AM FEELING SLIGHTLY SCARED

I had some bloods taken on Wed. this week and this morning I received a telephone call from my GP advising that there is an issue regarding my ALT liver function which is extremely high. She asked me to go to my local hospital for further tests which I have done. She also mentioned a referral for an urgent MRI liver scan. I have to say I find this a bit ironic as I am teetotal. What could it be, in general, apart from Tremor which is a nightmare for me, I feel fairly healthy, not jaundiced although I did have an episode about a month ago where I felt it necessary to call 111 as I thought I was suffering from appendicitis. I was constipated for a week and couldn't keep any food down, I have lost about 2 stone, probably too quickly. Any words of encouragement most gratefully received. By the way, I am having a PIP assessment on Monday in relation to the tremor, if anybody feels it appropriate, see if you can sniff out my posts about that. This site is amazing.

22 Replies

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  • Hi Carpe_ diem , please try not to worry, it's great to hear that at least your doctor and hospital are keeping a watch on you! Just go to the hospital, I can imagine how your feeling; you don't have to be a drinker of alcohol to have liver trouble. There are lots of things that can cause elevated reading .

    I am just over 9yrs with cirrhosis, that was due to alcohol. I have only relapsed once , I maintain as much of a healthy diet as I can and I always work with my liver consultant 😊. I can't stand endoscpies but I have no choice to have one done in 2 weeks but it's a case of having to ..just go to the hospital, the quicker the better. Let us know how you get on best wishes Linda

  • I was diagnosed 5 yrs ago with cirrhosis don't know how many yrs i had it i didn't realize i had it. I have diabetes since 2004 so that is where i got cirrhosis from cause i don't drink either. There are many ways to get it. Whenever i have blood work done it always comes back everything is in normal range even though i know i have cirrhosis go figure. When someone tells me their liver is fine cause their blood work comes back normal i tell them mine still comes back normal so you can't go always by your labs. I was shocked when i found out.

    Melinda

  • Carpe,

    I completely back up what Millie09 has just said.

    Try to keep positive, eat healthily and exercise even if its just a daily walk.

    As for the PIP assessment, make sure you are well prepared and have a witness with you, not just for support but to make sure you remember everything that is said. There have been a couple of posts on here of successful assessments and appeals, so hopefully yours will go well for you.

    Try to remain positive and don't worry too much - take one day at a time and don't overthink what might be wrong. We all do it but it helps to not look up too many websites apart from the British Liver Trust, which is well researched and trustworthy.

    Any of the tests that might worry you, that's not a problem here you will find people who have had every test known to man (and woman) so you can always ask for advice / support about particular tests / procedures. Don't forget as well, there is Rebecca on the British Liver Trust helpline who can advise and inform.

    britishlivertrust.org.uk/fi...

    Take care,

    Jim and Lucy

  • unfortunately no one to go with me ho hum

  • Carpe,

    Sorry about you not having somebody to go with you. Where is it that you live ?

    Jim

  • Bournemouth. I have a list of questions one of which is whether a transcript would be available. My shorthand is not good enough sadly.

  • Hi Carpe , a lot of Dr.s will agree to you taping your appt. most mobile phones have this facility . Then you can go over it at will . There are over a hundred reasons why are son can get liver disease. They are discoverng more all the time too. Good for you , your list of questions will be invaluable . I always get written copies of all my tests, loads , ultrasounds, a copy of the consultants report on the appt .

  • You have the right to demand that the assessment be recorded and that you receive a copy of the recording.

    Also, and this may sound odd but is important, do not walk towards the building from the road or a car hiding the difficulty of your worst day - assessors can reject your application on that alone. Describe your worst day and ignore your dignity when explaining or it could cost you.

    I wish I had know about this sooner I could have recommended some advocates who could have gone with you and if necessary talk on your behalf.

    Stay positive and know you are entitled to thus.

    Rita

  • Take legalon plus vitamin e. One per day. They work wonders to the liver. I have been doing that for 5 years. Do a fibro scan. Tell me the median reading for the stiffness of the liver

  • thank you everybody, one other thing not sure if this is the appropriate place to raise it, however, my bowel has always been sluggish and in the past I have suffered from urinary and faecal incontinence. For the last 2 weeks or so I have been drinking hot water and lemon as my first drink of the day. I have noticed a moderate improvement in my movements shall we say. However, my stools have now changed colour and have become a sort of pale mustard colour, hope this makes sense. Looking into this further it could mean liver problems, gall bladder problems or am I reading too much into things? Sometimes the internet can be a dangerous place for the uninitiated even though I was a medical secretary for several years it's not quite the same.

  • If your stools are pale it can indicate that your bilirubin is elevated. If you can see your gp this week for another blood test. Hot water and lemon is good for you it kick starts your organs in the morning, I wouldn't recommend taking any vitamins until you have been diagnosed as if you do have liver problems we are advised not to take any, hope you get some answers soon x

  • Never taken any vitamins was wondering about turmeric any views?

  • Turmeric I had and have it's a wonderful spice, especially good for an anti inflammatory and my consultant never had any problems with me having it

  • Carpe_Diem, it is good to have a doctor who is staying on top of your condition, please, follow their advice.

    My husband's liver doc said that what the world at large does not understand is that most liver disease is not caused by alcohol. My husband's was, however, one of my Grandmother's died of non-alcoholic cirrhosis, so I have been aware of this for a long, long time.

    Too bad the medical community and those who could have been getting that info out over the many decades, have not felt the need to mitigate the stigma of liver disease.

    Best of luck to you.

  • Somewhat belatedly have started to keep a diary of events. Last vomited just now 3am and before that Tuesday. Lamb shanks and jersey royals. Have worked out how to record using iPhone feeling a bit wretched onwards and upwards thanks everyone. Need to try and get some sleep birds just started singing.

  • You have to ask for permission to record in advance they are going to refuse you recording today. And don't panic about the throwing up it's not constant and if you feel ok then even better , but if your unsure again that's what your gp is for x. Good luck today

  • Hi

    How did you go on today? Please take care. Lots of love Lynne xxxx

  • Morning all,

    assessment went reasonably well I thought, the assessor was an Occupational Therapist, seemed very pleasant or was she playing "good cop". I made a point of enquiring. However I now have to wait 4 - 8 weeks for their decision. I completely forgot to ask for a transcript but I guess that can follow. Sorry if I am repeating myself but I have various appointments every day this week, today I have to sign on, Wed. is the falls clinic/Geriatric. Friday is ENT. The Doc. has received the results of the last lot of bloods but when I spoke to the surgery yesterday, they had not been read so watch this space.

    However, possibly the best bit of news to date is my scan is booked for this Saturday at 12.20 so I hope to have a better idea of what is going on after that. It was an urgent request so I think that at last I am getting the attention everybody is entitled to.

    Had a blissful uninterrupted night's sleep and no vomiting, still feel fine which makes it all a bit of a mystery.

    More to follow and as always thanks so much.

  • Good luck with your scan today . Let us know how it goes.

  • thank you, appointment 12.20 am quite hungry but will be making up for that later!

  • Arrived a bit early for ultrasound and the person before me hadn't arrived so I got seen straightaway which was nice. Scanned back, left and right sides, front and sitting up. Rather annoyingly, I couldn't see the screen properly. The pictures will be going off to my GP so I guess I've got to keep my powder dry for now, I'll live...

  • just had a conversation with Doctor. I've got gallstones nothing more sinister than that. Doc is going to keep a close eye on things and more bloods to be taken on 30 June. I feel somewhat relieved it's nothing worse or am I being over confident?

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