I'm new to all this and was wondering if anyone had any advice to try and ease my mind. I have been quite ill for a few months (bouts of diarrhoea, sickness, stomach pain and bloating and generally feeling crappy and lethargic). 3 weeks ago I ended up in excruciating pain just under my ribs all the way through to my back (which hasn't gone away, just controlled with strong tramadol). I have had umpteen bloods done and my ALT came back at 191 and my GGT 145. My stomach is constantly extended, I'm tired all the time, still have the pain, loss of appetite (when I do eat it's very little) and itchy skin all over (with a rash). I dont drink, I dont smoke, since july I have been on a low carb high protein diet and weight lifting which has made me go from a size 18 in clothes to a 12 and for the past month I have been on a vegan diet. I cant eat any healthier than I do and I dont drink anyways so no alcohol to cut out and was just worried about the health/state of my liver. I'm still waiting on a scan and endoscopy to see what's what. Is this something I should be concerned about?
I'm so sorry you are feeling so rough. Could you get in touch with your consultant's secretary to see if she can bring any appointments forward as you can't go on like this. Have you had a fibroscan cos maybe that should be your next port of call. Make an emergency appointment with your GP tomorrow or go to a and e. I'm not trying to scare you but I do think your GP could push things for you. It's so hard when you feel like this isn't it? I'm in pain 24/7 due to this and many other conditions as well. Are you sleeping, u get an hr or less. You can pm me anytime day or night. Please let me know how you get on. Lots and lots of love and hugs Lynne
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Hi Lynn,
Thank you so much for replying to me and giving me your advice and sharing your experience with me. I am going to call doctors and hospital today to see if I can get things moved on a little as all the pain flared up last night and is raging this morning. It is horrible feeling like this all day every day and with no end in sight it gets quite depressing. I suffer from fibromyalgia too, which is always a daily struggle at the best of times, so to add all this on is taking its toll. I'm not sleeping as good anymore as I'm constantly up for the toilet (4 times last night) or the pain wakes me but I do try and get decent sleep as I need that to help tackle the fibromyalgia.
Thank you for your offer of PM you, I will defo keep that in mind. I am defo going to push for things to come a little quicker as I am starting to get a little worried the longer this all goes on for.
Love and hugs right back at you. Alison.
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Hi
How did you get in today re appointments? How are you feeling tonight,? Love and hugs Lynne xxxx
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Hi Lynn, I tried doctor and hospital yesterday with regards to pushing my scan forward but no joy. Had to go back to docs today and saw my usual doctor who says she will call hospital and try to get it in sooner, so fingers crossed she manages to get it sooner for me. I got some more results today which were all clear so it looks like it's just my liver that's playing up at the moment (still waiting on endoscope to see if theres anything with my stomach).
Thank you very much for messaging me and asking me how things went (sorry I'm late in replying but I was out cold early last night and busy with the kids today). Hope all is well with you today. Love and hugs back at you. Alison xx
Hi. Your story and results are very similar to mine and I was diagnosed with non alcoholic fatty liver disease. Around 14 years. So was put on meds to control it. Well done on losing the weight and changing your diet. One thing to ask to be checked for as you mention stomach and diarrhoea is bile acid malabsorption. I got the odd bout of diarrhoea and the last few years it got worse. Had a sehcat scan and now on binder meds. I was misdiagnosed for years being told it was what I ate or IBS. This year I cut down on meat and most meals are vegan and I’ve seen an improvement. But years of misdiagnosis has meant I haven’t absorbed certain vitamins properly and was left severely deficient in B12, D, iron, potassium and I can’t maintain a “good cholesterol” level - although my overall is now fine due to meds. I have to take supplements for all. For more info look at the bad-uk.org website.
Yeah it's something j have been thinking about asking them to check (bile absorption or blocked bile duct). They keep saying the pain in my back isnt associated with the liver but I have read that the liver can effect you bile duct which can give you pain in your back. I will keep pushing them till i get answers anyways as I'm too young and healthy to be feeling like this every day.
Hopefully you manage to get on top of all the deficiencies and cholesterol. I know most of you on here have been battling these things for years, so hats off to you all for that I'm only at the beginning, from what I've seen a long road, so I can only imagine how years of this can make you feel.
Thank you for the reply and sharing your advice and experience with me. Its appreciated.
Sorry you are feeling so rotten. My son has Crohn's disease and he started not absorbing bike properly, he is now on meds for this which he takes an hour before his meds , the meds were available to start with, then they couldn't get hold of them, luckily they managed to get some so now when he picks his script up they order the next one there and then. Sorry I went off on a but off on a bit if a tangent?! Take care Lynne
Dear Alison
Firstly welcome to this wonderful forum of lovely friendly people who can give you advice based on there own experiences. We can be serious when required, funny and definately be at your side when you feel like your under stress and want to scream from the roof tops!
If you read some of the previous messages you will find that we do have a bit of banter between each other when times are tough!
Well may I say your blood results, weight loss etc sounds like your explaining myself.... also twin like in your achievements except I've already had MRI CT's Fibroscan Ultra scans endoscopy plus monthly blood tests for almost 2 years and my consultant is still struggling to find the cause of my autoimmune diseases! The next step for me is a liver biopsy but to do this my GGT has to be raised into a high level again and presently it's lowered but still abnormal!
All I can suggest is please try not to stress and my fingers are crossed that you dont have to wait to long to get your scan/results .
Finally its best to keep a daily log of all your symptoms for discussion with your consultant as we all forget various things on the day. In the meantime keep your excellent achievements up as you've done really well! I've lost 3 stone with a further 1 to go !
If you want to chat further you can always PM me due to similar symptoms and achievements,!
All the best Alison
Love Trish/Shropshirelass x
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Hi Trish, Thank you for the lovely warm welcome and thank you for taking your time to reply to me with your advice and experience. It is all very much appreciated. I certainly like a bit of banter in my life so I'm sure I will fit in nicely lol.
I'm glad I've lost the weight and started eating healthy but to have all this flare up after the hard works done is a bit of a downer. I thought losing weight and eating healthier would improve things not make them worse. I got tests done last year and the only thing that came back was my ALT was slightly raised so they told me to improve my diet and lose weight to stop fatty liver disease, so I did but it clearly hasn't helped. I felt healthier and better when I was heavier and eating lots of crap lol. Joking aside though, it's all just a little worrying and concerning for me just now. Not sure what's going on and by the looks of what I've read in other posts i am just at the start of a very long journey, so a while to go before I get answers.
Very well done to you too for losing all that weight and pushing forward to the next milestone. That is an incredible achievement so very well done.
Thank you for taking the time to reply to me. Kind regards. Alison.
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Hi Alison
Snap again! I too had hardly any symptoms at all before losing the weight just the odd dizzy spell hence going to see my GP. I must admit over the last 6 months I now find that even the odd treat is NOT acceptable to my body anymore as it will knock me off my feet within 15 to 30 minutes . I'm fine on chicken salmon and lean crispy bacon front. Curries to as long as there's hardly any oil or cream!
May I ask what age you are ? I'm a fairly fit 67 who's about to take a sky dive in 3 weeks time for charity. So far raised almost £2300 for the British Liver Trust and QE Hospital in Birmingham. I do try to go to the gym daily but due to my busy life which is about to get even busier I find it a struggle to go every day!
I'm also.learning to play the guitar and this morning my tutor texted to say he now has a one to one opening on a Tuesday night which is going to be amazing as I've been in a mixed class!
Anyway on the health front try and hang on and don't let the wee unknown bug..r win and drag you down!
Oh my Endoscopy did highlight an inflammed Esophagus which I now have meds for! I'm being monitored for Sarcoid but at one point my consultant was sure I had possibly extremly early stages of PBC but nothing confirmedvl as yet!
Oh well bye for now!
Love Trish xxx
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Yeah I am getting to that stage where the slightest wee treat is enough to set me back. The only pleasure I have really is my odd bit of chocolate but it's looking like I might need to say bye to that aswell! I am only 37 with 4 kids and work full time in a busy nursery so I'm always on the go and very seldom do I get to relax lol.
Wow, well done you for taking the jump! I admire people that do that as I know I certainly couldn't. I would love to though, my heart would say yes go for it! But my head would be telling me off for jumping out of a perfectly good working plane lol. Good luck with your jump though...you are doing it for a great cause and you have certainly raised a lot of money so far so well done you. Oh and well done for taking up guitar lessons...again something that allows you time to yourself and build your confidence. Hope the one to one brings you on even more than the group session has.
I will take each day as it come just now (unfortunately theres nothing else really to do just now). I was hoping for a quick diagnosis and help but it looks like I'm in for a bit of a ride first so I will just need to get on with things in the mean time.
Take care. Let us know how your sky diving goes...sounds exciting. Alison.
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Hi Alison
Ih my you have your hands full with 4 young children and a full time job too! I'm guessing you hardly get any time for yourself...
Hopefully you GP's one of the good ones who'll get to the bottom of your issues as soon as possible as your very young to be suffering with the itchy skin and the horrid tiredness!
Re my skydive I'll update everyone
on my progress a week before my dive! Fingers crossed for good weather as it's been cancelled twice.
Bye for now and please take care xxx
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Hi Trish
You are such an inspiration to us all. I love and admire you for doing the sky dive, I think you are brave and potty all rolled into one 😂 seriously though, you don't like heights and are still doing it which I think is truly amazing. Oh well, night night my friend. Sweet dreams. All my love and hugs Lynne xxxx
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Still have a raised GGT
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High ALT and GGT (rarely drink alcohol)
I am tired of high GGT, ALT and ALP
Very high GGT ALP AST ALT
