I've had fatigue and weight gain of 55 pounds over the past couple of years. I eat a healthy diet, alcohol rarely, and stopped smoking two years ago. About a year ago I went to see the doctor for classic signs of hypothyroidism.... except for two things. My TSH was low, and my heart rate tended to be high. However, since my free T4 level was also very low, I was started on synthroid. Prior to this, I had some problems with tachycardia, wore a holter, had some petechaie, and was ultimately diagnosed with anemia. Echocardiogram was normal, holter was normal )which is why I quit smoking. I wanted it to stay that way.)
However, the weight gain and fatigue was not halted by synthroid. My other symptoms have thankfully resolved except for periods of tachycardia, hearing my heartbeat in one ear, and exertional shortness of breath. I had these before starting synthroid, and I have been reluctant to complain to my doctor because I know my sythroid will be stopped. As uncomfortable as I am now- I never want to feel like I did before I started the synthroid.
So.... over the past year I have had a ridiculous workup. I could list everything, but it's easier to state that my cortisone levels are normal, hormones (except t4) are normal, head CT normal, sodium/chloride/potassium/magnesium levels a little low at times (practically normal), ferritin low normal, usually not anemic, no clotting problems.... yada yada yada. I spill a little protien in my urine, but nothing to indicate kidney disease, lupus, or anything else.
I have had RLS and PLMD- I've had these my entire life. It's never affected my quality of life. I am also hypermobile, again, no biggie for me. I do not have ELD or marfan syndrome. And, whatever the endocrinologist might think, I'm not depressed. I do not have anxiety attacks.
However, as a nurse whose coworkers do not think is crazy (thank god), I have had my heart rate and blood pressure checked often, and have noticed that it seems to be pretty consistant with POTS. I have also noticed that my tolerance for exercise is declining. Even though I've gained weight, the BP and HR stays pretty much the same except for the new excertional shortness of breath and tachycardia. I do not have a murmur or signs of congestive heart failure. I do have insane salt cravings, drink lots of fluids, and I do not have diabetes insipidus or any similiar problem.
Today, after looking up fatigue and doing something I swore never to do- self diagnose- I came across POTS. Even with the provigil, I still have periods of extreme fatige. I tried an experiment- Resting heartrate lying down was 70. Sitting was 92. Standing was 110. After walking up the stairs, it shot up to 140. The longer I sat afterwards, my heartrate eventually dropped to the 60's. Now, I have had orthostatic vital signs done before, (minus walking up stairs), with similiar results, but since my blood pressure never changed much, I didn't think to much about it.
After further research, other little things I never thought much of, like feeling like I'm going to pass out after a hot bath, seem to fit in with POTS.
I do not want to go back to my doctor anytime soon. Frankly, I have to pay off previous visits. I also work in a small healthcare setting, and I am worried about being labeled. I know it shouldn't happen, but it does. I also have an autistic child, a teenager, and a husband - so I need to be able to function. I have a job that I love, so I need to function. So........
I take vitamins, try to eat healthy, and am now considering indulging my salt cravings, lol. I continue to walk almost daily, but anything streneous wears me out. I enjoy yoga, probably because I'm so flexible the simple poses are relaxing. Any other non-prescription treatments I should try? I will eventually go back to the doctor if nothing improves how I feel, but for now I'd like to avoid that.
Thanks for reading my long winded post :)