Hello all. I am new to the forum, but not new to liver disease unfortunately. I've been living with AIH since 2006. I always thought it was relatively well controlled and I was plodding along nicely until I got to April/May of this year.
I began to break out in hives and did the usual things of checking for allergies, washing powder, clothing, food etc. Couldn't pin point it. They slowly got worse so I contacted my doctor in June who prescribed antihistamines.
Month later it was getting worse again, so I was sent for blood tests where it was discovered my platelets were 35, my bilirubin was high and my WBC, RBC and heamaglobin were all very low too.
To condense it all down, my GP stopped my medication as she said the Aza was the most likely cause, then I went backwards and forwards to the hospital from July to October to have bloods taken, getting progressively worse each time. I was referred to dermatology for the hives (given antihistamines) haematology for the platelets (whole host of bloods done, each worse than the last), neurology for the headaches (told it was migraines and given beta blockers) rheumatology for the joint pain (said it was nothing, needed to exercise more). All the while, my ALT was creeping upwards and platelets remained low. Not once was my liver checked, or was I seen in person other than having blood taken. All appointments were over the phone.
End of October I pushed for and had an ultrasound done, that showed an enlarged spleen (16cm), course liver and thickened oedematous gallbladder. Gastroenterology then requested a fibroscan where I got a score of 29.7!!
I've now been told I have severe cirrhosis and have been reffered to another hospital for them to take over my care as my hospital dont have enough knowledge on the condition. I've been told I should hear from them in a few months and to ring back if I dont hear! Gastro said I have about 3-5 years left on this liver, but need a biopsy to confirm.
So now its a waiting game. I'm unmedicated meaning I am getting worse every day, I'm tired, itchy, yellow, in pain, can barely eat and yet I'm just told to wait. To wait. To wait some more. I dont know how much longer I can wait, getting worse, before I cannot wait anymore.
Written by
MotherGothel
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Hi. That situation is bad enough to cope with never mind the apathetic reactions from the various hospitals departments. You sound as I was for thee first year after liver failure. I did not get any real help, just check ups as and when. Prayer and research started to change things for me. So forgive me, but a few questions if that’s okay.Are you on a fluid restriction?
Is there any oedema or ascites?
Have you been advised to eat a high calorie diet?
Are you advised to avoid certain drugs?
I will try to help as best I can, if you like pm me or mail me at
cammeag at
hotmail dot com.
I’m surprised as there’s a few real knowledgeable individuals on here, that there’s been no advice forthcoming. I know what everything you described feels like and it is not good. People wouldn’t treat dogs the way you’ve been treated. Take care
This is exactly how it went. I had a telephone appointment on the Friday morning, and bloods half an hour later. Gastro was 30 minutes late in ringing me, so by sheer luck, I was at the hospital when he rang me, and he asked me to go for a scan right then. I went over to his department had the scan, and was told I had a score of 29.7 meaning I had "severe cirrhosis". He then said he would refer me to another hospital as they would be able to carry out a biopsy, and if I didn't hear from them in the next few months, to ring his secretary. That was the end of the appointment! No advice, no recommendations just to wait for them to contact me. I have swollen ankles and a swollen abdomen. I have itchy skin, hair loss, weight loss (20kg), bleeding gums several times a day and frequent nose bleeds, I get up around 10 and usually need a nap late afternoon. I have headaches and a racing heartbeat (125 when resting). This has been ongoing since June.
I am horrified that if you described all these symptoms to your gastro consultant they haven't admitted you - at least to check out the swollen abdomen and feet issue as if you do have cirrhosis this could be fluid retention - ascites and oedema which is a medical emergency and needs treatment either with diuretics and/or a drain. Are you able to get a face to face appointment with your GP? I would push for one as this is urgent and you should be getting physically seen to assess your symptoms, with AIH you and potentially into the cirrhosis end of things you NEED to be on the treatment and be physically examined. Push for a face to face with your GP and they may even get you admitted to hospital for proper tests and treatment from there.
I can't get a telephone appointment at my GP surgery, let alone a F2F! I think because of my age (29) they automatically assume I'm too young for anything to be serious, and different departments aren't working together, and are each dealing with things individually. I've been asked if I've had x, y and z done by different doctors, such as biopsy, bone marrow test etc and I've said no, but no one is actioning these things so they actually get done. I just get given another telephone appointment for 3-6 months down the line, with a "we'll see how things go"
Did you tell your consultant of your swollen feet and tummy? This is potentially a sign of ascites which is a medical emergency in cirrhosis as the fluid can become infected & you can get spontaneous bacterial infection. I would be stressing this on the phone and saying you need to be physically assessed - as regards your GP you really need to be forthright and have to push to get seen in person. Your age is irrelevant and if you have cirrhosis then you need to be see when you have complications. Seeing how things go is ridiculous - my hubby has cirrhosis due to AIH and has to have 6 monthly tests and screening and I know I can get access to either of his two consultants if need be.
Yes, I told him all of this and his reply was "well your not going to fall off your perch anytime soon". I told him that its getting painful to take deep breaths too and I can feel my liver catching under my ribs and he just nodded and said its something I can discuss with the new hospital once I hear from them.
Oh, and I'm also due back to work on Wednesday (I work in a pre school) and he said that's fine, there's no risks to me anymore as I'm not taking immunosuppression and work "should be" safe
Push to see your GP, get your abdomen checked at least re. the fluid. Where are you being referred too? My hubby had to go to Edinburgh for expertise as our local gastro (although good) hasn't any specialism in the liver.
The consultant said Birmingham. I'm in the east Midlands. I will try and get through to the doctors tomorrow but I won't hold my breath about getting an appointment!
Good news if its Birmingham, the QEB has some of the top specialists working in the research and treatment of AIH and as a transplant hospital they keep a really good eye on you.Tell your doctor you are concerned you may have ascites and need it checking, fluid build up is a sign of decompensated cirrhosis and if it's causing you difficulty with breathing.
You have to be forceful yet controlled. Don't be fobbed off. Maybe your GP can also push for an expedited appointment at the QEB. You need seeing in the flesh a.s.a.p.
So, I had an appointment with the GP yesterday, who sent me to A&E today as my ALT level had nearly doubled in two weeks. She wanted my to be reviewed by a gastroenterologist again and had my LFTs repeated. However A&E were useless, the doctor actually said "what do you want ME to do. I'm not a gastroenterologist", but also said there wasn't one available to see me. In the end he sent me home with oral morphine and an appointment for another ultrasound.
I had also sent an email to my consultant, who replied saying my albumin level was normal, so I couldn't have ascites!
I have been given a prescription for budesonide though, so finally after 6 months I'm hoping my levels start to come back down!!
Erm, glad you got an appointment and you found out about your bloods, very surprised they gave you budesonide though as it is generally contraindicated in cirrhosis - they more commonly use prednisolone to bring ALT down in AIH when you already have cirrhosis.What a really helpful doctor you got in A&E - that's shocking. Hopefully you get your ultrasound soon because that will confirm whether you have fluid. Doctor is wrong that you can only have ascites with low albumin levels.
Goodness the sooner you get under QEB the better.
Do you do Facebook? If so there is a fantastic AIH support group on there where you can get even better advice than I can give - although hubby has cirrhosis due to AIH, his situation was a little abnormal in that he never had any symptoms or treatment of AIH and presented with late stage cirrhosis - his AIH is burned out so he's not on the typical meds for AIH just stuff to help various bits of his cirrhosis symptoms. facebook.com/groups/AIHorgUK
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