Nymph Posted April 1, 2015 Report Share Posted April 1, 2015 Hi all,I first learned about POTS in September. In November I was diagnosed by a cardiologist on poor man's TT data alone. I did have an echo first to rule out heart problems.I am not on any meds at this time, although the cardiologist told me he was willing to try fludrocortisone and T3. (Is anyone on T3 for this? What does it do?) At this point I am just on salt, H2O and compression. I think I would benefit from meds. I work 1/2 time and come home exhausted. On bad days I am on the couch until late afternoon. I am a mild case but it still takes a chunk out of my life.I would have liked to be in the Vanderbilt study as I have Sjogren's, but have hyper-flexibility, too. So I don't know the cause for sure. My pulse goes up 30 bpm, and it goes up a bit later, at around 10 minutes of standing. They probably want more clear-cut cases. However, I am very symptomatic at that point with numb lips, blurred vision and lead legs. I guess my main question at this point is if this is caused by a neuropathy due to Sjogren's or not as that would affect my treatment decisions. I am really not sure where to turn for those kind of answers. Should I go to the Vanderbilt clinic? I like this cardiologist but I don't feel like he's all that knowledgable as to causes/treatments. I live in NC.Let me know what you think.Nicole Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 2, 2015 Report Share Posted April 2, 2015 Hi Nicole,Do you have thyroid issues? I've never heard of someone being put on T3 just for POTS (although I'm not a doc so maybe that's just an option I haven't come across) but I do know that thyroid issues are actually a differential diagnosis for POTS and/or can be a comorbid condition with POTS. I think I would seek a second opinion if I wasn't comfortable that my current doc had a clear understanding of how to treat my issues. In fact, I have sought second opinions and it has always helped clarify things for me. I hope you get it sorted out.Katie Quote Link to comment Share on other sites More sharing options...
Nymph Posted April 2, 2015 Author Report Share Posted April 2, 2015 Thank you, Katie.No, I don't have thyroid problems so I thought that was weird. Apparently it raises BP, but I'm not sure what mechanism. If it's a vasoconstrictor I might give it a try. I definitely have a blood pooling problem that I can see and feel in my feet. I will give this guy another try and see what happens. After that I may seek a second opinion. I appreciate your input.Nicole Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 2, 2015 Report Share Posted April 2, 2015 Hi. I was looking for a good reliable resource for you regarding T3 supplementation. I found a bunch of unreliable sources but I did come across the drug company information page for cytomel which is one of the T3 only meds. Here is the link. http://labeling.pfizer.com/ShowLabeling.aspx?id=703 Quote Link to comment Share on other sites More sharing options...
Nymph Posted April 2, 2015 Author Report Share Posted April 2, 2015 Interesting. Thanks for looking for that. It doesn't indicate vasoconstriction to me. I will ask him for more info before I decide whether to try it. Quote Link to comment Share on other sites More sharing options...
Sunshinegirl Posted April 6, 2015 Report Share Posted April 6, 2015 What part of NC? I live In VA on the eastern line. There is a neurologist in Norfolk that has a whole POTS clinic. One of 15 in the country. His name is Dr. Chemali. There is usually a long wait time so call and get on the list. They can test for genetic issues, do biopsy...anything you may need and it may not be such a long haul. I do all the things you mentioned but it wasn't enough. I just go on a low dose beta blocker and it brought my HR down 20 beats no matter what position and what I am doing. I can finally do something for more than10 min and not have to rest all the time! I had to counter the beta blocker with more salt and water. If my bp feels too low, I get moving and have a cup of coffee. So, far, it has not been too bad. I do take the beta blocker at night though because it makes me tired, and loopy. Also, that way, Im laying down so Low BP is not so much of a concern. The side effects are supposed to go away in 2 weeks. Quote Link to comment Share on other sites More sharing options...
Nymph Posted April 6, 2015 Author Report Share Posted April 6, 2015 Hi Sunshinegirl,Thanks for the recommendation. I am in Western NC so Norfolk is a lot further away than Nashville. That's great that the beta-blocker is working for you. I wonder if it would work for me. My HR does not get super-high. It tops out around 120 standing. I think I really need to find out more about what's causing this for me. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 9, 2015 Report Share Posted April 9, 2015 Nymph,Can you try getting into Vandy as an outpatient? http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4778Let me know if we can be of any more service with finding you a good autonomic doc. On DINET Main page there is link where you can type in your location to find the closest doctor who specializes in dysautonomia http://www.dinet.org/index.php/physician-listHang in there!Sarah Quote Link to comment Share on other sites More sharing options...
Nymph Posted April 9, 2015 Author Report Share Posted April 9, 2015 Thanks, Sarah.Yes, I will look into their outpatient program. I think that there are also some docs on your list around Raleigh. That might also be a possibility. It's about the same distance. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 10, 2015 Report Share Posted April 10, 2015 Nicole, best of luck to you on your search. If we can be of any help just ask! Hang in there.. Quote Link to comment Share on other sites More sharing options...
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