Possible PBC/Fibroscan/dull ache - British Liver Trust

British Liver Trust

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Possible PBC/Fibroscan/dull ache

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Dear all again.

Firstly thanks again for notes on eating small portions every 2 to 3 hours!

I'd like to ask a question! I'm getting a horrid dull ache which feels like its coming from the my pancreatic gut region! When I've had breakfast this horrid ache normally goes away. It's not the usual hungry pain we all get when peckish! Does anyone else get this?

Well this is my week for my first fibroscan on Wednesday morning at Shrewsbury to see if I have a fatty liver or not. To be perfectly honest I'm looking forward to getting the results good or bad as I want to get to the bottom of it all.

I will update you all if I get to know anything!

Cheers again to those following me and for your support

Slaines

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Hi Slaines,

I know what you mean, I went out with my family for a lunchtime carvery yesterday and although I only had a child’s plate with very little on it I felt uncomfortable and stuffed. It was straight home and a hot water bottle and a cup of tea and two ginger biscuits for the rest of the day. I still feel full today!

When I had my fibroscan and a following appointment which should have been four months after but was pushed to six months due to Christmas. I was given the news that I had F3 fibrosis and told to continue to eat healthy and try to exercise. The specialist I told me that there is no medication to help a fatty liver.

You on the other hand have been told that they suspect PCB and from what I’ve read about it that can be helped by medication. 🙂

All these blood and liver issues seem to cross over somehow , that’s just my personal opinion, I’m no doctor, I can only go on my own experience. From what my doctor has told me, the diagnosis takes a long time to arrive.

We seem very similar but where as I have had my liver investigated first now I’m with a haematologist for bloods and further tests you have done it the other way around.

Keep smiling 😄 I’m sure we will get there in the end!

Wish you well

Elaine xx

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Cheers Elaine!

Just off to the gym will write whilst there!,

Sorry for earlier note addressed to Miles! Error! Silly me!,

I know Elaine what you mean, even small Sunday lunches plays hell with me too! Today I'm suffering with swollen tummy which is also sore! My hubby is off food shopping today for lots of healthy food as we've both been off the rails since early December ! Holidays, Christmas then still catching up with friends who've not seen for awhile. Invites are still coming in which I must delay if possible so that I can get back on track.

Will write again later as I'm at the gym and my friend has turned up.

Regards Slaines

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Hi Elaine for the second time!!!! Lol.

I'm now back home and have 're read your note! I agree with your comments we do sound similar but like you say there are lots of liver problems that do cross over with similar symptoms.

You can have PBC for 10 years before you start having the symptoms. You never know I could have a fatty liver too which I believe can possibly recover over many years of totally healthly eating and exercise. I believe there's no cure for PBC but healthy eating can increase life or there are those that get offered TP.

I'm one of those who can eat healthy for about 6 months then go off the rails when invited out or start entertaining !

My hobby is cooking which is going to be tough one if I do have PBC or a fatty liver as both will kick me into a permant healthy life style for ever !!!!! It sounds easy which I know I can do on a weekly/monthly bases but for life with no treats as such as I know eating the wrong things now causes discomforts which is all my doing.

Your appointment delay to 6 months, frustrating I bet for you. I look at it that we're very lucky to have the NHS service so I button up my mouth now! Other countries have to pay... Anyway I'm getting off my soap box now.

Please keep me updated on your progress.

Take care X

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Word of warning! I have found it’s better to gradually increase eating healthier rather than jumping in from one extreme diet to another, (again that’s my personal opinion.)

It was frustrating waiting six months. I had already been told I had a fatty live from a previous MRI scan but it was still a shock to then be told it was fibrosis.

Three weeks today I hope to get the results of my blood work and ultrasound, although I’m not holding my breath 😉

However 🙂🙃🙂

I too am very grateful for the NHS and the hard working people who struggle within in.

Elaine xx

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Hi Elaine

Cheers for warning note! I may have over done it with my comment on healthy eating ! I do normally eat healthy and usually keep to around 1000 to 1200 calories a day which is adequate for me . It's the chocolate and crisps I need to leave alone at night which kicked in over Christmas! The eating out is not good either I guess unless there's a nice healthy meal with lots of flavour! Flavour is the thing! All food should have mouth watering flavours exploding in your mouth then that bored feeling shouldn't set in!!!!

Last year and the year before I had CT and Ultrasounds which showed no concerns on liver! It was a routine blood test and me feeling dizzy and not myself caused the last 7 months of blood tests which are all still similar.

Anyway, Good luck ! I'm only at the start of this long road like many others have been for years!!!

Take care xxxxxx

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Hi Elaine

I meant to ask after your comment about going to bed with hot water bottle! Was that down to sore tummy or feeling very cold?

I'm suffering with very cold feet and hands and feel like my circulation is on the blink which I had yesterday and again today! Slight shivers but I feel ok other than the usual discomfort!

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I only had a child size portion but my stomach felt like it was going to burst 😬 I can’t tastefood at the moment,everything to me is bland.

I find that heat in the form of a hot water bottle relaxes me and helps with the pain. I have hot sweats not caused by the menopause I’m past that at 61 😃 It’s very rare I feel cold.

Elaine 😊

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Ha! I too like a water bottle but it filled one for ages. I'm sitting under the duvet at present which is not me! I cannot get warm and the heatings on! I don't feel ill either! This cold feeling has happened quite a few times hence my question do you. Hopefully it's not another UTI starting up!

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All will be revealed in due course 😉

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Hi Elaine , have you tried a gluten free diet? A lot of people with liver issues have reported benefit of eating gluten free. I have pbc/aih but also have celiac. Before i went gluten free i had to sit with hot water bottle after every meal. Just a thought.

Ang

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Hi Ange

I think your reply was meant for me and not Elaine ??? I've not tried Gluten free but will give it ago! Thank you for your kind advice and if I can help you in anyway If will.

Regards Trish

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Peter_Plymouth in reply to Hidden

Hi Ang,

That’s really interesting what you say about gluten free - never thought of it for myself but like a lot on here I do find my eating restricted and easily satiated.

Thanks - Peter

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And if it was meant for me 😉 I think you are right! Years ago I was told I was wheat intolerant and completely changed my diet and felt much better for it. I will give it a go, thank you.

Elaine x

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alfredthegreat in reply to Hidden

Hi there. I was always very cold for 4 year pre transplant. Even on hot days I would need a jumper and a body warmer on. We have a 12 kw wood burner in the lounge that belts out the heat and people visiting would be stripping off jumpers etc and still feel roasting hot, I was never too warm! Alf

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Hi Alf

This is so unlike me and I NEVER sleep in the day time ! My cold feeling have eased after falling asleep for three hours errrr! Hope I'm not sickening for something or that the cold feeling becomes the norm.

Cheers for reply

Slaines

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alfredthegreat in reply to Hidden

Hopefully it will just be a one off. You do a lot of exercise though that could explain the tiredness and need to sleep in the day when that is not the norm for you. Alf

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Hi Slaines

When I was at the two day Liver Transplant Assessment review the leader asked the group of seven people with liver ptoblems if, when they said it was cold, their partners said it wasn’t. All 7 of us put up our hands.

Just a point - doesn’t mean you’re that bad - Yoiks! Sorry if it comes across in that way!

Milo

My hubby was very cold all summer, never had the wood burner off, but since transplant his hands are now warm. And it's now winter!

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Thank you for reply. I'm glad your hubby is much better now! My cold feet and hands come and go! Weird indeed.

Take care xxxx

Hi saline’s. Since how long you had this pain and how constant the pain is ? Does any movement makes it worse ?. Also, did you had an abdominal ultrasound and what were the diagnosis ?

In my case, I usually get the dull ache when sitting for more amount of time. This makes sense because slouching and sitting for prolong amount of time was having issues with my liver. Well I did the abdominal ultrasound and they found fatty infiltration in the liver and that’s about it. My liver enzymes were only 2 points away from borderline.

Anyhow long story short I have been on a diet for 3 months now and the pain has subsided. It does come every now and then but note too frequently. This also became more prominent when I do an crunches as I will get the same dull ache in the liver areA. Actually any abs exercises which works on my uppper right quardrant wil give me pain. I went to several doctors and they all say muskuskeletol due to my liver enzymes being normal.

I think what I am trying to say is that diet and exercise do help. Also my right lower rib is inflamed. Not sure if it was from before or just happened. Since it’s more noteable now because I lost weight.

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Hi Darkdog

Firstly thanks for note.

Secondly the discomfort under both ribs is there all the time and like you I try to do crunches but feel there's an obstruction stopping me which could be a fatty liver.

For almost a month on and off I'm getting this horrid dull ache at he base /centre of my ribs. I managed to get it to go away by eating a few blueberries late last night and drinking more! It lasts until I eat!! Never had it before until recently.

This morning I have my first fibroscan todayso will hopefully know more ! My fingers are crossed on this point.

Take care and keep up the healthy eating!

Best Wishes Slaines

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Good luck bro. Lee is updated. Praying for you that all goes well

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Hi Darkdog!

My fibroscan went ok today! My kpa reading was 4.5 lowest and 5.5 median which I believe is in the lowest Kpa range of 1 to 4 !

My CAP reading was 259. My Cap IQR was 26. KPA IQR was 0.6.

I wont know exactly whats wrong until my consultant evaluates the fibroscan against all the blood tests they carried out in December.

In the meantime my healthy eating

will carry on!,

Thank you once again for your

Note

Slaines Female 66

Darkdog profile image
Darkdog in reply to Hidden

Well your Fibroscan is absolutely normal. No fibrosis and the CAP reading of 259 is just barely 10 digit off from the normal. That’s great news but sucks that you will continue have to research for the pain.

Anyhow do you have the number of your blood test from December like your liver enzymes ? Also, did you do abdominal al ultrasound ? What was the impression in the report.

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Hi again Darkdog,

Since July I've been having monthly blood tests. The September result stated Weak/Positive for PBC based on my my GGT level constantly being around 147 to 150 plus slightly high AMA figures. My GP said my autoimmune was highlighting some kind of disease hence the monthly tests. I've been informed that I'm having an MRI of my bile duct too but when I'm not sure. It may or may not be before I see the consultant again on the 19th of March.

In November I had a second CT scan and ultrasound of my abdomen as a check up for small growths in my lungs and cysts in both kidneys which are both of no concern. Both scans highlighted no issues with my liver but I believe these types of scan dont always highlight liver isdues. Hence the further MRI scan mentioned.

I still have discomfort under Both ribs and especially in my right side

which I've learnt to live with for years.

My gallbladder was removed in 2015. Prior do that I had a Pilitation

of my abdomen interior wall again due to pain in the right and in my back!,

I class myself fairly healthy and fit otherwise.

Thank you for your interest !

Regards Slaines

I to have that due ache after eating :( Gp said it is where my liver us stetching inside the casple! He told me to eat little & often.

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Hidden in reply to Abby14

Hi Abby

My dull ache between the base/centre of my rib cage has recently occurred over this last month . The only way I can ease the ache is by eating . The ache is not the same as normal hunger pains.

I do hope you get to the bottom of your cause for discomfort after eating.

Best Wishes

Slaines

Abby14 profile image
Abby14 in reply to Hidden

Thanks :)

What is PBC?

AyrshireK profile image
AyrshireK in reply to Abby14

Primary Biliary Cholangitis (formerly known as Primary Biliary Cirrhosis). Is an auto immune illness of the liver which primarily affects the Bile Ducts. Details on British Liver Trust page at:- britishlivertrust.org.uk/li...

Katie

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Abby14 in reply to AyrshireK

Thanks :)

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Hi Slaines,

I was thinking about you yesterday, how did it go with the fibroscan?

Elaine 🌻

Please do :)

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