PBC Foundation
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Just waiting blood test results very anxioud

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

.

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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 🙏🏻🌻🌻

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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

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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🌷

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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

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

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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.

Karaliz

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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

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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!

Karaliz

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Hi

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

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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

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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!

Pam

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I’m low end F2.

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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

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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!

Pam

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