Advice

[Mctd]

In December I wasn't feeling great and ended upnin A n E with high blood pressure and raised enzymes. I later went to my and had ultra sound scan and some blood tests performed. The blood tests came back normal but the scan showed fatty liver. I had a brief telephone conversation with my GP and he advised lifestyles changes and I have since cut out alcohol completely.

The last few months haven't been great as I also have autoimmune issues and developed a whooping type cough around 3 months ago which is still a problem. At present I am waiting for an endoscopy and have an appointment with ENT as they are unsure as to what is causing it and, feel that it is not due to my autoimmune disease.

This last two weeks my acid reflux has been a nightmare. I saw a gastroenterology consultant last week and he told me to double my dose of lansoprazole in the short term and use gaviscon when I need to. This last couple of days I have noticed my urine is quite yellow/orange and my bowel movements are very light, ranging from pale yellow to white. I'm still suffering with nausea and lost half a stone this last 2/3 weeks. I'm now starting to panic. I called my GP this morning and cant get an appointment for 7 days. I would appreciate your thoughts as my imagination is now running wild. Am I over reacting?

[BritishLiverTrust1 Partner British Liver Trust]

HI Mctd

If your symptoms are causing you to panic, and you can't get a same day appointment at your GP, we suggest calling 111 in the first instance.

Best wishes

British Liver Trust

[Trust78]

Hi I'm sorry to read about your situation as I have been down that path and its still ongoing, I have chronic chiroses and have never been a drinker but last year on my 60th birthday everything seemed to go wrong. Like you and many others I had diagnostic imaging, MRI scans, dexa scans, endoscopy's and 4 trips to A&E and my liver function was ok but my bial ducts were blocked so I had them trawled. I had some relief for a month and could feel the pain coming back so my gp started looking at possible ulcers and a hernia as I felt like I had a bowling ball in my lower stomach, I have been on omeprazole for months and they seem to help but caused me to get lumps under my nipple wich led to a mammogram but thankfully it was due to omeprazole side effects. Please don't worry about the endoscopy and I know its hard but try and stay positive as my mental health took a battering with so much going on but they can find out a lot more from this procedure so please don't worry have the sedation and it's all over in no time. Look after yourself as much as possible ie no fatty foods or alcohol and drink plenty of water. I hope everything goes well for you and if it helps I've had this problem for 37 years and I'm still hear so don't give up and my thoughts are with you.

[Mctd in reply to Trust78]

Thank-you so much for your reply. On the advice of the liver trust I called 111 and went to a walk in centre. They agreed that my urine had slight traces of blood in it, checked my scan results from February and didn't seem overly concerned. They suggested I had my liver bloods repeated and a scan on my pancreas, said they would put it in my notes and to contact my GP. I contacted my GP yesterday and, guess what, they didn't put it in my note's so the GP won't book them until they've seen me, next week. I was beside myself yesterday... I have little faith in my GP I feel they just fob you off. At the start of my autoimmune journey 5 years ago, they didn't want to know. I could barely get out of bed, was crippled with joint pain, headaches, sore mouth, was constantly cold, drye eyes and mouth, chronic fatigue and had tingling/itching all over my body. They kept telling me it was anxiety. Eventually a surgery nurse agreed to see me and she referred me to a neurologist suspecting MS. Fast forward it was MS and then went to see a rheumatologist, again privately. At the time I thought he'd saved my life, he diagnosed Undifferentiated connective tissue disease, secondary Fybromyalgia and Raynaurds. I was so relieved, as by this point, I thought I was going mad - he assured me I wasn't. I have continued to see him on the NHS for the last 2 years and last November I mentioned how ill I had been over the last couple of years with what the doctor called 'sinus' infections. Straight away he told me it was Sjogrens Syndrome and that the 'sinus' issues were the final piece of the jigsaw puzzle. He changed my meds and referred me to a Sjogrens consultant - guess what, he doesn't think it is! So I'm now in a position where Bupa and my GP have now been given a diagnosis that might not be correct! He suggested that some of my symptoms may be caused by Amitryptiline that the original consultant gave me for peripheral neuropathy. I pointed out that I had these symptoms before the meds but he didn't listen and has started all the testing over again. I also have a copy of the letter the second consultant sent to my GP and it is full of inaccuracies... I am so fed up and don't know who to believe or trust, to be honest, I feel like just going to sit in a corner and give up - non of them would notice. I just feel a nuisance. Yesterday I started itching all over, it's driving me mad, I can't stop scratching and my skin is raw. Is it neuropathy from Fybromyalgia or is it liver related? Who knows but I darent ask 😢. Sorry for the essay, but my mental health is really suffering at the moment and all the professionals seem to be too busy to really listen. Once again, thanks for replying x

[BritishLiverTrust11 Moderator in reply to Mctd]

Hello

We are sorry things are so challenging at the moment. If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Trust78 in reply to Mctd]

Wow it was like reading my own history of last year as I had the dry mouth that was sore like small ulcers,, my eyes felt like they had grit in them, the itching was unbearable and I couldn't sleep so it became 10 months of going to the gp and getting fobbed off at a time I honestly thought I was dying. Its so tiring the constant battle and no answers and like you I was told it was shogrins syndrome, my body felt like it was giving up and my mental health was and still is grim as I seem to have been put on the back burner once again and I have given up with my gp due to never seeing the same dr in 12 phone calls so when I listed my symptoms the response was we can only deal with one thing. I have gallstones but they don't want to remove my gallbladder due to my liver condition thankfully I'm stable at the moment but it can change overnight and I'm constantly tired and nauseous with swelling of my ankles and feel. Apart from my sister who also has my condition you are the first person who has had all the symptoms I had so I would like to keep in contact with you so I can keep you posted on what's going on. I had a scan recently and it was pretty much the same as 6 month prior so I'm back in the doldrums for another 6 months preying the pain doesn't come back as it was a living hell. I wish I could tell you something more positive I also lost 9kg in a month back in January and my bowels are terrible but I'm having to get on with it so please don't hesitate to contact me if you just want to talk. My thoughts are with you at this worrying time and I wish you health and happiness. Billy

[Mctd in reply to Trust78]

Yes, it would be good to keep in touch 😀. I think it's my bile ducts too (I need to keep off doctor google) but I guess I'm going to have to wait till next Monday. Something else we have in common is bowel issues- I have IBS and Diverticulitis to add insult to injury. My friend called in today and told me I looked well, I look like I have a tan - she knows I don't sit in the sun so was surprised, she didnt know what had been going on... I'm guessing jaundice, it makes sense.

Anyway, I can't do any more than I have to help myself and thankfully, my manager has told me not to worry about work and get things sorted out. I'm hoping my doctor will give me a sicknote till I get all my results, mentally and physically I'm not really in a fit state to walk into a classroom and teach all day.

I have asked to have my endoscopy under general anesthetic, so waiting for a few date - they needed to book a theatre so may delay it a week. I'm having it done privately and my insurance will cover it. I've also got ENT Saturday morning. I don't know what I'm going to do when my husband retires and we lose our medical cover! I doubt the NHS will be interested 🤔. Jean x

[Trust78 in reply to Mctd]

Also just normal antihistamine tablets stop the itching, I get them from aldi 45p a box but very helpful

[Trust78]

Cyclazin is good for feeling nauseous to, it's a travel sickness tablet.