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curediwish

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Tuberculosis Adrenalitis treatment options
Posted: 06-18-08 05:33am

Hi--

I became very ill suddenly when I was 28, losing pigment getting hyperpigmented and having multiple organ problems and high liver function. I had had a positive TB tine for a few years, having gotten TB one winter, I believe, treated with no confirmed diagnosis but was very sick with severe bronchitis which responded to antibiotics. I tested positive for tb ever since, though I was negative prior.

Apparently my adrenals were attacked, causing the vitiligo and hyper pigment. Could this have been from the tuberculosis? I also developed the worst endometriosis that anyone had ever seen, and I asked about tuberculosis then too, but everything was blamed on possible liver disease.

Because I tested positive for hepatitis C antibody (there was no test for virus back then) and had rising liver function tests--which were actually due to the onset of fatty liver and my bx was normal and not HCV--they neglected to consider that my problems were more related to the tubercule they found in my lung at the time rather than the possible hep c. They offered me co treatment with Interferon for the supposed HCV and INH for tuberculosis, but I was afraid to take both experimental drugs at once, and also feared that the INH might cause the Interferon not to work, they really had me convinced I had HCV and told me I had a year to live without treatment for it. It seemed more important than the INH at the time. Unfortunately, the evils of TB were not explained to me, nor was the possibility that my endo and other problems may be caused by it.

I went to Mayo recently and was angered by the fact that the endos were not willing to acknowledge my low ACTH, low cortisol and signs of secondary adrenal deficiency I now have, as well as the very classic and obvious blue black swathes of hyperpigmentation and vitiligo. I read about TB, which kept coming up in every disorder I had been diagnosed with, and I understand why Mayo offered me treatment for tuberculosis instead of hormones, though I wish they would have taken the time to explain it fully to me so I could make a better decision than a flat out "no, my liver probably can't handle it."

Can tuberculosis sit in your adrenals and "reactivate" off and on throughout the rest of your life, causing Addison's? My liver disease is said to be more caused by my odd diabetes and genetics, so it may be part of the tuberculosis problem too.

Now I wonder if every time I take steroids for autoimmune disease (which is probably also due to TB) that my tuberculosis gets reactivated and I actually may be making myself worse.

Does anyone know anything about tuberculosis and the adrenal glands? Does the virus just sit in you dormant, becoming active when you are weak? Has anyone gone through INH or other anti-tuberculosis therapy while having adrenal/thyroid/endocrine problems and receiving steroids/synthroid/prednisone?

I just have no other good explanation for the sudden tornado that just trashed my endocrine and other parts of my body (bad osteo arthritis in the spine, among other things). It all happened in a matter of a few weeks. It was quite frightening and I'm forever changed and getting sicker, with pigmentation problems constantly worsening.

Thanks for any help you can give. I don't know if I can even take the drugs for it. My NASH, which started with the appearance of tubercule and changes in pigment, is as bad as it can be without being end stage liver disease, and right now, my liver function tests are normal, but I do have trouble metabolizing a ton of meds in pill form. Also, my polyendocrine problems are worsening and I don't know if it will make them so bad I can't take the treatment.
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curediwish

New User, Becoming EHEALTHy
Joined: 18 Jun 2008
Posts: 9
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Posted: 06-18-08 05:38am

Oh, I forgot to add, I'm 44 now so I've lived with the hyperpigment for 16 years undiagnosed and untreated. I've done nothing but deteriorate. I also have had two cervical sialendectomie/lymphectomies and am continually troubled with throat problems and calcifying lymph nodes.
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