Auto immune hepatitis for over a decade

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Is there others like me? I've had auto immune hepatitis since I was 19. That's not a letter. I'm 31. And boy am I sick of people asking that letter I am in the medical field. I've had a Hyper thyroid since I was 17. After turning yellow at 19 I went on the normal suppressors and steroids. I had a liver biopsy. I can't remember the result but it wasn't good. I freaked out on the meds in the middle of the night. And stopped the meds. Miraculously got well. The disease stayed doormat for a decade. So did the thyroid almost. 2014 I was yellow admitted into hospital (ast of 741)and was on steroids for a few months. Lost more then the weight I gained. Everything Was peaches until my thyroid relapsed the summer of 2015. The meds for it regulated it for good I believe. But we're bad for my liver. Since aug 2015 I have been sick. The gi wouldn't see me without insurance. But he did perscirbe me meds and bloodwork. In feb my ast was 141. And I started the steroids and imuran. Lost my mind. Couldn't drive for over three months. I had a lot of stress at my previous job at that time. And the steroids really upset me on another level. I was trying acupuncture and hypnotherapy. My labs were better and I leveled down. But they were the absolute devil pill. Since then. I've never felt myself. I'm not living. I couldn't get any energy, or lose a pound. I've kept a watch on my declining bloodwork for my liver. Ive became unemployed mid July . I've had hives since before July. Comes right after my all over itching. Finally found Zyrtec kept them away for a day. I got Medicaid. Waited really long for a in person appointment.. My gi was doubting the link to the liver and hives. I finally seen him last week. Slowly I'm losing my vision . My vision is severely blurry after 3 feet. After having 20/20 my whole life. . He put me on uceris and imuran. Becuz the uceris should have less side effects then the predisone.. But I think it made my Vision more blurry. I got a flu shot. Then I got a hep a hep b and a tetanus shot. My lip is swollen. And I havent had hives since Oct 13. My scalp is bumpy and itches. And I feel like the worst is yet to come. I've had 3 adult seizures but have came out clear with Nuero tests. I have insomnia. My plans of my hands burn up when I clean. I have several signs of liver symptoms. And maybe I should be on higher steroids but I'm really scared Becuz last time. I wanted to die. They made me severely ill. I couldn't drive anywhere or walk up the street. I lived in fear and now I feel as though I'm doing it all over again. My ast was 69 in August. Then oct 5 it was 498. Should I be going to the hospital? My eyes are slowly turning yellow and I have far too many bad days. Native from Vegas. But obviously not drinking.

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  • Posted

    Goodness Alexzandreia, it sounds as though you should be in hospital.  I don't know what to say because this site is based in the UK & I only know what happens here.

    It does sound as though you should be in a hospital that deals with liver failure.  I hope that someone who knows the system in the US will be able to advise & help you.

     

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    • Posted

      Mrsmop- Thank you. It's just one day at a time. Mostly bad days. But I'm trying to stay optimistic. I sat right in front of a doctor 9 days ago. He only found It vital that I start med treatment right away. AND technically Vegas doesn't have liver specialists. The US is not known for having good doctors. I would assume it is different where you are.

      This disease has been some what of a nightmare. I know that I need to find some sort of support group.

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    • Posted

      I found one link for you, I don't know whether it will help, I will post it after this post, it may take a while to be approved.

      What about looking at the Mayo website, they seem helpful

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    • Posted

      I will look into this link. Thank you. The Mayo Clinic has always been a place I wanted to go. As I know I'm unique with the reactions my body has. I've had 3 seizures that the neurologist couldn't figure out here. All the test came back clear and clean. I had tfebrile seizures as a baby and then I had to be put in my ears and they went away. But, truth around age of 11 and I was in the hospital for a while and I couldn't figure out what was wrong until they want to do a spinal tap and I came out of it and I knew where I was but prior to that I lost a couple days of my life not knowing what happened as a child . But at the moment I'm not working and I have state paid for insurance. I'm which it looks as though the " special " places I'd like to have help me only accept their state paid insurance not out of state. So maybe there is a possibility there's a loophole. I just haven't found it yet.

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