suspect autoimmune hep

suspect autoimmune hep

wondering if anyone else has had similar symptoms. All started in 2002 after a virus, ALT was double AST for 10 years. Constant tiredness, pains in legs, hips, hot sweats, easily fatigued, pain in lower left back. Got slightly better over years. All diagnosed as chronic fatigue syndrome. Now in 2017 after a fibroscan of around 7kpa liver doc first says stage 2 fibrosis, havent touched alcohol in 3 years. Then runs a bunch of blood tests and all is normal except smooth muscle antibody which is positive. Refers me to endocrinologist who runs more bloods and tests cortisol stim and tells me i have low growth hormone. After a course of antibiotics 2.5 years ago i have had this dull pain in liver area, started immediatly after antibiotics. Also get odd rashes in skin, like scratch marks of hives. i have noticed the liver pain and the rashes are worse when allergies are highest. i live in texas and allergies are crazy here almost all year round something blooming. I suspect with the autoimmune antibodies i have had this for 15 years and been cause of the chronic fatigue. my nails are going very pale with the red tips and have had instances of hair falli g out my beard after some prescription meds. i think these have been flare ups of tge autoimmune hep. anyways liver dr doesnt want to biopsy as my other labs r normal. Should i just ignore this or should i be on prednisone or something? Hopung someone with similar experiences as me can give me some direction as feel dr's dont really listen. I have had ultrasound, mri, ct, up and down endoscopes when the pain in liver started 2.5 years ago and nothing was seen in those scans. But have heard autoimmune hep can be quite difficult to see with these non invasive scans.

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  • The biggest clues for autoimmune hep diagnosis are ALT and IgG levels (obtained from your blood results) If they are not elevated to a certain level then they probably won't be looking for it. I do have auto-immune hep and when diagnosed my ALT level was around 1000- now it is maintained at below 20. When being diagnosed no-one looked at my nails; they may ask you to hold out your hands (to look for liver flap), but I know from attending meetings here with the top specialists in the country, they don't associate pain in the area of the liver with liver problems. It seems that you don't have any medical reason to experience pain in the liver, so they can't explain why people do complain of this! (Quite a few people seem to experience it, but the only explanation I remember being given was that it could be caused by an enlarged liver pressing on your ribs) If you have any form of hepatitis, then the fibroscan score does not seem at all high, but you can find a scale for this somewhere online. However, there is no score for auto-immune hep on this particular scale so it is not a precise science. However, if you have any form of hepatitis, then it would be seen on the U/S usually. If the doctors were concerned that you had any liver damage of significance , then they would order a biopsy, but since this is potentially risky, it really is only done here when the consultants want to confirm the level of damage.

    When they do the U/S, they usually look at the spleen here to check if the spleen is affected, since the two things usually go hand in hand. They also look at portal vein pressure. So if they have checked all of those, then maybe they just haven't seen anything that would confirm the auto-immune is present.

    I belong to a group of people all with AIH and I am not aware of anyone having had it for several years before diagnosis. You may find that other people can add more to this thread with more medical knowledge, but I can only give you my experience. When I presented with AIH, as I say my blood levels were very elevated and the U/S confirmed their diagnosis and I was put on meds straightaway. I stayed in hospital for 2 weeks and had a biopsy in that time. I have been diagnosed for 8 years and only just had an MRI. I have never had a CT and the endoscopies I have had were for treating problems that have arisen because of the AIH flaring. It seems as if you have had a very thorough checking over. I have suffered with hair loss and been told "it's nothing to do with the meds" but I know it is!

    It seems possible that you have a problem with your thyroid, but since I am not medically qualified, I really cannot say. Good luck in your quest to find an answer and I do hope this information has been of help.

  • MC1189

    You mentioned in your last message that you belong to a group of people all with AIH. I was diagnosed with AIH nearly 3 years ago and find it rather isolating, in as much as I don't know anybody who suffers with this condition.

    I don't know where you are (if it is a group who meets regularly), but if it is an online forum, I would very much like to join, if poss. My cirrhosis isn't caused by alcohol, and I have other, related, conditions, so some of the posts on this site are not relevant for me.

  • Hello abcd88,

    the group I belong to is on Facebook. There are always members posting and as far as I am aware, it is not restricted to UK users. It is a private group, so only accessible for AIH people, but many people have other conditions too. Just message the owner of the page and I am sure you will have no problem being accepted. The group attends meetings twice a year, which have some of the consultants speaking. As far as I know there is also a group somewhere that meets in Scotland socially. Someone on the Facebook page should be able to enlighten you.

    Good luck and hope you find the Facebook page useful, which goes by the name AIHOrgUK.

  • Thank you - very kind of you to reply so quickly. I'm in the SE so Scotland is a little off my radar! Your info is very helpful - will follow it up. Thanks again.

  • No problem. I have found the group very useful. the next meeting is in London. Details on the Facebook, so maybe you'll be able to make that one. There may be other groups that meet, but since I am in the Midlands, I can't enlighten you about the SE. :)

  • Will follow it up, many thanks.

  • abcd this is the link to the Autoimmune facebook page. facebook.com/groups/AIHorgUK/ It currently has just over 1,000 members, mainly from the UK but others from all over the world. Please do join, you will find lots of up to date information on treatment and research as well as other AIHers to swap stories with and ask questions.

  • Thanks for the facebook link. It is encouraging to know there are many others with AIH, otherwise you feel very alone with your disease, although I'm over the really dark times now - thankfully.

  • thanks for your very detailed reply. it is very strange whatever it is. been told my thyroid is fine but maybe pituitary with the low growth hormone. i also have lost 20 pounds in 6 months. all very scary when u keep getting told nothing wrong but u know there must be something.

  • It can be very scary when you don't feel well and yet there does not seem to be an explanation forthcoming. I don't really know what to suggest, but hope that I have re-assured you that there's a high likelihood it's not AIH. Never say never though! Flare ups would be seen in your blood results and prednisolone (the steroid commonly used) is used to bring down the inflammation, so since there doesn't seem to be any inflammation , this is why you won't have been prescribed pred. I myself do not take any steroids and have only been given them when initially diagnosed and once since for a flare!

    Good luck with finding an answer :)

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