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Sigh! Update, Those Elevated Tpo/abs Means Autoimmune Thyroid

arizona girl

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Hi guys, you know I've been trying to pin down that autoimmune flare that started this summer with a scalp biopsy that showed scarring alopecia lupus. A frustrating process once again. Two rheumy's later and the second one who is from mayo rochester and joined an integrated practice here in arizona, said undefined mixed connective tissue disease. I least she thinks I needed to be followed, and has agreed not to interfer with the treatment plan my neuro has me on.

Anyway the first neuro did the tpo/ab test and other lupus/sjogrens tests and tried to tell me I didn't need a rheumy even though my tpo/ab, ana and ssa were still positive, my sm/rnp was negative on second testing. I hired a case manager nurse advocate because this has all been overwhelming and she didn't agree with the accessment and suggested the other rheumy.

So, I saw my endo of two years, who is basic endo, but is treatment not testing oriented; and after years of continuing to have a normal tsh and normal thyroid nodule biopsies she says I have Hashimoto's an autoimmune thyroid disorder. I have started on the lowest dose of generic synthroid and my face and neck already feel less puffy. I can't help but wonder how long the attacks have been going on and if this has also been underlying the dysautonomia symptoms I'd been having for years.

That being said at least it is fairly easy to treat, which is nice for a change. I guess it also confirms that I do have some kind of complex autoimmune dysfunction, probably causing the small fiber autonomic neuropathy and lupus like symptoms. So between the cvid immune def and the autoimmunity I guess you could say I have a messed up immune system. She also said it may be what is causing my elevated cholesterol and hopes treating it will bring that down too! So I'm on glumetza for the hyperinsulinemia, synthorid for the hasimoto's, labetalol for the bp/hr issues, and ivig for the immune def and small fiber neuropathy.

So, I've come to appreciate my neuro's ability to see the big picture with me and getting me on ivig was the right thing, it however doesn't guarntee that there won't be an autoimmune flare or that I won't need disease specific additonal treatment.

Sigh! Just when I think we've got thing figured out, here I am over in left field again with something new. I'm glad we are treating things it still can be a bit tiring dealing with all these things, all these doctors and treatments. If anyone has any advice on the latest, please post away, I guess even this little warrior, could use some words of advice and comfort, and gets tired by it all. Thanks guys, hope my story helps you!

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Oh I meant to say rheumy not neuro. It was the rheumy that did that the tpo/ab test. The 2nd rheumy said that the tpo/ab can sometimes cause the ana to be positive. That still doesn't explain the positive ssa and sm/rnp. That first rheumy didn't even bother to tell me my tpo/ab was positive, I had to figure out what it was myself. Then I realized I needed to see my endo and it took a bit to get in with her. As soon as she saw it, she said it was hasimoto. Once it's positive it's positive and thyroid medicine may help to bring my cholesterol down, which is also a symptom of hasimoto. So she is treating it even though my tsh is normal.

Yea, I'm perturbed it took so long, but once I saw her, she got it right. The thing is I don't know if and when she would have run that test herself, so maybe it was a good thing the rheumy did it, even though he wasn't helpful. I just wonder how long this has been going on and missed because my tsh was normal.

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That's so frustrating I'm so glad you were able to get a diagnosis. That is huge because hashi can definitely cause pots like symptoms and it goes with my theory that pots is related to hashimotos :) do you see Dr. Goodman out there? Sorry, I know there are a few that do and I always forget who it is

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Hi julie, yes it is good to get one, I just seem to be adding diagnosises though. Which isn't great. Every time I think we've got it figured out something new comes out of left field. My cardio is like "you should be surprised by that, I think that this is just going to be the way it is for you. I think they are going to find that all these autoimmune conditions are on a related continum and they all are connected and one will trigger another. That the study of these immune defects is really a young one and we may see stem cell treatments curing many of them." So that was interesting. I'm getting to the point were I almost have to laugh about it, it has become so ridiculous. Which is why the big sigh!!!

I read your dealing with ra that is is a tough one, probably harder to deal with then what I am. Interesting your take on hashi. Why do you think the symptoms are related? I've been reading up on it and it's more of a hypo state with your heart rate dropping, so now I wonder if my recent heart rate drop is because of hasi not improvements from the ivig I take for the immune def and autonomic neuropathy. Then I read that synthyroid can raise your blood pressure. Mine is already high when I'm upright, so I hope that doesn't happen.

Actually I don't go to goodman, thought about it, but he seems to treat symptoms more then getting to the route cause. I've already been on that treatment plan when I went to vanderbilt. Salt loading didn't do much for me, though I am eating more pink salt as my blood sodium has been low.

I see a neuro who treats in a subspecialty that focuses on neuromuscular autoimmune disease like ms, stiff persons, polyneuropathies, large and small fiber neuropathies and because of the nature of these disease states he sees a lot of immune def conditions. They happen sometimes to do supressive treatments associated with the autoimmunity, but, sometimes it was there to begin with and is part of the whole defect. Like mine was!

I go to Phoenix neurological associates and see Dr. Todd Levine. It is one of the few practices in the west/southwest that treats in this subspecialty. So I feel fortunate I was referred to them.

Thanks for posting, I think I just needed to talk it through with other members here on the forum. That does help us feel a bit better and like we are not all alone in it. :)

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I'm sure that is frustrating for you. I agree with the idea autoimmune is on a continuum. When I got RA six years ago I had a feeling I was gonna end up with more down the road. Since RA I've had psoriasis, Sjogrens for a time (it went into remission on its own with no explanation), inflammatory bowel disease, and now autoimmune pots. In only 6 short years! Dr goodman says I'm an autoimmune smorgasbord :) my dad has hashimotos and later developed crohns. I believe that pots and hashi are related in that there is a similar auto immune endocrine mechanism going on. Also there seems to be a strong propensity to get them together and in families. Surprisingly dr g agreed with me on this. I know hypo thyroid symptoms dont traditionally seem like hyperandrenergic pots symptoms but my dad does not have pots but his early on hashi symptoms were scarily similar to my pots symptoms. Also I read that hashi can cause Bp and heart rate instability not just reduced heart rate and Bp so who knows. I guess a positive on your new diagnosis is that hashi is very treatable

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