Hi Janetbender, I’m Kelly.
I am sorry to hear of the
essential Thrombocytosis. Blood cancer, correct? Covid has been awful for many of us. If you don’t mind me asking, what were your symptoms and what type of Dr diagnosed it? I have seen a few people mention POTS as well. My cardiologist, on my first visit to her, said POTS and handed me a piece of paper with info on it about POTS, and was done with me. I fired her then and there. She never even tested me. My heart rate is raised from any type of movement. Even showering. I’m fighting to get any true diagnosis besides long Covid. Treating me for ME (like fibromyalgia) with new drugs. Take 18 medications now from long Covid. Do they have you on all kinds of meds? Is the Fludrocortisone for Congenital adrenal hyperplasia? I am wanting to compile a list of diagnoses from people to get an idea if any are a like or a pattern. I’m in limbo. I have all symptoms leading to CHF (congestive heart failure) but my tests say differently. Or possibly PH (pulmonary hypertension) but I’m on low end so the true test there is right heart cath. Now thinking Cushings Syndrome and waiting for an Endocrinologist appointment my new cardiologist is sending me too. Meanwhile I get worse with no reasoning for it. Trying to see what others are experiencing. All chime in. Want to try and see what others experience.

I’ve had pots for a very long time. Fludrocortisone helps push my pressure quickly but I need a beta blocker for my heart rate. Unfortunately, after covid my beta blocker stopped working effectively and I’ve yet to find a med that helps the extreme Brady/tachy. I’m very well researched in pots though if you need any advice. I’m happy to help. Not everyone is as hard as me with stubborn symptom mgmt.