Are my swollen, red, puffy eyes a symptom of autoimmune hepatitis?

Hi all. I was seen by a gastroenterologist in July following a 'hepatic episode' of deranged LFT's, mild jaundice and a significantly positive ANA. This episode had settled by the time i was seen but the consultant said she was almost certain that this was an indicator of autoimmune hepatitis. She did not want to do a liver biopsy at the time as my bloods by then were normal so she suggested we wait until i have another 'flicker'. I have been having monthly LFT's which are currently normal. However over the last 12 weeks i have had red, sore, puffy eyes - which sounds like an inconvenience but is in fact having a huge impact on my life. The redness spreads from my upper eyelids to the top of my cheeks and almost looks like i have been burned. The eyes are sometimes so swollen i can barely open them and they are getting worse everyday. I have been referred to dermatology and i see them later this week but i really feel that this could be autoimmune. The symptoms responded well to a 5 day course of high dose steroids but within 48 hours of completing the course, the symptoms were back. I get the impression my GP is sick of me and just wondered if this is something anyone else has encountered or if i really am barking up the wrong tree?! I have the fatigue, headaches and foggy head that i also had when i had my hepatic episode. Any advice greatly appreciated!!

11 Replies

  • Not a symptom of AIH on their own, no. Combined with the fatigue etc, not sure. Why not pop into an optician and see what they diagnose - sometimes opticians are better than the GP when it comes to problems with or around the eyes and usually easy to get an appointment.

  • Thanks Bolly. We have an eye hospital locally and i have been seen there but as my vision itself seems ok, they have sent me back to my GP. Will just have to see what dermatology says.

  • Could it be an allergy, on top of 'dry eye' syndrome? I have these and my eyes and the skin around do get blotchy and red and swollen, at times VERY uncomfortable. You have my sympathy, and hope you get a solution very soon.

  • I should add perhaps, my eyes got more comfortable for a bit this year when on high dose Pred for AI liver disease, and for the first summer since I was in single figures I didn't have significant hay fever. Eyes less good now, on reducing dose of steroids. I often waken with the blotchy, swollen look! Tis all linked, I think, as the allergy/eye problems are autoimmune, and most of us with AI liver disease have at least one other AI condition. I have underactive thyroid too, and eyes affected by that. HTH.

  • I also have AIH and an underactive thyroid, I agree with Witchie girl.I dont get this problem but think it is probably linked. Maybe the gp needs to do more detailed exam and bloods to identify the problem!

  • Thanks witchiegirl and chris2591. I also have an underactive thyroid and although it has been stable on the same dose of thyroxine for almost 5 years, my TSH last week suggested that i was slightly more underactive. The GP has put this down to the fact that i am not very well at the moment and has recommended that we monitor monthly with LFT's instead of altering thyroxine and risking pushing me the other way. I just feel like no-one is listening and i am falling through the gaps. GP has now given me a 28 days supply of 5mg prednisolone to try but not to start until after i have seen dermatologist on Thurs. All of this stuff has only kicked off since April and initially i put everything down to stress having lost my husband suddenly the year before (he was only 36) and being left a single mum to our 3 boys (who at the time were 8,6 & 4years of age). Just reaching the end of my tether now! But hopefully i will get sorted eventually. Thank you for your input - its good to know that i am not alone in this at least!

  • Well pre transplant my eyes were quite an issue so you have my sympathy. The optitian was helpful and optitions can make referalls to the eye hospital, useful to know if your GP is not willing. My eyelids developed cysts small looked like bumps but eventaully as with you the infection moved to my cheeks and my face was inflamed. eveyone just taold me to bathe it and massage it. If this sounds familar then you should take action. Eventually I had mine lanced at eye hospital horrid but soon better. It was defininetly because my immunity was compromised by the hepC my view is that yours will get worse and worse until it too beomes infected, it is sore and irritating feels grity and dirty, so hassle someone until they get it done. good luck

  • Hi Blondie, having recently been diagnosed with AIH, I found GP's to have very little or no insight into this illness even though my belerubin count was over 1300. They originally treated me for gaulstones and operated and found nothing, all my ducts were clear etc . Then they placed me on steroids up went my weight down come the belerubin . However because of the (what I can gleam) the fickle nature of this decease they can only diagnose after a biopsy because I became a pin cushion for blood tests the consultant ( best ever) would not give a definitive diagnoses until the results were in from the liver biopsy. Sorry I cannot help with the red eyes etc because mine were so jaundiced the family have nicknamed me 8ball because they were so yellow like English mustard? However the symptoms the trust give for AIH were text book in my case My advice is don't give up and be a nuisance with the GP unless they worked in this field whilst training they will have a much insight in my experience as us?

  • Thanks riverdweller and holly23. Will see what dermatology have to say tomorrow and then start hassling gp again. I am actually a practice nurse myself so am used dealing with gp's but when you are not feeling great, the last thing you want is to have to fight for answers. I don't fully understand why the consultant does not want to do my liver biopsy until my bloods are abnormal again - surely the disease will still be there even if my liver does not appear to be 'flickering' at the time. I just feel like I need answers and if treatment is necessary would rather start sooner then later. My boys have been through enough - I need to look after myself for them. Thanks for all the replies. Feels like a lonely time just now.

  • Goodness, you and your sons have been through a lot. I hope you are all doing okay, in spite of the liver problems. it could be the dr doesn't want to do a biopsy on you unless necessary. It is an invasive procedure and with your young family it may be hard for you to 'take it easy' till you recover. If you aren't actually being treated at present, then maybe it can wait a bit. It's good your LFTs have settled. AIH is a vary variable disease - for some people it can go latent and not flare up again for some time, if ever. Hopefully the situation for you.

  • Thanks witchiegirl. Just hard not to worry. I feel i would cope better if i knew one way or the other. I am not very good at this waiting game!

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