Breathing difficulties liver

[Liberty82]

Hi, I don't want to do a massive post about how I've come to be here, but I'm struggling with my symptoms. They are sweating, chills, feverish - strange one it almost feels like the fever is coming from my liver area in my back. Liver sensitive to touch around the side, Upper right quadrant pain that goes round to my back like a stabbing pain, itching, pale oily stools, cramps, bile taste in mouth. In the last few months doing exercises in the gym I've noticed if I lay on my back raising my knees towards my chin that I couldn't get a breath properly. These exercises were never a problem before. I just stopped doing them but this morning I woke up and had the same sensation all day into the afternoon that I couldn't get a full breath. It eased off as the day went on but its horrible. I honestly feel like there is something new every day now. I doubt it could be ascites as my last ultrasound was at Xmas and they didn't see any fluid plus my blood tests are normal but if I'm being honest I don't know enough about it and I don't think ultrasounds are particularly reliable with this kind of thing but I know ascites means you're dscompensated and from what I've learnt over the last few years I'd certainly know all about it of I was at that stage. Any ideas what it could be? As a side note as soon as my liver issues started I was diagnosed with asthma, I believe its some how linked but its kept well under control with my preventive inhaler so I get no bother from it and my symptoms were never breathlessness it was coughing up stuff and crackling in my lungs. Sorry, I didn't mean for this post to be as long as it is x

[carefull1]

Hi liberty82, what was your ELF score?

[Liberty82 in reply to carefull1]

I still haven't had my results Carefull, they should have been due on Tuesday past at the latest but they gave me some rubbish about a 'technical clitch' as to why I haven't had them yet. So they had me demented waiting for the past 4 weeks checking every day to see if they are back. The test was done by bluecrest health screening as there would be no chance of me being able to get my gp to refer me to a hepatoligist. I'm hoping I don't have to wait much longer for them. I'm also seeing my gp again next month and say if they won't refer me through the NHS I want a letter for a private referral. X

[carefull1 in reply to Liberty82]

ELF test is reliable. Try to chase them up. I had mine lost and they had to do them again. Gp are reluctant to do them because they are expensive. Apart from that just watch what you eat/drink. There not much anyone can do. One thing I have learnt with liver is that it quickly gets bad after recovering if you are not careful

[Liberty82 in reply to carefull1]

Hi careful, I got my results for my ELF test today and it was 7.95 which I believe is the early stages of moderate fibrosis. They recommend I test again in a year which I will. At the moment I'm just going to focus on being as healthy as I can as I know I can make improvements in that area even though I no longer drink x

[carmik]

You need a medical appraisal A.SAP. Always better to be safe than sorry. Sounds like infection. Also itching and pale oily stools are symptoms of liver malfunction. My hubbies blood tests we mostly normal and yet he had late stage cirrhosis. It was due to Alpha1 Antitrypsin Deficiency which causes liver and lung problems. Therefore you need to get checked urgently.

Good Luck

[Liberty82 in reply to carmik]

I've been back and forth to my gp numerous times. I had to really push for a referral for an ultrasound which was normal but if they won't refer me through the NHS I'll have to go private and I've really no clue how expensive that will be. X

[Laura009 in reply to Liberty82]

If you decide to go private, you will have to have a consultation first which costs around £250. At the consultation they will check you over, note your symtoms and tell you what you require as regards tests and treatments and the costs. If you decide to go ahead, you will get an appointment within days. My husband urgently needed fluid draining from a knee, a steroid injection and xrays to determine the cause of his severe pain and near paralysis. This cost an additional £650 and he was then back in the NHS system where he is receiving excellent on going care and treatment for his condition.

[Laura009 in reply to Liberty82]

PS that was with spire

[Hidden in reply to Laura009]

Feck Private Hospital would have a field day if there is ongoing investigations for diagnosis.

Didn't inspire me or my wife the patient. The Gastro surgery should not have been done according to NICE. Pure greed in my eyes.

It didn't go well, she had to return for a quick fix ?

The NHS then had to pick up the pieces, couple more corrective surgeries to repair numerous complications.

It remains unresolved since 2016 & still under review by local NHS Consultant, but he's reluctant to go back in again.

Thousands of pounds wasted.

[Laura009 in reply to Hidden]

Agreed.... but due to the nature of his condition, we now know if we had waited the 13 weeks for that initial nhs consultation, Ray would have very likely died as PMR attacks the muscles, including the heart and lungs, already under performing due to athsma. However we were encouraged to learn that the consultant he saw at Spire is also the same one he is under at the N&N, which incidently is very often the case. It's between GP appointments and referal where the NHS needs great improvement, not helped of course by the constant over crowding of our little island.

[kuda123]

Hi liberty82

I want to have a liver biopsy but my hepa is still not ready for it ...I had multiple test to rule out cirrhosis ...Each and every test is clear ...Even going through NICE guidelines to diagnose alcoholic liver disease which says to go for a fibroscan test to diagnose cirrhosis in people with alcoholic liver disease .I am still clear and not in a range of cirrhosis .I had a concern for false negative which i told to my hepatologist regarding fibroscan accuracy .He told people who have scarring and not fibrosis actually have a false negative value....scarring is just like a skin burn ...it goes off like a skin burn after some years if you maintain a healthy lifestyle

[Liberty82 in reply to kuda123]

Thanks for that info Kuda, its definitely good to have a better knowledge about the difference between scarring and fibrosis. I got my ELF score back today, it was 7.95 which I believe puts me in the bracket for moderate fibrosis. Have you had the test done? X

[kuda123]

I will definitely have one...but according to NICE guidelines for detection of alcoholic related liver disease they recommend fibroscan/liver multiscan .Did you asked your hepatologist regarding your increased ELF score?

[Liberty82]

I havent seen a hepatoligist. My GP was even reluctant to send me for an ultrasound, in fact the radiologist initially rejected me going on my blood test results, they werent interested in my symptoms, it all seemed very old school going off LFTs alone. I got the ultrasound at Xmas just past which was normal. I'd already paid for a private one the year before which was normal too. I had my first fibroscan through the BLT roadshow in May last year which was 5.4, then I paid for a private one in Jan which was 3.3. I paid for a private ELF test through bluecrest health screening and this is the first time that anything is outside the normal range. I'm not even 100% sure what it means and whether I should worry about it. I know my symptoms are real so it's very confusing. I'm assuming the life style changes I've made have helped my liver but my symptoms are getting worse so I'm really not sure what's going on. X

[Jojochr]

Hi Liberty82, I was hopfully to get a scan done on the road show but it says that they can not scan people who are already under the care of a professional. I have had bloods done at gp that point to nafld but have not been offered further treatment. Do you think I could get one at the road show?

[Liberty82]

Yes, I'd had bloods and a private ultrasound when I had my fibroscan at the roadshow, I think what they mean is if you are under the care of a hepatoligist, they don't ask anyway but I did mention I'd had bloods done before to the hep doing the scan. I'd definitely recommend going to the roadshow for piece of mind x