wish everyone good health

Thank you


14 Replies

Hi there! Sounds as though you are in the care of a very caring & compassionate dr. I have found, personally, as I feel others may agree, PBC has given new meaning to fear & uncertainty. I suppose the first most difficult thing is to accept the diagnosis, which I'm still struggling with. Like you, all my hep's were negative, no RA, no lupus, bilirubin low normal. I too am 63😊 my fibroscan showed mild to moderate scarring, scored low end of F2. I weigh 112 lbs, so I'm curious how much is a stone? You hang in there. Through all the caring & loving support here, we will persevere 🙏🏻🌻🌻

Thank you so much I worked out that I weigh exactly the same as you . Slim . Yes my specialist is is very kind , he travels the world lecturing. He did say I had moderate fibrosis and I was the higher end of normal . They did keep saying the number 12 which terrified me. I am convinced he knew immediately what was wrong yet cannot say until all blood tests confirmed. I have his email and he always responds he has said not to worry ( easier said than done) he said I may need a biopsy .what a nightmare . I have read on this site that we can still lead good healthy lives and not succumb to this disease . I pray .

I have

Look st us, lol! You are lucky to have that dr. I see a GI Dr. I'm still building trust. I was impressed that he did his fellowship in Toronto. As far as your number being 12, I have seen people here score a lot higher, which I understand that doesn't make you feel better. But I think 12 is still in the safe zone. So try to lay that worry to rest until your dr talks to you. You will be ok🌷

Thank you . I think only parts of my liver were 12 I think some were 6 . 5 my husband and I could not understand very well. Yes we will be ok. Somehow I have a feeling . Please keep in touch . It's lovely to talk with you xx

You're so welcome. I enjoyed the visit. Anytime 👍💐

Karaliz profile image
Karaliz in reply to Mirimaur

Hi Mirimaur

Try and not worry. I was diagnosed at 38 with 4 young children. Now 14 years later I have widespread cirrhosis and am on the trial drug OCA ( not commercially available yet here in Australia).

However I still work as a nurse, look after my family and hope for the best. My Dr says I will need a transplant down the track but I am philosophical - what will be will be. This is a slow moving disease and gives one time to ruminate and plan.

Enjoy your life - we only have one each and each day is precious!

Take care.


Mirimaur profile image
Mirimaur in reply to Karaliz

Dear Karaliz

Thank you for you reply . You are amazing how you deal with this . I guess we have to be as strong as we can . At least it is slow in its progression . I am just in shock at the moment . Every day is a blessing you are right . I try and keep as healthy as I can I guess a good diet can help.

Wishing you well

Miriam x

Karaliz profile image
Karaliz in reply to Mirimaur

I understand the shock Mirimaur. You will slowly incorporate it into your life and hopefully not notice it too much. I remember the GP telling me she suspected I had a rare liver disease but she had only ever seen one other case of PBC and knew very little about it... I too was in shock - I remember saying to her "I'm a nurse, how can I have a disease I've never heard of !" As the youngest of my 4 children was only 5 I was very concerned. However I have to say for the first 7 years I almost forgot I had PBC! It was only when I stopped responding to Urso and started to feel much more unwell that I had to take stock of what may actually eventuate.

I'm still jogging along with cirrhosis and trying not to see too far into the future - as I said I do concentrate on the fact that with this particular disease we are given time - people diagnosed with cancer are not afforded that luxury and must face all sorts of decisions and anguish immediately.

I feel fortunate that I have had many years to consider the outcomes of this particular illness.

Hope the above resonates with you a little and I wish for you a slow leisurely ride on the PBC journey!


Jeanb47 profile image
Jeanb47 in reply to Mirimaur


I can truly sympathize with terror. For me it’s the known future. Right now I seem to be managing.

I’m reading everyone’s

comments and it is encouraging that many have the disease but are living long lives

Mirimaur profile image
Mirimaur in reply to Jeanb47

It is so scary Jean I have just been diagnosed . Positive AMA and raised Alp alt and gamma . Biopsy next week fibro scan says mild scarring but that will be confirmed by biopsy . I am praying that it will show mild . Have you been diagnosed yet Jean ? Or are these the results you are waiting for . I pray for a position be out come for you x

Seems to me you're in pretty good shape. I was diagnosed 4 month s ago at stage 3 severe fibrosis. I thought I was in pretty good health up until then. I guess the joke was on me! If you have it I bet you'll be just fine. I wish we all could have doctors as sweet as yours!


gwillistexas profile image
gwillistexas in reply to 4pjx__

I’m low end F2.

Dear 4 pjx , yes it's comes as quite a shock I thought my liver was healthy after all the scans . I thought the same as you , that I was healthy. How are you coping do you feel ok? I wish you could all have a lovely sweet specialist as I do , proffesor Pinzani is Italian and is a leading authority on the liver he is at the Royal Free in London. His kindness is overwhelming I just hope he will be able to help me . I do trust in him . I will know more on Monday . My liver enzymes have been raised for a while and have been going up esp Gamma . I wish you well Pam . Do you take acid treatment?

Kind Regards

Miriam x

I feel good. Last visit to the hepatolagist he said my lfts were stable so no need to go back for 6 months. I'm not sure why but I think I feel better than I did 4 months ago. I guess with the Urso my liver is functioning better. Seems to me I feel better in tiny little increments either that or maybe I am relaxing a little more that I don't have to go back for a while. I do have to have scans every 6 months now to check for cancer. The last one was ultrsound several weeks age. It came back clear....my sister says to 'go ahead and exhale now!'

Best wishes!


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