Failed tilt table test

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.

Thank you for your response and info. Is the thiamine given in high doses? The reason I am asking is because since having Covid twice, there are many things I can no longer tolerate. Things such as antibiotics, some Rx meds, OTC pain/ fever meds, nearly all of my old supplements that I took daily for years, I can no longer tolerate. Some meds have just the opposite effect as what I was taking them for. The higher the dose, the more likely I am to have intolerance reactions. These reactions make me very sick, make my heart pound, difficult and hard breathing, confusion and more. The symptoms get worse if I try to continue them, leaving me bed ridden with the feeling like I’m fighting for my life. I must be very cautious of what I put into my body. Plus I have a rare Primary Immune Deficiency that requires me to do Immunoglobulin infusions at home every 5 days. The Immune deficiency comes with its own variety of complications. My local doctors are untrained with my PID diagnosis, so I have 3 immunologists. Two at Duke medical center in North Carolina and my local immunologist who trained under my Duke immunologist. Mine, is a complex case, so I would need a doctor who is familiar with the thiamine replenishment and also trained in PID. 😩

Yes! I have a lot of dizziness and lightheadedness when I overdo activity. I went grocery shopping yesterday with my husband in the afternoon. We had that morning done some house work so I guess I was already more tired than I realized. Anyway by the end of the grocery shopping, I could hardly walk a straight line and had to hold onto the shopping basket as my husband pushed it. And that was at only 1:30pm. We had activity at 10am. So disappointing and discouraging. Can't help very well with ordinary and necessary daily activities. I also failed the tilt table test but not by much.
Good luck with your issues !

One of the first symptoms that obviously persisted post Covid early 2020 was high BP, and for most of the following 4 years got put on 5 hypertensives (plus one, removed after 3 weeks) yet I still remained breathless with normal daily standing tasks( from brushing teeth to cooking at stove). Standing/walking steadily got more difficult but breathing/cardio tests/scans showed no anomalies. I self diagnosed POTS with my own NASA test at home, gave the results to my GP who needed lots of badgering to get me referred some distance away to a specialist with a tilt table. That showed I had dramatic postural hypotension after 8 mins with BP dropping from hyper say 140/75 at rest to 60/40, which not surprising caused me to pass out. The consultant insisted it was not POTS as although the HR rose to over 120s this was to compensate for the low BP. I couldn’t pick up the low BP at home only the high HR, neither could my local hospital without the sophisticated tilt table equipment. I have been taken off, or had juggled the timings, of a number of the hypertensives…haven’t actually passed out last few months but that might be because I recognise it’s about to happen and sit/ lie down as quickly as possible. My HR is now conspicuously high ( over 100) a lot of of the day… .just sitting using iPad HR just jumped from 84 to 107. I too had seen the research re Thiamine /B1 possibly being low post covid and started the more easily absorbed version Benfotiamine ( at 600 mg per day) 2 weeks ago…weirdly that evening had the first 3 readings in a row where BP ‘normal’ and HR under 100 in 4 years 4 months , but improvement only lasted 2 days. But longer term might make a difference. Unfortunately now involving my GP, as specialists effectively signed me off, the high HR instantly sends warning signs to him that I am over medicated on thyroid hormones ( a 22+ year old chronic problem that I control with private blood tests and prescriptions but Gp has never understood)…so will have to go thru months of adjusting thyroid doses before he will look again at the disabilitating postural hypotension! It is worth looking at other vitamins/ minerals like B12, ferritin, folate, vit D etc as covid, and fighting illness in general, can deplete them… I still have no sense of smell meaning I have little appetite to eat and perhaps don’t consume enough food to top up depleted levels and do a lot of other supplements.

Sorry meant to ask what did you mean by ‘failing the tilt test table’? You didn’t meet the criteria for POTS over 20 mins on table ie HR up on standing etc (what about BP?) or you collapsed before test completed so couldn’t get stats?

Maybe “failed” wasn’t the best term to use. Neither myself nor my cardiologist expected the results that occurred with the tilt table test. From my description, he thought that my dizzy spells were from vertigo, so we weren’t expecting my BP to plummet like it did. I made through the test, barely. After the nurse brought the table back into a horizontal position and put me on oxygen, she began fluid bolus which is a rapid infusion to correct hypotensive shock.

While we were out for my doctor appointment today, I stopped into the Vitamin Shop and bought a good B complex at 50mg. I’ll start with this a few days a week and see if I have any reaction. In the meantime, I’ll look into the thiamine more.

Your health sounds pretty complex. Does your GP address your thyroid? Have you ever seen an endocrinologist for your thyroid?

So like me from the sound of it very low BP with standing, did your BP go up? And how has your cardio decided to treat it?

Yes, hypothyroid for 22 plus years initially treated by GP then 2 different endos. , so I thought I had that sorted thus my resistance to GP insisting my high HR is from hypothyroidism …the high HR is obviously
Inked to the BP, and the increase in BP is Long Covid related! Ok some people have had thyroid problems with LC but as far as I have seen it’s getting hypothyroidism for the first time not getting less hypothyroid ie need less hormone replacement!