Autoimmune hepatitis?

[Amethyst91]

I was wondering how ppl are diagnosed with autoimmune hepatitis? I’ve been experiencing horrible upper right quadrant, right shoulder, right upper back, and right lower back/hip pain constantly since May this year. My tests were initially good but I’ve always had hyperthyroidism so they suggested I do radioiodine in August. After the radiation treatment my liver enzymes have crept up and my TPO finally revealed I have hashimotos thyroid. All my drs say it’s just my thyroid but I feel like I just know it’s my liver. My imaging tests only show very mild fatty liver with a good KPA score of 3.8 but the pain is persistent and sometimes debilitating. They won’t biopsy me because my liver enzymes aren’t over 100 yet but my quality of life has gotten so horrible. I know autoimmune diseases like hashimotos can also cause autoimmune hepatitis so I was wondering if anyone has had something like this happen or any advice?

I also have osteopenia which they say is my hyperthyroidism but I can’t help but fear it’s really my liver.

[Amethyst91]

I’ve also had positive ANAs in August twice which drs not concerned with and I had negative SMA of 9 in August then still negative but higher SMA of 14 in October which again drs not worried about but I feel like should be worried about considering my hashimotos and suddenly horrible quality of life.

[Partner20]

Just generalising here, but the pains you mention could be attributable to many things, including liver, kidney and gallbladder issues. Thyroid problems can cause joint aches and pains, as can deficiencies in vitamins and minerals such as ferritin, folate, B12 and Vit.D, all of which can be low in people with Hashimotos. Are your thyroid levels now optimal following your RAI? Hopefully they are being regularly checked, every 6-8 weeks, with medication adjusted when necessary. I would discuss all your symptoms with your GP and ask what they think could be the cause. Autoimmune hepatitis can be checked for by a specific blood test. Hope you find an answer soon.

[Amethyst91 in reply to Partner20]

So my TSH is about 45.000 right now but my T3 and T4 are a bit better but not in range yet. The pain has been since before all this and is persistent even after. Ferritin good, b12 good, d not great I have to take three tablets a day to stay in low range of good. AST is 35 now, ALT is 60 now and ALP 110 , so those aren’t looking good now. Also got 1.5 on scleroderma antibodies and bone density test of hip was 2.1 showing osteopenia. Eyebrows turned white overnight and I’m only 29.

[Partner20 in reply to Amethyst91]

Sorry you are having to deal with so many different things. It must be difficult to work out which issues are the cause of your various symptoms. Low Vit.D could well have contributed to the osteopenia, but I hope you have also hsd a bone profile test done to check your calcium levels, as low D often equates to low calcium. Your tsh is rather high, as it should be under 2.5 when medicated, and this could be hindering kidney function among other things. Your issues are complicated, and really need addressing by several specialists, an endo, a rheumatologist and a liver consultant. I don't know how much support you are getting from anyone, but you certainly have a range of things that need investigating, and tsh levels that definitely have to be optimised. I do hope that you will get the answers you clearly need. Wishing you well.

[Amethyst91 in reply to Partner20]

Sadly I’m seeing all three types of specialists and feel like I’m getting nowhere. I actually have boarder line high calcium levels in my blood, seem to always be 9.5-10.2. I’ve seen three major Hepatology drs at huge hospitals and I guess the sad part is if it’s liver related they can’t and won’t do anything until it’s too late so that’s just a terrifying waiting game :(The rheumatologist didn’t take me seriously and almost didn’t want to me until I begged for autoimmune blood work to rule things out and now that he’s seen my labs he will actually see me in person to help evaluate me and that’s on Monday if we make it that far before another huge lockdown. My endocrinologist won’t even give the ultrasound I want on my thyroid and just keeps telling me to hang in there for 6 months for the meds to start working , which I understand but I’m worried cuz a cheap Ultasound I did picked up nodules and she doesn’t seem to care about them. It just seems like I’m throwing my money away for all these drs to ignore me.

[AyrshireK]

Having an over active immune system can cause you to have multiple auto immune conditions, however, having Hashimoto's doesn't itself cause AIH it can just happen that you have multiple AI conditions.AIH is a complicated illness to diagnose though it comes to light in most people when their ALT is soaring like into the many thousands and it generally doesn't go down of it's own accord.

It is usually diagnosed by a combination of multiple tests - scans, bloods, liver biopsy and often a key diagnostic is a positive response to steroids.

The BLT page on AIH goes through all sorts of stuff to do with the condition.britishlivertrust.org.uk/in...

I've just re read a lot of your previous posts and you've previously been diagnosed with alcohol related fatty liver (or at least fatty liver but you accept a long history with booze), a positive test for Hepatitis A, IBS and have had all clear tests re. endoscopy, scans etc. etc. You also acknowledge you have health anxiety. You obviously do have conditions which can cause some of the symptoms you suffer but you also seem to be convincing yourself you have others, believe it or not one of the biggest triggers that can cause worsening of auto immune conditions is stress and when you are stressing and also have health anxiety it can manifest in physical symptoms.

Sometimes you have to trust your doctors and try and get on with life without over stressing, you are under multiple specialists and if there was something to be discovered surely they would have or at least acknowledged they need to carry on searching for an answer for you.

Katie

[Amethyst91]

So the hep A was actually testing to see if I had the vaccine which at one point I did. They still tell me that the upper right quadrant pain annoy be my liver, however multiple ppl on here with various types of liver disease have the same pain I have. I’m getting frustrated and I know it has to be my liver because if I take pain meds they do not help the pain and the day after taking the meds my pain will be much worse. I’m very depressed as I’m trying to handle my health and keep it from worsening but it seems the health care system will not give me any aid until it’s too late. I’ve already come to terms that I will never have my old life back but I would like to hold on to the little bit of quality I still have in my life as I’m way too young to stop working and not be able to do things. I’ve never even traveled before and that doesn’t even look like a possibility anymore.