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POTS and autoimmune disease?


Besides POTS, have you been diagnosed with an autoimmune condition?  

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This issue may have been polled before--I'm sorry if it has--I haven't checked. This connection of autoimmune disease and POTS seems to come up in our discussions from time to time. I have Hashimoto's and at the time I was diagnosed, I was told that I had a pretty high probability of developing or having another autoimmune condition as well.

I am just posting this poll out of curiousity.

Thanks for participating.

Katherine

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I haven't actually been diagnosed with any autoimmune problems, but my neurologist suspects that I have something going on. He just can't put his finger on it. It isn't lupus, thyroid, scleroderma or anything obvious, but he thinks I had an autoimmune reaction following my pregnancy that triggered a change in my cardiovascular system, especially my pulmonary vein & artery (he thinks this is what's causing my breathing problem, but he can't prove it).

So for the record, I technically haven't been diagnosed with anything but POTS, but I am not holding my breath.

Amy

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Calypso

Have you been tested for thyroid disease? Not that I think breathing problems are related, but my POTS symptoms flared for the first time when I developed Hashimoto's--only I didn't know it was POTS at the time. I also remember having feelings like I couldn't breathe at that time.

Katherine

OK--never mind, I see you say you have been tested. Did they test you for antibodies, or just your TSH? Perhaps you might want to ask them to test for antibodies and also do the whole thyroid panel, not just the TSH.

Edited by MomtoGiuliana
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I voted that I have been diagnosed with POTS only, but there is a high probability that I have multiple things going on. I have an appointment soon to see an internist who specializes in autoimmune disorders, and he is going to *hopefully* test for CFIDS and fibro. I have 99% of the symptoms for both and am eager to find out what's going on...

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Runnergirl--I am so fascinated that your doctor says you have the most unstable thyroid she's ever seen--my endo has said the very same thing to me. It got even worse during my pregnancy--thus augmenting my POTS symptoms especially going into the 3rd trimester for some reason. I had to keep getting dosage adjustments.

ernestine, yes I have heard that it is not unusual for lupus patients to also have POTS.

So frustrating that so little is really understood about these autoimmune conditions that affect millions of women.

BTW, I remember seeing a study that found that women with autoimmune conditions on average have slightly longer lifespans than women without. Quality of life may be another story tho. :unsure:

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I have noticed on many previous posts that a lot of people have gluten sensitivity/intolerance. I wonder how many people realize that this is condition, (if it's been diagnosed as celiac sprue), is also an autoimmune disorder. Just wanted to point that out for survey purposes! :unsure:

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Good point Gena! Also, many people don't realize they have this condition b/c the symptoms can be mild and/or can mimic other problems.

Also, just another point on this--my endo told me that most people with autoimmune celiac also have Hashimoto's--they are just beginning to realize this. The reverse is apparently not true. He tested me for celiac just in case, but I tested negative.

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FYI, my neurologist, who's been seeing POTS patients for many years, told me today that even though POTS people test positive on the TTT, though that is one of the things we have in common, there are MANY symptoms we do NOT have in common. We are a heterogenious group of patients. As a matter of fact, even though POTS presents as a symptom, we may all have DIFFERENT things wrong or different things that may be causing our POTS. POTS (this is me talking) is a symptom. Eventually, when this is all sorted out, we may find many different causes, and many different treatments.

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futurehope--thanks for your point. Doctors have told me that too--that POTS is a symptom not an illness, and this is confusing--because for the vast majority of us we nor our doctors have any idea what could be the cause. That said, I do wonder if for many of us there is an autoimmune problem going on. Autoimmune patients tend to have more that one autoimmune condition. I have also read that lupus patients often have POTS. Anyway, that's why I was curious about how many of us have already been diagnosed with one autoimmune condition or more.

I think you are absolutely right--considering how much variation there is in response to treatment and recovery and POTS symptoms, there must be multiple causes.

Katherine

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Momtoguiliana, Just today I'm finding out that I have an increased blood titer to Achr receptor antibodies. What is really interesting to me is this. I am the one that called for all the immune testing. I told my doctor I wanted to find a cause for my POTS. He called for bloodwork involving all sorts of tests, one of which was an immune panel taken at Mayo clinic. (I think there may be a thread on here on which I mentioned this Mayo test. Or maybe it was on NDRF. I can't remember.) They did NOT run one of the tests my doctor had wanted, which was to test for antibodies to GANGLIONIC acetylcholine receptors. So, actually the test that WAS taken (which had NOT been asked for), was a test for antibodies to the receptors in the muscles, not the receptors in the ganglions. In any event, my doctor was surprised to find the blood test showing an elevated response since he had not noticed clinical signs of myasthenia gravis in me (which the achr receptor antibody tests looks for). The achr receptor antibody test was then repeated, and it was elevated again. This was all a surprise to my doctor who will now get a repetitive nerve stimulation test (EMG) run on me to see if I indeed have a diagnosis of myasthenia gravis. All interesting stuff. Remember, myasthenia gravis was not even on my doctor's mind.

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  • 1 year later...

Hello,

I wanted to let you know something that Dr. Grubb told my PCP a few weeks ago. He told him that my POTS was actually an auto-immune disease. He said that since I got it from a virus that my illness is in this auto-immune category. (post-viral and autoimmune)

Has anyone else heard anything like this? Maybe there was a communication error but I'm almost positive this is what Dr. Grubb told him.

I hope I didn't just confuse everyone. :D

Lisa

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The more I think about my dr's conversation with dr. Grubb I'm wondering if they were talking about the CFS side of things for me. Maybe this is what he said he considered autoimmune. Hmmm

Lisa

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