Recent diagnosis of Hep C

OK.. three weeks ago was diagnosed with Hepatitis C which i could have contracted from a blood transfusion 50 years ago or a brief period of drug use 40 years ago. My ALT level has been 75 for some years but now reads 92 (I think it is ALT anyway), Had ultrasound when reading was 75 but no hep C blood test, liver was fine. Had another ultrasound 3 weeks ago and was told some evidence of fatty liver and also cysts on liver and left kidney but i believe these are nothing to worry about. I have been overweight for at least a decade so this could account for evidence of fatty liver but from what i have read hep c can also cause this. Have now been referred to specialist.. My main symptoms are tiredness ranging from general fatigue to complete exhaustion, brain fog, pain to liver & spleen area, aching joints, weakness to leg muscles, blurred vision which the first time was quite scary as i could hardly see, and occasional breathlessness.. Most of these symptoms come and go though the tiredness is more constant. I have changed my diet which i believe has helped along with an intolerance to foods i used to eat (cheese, chocolate, pastry, cakes) so that's good.. I must admit i'm a bit freaked out with it all as it was so out of the blue. I not only stopped drugging all those years ago but haven't drank for nearly twenty years.. Can anyone give me an idea of what i can expect from the NHS - i understand treatment is rationed so will i have to wait until i'm really poorly to get treatment?

My sister suggested i have a private consultation to include a fibroscan which i could do though it would mean going into debt and i definitely couldn't afford to go private for treatment.. Your thought would be most welcome..:)

17 Replies

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  • I cannot imagine anyone would qualify for treatment before you. 40 years is the length of time it takes to truly compromise the health of the liver. I was treated 2004 for a year, no success but I was too ill to be treated again until the new drugs were created. I was cured at the age of 62 but then developed liver cancer so now I fight that. I am turning 65 in December. I had hep c 30 years without knowing it. You seem to be doing all the right things, you made good changes. I cycled 20 miles today. I am often in bed a few days out of every week. I wish you the best.

  • good news catfishjumpin im so pleased to hear that your still cycling as i do know just how much that means to you... all the best .love grace xoxo.💞

  • Fantastic that you have managed to cycle, any time out and about, away from your own four walls is restorative...way to go :)

  • Very nice. Thank you.

  • if your in the uk treatment is free. its great that you have changed your diet as it does help so very much. especially if you have fatty liver as you say you have. i also have it or did the last time they looked i have since changed my diet. i had hep c and had it for years before i ever knew at least 20 odd years. iv been through the treatment and cleared it about 10 years ago. since then though i'v had my gallbladder removed. dont know if that was anything to do with my liver. i was also told that i had a grossly fibrotic liver. i dont know what use a private consultation would be or a fibro scan as your doing all you can anyway by changing your diet and hopefull you will be put on the waiting list for treatment. im not sure that they wait until your really poorly until they give you the treatment. however its ten years since i got mine i was very ill but my friend had it and she did not have any symptoms at all. she only got the test because she knew she may have contracted it many years ago like myself. im sure there will be others along when they see your post and they will be more up to date with how the system works but im sure the only qualification for treatment is the virus its self. surely.??? however i do wish you all the best and i rememeber all those aching joints. i still get them but its not the same as when i had hep c. mind you i had many secondary illness. there are lots of people who did not clear the virus 10 years ago who are now clearing it with this new treatment out. so im sure you will do very well and get better. im not sure if the virus actually causes fatty liver but i do know that the diet can do this. and i was told that geno type 3 people were more susceptible to fatty liver. im pretty sure its more about what we eat though all the best. love grace xoxo 🌻

  • hiya...sorry to hear about your diagnosis...I too have had hep c for a long long time, not long finished treatment so fingers crossed its gone but just wanted to mention to check out the skipton fund for a gratis payment as you may of been contaminated from a transfusion!!

  • would they not argue it could have been from a brief period of drug experimentation?

  • If it involves paying out money, then argue they will. The routine screening of blood products only widely began in 1985 I believe, after various blood born diseases became more of a public concern. H.I.V for example, was found in infected blood routinely donated by U.S. prisoners as a way of supplementing their incomes. Hence the need for screening, which we then followed suit. I believe in the U.K the screening programme began in 1991 but please check. Transfusion or drugs, given the time scale you will possibly never know.

  • probably....but if you can get proof that you had a transfusion you should be awarded it without any problem whatsoever regardless to your other risk factors, you need hospital notes or gp records, something black & white stating you had a transfusion, or if a someone took a photo of you in hospital whilst you were getting the treatment...if you've got any of that you're fine! Ask your gp if theres anything on file, ask for copies of your records from that period and any blood test results from 'after' your transfusion, try not to mention its for skipton...give it a go, you've nothing to loose! I think I got infected from a blood transfusion too but when I tried to access all my medical records (my blood was monitored from the age of 7!) all my notes from before my 2014 hep c diagnosis have 'vanished' ....been mislaid, lost....shredded (more likely!) ...but defo look into it...the hep c trust folk will be able to advise you more. Good luck!

  • The Hep C trust offer very good advice particularly regarding to treatment waiting times in your area ( you don,t mention this). As grace says it is free in the U.K and as I understand, at the moment everyone is treated in Scotland immediately upon diagnosis. The intention is to treat everyone at the point of diagnosis in England to be rolled out over the next year along with phasing out the old style regime of interferon based treatments. The newer drugs (Which you,re more likely to be offered if you already have liver issues for example) are much easier on the system. The Hep C trust are the best people to advise you so give them a ring while you wait for the specialist who should arrange any scans needed. You shouldn,t need anything done privately. I know it,s hard and we all do it.....But don,t worry!. anne x P.s You could also ask your doctor to refer you to a dietician if you,re interested.

  • just want to thank you all for your replies.. It helps a lot to know there are people out there who can relate.. :)

  • Barban we have similar stories I suggest you see a gastro Dr and tell him you want Harvoni it is a miracle drug it will kill the virus... then continue to get assessment of Liver Damage from a Hepatologist.. A good Mri of the abdomen will help to see if you have any tumors on your liver and some Dr will do a biopsy you need to find how damaged your liver is it can cause acites, portal hypertension, and encelopathy which are affects of liver damage there are some herbs that are very helpful in your condition Licorice root,milk thistle and Buplerum to name a few.. It could be helpful to do a liver cleanse also.. but most important is the havoroni right now it has hardly any side affects and it will kill the virus in 3 months in most cases Good Luck and Take Care Mike

  • Hi all,

    Regarding the above reply suggesting supplements and flushes, please see below, Barbann26 there is a seperate message for you at the bottom of my post!

    The British Liver Trust does not recommend the use of any homeopathic or herbal remedies for those with any liver problems as these have to be processed by the liver and can actually damage the liver and lead to severe illness.

    More research needs to be done on the use and safety of such remedies and therapies.

    Homeopathic remedies are unregulated in the UK and concentrations of active ingredients vary by brand purchased. If you are considering using complementary or alternative remedies &/or therapies please always discuss this with your liver doctor first.

    Additionally, we advise against the use of liver detox and flushes as they have not been clinically proven to be of benefit, and some may be dangerous for people with liver disease. Fat cannot be simply ‘flushed out’ of the liver or kidneys.

    If you are considering any form of detox program it is essential to always check with your GP or liver specialist first.

    Barbann26, If you would like to discuss any concerns you have regarding your diagnosis please do call The British Liver Trust helpline on 0800 652 7330. Additionally, our website has loads of useful information you may wish to download and read, here is the link to our homepage;

    britishlivertrust.org.uk/

    Very best wishes to you,

    Rebecca

  • I was unaware of your policy..... just trying to help .... I am not suggesting a liver detox even in good health they are difficult to handle... In the US your treatment is a learning process supplemented by insurance with co-pays there is a lot to learn about having Liver problems I am using my own experiences with the intent to share some things that help

  • very helpfull.

  • It is a shock to find out so late you have HCV...especially as your lifestyle habits sound good. Unfortunately, HCV can lurk undiagnosed for years. You may go over and over how you contracted HCV, but it has been in general population for so long in people such as you and many others undiagnosed it hard to determine how you got it in first place.

    Your GP should refer you to a liver specialist, if he hasn't already, who will further advise you on necessary tests, such as Fibroscan, full blood tests including GGT, TSH, ALP and LFT (liver function test) to get complete picture on the state of your liver now after having HCV for possibly 40-50 years.

    . Sounds like you might have begun this process already. Make sure you ask for a Fibroscan to give you a further idea the stiffness of your liver. The ultrasound scan gives a picture of size (enlarged liver or not?) surface smoothness and also signs of fatty liver. My experience is you got to ask or you may never know ...and you are the patient and it is your right to know.

    Do not rely on your GP for answers regarding HCV...you should direct your questions at hepatitis nurses or the specialist (Digestive & Liver) and do not be shy to phone them and leave messages to be called back if you have direct questions regarding any tests results or any symptoms/concerns regarding your HCV. If you do not have their departmental phone number it is usually on the appointment sheet the NHS sends you in post or ask for a contact number when you see your liver specialist nurse.

    At the moment, only those patients with cirrhosis, end stage liver disease are being treated for their HCV...although NICE recommends every patient with diagnosed HCV be treated eventually. Find out what genotype you are as this will directly determine which treatment you receive as well.

    A good diet and lifestyle habits will definitely improve any symptoms you may have regarding your HCV and fatty liver(which type is it?) no matter how advanced the fibrosis is within the liver. The liver has 500 functions in the body, so the less you poison it with a bad diet and other toxic contaminants the better. The Hepatitis C Trust (google it) is a plethora of information for all things related to HCV.

    I have lived with my HCV genotype 1b for nearly 40 years. I am now fully cured after taking Harvoni for 3 months (no ribivarin...my choice) my Fibroscan score or reading was 11.5 borderline cirrhosis. My GGT were raised as was my ALP and AST/ALT all raised well above normal. Now they are absolutely normal and remain so 6 months after treatment.. My liver is definitely healing as my Fibroscan reading was 8.9 more in F1/2 range well out of cirrhotic range. I am eat healthily(some cake and biscuits, ha!), visit gym and hike 2-5 miles alternately daily and do not nor ever will drink alcohol...

    Wish you well...

  • FATTY LIVER - NAFL

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