I'm also curious which "auto-immune" the doctor is talking about. If she was born without a thyroid, autoimmune thyroid disease should be an impossibility, so she must have another autoimmune disease???
Personally I like little stories. I got one.
Friends dad got a brain tumor. And they went took it out. Couple of years later his neurological symptoms returned and he went into a coma. They ran bunches of tests because they thought first his tumor came back. Didn't find noting. But the doctors were sure it was back and he was a goner. Then a nurse wiping his nose noticed a drop of puss on his nose. Turned out he had a massive sinus infection, that almost killed him. Toxins were effecting his pituitary gland. He almost died because the doctors were too focused on the obvious.
That was 20 years ago he's fine.
Anyway, your grand daughter has an odd condition, born without a thyroid. But that doesn't any any health issue she has is due to her lack of thyroid. 'auto-immune' issues aren't because her's born without a thyroid. I'd worry more that her doctor is over focused on the 'obvious'
She has been on them since she was 3 weeks old. ALL levels are good. She has been going to Texas Childrens since then. Everything else I mentioned has been coming on gradually within the last few weeks. We take her for her levels to be checked every 4 mos. @ Quest Diagnostics. Have no doubt she is under care for this with Dr. Gunn @ TX Childrens. Please re-read my comment and you will see where I stated her levels are all good.
Excuse me for asking for information. Thanks for putting my mind at ease.
If her development has been 'fine' the lack of a thyroid itself is a dubious cause of her symptoms.
It's possible she has some sort of auto-immune thing going on, sarcoidosis, lupus, a low grade virus that's making her sick. Had a friend who spent a year with chronic mono that had settled into her spleen. Might also resolve itself and no one will have any idea what happened. The latter would be what I'd put money on. (The doctor doesn't know, but is willing to point fingers)
Thank you so much :) I appreciate that response. That is what we are hoping also.
Exactly what labs were done? Just because she doesn't have infection or anything, doesn't mean her immune system is working properly.
What are her current thyroid hormone levels? Please post results of her latest tests, and be sure to include reference ranges, as those vary lab to lab and have to come from her own report.
Her symptoms are all consistent with those of hypothyroidism. She needs to be on thyroid replacement hormones.