brethor9 Posted March 10, 2014 Report Share Posted March 10, 2014 I just got the call today and I have to say I am completely devastated and at the end of my rope emotionally can anyone explain to me about this illness and what to expect and what may have caused it? I already have MCAD/POTS/EDS....my symptoms that made my doctor test were severe pain and weakness in my muscles especially my legs, night sweats, headaches, sweats, nervousness, high/low BP, severe tachycardia.... ugggh Bren Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted March 10, 2014 Report Share Posted March 10, 2014 I'm so sorry to hear this, but relieved to know there is medication regulated to help. I've only been diagnosed with pots for 6 months now. But I really think there is one thing to be said about hormones! I'll be happy if I can see an endocrinologist., which I would suggest for you Hang in there and keep us posted. Best advice I have Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 10, 2014 Report Share Posted March 10, 2014 I have been having a low TSH for the last 2 years. It hovers around 0.02 (0.3-3.0). My FT4 is at the top of the normal range or a few tenths over. I feel my "perkiest" at this level. When they made me lower my dosage from 100 mcg. to 88 mcg., I spent all last fall in a constipated, bloated daze. I felt halfway to a coma. I then went back up on my thyroid meds, and it took me a good 3 months to get back to my "normal", where I can think and have some energy.I had my thyroid removed a few years ago, and started at 125 mcg. I felt alright, but was heat intolerant, so I voluntarily lowered the dosage to 112 and then 100.Anyway, at rest, my heart rate is in the 70s, so I don't think I am really hyperthyroid, even though the labs say I am. Being on a lower dose did not make my POTS be any different, just mostly my mental ability and energy was gone. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted March 17, 2014 Author Report Share Posted March 17, 2014 I hear you Sue! I am definately finding I need to be more hyper in my levels than hypo...just trying to get the right dose of thyroid med....really tricky and the POTS certainly does not help Bren Quote Link to comment Share on other sites More sharing options...
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