ELF Test

[angedogs]

Hi Everyone,

Just a quick question. Is an ELF test of 9.31 (moderate fibrosis) be classed as significant fibrosis and if so is it likely to be treated or will it be wait and see? Thanks in advance.

Ange

[Wass71]

Hi, I had an ELF test and my score was 10.3. I was told this confirmed cirrhosis. This was in conjunction with other tests which corroborated this finding.

I think your Dr s should tell you what this result means for you, as it will depend on the cause. If your liver has been damaged and the cause is removed then it can heal and reverse fibrosis. The liver is a very big organ and can manage on only a small amount of functional tissue.

Do they know the cause of your liver illness?

[angedogs in reply to Wass71]

Hi

Thanks for answering. I have had NAFLD for 10 years so I get bloods checked regularly and have a scan every 2-3 years. I was concerned as I have been getting new symptoms so my GP referred me to a Hepatologist. She was very dismissive and told me people who have NAFLD for as long as 10 years are very unlikely to progress to anything more severe. She dismissed me after giving me advise on healthy eating and exercise. I was still concerned especially as I have heart failure, hypertension, hypothyroidism and sleep apnea and I am on a lot of meds so I paid to have the ELF test done privately.

This week, on the very day I had my private ELF test, I received a letter from the Hepatologist saying she had reviewed my records from another hospital and has now decided to perform an ELF test more for reassurance than anything else. She also added that she didn't feel there is any 'significant' fibrosis in my liver. The results from the private test came today and are 9.31 which is in the upper moderate range. So I just wanted to know if she is wrong, and the fibrosis is significant. I am thinking now that it must be. Also I am puzzled because a Fibroscan at a different hospital came up at around 6.2 Kpa which is why I doubted the accuracy of the Fibroscan. I am going to have the NHS ELF test on Monday and I think it will probably be very similar to the private lab one. I can't discuss it with the Hepatologist until I get the new results.

I am sorry to hear you have cirrhosis. Do you mind me asking what other tests you had and what treatment you have been offered if any?

[Granny56 in reply to angedogs]

Hi angedogs ,

I have a similar illness profile to you and also have NAFLD and NASH. It makes me angry to hear how dismissive the Hepatolgist was. All fibrosis is significant and someone like you on multiple medications should be closely monitored. These medications, although necessary are nonetheless toxins. Toxins which will pass through your already damaged liver.

At least your case was reviewed after you had left the hepatology clinic, that fact is at least positive.

You could try writing to the NHS or heath insurers with a copy of your receipt and results from the ELF test and claim your money back.

It really makes me angry sometimes to hear people tell stories like yours. It would seem there is no empathy left in the NHS or other healthcare systems .

I hope you are treated with respect and dignity at your next appointment. Liver disease is a worry for all of us but we need the truth to know what we are dealing with and how to plan for the future.

Good luck

[angedogs in reply to Granny56]

Hi Granny56

Thank you for replying. I did go home feeling very upset and had enough doubt to do the ELF test myself. She made me feel that I was wasting her time, that she was the expert and knew best and although I questioned what she said and mentioned all my other conditions and how they may be linked to my liver problem she was very dismissive.

I am not even sure if any action will be taken once I get the test done on the NHS because NICE guidelines state:

1.2.6 Explain to people with an ELF score below 10.51 that: they are unlikely to have advanced liver fibrosis and reassessment for advanced liver fibrosis every 3 years for adults and every 2 years for children and young people is sufficient for regular monitoring and no interim tests are needed.

I find that quite worrying because I could be just one step away from cirrhosis but I will insist they carry out more tests as, like you, I feel I should be monitored more closely because of the medications I am on.

Ange

[Granny56 in reply to angedogs]

I would write down all your conditions and all medications even ones that may not be prescribed like vitamins. Ask for a care plan due to poly pharmacy and multiple Co morbidity. This plan should include regular blood tests for renal and liver function. The package insert of your medications will recommend this. At the very least, an ultrasound of the liver could be done along with an annual cardiac echo and ECG to monitor your heart failure. Check out the ESC (European society for cardiology).

Perhaps if you approach from a different angle, you might get a better response.

In 2015, I had an episode of cardiac de compensation. My liver was massive which might have been the cause of my acute cardiac condition or my acute cardiac condition might have caused the congestion in my liver. The doctors couldn’t decide in this chicken and egg situation.

My point is that we are not made up of single organ, everything is connected and we need to fight to be treated as a whole person... both physically and psychologically.

NICE guidelines are just that ... guidance. They are based to a degree upon the NHS budget.

[angedogs in reply to Granny56]

That's very useful information. I haven't got a care plan so that should be worth looking into. I see the cardiologist once or twice a year now but at the last appointment he didn't offer me another echo so I don't know how my heart failure has progressed.

I do have blood tests for liver, kidney function and full bloods several times a year but they are done randomly whenever I complain of not feeling well.

Just before Christmas I was sent to see a doctor at my local hospital who is a general consultant and is good at looking at comorbidities and joining the dots. He spent over an hour talking to me and going over my history and different medications. He then ordered various blood and urine tests so I thought it all sounded very promising but he then wrote to my GP saying my blood tests were satisfactory apart from RNP antibodies which he felt did not fit in with my present symptoms. The blood tests weren't satisfactory as I already know I have various antibodies including RNP, ANCA and parietal cell antibodies. I also have the antibodies associated with Hashimoto's but that is being treated. Urea, uric acid, ferritin, B12, ESR. ALT and Gamma GT were all high. I have an appointment with my GP but it's not for another couple of weeks.

Some GPs, mine included, use the NICE guidelines not to treat and often work below the guidelines but I am going to push a lot harder this time even though at times I feel I am hitting a brick wall.

Thanks for listening to me. It has helped get things clear in my head.

[mauschen in reply to angedogs]

Hi, granny56 here using a different device,

Here is a link to the 2010 heart failure guidelines and evidence on medications, the 2018 guidelines update is still in draft stages nice.org.uk/guidance/cg108/...

Ironically, it set out the importance of honesty, communication, launguage used and working with the patients to plan individual care.

Like me, you will not know whether symptoms like tiredness comes from HF, NAFLD, Hashimoto’s or hypothyroidism . If I had to wait for doctors, I’d be pushing up the daisies by now.

Are you a member of the thyroid group on healthUnlocked? Here you will find fabulous information on how best to handle your thyroid conditions. For example getting the balance right, addressing vitamin and mineral deficiencies, how best to take your tablets and understand your blood tests. Take a look on the pernicious anaemia group for information on B12 whether high or low.

Have you thought of asking for an immunology referal?

If you write down all the information you have, you can take it with you to all doctors. It gives you a negotiating tool to state for example that this was the result of antibody tests, what is the plan, monitoring... if so when, action ... if so what e.g. referal.

I know it’s difficult because you might suffer from brain fog which makes concentration difficult but your body is giving off signal that it’s not too happy ... you need some good medical help in my opinion.

I often think that some researchers are only looking for a punchline, they are not always concerned with how multiple illness affects you as the individual... sad isn’t it.

[angedogs in reply to mauschen]

You are right, I do suffer from brain fog and more recently low mood/depression.

I recently joined the thyroid group on Health Unlocked but I have been a member of a wonderful thyroid group on facebook for the last two years which is how I found out about vitamin deficiencies and getting everything right. I was on Levo for a year before I realised it wasn't working for me and went on to NDT which for me is a lot more effective.

I have looked for information on B12 including on the Pernicious Anaemia site and apart from reading that high levels of B12 a sign of a blood disorder or that B12 is not being absorbed into cells I can't find much else. I told my GP this but he is obviously not very informed on it as he told me if it is showing in my blood test then it must be being used. He is wrong, of course, and we ended up arguing over it but he wouldn't budge. I am going to bring it up again when I see him and will take written evidence this time.

The heart failure guidelines are quite comprehensive and I haven't seen them before so I will have a good read of them.

No I haven't thought of asking for an immunology referral. I wrongly thought it would be a haematology referral and I was going to ask for one but I will ask for an immunology one now. I am already waiting to see a rheumatologist due to pain in my muscles and joints practically all over my body.

I will put together a list of everything to take with me for any appointments I go to. I already do one relevant to each appointment but I realise now I need to cover everything as it is probably all connected in some way.

Thank you so much, mauschen, for the time and effort you have put into helping me. It is much appreciated.

[mauschen]

You are very welcome, that’s what the forum is all about ... supporting one another.

Have a look at this link mayomedicallaboratories.com...

It gives a very simple explanation of increased and decreased B12. At the moment I don’t think you should look any deeper because you will only end up worrying perhaps needlessly.

You already know that you have liver disease, your liver function is abnormal and inflammatory factors increased, so your liver might be the culprit for increased B12?

You have an autoimmune condition Hashimoto so it’s not surprising that you have other antibodies of concern, check this link out for further explanation.

patient.info/doctor/plasma-...

[angedogs in reply to mauschen]

Both links are very helpful.

You are right about not looking any deeper because I have already been worrying about it. I will wait until my GP appointment and take in that list. I am glad I booked a double appointment because I think I am definitely going to need it.

Thanks again for all your help.

[mauschen in reply to angedogs]

Good luck 💐

[angedogs in reply to mauschen]

Thanks maushcen. I will post on here once I get the official results from the Hepatologist.