I went to the gp Jan 2020 as I was tired all the time and generally didn't feel well. Got some bloods done, raised ggt but thar was it, was sent away with answer. By July that year the tiredness was worse and had an odd pain upper right quadrant. More bloods done and the gp called 2 days later. I tested postive for anti smooth muscle, raised alt, ast and ggt. My gp wrote to a specialist with these results and I was told 3 sets of bloods 3 months apart if all still raised I needed to be seen. My gp then told me it was possible viral hepatitis which would go away on its own or it could be AIH. I don't drink alcohol, I've was taken off my meds for 2 months to rule out drug induced hepatitis.
The 3 sets of blood all came back higher each time and by March I was off work as no matter how long I slept I needed more , the fatigue was horrific, I've been on anti sickness meds for months as the nausea is bad, I have sore joints, still generally unwell and the pain is still there. I have an urgent referral for gastro but due to covid there is a 9 month wait, due to be seen Jan 21.
Anyway my question is how long has taken you to get a diagnosis?
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Deeham46
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Straight away because I went to A&E with ten litres of ascites and was fit too burst!!
Hello,
If your blood tests results are continuing to rise then you should certainly be seen soon and preferably by a hepatologist rather than a gastrenterologist. Urgent means urgent! You need a diagnosis quickly and appropriate treatment/followup depending on that diagnosis in order to avoid potential liver damage. I would suggest asking your GP to chase this up for you as soon as possible.
From being referred to a hepatologist it was about 2 years, but I was unlucky really as it was a never ending catalogue of appointments promised and not received, letters not sent, lost results and a consultant who didn't really believe I had AIH so he adopted a bit of a wait and see policy.
I'm sorry you have such a long wait to see the consultant and that you feel so unwell. Diagnosis of AIH is like putting together a jigsaw puzzle as BLT told me. You will probably have to have more blood tests and a biopsy to diagnose, so it really is a waiting game as they gradually rule out other things. As you are SO unwell I wonder if anything could be done to speed things up - other members may have better advice. Good luck.
I ve been waiting 12 months to see heptologist had 1 phone consultation after blood test ,had ultra sound n mri had results saying no further lumps or bumps found next app cancelled face to face cancelled then 're booked for sept have not had follow up bloods but tried to get gp app 're swelling and lump on right side only got to see nurse who said she didn't know what it was other than could be fat or tumour !!! advised me to wait n see consultant app at time was due 2weeks later but was cancelled day before now sept tried to get through to consultant but she was off sick still haven't Been able to see Gp so still waiting as advised i changed my diet lost 1 1/2st getting more stressed than before and have problem with constipation just can't get any answers at min was diagnosed with Nafld after blood test showed raised liver enzymes and ferritin don't even understand results or if they have changed !
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