Autoimmune Hepatitis - Symptoms

    I presented about 15 months ago with serious upper right quadrant abdominal pain, and I had had been at a hospital emergency room about 10 weeks prior for lacerations to the hand. Although the cuts severed a nerve and artery, the hand was simply bandaged up and I left the hospital, so there were no IVs or surgical procedures other than cleaning the wound with saline and cue tips. I should note that I did not allow any procedures because I felt there was a midsiagnosis of the severity of the cut when I was told there was no numbness. There were also improprieties at the ER, which is why I felt uncomfortable getting any procedures there.

The abdominal pain started abruptly and included startle and pull away pain. A blood test determined that I had HCV. The pain increased, then reduced in intensity over the next couple of weeks, but continued for the next 8 months, even after starting interferon treatment 7 months later. ALT and AST levels were never out or reference range. Three months into treatment, I learned that the viral load had dropped to zero approximately the 9th day of treatment, and the pain completely abated about the 5th month of treatment. Treatment was terminated at the end of six months.

Shortly after the end of treatment, it was determined that I had hypothyroid disease and I was put on levo-thyroxin. A serious dry eyes problem began in the fourth month of treatment. I thought it would get better after stopping the medication, but now, 4 1/2 months later, it has not. About two weeks after the medication was discontinued, the abdominal pain returned. I also developed seriously dry skin, but understand that this could be due to the hypothyroidism. The TSH is almost down to reference range, and the skin is not nearly as dry, but it is definitely abnormally dry. I've also developed anorexia, but have not lost weight. I am told anorexia is a symptom of the early stage hypothyroidism. I've sought treatment for possible Sjogren syndrome, and for possible autoimmune hepatitis disease, but my concerns are being dismissed, just as my efforts to get prompt treatment for potential acute hepatitis was dismissed. I have several related questions:

   1. What is the treatment window for acute hepatitis C? 3 months? 6 months?

   2. Does autoimmune hepatitis ALWAYS present with elevated ALT, as I have been told? I can understand ALT being elevated in the chronic conditions that are usually presented, but I'm not sure that I agree ALT would ALWAYS be elevated in every patient, or in every early stage disease patient.

   3. In states where patients can not order blood tests, what is one to do if they suspect an illness such as Sjogrens or autoimmune hepatitis, but can not find a physician to order the tests? I am unemployed with no insurance, and can not go from doctor to doctor.

   4. Is there some autoimmune condition other than Sjogrens that I am overlooking, one that could be causing the dry eyes (dry mouth is not yet a problem)? Could damage to the lipid producing glands have been mediated during treatment, and now immune markers reduced in level since coming off of treatment - so that no markers can be found?

   Thanks,

[iloveigs]

Well, I can't really be of much help to you except to say that the only way autoimmune hepatitis (AIH) can be definitively diagnosed is by having a liver biopsy. I have AIH and Lupus and my GI told me that your liver enzymes (ALT and AST) can fluctuate in a person with AIH, so if you weren't having a flare up, your labs could present normal. Do you experience unusual fatigue or joint pain? You are in a tough position not having insurance. I wish you the best, know that you can count on us here for support.

Erin

[zmombomb]

the amount of money you are spending on tests and doctors visits can be put toward an insurance group so you can receive more testing at no extra cost.  I believe there is a Kaiser Permanente in CO, and they have very low rates for single persons, and you can get many benefits from it.  More testing would be best for you.