21,121 members16,742 posts

DIAGNOSIS ICH Immune Deficit Hepatitis

First I started feeling very tired. 1st Diagnosis Fibromyalgia Syndrome. Then diagnosed with SIBO by gastro. Liver swollen. Throwing lots of enzymes ..... showing signs of HEP C , but it is not. My whole skeleton started to just burn and my urine had clouds. Had a DEXA scan-Stage3 Osteoporosis. Tested PTH ..... found all my parathyroid glands had gone overactive...creating hyperparathyroidism causing all the calcium to be leached out of my bones at alarming rates. This is miserable. No cure for autoimmune hepatitis..... only steroids. Foret prednisone....melts my bones. I am at a loss and am booked out to a gastroenterologist on April 29, 2017. SUFFERING IN CA Any suggestions will help. Thanks

3 Replies

Oh my goodness, what a nightmare situation! You might want to go on the British Liver Trust forum and ask there as well, they might know specialists dealing with uch complex cases.

I have issues with my liver as well and I'm worried about anutoimmune hepatitis, although so far I haven't been diagnosed with it. I had a liver biopsy 3 years ago which was clear for it but I brace myself for them wanting to do another one to check. Not pleasant.

How on earth they thought of checking your parathyroid glands?? I've not had that.

So what's your hepatologist advice then??

Poor you!


Steroids . No cure Good Diet....meds for depression from the mental overtones if having throid disease. The ones out thereseem


to make you get lots of infections ..lowers immune system worse. From pnemonuia to many UTI infection. Takes your kidneys out as well. ck calcium levels in urine and kills