julieph85 Posted January 11, 2012 Report Share Posted January 11, 2012 I believe there is a connection between autoimmune thyroid disease, such as hashimoto's, and POTS. I think autoimmune POTS may turn out to be a new type of thyroid disorder that is similar to Hashimoto's. I believe that there is a variant to Hashimoto's that causes autonomic dysfunction. I could be wrong, but it is worth thinking about! My own experience with Hashi- I test negative for antibodies but my TSH is .5 and my free t3 is low. My father has hashimotos and several other autoimmune disorders such as myself. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 11, 2012 Report Share Posted January 11, 2012 All of my thyroid tests always come back normal but my mother and my older sister both have Hashimoto's. My maternal grandmother also had Grave's disease. So, all the women in my immediate family have autoimmune thyroid disorders. I also have several women in my extended family that have thyroid issues. I'm holding my breathe. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 11, 2012 Author Report Share Posted January 11, 2012 Katy, see what I mean! I would say most of the people on here either have a thyroid disorder or an immeadiate family member that does. I don't think it's a coincidence. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 11, 2012 Report Share Posted January 11, 2012 I think the stat I have seen is that 10% of women have thyroid disease, at least by the time they reach older years. If most people on DINET have thyroid disease, I agree that would be a red flag. I am not sure that is the case, but I do agree with you that it is interesting that many of us do and also that we seem to become more symptomatic w POTS when thyroid is also "acting up". Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 11, 2012 Report Share Posted January 11, 2012 I agree that there is a link, if not to thyroid specifically, at least to autoimmune issues. I, too, was just dx'ed by an immunologist with chronic immune-mediated imflammatory disease of unknown origin (because I don't fit any of the "known" autoimmune diseases in the lab work but I am consistently showing extremely high C4a (an immune inflammatory protein). Some of the highest levels he's ever seen (and he does research at NIH.) But, even he re-tested my thyroid function because they all think that with my family hitory I'm liable to end up with thyroid issues of some sort. Regardless of all of this, I have been thinking for a while that there is some link to autoimmune issues. And, I more specifically wonder if it is the inflammatory process involved with most autoimmune disease that is the culprit. The part of our immune system, the complement system, that mediates inflammation is responsible for activating multiple reactions in our body that can contribute to POTS type symptoms when it is out of control. http://en.wikipedia.org/wiki/Complement_systemhttp://en.wikipedia.org/wiki/Anaphylatoxin Quote Link to comment Share on other sites More sharing options...
issie Posted January 11, 2012 Report Share Posted January 11, 2012 Put me in with the others. I've felt for a long time that there is a thyroid connection. l have very large nodules and tumors in mine and also have all the signs of thyroid dysfunction - dry skin, losing outer part of eyebrows, hair loss, vitiligo etc. But, my numbers come back okay and my antibodies come back okay. Years ago they did figure out that my T4 wasn't converting to T3 properly - but that seems to be okay now. There has been thyroid cancer and dysfunction in my immediate family on both sides. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 11, 2012 Report Share Posted January 11, 2012 I had Hashimoto's for many years, and finally had my thyroid removed. It was removed 2 years into my POTS illness, and I am now 3 years without a thyroid. It did not affect my POTS one way or the other not having the diseased gland anymore. I am the only one in my family with all these mysterious autoimmune issues.I think whatever autoimmune process that contributes to Hashimoto's could be at play in POTS. Who knows, you might be right that POTS is a variant of some thyroid issue. Keep digging and find us an answer! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 11, 2012 Report Share Posted January 11, 2012 The thing I find odd in my case is that I have two sisters w Hashimoto's. I am the only one of the three of us who has ever experienced disability w POTS.One is slightly affected by POTS. One does not appear to have POTS. Yet the level of severity of Hashimoto's appears to be similar for all of us. My youngest sister developed Hashimoto's around the same age I did. The other sister about 10 yrs later from the age I was. When they developed Hashimoto's yet did not experience anything like I have with POTS I began to question my theory that the two were connected. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 11, 2012 Report Share Posted January 11, 2012 My mum had graves disease and i have ankylosing spondylitis. Normal thyroid thus far. Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 11, 2012 Report Share Posted January 11, 2012 Thyroid tests always come back normal. My brother had thyroid cancer and a grandfather died of the same. Other than that no thyroid problems known in our family. Quote Link to comment Share on other sites More sharing options...
Sif Posted January 12, 2012 Report Share Posted January 12, 2012 I was diagnosed with Hashi's with a TSH of around 275, a FT4 of about 0.2 and anti-TPO antibodies of >1600 about 3 months before I was diagnosed with POTS. I still have my thyroid but it doesn't work anymore. My neurologist thinks that my hypothyroidism caused nerve damage but my endo disagrees but hasn't offered any other answers. No one has suggested that my POTS could be autoimmune but I think it's very likely that is considering the timely of it! I'm the only one in my family with any autoimmune issues though.. lucky me, lol. Quote Link to comment Share on other sites More sharing options...
CharmedLinz Posted January 12, 2012 Report Share Posted January 12, 2012 Lots of Thyroid issues in my family.My Dysauto doc, Watkins at Birmingham, Alabama thinks there is a very strong connection, he says there is research being done. He has a 12 year old patient with thyroid cancer, and all together about 3/4 of his patients have thyroid issues.My Cousin, who was the first diagnosed in our family with POTS at age 14, fifteen years ago, diagnosed by Watkins, got malignant Thyroid Cancer 2 years ago. Thyroid removed, but now 2 years later she still has markers. They are re-doing her radioactive iodine treatment as we speak.My levels all come back ok....TSH a little low, T4 and T3 a little low........no antibodies.Thyroid is enlarging and on Ultrasound looks very Hashimoto like and is full of cysts. Saw a thyroid surgeon who said I was more than likely at the beginning stages of Hashi's.I've had HypoT Symptoms since I was a teenager. I'm on Armour now.Rest of the family.......Mom's side........her Father was HypoT, and a great Aunt who had Hashi's since her early 20's. Another great Aunt had Addison's.Dad is HypoT and 6 females on his side of the family have thyroid nodules, all but 2 are deceased. 2 of the deceased had their thyroids removed back in the 50's, know one knows any details.Hope this helps. Quote Link to comment Share on other sites More sharing options...
adigitalashley57 Posted October 30, 2012 Report Share Posted October 30, 2012 my TSH was 3.48 when i was put on thyroid meds. the new literature is saying anything over 3 is suspect of thyroid disease. I have found that Armour Thyroid has made a difference in some of my symptoms. Especially potsy shortness of breath and hypoglycemia. hope this helps Quote Link to comment Share on other sites More sharing options...
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