F4 Fibroscan - follow up?

[Shaun1980]

Hi all, newbie here.

I had a fibroscan last month, about 4 weeks ago.

Scored an F4, but have had no follow up calls/appointments since.

I know the NHS (England) are busy, but is this normal?

I have no energy, could literally sleep for days and feel pretty down and out as a result.

Does follow up "treatment" or appointments usually take this long? I am usually asleep so keep missing the GP to call - which is highly frustrating!

Any views welcome!

[AyrshireK]

Who arranged your fibroscan Shaun? If it was your GP then you need to make a point of having a follow up consultation to make sure a referral has gone in to a hospital consultant.

F4 could obviously indicate you have reached the stage of cirrhosis of the liver BUT this could also be a falsly high figure since fibroscan can't tell the difference between ongoing inflammation and actual fibrous tissue. Any fibroscan result needs to be looked at in conjunction with blood tests to see if any inflammation markers are raised.

If it turns out you do have cirrhosis then you need to identify the cause and see what can be done about slowing/stopping the assault on the liver and this could help your liver heal to a degree.

You need to be under the care of a hospital specialist from now on - preferably a hepatologist (liver specialist) or a gastroenterologist at least.

You'll need regular monitoring with 6 monthly scans and 6 monthly bloods and possibly tests to see if you have portal hypertension and/or varices.

Obviously covid situation is still having an effect on waiting times but make sure you do have that chat with your GP (really push yourself to make the effort) and make sure a referral has at least been done.

Katie

[Shaun1980 in reply to AyrshireK]

Hi Katie

Thank you so much for the comprehensive reply.

My GP referred me to a specialist following an ultrasound scan result (last May!) that was not communicated or followed up on.

It was the hospital that arranged the appointment and I was told after the fibroscan my GP had been informed, and I was being referred to a liver specialist.

On my NHS app, it shows a referal to the gastroenterologist was made.

I think I am just nervous as hell and kinda expect results and movement like you see in the movies haha.

I have a follow up with the GP as my blood pressure is high so I will chase it along then.

Good to hear F4 is not quite as clear cut as I had in my mind. I was sitting looking it up via Google and thinking I had a 50/50 chance of still being here in 12 months. You know how it is....

Thanks though, your response is very reassuring. I will report back with any movement!

Kind regards

Shaun

[AyrshireK in reply to Shaun1980]

Even if it turns out to be cirrhosis (F4) then it isn't the end of the world, provided you can get on top of whatever caused it or indeed symptoms are few and you can manage them then there is no reason you can't live a good long life even with cirrhosis.

My hubby has cirrhosis - initially presenting with decompensated, life threatening symptoms with a massive variceal bleed back in April 2012. 10 years later he's still here, now compensated and although not 100% symptom free he is living his best life. Cycling most days and doing ok in the grand scheme of things.

Hopefully you get your hospital appointment soon and can take it from there.

Katie

[Wordesley]

Hi Shaun, I know how frustrating it is when nothing seems to be done. I had a F4 result on fibroscan in February and took the results to my GP who admitted that she didn't know what they meant, even though the explanation was there in black and white. She arranged an ultrasound to check for gallstones, and I finally got that last Friday after pushing for an appointment. During the ultrasound I heard the technician calling out the findings to an assistant and she stated gallstones and fatty liver. I now have to wait for the results to go to the GP, and a blood test which is not till the end of the month, before I can speak to the doctor. I tried to push for a referral on Friday and ending up speaking to a different GP, went through the explanation again, and he asked me how much I drank. Answered maybe 3 units some weeks but go months without drinking at all. When I checked the online access later all he had put is that he had a chat with me and I am exceeding the recommended sensible alcohol level! So no referral, incorrect details on record and mounting frustration. I normally don't disagree with doctors but not this time - so keep plugging away until you get what you need. Good luck

[Shaun1980 in reply to Wordesley]

Thanks for the message and explaining your situation!

3 units a week?! Hardly excessive drinking now is it?

I've been a recovering alcoholic for about a year or so. Interesting you mention gallstones, have you ever suffered from pancreatitis? That was the reason I reduced then stopped drinking (would not wish that on anyone - pancreatitis!)

Sounds like a calamity of errors, but I do hope you are getting somewhere soon.

I was more concerned when I went to the GP a while back complaining of reduced mobility (I have cerebral ataxia due to drinking) and being completely exhausted all the time. He calmly asked "has no-one discussed the ultrasound results from the scan you had LAST MAY"

"Nope"

"You need a referral to a specialist"

......

I am sure we will get there in the end

I'm not swinging at anyone in the NHS, I know they have been battered with COVID - just one of them things I suppose. Good luck also though, I hope they can sort you out