I don´t have POTS, but I had the diagnosis of dysautonomia (without the POTS feature) long before I got COVID, and in recent months, I have been tracking lots of writings regarding the emerging interest area of the link between COVID and thiamine metabolism. Those who adhere to this connection tend to follow the principles developed by the late Dr. Derrick Lonsdale, who was a superstar in bringing to light the effects of viral infections, pharmaceuticals, and defective nutrition on thiamine metabolism, and who pioneered the use of thiamine repletion therapy to treat even quite serious chronic ailments, specifically including POTS. (Dr. Lonsdale spent most of his career practicing at the Cleveland Clinic.) I just received a copy of Dr. Lonsdaleś book on the topic (co-written with his fellow scientist Chandler Marrs) yesterday. Itś pricey, but I think you might find it fascinating and possibly encouraging.

I don´t know of any physicians who are currently using thiamine repletion to treat long-COVID-associated POTS in clinical settings, but itś well known that severely ill ICU patients with COVID who manifested (confirmed by imaging) Wernickeś encephalopathy, the most life-threatening form of thiamine deficiency, were, in various locations, treated with thiamine repletion, and that this approach brought some acute COVID patients back from the brink. This was reported in a case study appearing in the Jan. 12, 2022 edition of the International Journal of Emergency Medicine, under the title ¨Wernickeś encephalopathy and cranial nerve VII palsy in a 24-year-old patient with COVID-19."

As you continue toward official confirmation of your POTS diagnosis, please consider bringing to your physician visits as much information as you can amass regarding thiamine repletion as a possible approach.

Because I have a confirmed dysautonomia diagnosis (longstanding), I have proceeded to try thiamine repletion on my own, for my respiratory long-COVID problems, and my primary care doctor supports me in this. Lab tests might not be informative, btw, in determining whether a patient has thiamine metabolism issues unless these are extremely high tech and address more than circulating blood levels of thiamine/B1. Dr. Lonsdale himself advocated empirical treatment with B1, moreover, because he considered even the higher-tech lab tests available for B1 assessment to be lacking, and because B1, while capable of producing side-effects in some, is devoid of documented toxicity even at higher levels. Should you embark on thiamine therapy at any point, and want to see various protocols for this, consider looking up the work of Elliot Overton, a British functional medicine practitioner who is devoted passionately to bringing B1 therapy to a greater audience. He is an advocate of the use of synthetic B1 in the form of TTFD, something that Dr. Lonsdale also advocated because of this type of B1ś capacity to cross the brain-blood barrier and also to be absorbed well systemically. I feel very hopeful for you, in meantime.