POTS caused by autoimmune disease

[ariella]

I read that sometimes POTS is caused by an autoimmune disease, Anyone have this as a factor? If so, of what nature?

My blood work is baffling the doctors, at one point they were about to tell me I had lupus, then everything started showing up negative, now the "main" autoimmune stuff like ANA and anti-dna is showing negative, but my immunoglobulins are off. Plus a few things that might suggest liver involvement is off, but the mainstay of the liver profile is normal. Going back to the rheumatologist soon...this has been a pattern---they ping pong me back and forth between the rheumy and the neuro.

Those of you who responded to an earlier post about myasthenia-like symptoms, were you also evaluated for other autoimmune diseases? I read they often come in clusters. Anyway, theory goes that if you can get rid of the underlying disease, the POTS symptoms will also go away. YAY

I'm open for ideas, plus can use some encouragement, I took a self-imposed vacation from the diagnosticians for a bit, and now need to go back.

Thanks

Ariella

[Roselover]

Ariella,

I went through the same stuff with ANA and liver enzymes. For quite awhile, my liver enzymes were high, but no one could figure out why. then the ANA was really high, but only in SS-DNA... which apparently doesn't indicate anything. I was sent to a rhuematologist who then told me that there was no real indication of lupus or other autoimmune disease.

I really don't know what all this means, but another doctor told me to be careful with over emphasizing the ANA because it isn't always acurate. Don't know how correct this is, but it's what I've been told.

I'm like you... if only I could find the underlying cause and treat it. Maybe you will be one of those lucky ones! Hope so.

~Roselover

[MomtoGiuliana]

The three autoimmune diseases that can cause POTS as a secondary set of symptoms are diabetes, lupus and Addison's disease. There may be others that I am not aware of--and certainly that science is not yet aware of.

I have Hashimoto's and POTS--and so do others on this forum. Since autoimmune problems often occur in clusters in people, it would not surprise me if someday I am (and others are) diagnosed with an autoimmune condition not currently understood and detectable, that causes what we now call primary POTS.

Regardless, if you indeed have primary POTS (POTS not being caused by another condition, or detectable condition), the treatment will involve whatever can be done to improve the symptoms--and of course, you may go through a trial and error period(s) seeking the combination of treatments that help you feel better. Hopefully, like for many people, POTS will improve over time for you.

Take care,

Katherine