Fibroscan questions

[marktq1]

Hi I had a fibroscan 6 months after a successful trial to cure my hep c a year prior to treatment my fibroscan score was 23 after treatment the nurse doing the scan said I was awkward to scan tried 3 probes eventually came up with a reading of 21 had taken about 40 readings by then the range was from 10 to 38 said that was a wide range the next week at my local hospital I had another scan nurse said I was indeed difficult to scan she came up with a reading of 18.5 with the range varying from 8.5 to over 40

Is this sort of range normal and what does it mean?

Another worry I. Have is that when I completed the trial I was told I must request my local hospital for 6 monthly ultrasounds the were only doing an annual one however they still are unwilling to do that and when I query it and point out the guidelines are that all cirrhotics must be offered 6 monthly scans I feel they think I am being fussy and are still sticking to annual scans I am much better after the drug trial but concerned that my spleen is continuing to grow (the trial doctors had expected it to shrink)

Am I worrying too much or should I keep pushing for 6 monthly scans

Mark

[Bolly]

A fibroscan of above 20 like you had before treatment would suggest cirrhosis. If you have any letter from your GP, specialist or consultant that says you have been diagnosed with cirrhosis, then current UK protocol is you get 6 monthly ultrasound scans and 6 monthly AFP tumour marker blood tests as a monitoring for HCC cancer, as people with diagnosed cirrhosis are at higher risk of progressing to liver cancer

However, if you dont have any paperwork or a doctors diagnosis of cirrhosis, then you may be stuck with the yearly scan your hospital is currently doing.

I'm guessing with such a wide range of fibroscan results the doctors are unable to make a definite classification of where you are actually at! 8.5 is pretty good and would suggest no cirrhosis, 40 is pretty bad and would suggest established cirrhosis. 18.5 kPa is suggestive of cirrhosis (anything over about 12 is cirrhosis) but your range is so wide it seems they are reluctant use the Fibroscan result as a measure of how your liver is!

[marktq1 in reply to Bolly]

Thank you for your reply my consultant knows I have cirrhosis and this has caused the portal hypertension and hence the enlarged spleen and they are aware of the guidelines and have been asked to do 6 monthly ultrasounds by the research centre that I did the drug trial with ( gs5816 sovaldi combo tablets they said my cirrhosis will remain but not get worse but cancer risk remains but my local hospital says they are unable to do 6 monthly scans even tho when I talked to the ultrasound dept they said they would have no problem doing it they are not over busy that the refusal is from the consultant not them!

[Bolly in reply to marktq1]

I'm assuming that now you have completed the drug trial your care is now under the hospital consultant not the hospital/research centre where your trial was held, so I assume he has the last word re what monitoring he is prepared to offer.

[marktq1]

That is correct my specialist nurse at the hospital says they are aware of the guidelines but are simply unable to offer cirrhotics 6 monthly scans

the ultrasound dept said they are perfectly able to do so if it is requested so I assume it is about money

The ultrasound technician said sometimes the guidlines can be silly and if they are my consultant will ignore them but he would never put a patients health at risk

This conflicts with the doctors at the research centre who told me to kick up a fuss in the unlikely event I were to be not offered 6 monthly scans

[AyrshireK in reply to marktq1]

That sounds ridiculous, those 6 monthly scans are absolutely imperative to keep an eye on your liver as you are well aware due to the increased risk of liver cancers in a cirrhotic liver.

I wonder if a request in writing is worth trying in that way a letter is on your file - they don't like that because you've then got a note in your records which could be brought to play in a law suit if god forbid you were to have a tumour develop which they have failed to identify due to a failure to carry out appropriate scanning, action tends to happen if you write your request.

In our case I know that the transplant centre we attend kicked up a major fuss when my hubby went about 9 months without a scan. He now gets them 6 monthly on the dot.

Keep pushing for that regular scanning.

All the best, Katie

[marktq1]

Thank you for your advice I think that is what I will do at least they will have to put in writing why they are unwilling to give me 6 monthly scans and justify it

Hopefully that will promp them to increase scans to 6 monthly

Thanks again Mark

[AyrshireK in reply to marktq1]

Certainly that's what I did in June 2013 when a promised referral to transplant centre hadn't happened - local consultant had said he was doing it in January 2013 but by June no appointment had come and we found out local consultant had actually gone off sick himself and no referral was done. It ended up getting done within a week after a panicky phone call from local hospital & an emergency (next day appointment) with a locum and we were off to transplant clinic within a fortnight.

Put it in writing and see how you get on, as I say it is in your file then and can come back to bite them on the proverbial if they fail to act.

Best wishes, Katie

[AyrshireK in reply to AyrshireK]

As regards fibroscan I have no idea - hubby is three years post diagnosis with cirrhosis and he's never had one. They seem to cause a whole load of confusion with rafts of figures that no one seems to ever get discussed properly with them plus figures seem to differ in their interpretation depending on what the cause of the liver condition is.

That is most definitely something to discuss with your docs.

Katie

[Pintsizefury]

All I can tell you I've been living with Hep-c for over 30 years went to three clinical trials and almost died and I have two children one with special needs I was a basket case that I developed a super else's very quickly went to menopause very quickly the time is 40 I was finished and they tried to do the same intravenous injection because the other pills for the Osteperosis did not work . This is very important for you to know love I went to three clinical trials I almost died to do two of them they finally came out with a cure so they said but I did my research . The Neutra trying to give you know the pill that cost fortune that was only done through a clinical trial for people that already had liver transplants and then went on the pill the new pill that so they do not have any studies on people like us who have 50 to 70% cirrhosis and I don't even drink . Please be very careful because they have not studied people that have not had a chance client for this new job I know it's available to everybody to the government funding's now but is very dangerous. Intervenous a steel drug is also dangerous I blew up on the first one I blew up so bad I couldn't even open my eyes I was rushed to hospital don't take it to go try the cure don't take it and ask questions if you were genotype one a 1B4B don't take it my specialist is one of the top in the world and goes does talks a little Switzerland told me the very Careful of it I lost hearing my pancreas is not working my asthma is really bad then vision is so poor I am legally blind and a lot of it is due to the last clinical trial with the Pegatron and ribavim I lost hearing my pancreas is not working my asthma is really bad then vision is so poor and legally blind and a lot of it is due to the last clinical trial with the Pegatron and interferon yes he tell you know that stuff is in there they told me a lot of things they told me at all I would get his flu like symptoms I spent two years solid two years every month in the hospital with pancreatitis so bad I almost died they can send my children I don't drink unfortunately I have a lot of sis and went up there and very young I had a transfusion and they found out that transfusion was tainted!!! Just ask your doctor your specialist why they did not test everyone only the ones that had a liver transplant the problem change the subject I make a story up and you will know what I'm talking about keep well warmest regards

[Pintsizefury]

Hi it's me again sorry for the lengthy one but I am concerned for you I also have portal hypertension did they put a band on the portal vein because I've had to have two of them my hypertension is so severe stroke this is all from this stupid treatment honey and I know you're not stupid because people with this disease really do their homework . I have two ducts Filled with sludgeand have to take pills or to try and remove them I have cycsts all over I have to take Creon for my pancreas know because I'm a diabetic all from those stupid clinical trials I just want you to be totally informative because what one doctor says doesn't mean another doctors going to say it once they know you know all about it they get scared and they start giving you the truth be well live life to the fullest and always laugh !!!!