Synexus

Has anyone heard about synexus trails for fatty liver. I've got a appointment on 10th march to see if I'm suitable. I wondered if any of you guys had any experience on there trails. And what it involves

[Hidden]

I have had a number of first appointments for trials but never been accepted😢. I went on the initial appointment for the fatty liver trial on Christmas Eve 2019. You will have a fibroscan and possibly a blood test.

[Hidden in reply to Hidden]

Why didn't you get accepted may I ask? My last fibro scan was 11.5 n cap 328.6 mths ago. Lots of fat in my liver n scarring

[Hidden in reply to Hidden]

I don't know how bad mine is fibro scan reading is 40. 4.

And my cap is399, is it good or bad

[AyrshireK in reply to Hidden]

You need to have a serious chat with your doctor to get these results explained. Your CAP level is almost at the top possible score for fatty infiltration (CAP only goes to 400). kPa is in the cirrhosis band UNLESS you also have ongoing inflammation - Fibroscan can not differentiate between scarring and ongoing liver inflammation so it might not in reality be as high a reading as shown, however, if you don't have ongoing inflammation (which doctors can test for with blood tests) then your liver is showing signs of pretty advanced liver disease. Are you having any symptoms?

You do need to return to your doctor and get these tests properly explained, are you seeing a gastroenterologist or better still hepatologist? Are you having regular scans and blood tests.

If not then you need to push for better liver care from your doctor.

Katie

[Hidden in reply to AyrshireK]

I feel that I have not explained my diagnosis properly, I'm under King's hospital London.

Diagnosed with cirrhosis and varices grade 2, but struggling with the symptoms.

Ie sleeping, flatulence, tiredness

John

[AyrshireK in reply to Hidden]

Glad you already knew you have cirrhosis, thought it sounded bad that you didn't know that. Kings is one of the top liver hospitals in the country and one of the transplant units so you are in good hands.

You need to ask questions when you go to clinic appointments, take notes - before you go to clinic take a list of your current meds, current symptoms and any questions you want to ask. Take a pen and record answers.

Sleep disturbance, tiredness and varices are obviously common symptoms of cirrhosis. Educate yourself about the condition - the BLT website is excellent. The more you know the more you can take control of your care.

BLT also has a page about the care you should expect when you have liver disease.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/li...

All the best, Katie

[Hidden in reply to AyrshireK]

Thanks been very helpful

John

[Hidden in reply to Hidden]

That's pretty bad like Katie says. U need to get things under control ASAP u must be having symptoms with those readings?

[Hidden]

Too much fibrosis/scarring

[Hidden in reply to Hidden]

What was you reading if I may ask

[Hidden]

14.1

[Hidden]

Was, that cirrohisis then. My first reading was 12.7. A year ago. They mentioned cirrhosis was 12.5 and above. Cap score was 328 n same on 2nd scan

[Pussycat65]

I had a letter from my Dr about Synexus to ring them. I rang and I was not a suitable candidate as I have Cirrhosis. They asked me lots of questions and said would keep my records on file for any others which are suitable.

[one2one]

Yes chris, I received a email from synexus asking for volunteers. Registered an interest, but don’t think 🤔 I’m a suitable candidate.

You may as well try !. You’re not loosing anything, but you could gain, even if it’s knowledge yeah.

Chrissie, 👌