Newly diagnosed. Help/advice needed p... - British Liver Trust

British Liver Trust

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Newly diagnosed. Help/advice needed please! Thank you.

Sammyel29 profile image
13 Replies

Hi everyone.

I was diagnosed with Cirrhosis a few weeks ago and was sent for a fibroscan and a SeHCAT. I refused an MRI as I'm so claustrophobic.

My SeHCAT has come back normal but my fibroscan is CAP score 373 and Cirrhotic Score 31.4.

What does mean please? I'm new to all this terminology and haven't even seen a specialist yet! I was sent for all these tests after a blood test by my GP.

Thank you.

Sam

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Sammyel29 profile image
Sammyel29
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13 Replies
Cat-B profile image
Cat-B

Hi you need to see your GP to discuss your results as they will have your medical history and can assess any symptoms, results in isolation are very difficult to discuss. Please don’t go to “ dr google “ . I hope you can get an appointment soon good luck

Sammyel29 profile image
Sammyel29 in reply to Cat-B

Hi Cat. GP is useless to be honest! Still waiting to see a hepatologist in person. Had 2 phone appointments. They're now sending me for colonoscopy, endoscopy and biopsy. They said I'm about a year away from being referred for transplant. I love Google! I always look for info from the Medical Journals and medical sites, not Mr ABC from Shepherd's Bush 😂😂. I don't know why everyone on here hates Google 😂😂. I bet they all use it!

Cat-B profile image
Cat-B in reply to Sammyel29

yes google is brilliant, it’s Dr google that’s the problem, I always suggest typing NHS and then whatever, so you don’t end up on some crazy site lol

BritishLiverTrust6 profile image
BritishLiverTrust6ModeratorBritish Liver Trust

Dear Sammyel29,

Welcome to the forum! If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

Sammyel29 profile image
Sammyel29 in reply to BritishLiverTrust6

Thank you so much! I'll call now.

Livaa profile image
Livaa

Sorry for your diagnosis, but for some of us, it's a wake up call. Please ask for a tranquilizer and get that MRI! You can't fix, or fight what you don't know (well, you can, but it's a lot more subjective). If you are newly diagnosed, that will help the specialists so much and the knowledge of actually what you are dealing with can empower you as you move forward and change your lifestyle. Good luck and God bless.

Livaa profile image
Livaa

Sammyel29, sorry, I thought I responded a couple of days ago. Please be brave, ask your practitioner for a valium or xanax, ask about headphone or music during the procedure and take the MRI! Your medical team needs that information! Good luck, and don't be scared!😑

Sammyel29 profile image
Sammyel29 in reply to Livaa

Lol no thanks 😂. When you've had over 10 MRI procedures during cancer treatment it kinda makes you go nuts. Add the chemo, CT scans and Radiotherapy to that and your fear if big noisy machines you have to go in only gets worse. Valium or Xanax, using headphones or music during the procedure does not work for me. You're welcome to take my place 😂

Sammyel29 profile image
Sammyel29 in reply to Sammyel29

*of

why did they order the sechat with cirrosis?

Sammyel29 profile image
Sammyel29

Hidden My GP initially suspected primary biliary cirrhosis as I don't have a gall bladder. That's why they did a SeHCAT. I count myself lucky that they're doing any test tbh!

do you have cirrosis by pbc?

why did she suspect pbc?

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