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Primary Immunodeficiency

Posted by Anonymous-9327bf95 in Diabetes/Endocrine System, Oct 6, 2011

I am newly diagnosed as having PI. I have CVID. i just had my third IVIG treatment. I also have Type 1 diabetes. Is there any tips or suggestions out there? Thanks!


Posted by @azslp, Sep 30, 2012

Hi! I am new to this site and was skimming for a message like yours. I hope you are still reading these entries. I have multiple endocrine conditions that presented themselves over the first 40 some years of my life. Then a year and a half ago I was diagnosed with a PIDD - Specific Antibody Deficiency. I am currently on sub-Q Ig therapyand doing much better. I learned at a national conference that autoimmune diseases (like my endocrine profile) and PIDDs are often co-occurring. Howevere, due to the small number of patients, I have not found an endocrinologist who has seen the PIDD too.

If you have any leads on either endocrinologists who have experience with PIDD in their patients or immunologists who had endocrine patients I would love to know who they are.

For suggestions, my first thought is to be prepared to educate your medical providers about your PIDD every time you see them. I have not found a single non-immunologist who seems to even be aware of PIDD issues. I also think the patient must be a filter for specific suggestions from each doctor and ask if there are any possible interactions, etc.

My biggest challenge right now is that I have had to change to a new steroid medication for my Addison's Disease (the old one is no longer available). Unfortunately my body is not reacting well. I'm frustrated that my endocrinologist doesn't seem motivated to try tofind out if my PIDD could be related to this and what other things we could try. Any suggestions on that area woujld be weldcome too.

Also if you haven't connected with the Primary Immune Deficiency Foundation, I'd recommend it. LOTS of support and information.

Take Care!


Posted by @asimons, Dec 5, 2012

Check out Facebook groups for CVID. They are very helpful.

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