Aa
Looking for friends and help with IgG4 related disease
Just had submandibular gland removed. Have had lacrimal gland inflammation. Have chronic rhinitis multiple lung nodules underactive thyroid with nodules diabetes insipidis etc etc etc. Would love to talk to others.
Hello ayalsnan.
I'm sorry about all your issues.
You must know that healing is very difficult when thyroid and adrenal functions are suffering.
As long as these functions remain unregulated or under-regulated, the body's capacity to heal is compromised.
In addition, in light of the Diabetes insipidus, there's suspicion of underlying pituitary or hypothalamus dysfunction or genetic-related issues, which must ruled out, before anything else is done.
This is a complex case and most doctors, including specialists will only treat the resulting consequences and symptoms. This is usually a short-term fix, while the overall situation worsens.
Please post more information about yourself, age, country, short medical history, medicines, typical diet, any test results including lab ranges, etc.
Best wishes,
Niko
I'm sorry about all your issues.
You must know that healing is very difficult when thyroid and adrenal functions are suffering.
As long as these functions remain unregulated or under-regulated, the body's capacity to heal is compromised.
In addition, in light of the Diabetes insipidus, there's suspicion of underlying pituitary or hypothalamus dysfunction or genetic-related issues, which must ruled out, before anything else is done.
This is a complex case and most doctors, including specialists will only treat the resulting consequences and symptoms. This is usually a short-term fix, while the overall situation worsens.
Please post more information about yourself, age, country, short medical history, medicines, typical diet, any test results including lab ranges, etc.
Best wishes,
Niko
3 Comments
I somehow missed the IGg4 -related disease, probably because it was only part of the title and not mentioned in the post again.
Nonetheless, if you were on any steroid treatment for longer than recommended, it would have easily compromised your adrenals and your thyroid (the thyroid might have already been an IGg4 targeted & affected gland/organ).
This would definitely explain adrenal and thyroid related issues.
Please post details about your IGg4 treatment.
Thanks,
Niko
Nonetheless, if you were on any steroid treatment for longer than recommended, it would have easily compromised your adrenals and your thyroid (the thyroid might have already been an IGg4 targeted & affected gland/organ).
This would definitely explain adrenal and thyroid related issues.
Please post details about your IGg4 treatment.
Thanks,
Niko
Thank you Niko. I have been on prednisone 20 - 60 mg for 3 years. And immune suppresant mycophenolate for 6 months. I am grateful for your thoughts. Apologies in delay replying I have been unwell.
I was diagnosed with IGg4 4 years ago. I am doing very well though I do have some joint and muscle pain. I take Aleve fo that as needed. I was on prednisone for a year and then went to Imuran. I see my rheumatologist every three months. I also have aip that I take enzymes for.
I am a glass artist and my doc says my passion for what I do helps keep me healthy.
I hope you have as good luck with this disease as I have
I am a glass artist and my doc says my passion for what I do helps keep me healthy.
I hope you have as good luck with this disease as I have
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