please, any help?: hi, I’m so worried... - British Liver Trust

British Liver Trust

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please, any help?

Liverfearlacey profile image
19 Replies

hi, I’m so worried 35year old female, high bp for 18 years, gallbladder out 18months ago then Jan this year I started to get symptoms again of being poorly diagnosed with BAM LOST 11kg and now another 7kg and was told yellow eyes and pain on right side and BAD itching on hands (I can bleed from itching them) bad bruising and bad bleeding would be investigated. Just had fibrosis scan and nurse said sending results as urgent…

what does the is mean?

mum fed up of feeling poorly, no appetite and forever tired & week

any opinion and explanation of what this means would be appreciated

Lacey

19 Replies
Fibro2021 profile image
Fibro2021

Hello Lacey

What possible cause of fibrosis are doctors talking about? Have you already been tested for hepatitis and other liver diseases such as hemochromatosis, alpha1 antitrypsin deficiency, etc.? In your opinion the factor of alcohol excluded in your case? How long have you been feeling poorly, no appetite and forever tired & weak?

Liverfearlacey profile image
Liverfearlacey in reply to Fibro2021

hello thanks for the comment, it’s been a while probably since having gallbladder issues near to 2 years but exhausted beyond and itching and weight loss too.

I don’t drink loads, maybe a bottle of wine a week or if gone to an occasion etc.

High bp with no cause for 18 years

I was told fatty liver to start then this fibrosis scan and now waiting…

I’m taking meds for BAM as the gallbladder removal left a leak of my liver in to my system and I have bile acids that’s highly up which they found from having a camera down my throat.

I used to suffer with awful anemia and had to have iron infusions but lately that has been good.

I don’t really no much more

Fibro2021 profile image
Fibro2021 in reply to Liverfearlacey

Do you have something similar to spider nevi or cherry angiomas (the tiny red dots, not spider nevi) on the skin of your abdomen or chest?

Liverfearlacey profile image
Liverfearlacey in reply to Fibro2021

so I’ve just googled cherry angiomas (sorry I’m rubbish) I have recently got a mixture of new flat marks mostly brownish which I presumed where like age marks and awful pigment on my face, but about 10 months ago I have a big red mole like bump which has just lost the colour but still on my jaw line.I also had covid 2020 badly in hospital and since then never fully great and then I got mid August this year and I put other symptoms down to that but my breathing is awful I cannot walk and talk and pulse at rest is always over 100/120 which is why I’m seeing so many docs but feel lost with this…

Sorry again but just hearing other people’s views, stories seem to show light

mtk0925 profile image
mtk0925 in reply to Fibro2021

not to butt in but what do the cherry angiomas mean? I have a few on my stomach

Fibro2021 profile image
Fibro2021 in reply to mtk0925

I don't know this for sure, but I also have them on my stomach and chest.

Browsingquietly profile image
Browsingquietly in reply to mtk0925

Just to chip in here, cherry angiomas aren't sinister, they are very common, especially on women over 30. Usually appearing on the abdomen. Spider angiomas are the marks that can indicate an underlying problem, such as liver disease. HTH 🙂

mtk0925 profile image
mtk0925

sounds like you have stage two which in most cases is still reversible with diet or removing the cause. Whether it’s auto immune, medicine, etc the most important thing is find out what’s agitating your liver and remove it

Liverfearlacey profile image
Liverfearlacey

thank you, I’m just so fed up of feeling exhausted, can’t sleep but want to sleep 24/7, my moods have been hell, I’m scatty out of nowhere and I feel like I’m going mad when this itching starts.

The consultant said I might have Gilbert’s syndrome as my eyes r always yellow and that was before my fibrosis scan.

I’m hoping to see consultant within 2-3 weeks as my Gp said he cannot understand my report

Thanks again

NelsonAlgren profile image
NelsonAlgren in reply to Liverfearlacey

You should look up "sleep reversal". It's common with liver disease. I had it before and after diagnosis. Couldn't stay awake during the day but I was up all night. It was weird. Now it doesn't happen anymore.

Richard-Allen profile image
Richard-Allen

Hello Lacey,

It would be hard to speculate at this stage as there could be a number of different issues that need to be ruled out here.

This may sound a little odd, but it could be due to gallstones.

Often when a person has a gallbladder removed, some of those stones could have travelled elsewhere and may not have been detected at the time the gallbladder was removed.

I ask this, because gallstones have a nasty habit of travelling. They can quite often leave the gallbladder and become stuck in the bile duct. When this happens, bile from the liver is unable to flow. This can then become backed-up and become infected and cause damage to the liver in the process.

My wife had her gallbladder removed some ten years ago. But, seven years later her liver enzymes would rise and then later return to normal.

This went on for three years. Finally a scan showed that she had a left over gallstone that were becoming blocked in the bile duct. This was causing the liver enzymes to rise. Later, this gallstone would free itself and the bile could once again flow freely. Is was then later getting stuck again and the whole process was repeated.

She finally had to have an out patients operation to remove these stones. This was back in 2020 and four stones were removed.

I merely mention this for information purposes only and sincerely hope this doesn't happen to you. This is just one of the possiblities the consultants will want to rule out.

Good Luck

Richard.

Gallstones blocking the bile duct.
Liverfearlacey profile image
Liverfearlacey in reply to Richard-Allen

thank you, I have bile duct leakage which has caused BAM. I hope your wife is doing well. And again I thank you all as these stories/experiences everyone else has had all so different just helps a little

Browsingquietly profile image
Browsingquietly

Have you had your bloods done recently? If so, is your bilirubin reading as high? X

Liverfearlacey profile image
Liverfearlacey in reply to Browsingquietly

bilirrun is always high now on meds for bile acid malabsorption x

Fibro2021 profile image
Fibro2021 in reply to Liverfearlacey

Please let me clarify one question, if possible. Have you had a SeHCat scan test to confirm bile acid malabsorption (BAM)?

Liverfearlacey profile image
Liverfearlacey in reply to Fibro2021

yes I had the test with nuclear medicine about 8 weeks ago & consultant started meds 3 weeks ago before the fibrosis scan, had a call to say consultant wants to see me this Sunday?!

Fibro2021 profile image
Fibro2021

Thanks for your reply. Hope your health improves.

GrannyDoll61 profile image
GrannyDoll61

Dream cream from lush helped my husbands itchy skin x

Liverfearlacey profile image
Liverfearlacey

update…

Had a telephone consultant Today with consultant.

He was lovely and said he was sad to confirm fibrosis stage 2 and now saying he doesn’t want to keep diagnosis of gillberts syndrome as he wants to biopsy my liver to get a better look into the extent and see if yellowing of eyes are more than Gilbert’s syndrome.

Said my weight is good and we need to change my bp meds, have a medication for itching and upped my BAM MEDS.

Platelets are high and haemoglobin are high.

Been very emotion today and feeling upset and drained but thankful my consultant is really good and he promised to do he’s best and find the cause and to try and help me feel well again.

Thank you all for help and support.

Anyone had a biopsy that can share their experience?

Much love

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