Made it through the hectic week… Thank The Lord my mom was here to help. Thyroid biopsies didn’t happen – big mix up of sorts… My ENT ended up being unable to do them at his office so I have those tomorrow morning. I have several growing lymph nodes in my neck that are concerning me. My doctor originally deemed them “benign reactive” but since they are growing, he’s not so sure.
I also ate some delicious radioactive eggs. Gag. The gastric emptying study came back normal apparently… They told me to expect to be there for at least 4-5 hours but the tech said I was done and could leave right before 3 hours. Since my gut motility changes from day to day, I kind of feel like I ate radioactive crap just for fun and have another “normal” test that makes me look even more like a hypochondriac.
The autonomic testing at UW wasn’t too exciting but it confirmed my first tilt table test results of POTS. The tech stopped my tilt at 25 minutes because my blood pressure took a dive. With my first tilt table, my blood pressure didn’t really change. The neurologist I’m seeing at UW is a nice lady. She is very good at what she does but that is primarily neuromuscular disorders (Parkinson’s, ALS, etc). She isn’t an autonomic specialist. I was hoping once they confirmed my POTS/dysautonomia that I would be transferred to the autonomic neuro there but I’m not and have to figure out if that can happen. Due to the fact that I don’t faint and my pulse doesn’t jump as high as some people with POTS, she classified me as probably having “mild POTS” – nothing about this shit feels mild, my friends! My heart rate is usually what concerns me the least – that’s just what they focus on for diagnostic criteria. It is always a good 20+ beats faster at rest in medical settings than at home because I get nervous. I don’t think the tilt table is a completely accurate picture but it provides enough info for the POTS diagnosis at least. My vision/eye issues, GI dysfunction/weight loss, and seizure-like episodes are my biggest concerns and challenges. Low blood pressure and extreme fatigue are the runners up to those.
The “good doctor” that I’ve mentioned before called and talked to me last week and wants me tested for an issue with my adrenal glands that she thinks I may have. I messaged my endocrinologist about it and he’s willing to do the testing but doesn’t think I have anything wrong.
The UW neuro brought me a printout of a VERY small study that showed that some individuals with POTS improved quite a bit with regular exercise. Problem is, since I don’t faint and have toddler and preschool aged minions to care for, plus stairs – I’m not very sedentary. I am much more restricted than I’d like, but I am still (fortunately) pretty active compared to other patients who have to be in wheelchairs or are bed ridden due to fainting. This study seems to be pretty controversial amongst the POTS population. It really depends on the underlying cause of your POTS and since we don’t know mine, I’m wary. When there’s controversy, I’m almost always on the “conspiracy” side. Anyways… She is taking me off of the Florinef (med to raise my BP, but I’ve had no luck) and putting me on a beta blocker called propranolol to try to decrease my heart rate. I’m a bit nervous since it can lower blood pressure more and there are only a million side effects but, okay. Doc did agree to take my brain MRI images and review them and give me her opinion. I really hope that I’ll get to see the autonomic neurologist at UW at some point. I’ve heard great things about him.
Right now, my biggest concern is what’s going on with my thyroid and lymph nodes. People keep telling me things are going to turn around and get figured out. I want to believe that.