Failed tilt table test

@2roses, There are a couple of other discussions you might want to scan through:

-- Has anyone had a tilt table test or examination?: https://connect.mayoclinic.org/discussion/has-anyone-had-a-tilt-table-test-or-examination/
-- Positive Or Negative Tilt Table Test result?: https://connect.mayoclinic.org/discussion/positive-or-negative-ttt-result/

Good....Exploration of new directions almost never sets one back, even as we need to apply caution before embarking on something new. The range of available B-complex products is off the charts, and the type and strength/dose of B1 that will be contained in any given product varies wildly. Some experts feel that mononitrate, HCl, benfotiamine, and TTFD all yield particular and unique benefits, and that some patients will benefit by combining one of more of these. And some B-complex products provide only the U.S. minimum daily requirement, while others supply as much as 100 mg of mononitrate or HCl. The only B complex I have encountered that contains benfotiamine and TTFD as its B1 component is Elliot Overton's ThiActive B, and this product is used primarily as a background B-complex to be used together with upwardly titrating doses of B1 gotten from other sources. One can develop a reaction to even a very low dose of any of the B1s, and the literature indicates that this is understood to be the result of a patient with longstanding or severe B1 deficiency (acute or subacute) having lost the natural ability (temporary) to metabolize B1 readily. And itś also important to note that there is no established set of equivalencies across the various types of B1, such that itś hard to say how much HCl would be needed in order to match the effect of B1 taken as, e.g., 15 mg TTFD. In addition, benfotiamine is often mislabeled as lipid-soluble, but while it is absorbed, by many, more easily than is HCl, this is not because it is lipid soluble, since, by definition, all thiamine is water-soluble. There is consensus, though, that only TTFD (and a similar product called allithiamine) can readily cross the blood-brain barrier at low doses. That said, patients with Parkinsonś Disease who follow a B1 protocol operate on the assumption that even if they take B1 as mononitrate (the cheapest and most commercially used B1), so long as they take a relatively large dose of it, it will, by virtue of its sheer volume in the bloodstream, make it into the brain. Getting B1 into the brain is important, according to the B1 scientific experts, if one is trying to treat dysautonomia (which, in this context, involves any disorder in which the sympathetic and parasympathetic nervous symptoms are not interacting properly). In any case, I wish I could say there are physicians in the U.S. who know how to implement and monitor patients on a B1 protocol, but my impression is that this area, outside of clinical studies, is being left to patients themselves. So patients in this endeavor, unfortunately, need to become quite knowledgeable in order to develop their optimal personal protocol. Elliot Overton, the complementary health practitioner in the UK best known for use of B1 in his practice setting, operates a Facebook group for patients wanting to receive his guidance as they progress. So my approach, so far, has been to read Dr. Derrick Lonsdaleś wonderful book on thiamine and dysautonomia and Elliot Overtonś manual on creating oneś own B1 protocol, and to monitor developments in B1 therapy both independently and via participation at the Overton Facebook Group (though my acceptance there is still pending). . . Despite all this, when one considers that B1, if the B1 scholars are right, may be linked to the deepest root cause of long COVID and of dysautonomia in general, pursuing B1 therapy becomes, at least for me, an irresistable option with the greatest possible potential to restore health.

Yes, BP went back up after the nurse returned the table back into a horizontal position. She also gave me oxygen and began fluid bolus. My cardiologist encouraged me to keep my far off appointment with the Duke cardiologist, as they would be able to decide if I have POTS or not. There isn’t a cardiologist in this area who is qualified to make that call. My local cardiologist said that I could try making lifestyle changes in the matters of drinking more water and eating more salt or try an Rx. Since I already drink allot of water and eat a ton of salt, I opted for the med, which is called “Midodrine”.

How long have you been attempting this approach and are you seeing any signs of success?

Seems a bit odd if they have an expensive tilt table with the link to the BP, HR etc monitors that produce data onto a graph against time yet no one can diagnose POTS or not, or postural hypotension (PH) etc… As I said before my Falls consultant was adamant that I did not have POTS as BP was involved. My case is confused by high Bp on sitting, so doubling the salt consumption is no a good idea; I wear compression socks a lot though. I’ve read about Midodrine that it can give relief for shortish periods of standing, but nobody here in Uk has discussed that with me. Got a diagnosis but then no treatment other than DIY stuff. The USA’s POTS charity Stand Up to Pots is better than ours on the peripheral non Pots but related ailments like PH, but can take a bit of finding the web pages.

I have been following some version of a B1 protocol for about 2 months, and throughout, I have had to make regular adjustments in my dosing, because while I am very sensitive to B1 and know that I should take things slowly, I occasionally let my impatience get the better of me, and will then titrate up too quickly, only then to experience a setback in my symptoms (upper respiratory, mostly). I have also been regularly updating, all this time, what I take with my B1, as I learn about B1's synergistic relationships with certain minerals and other B vitamins. I have had some very good days along the way, but I am still very far from stable in my improvement. Relevant here is that I recently came to understand that two prescription medications that I had been on for years might be getting in the way of my responding to B1 faster, and so while I tapered off of these drugs (under medical supervision), I needed to focus on any changes that these tapers brought about. Dr. Derrick Lonsdale, in the latter years of his work, voiced strongly his certainty that many prescription meds that we take can interfere with B1 absorption, and the meds I was on are, moreover, infamous for causing spikes in patients´ bradykinin levels (causing harmful vasodilation throughout the body and respiratory symptoms associated with this vasodilation). It will take weeks or months for the lingering effects of my tapered medications to resolve, and so I look at my B1 protocol experience as something that I will essentially have to start again from scratch once more time has passed after cessation of my offending meds. But there is one sign that I am responding very meaningfully to B1 already, when I consider how my blood pressure has fared. When I tapered off of my medications (both for hypertension), I had already been taking some dosage of B1 daily. To my amazement, once I was drug-free, my blood pressure was maintaining at very safe levels without any medication, leaving me to conclude that my B1 dosing was probably yielding one of the best loved benefits of B1, i.e., reduction of high blood pressure.

I have had hypothyroidism for 25 years (I'm 70). I got covid on March '23 from a fellow cyclist on a bike tour. It didn't impact my thyroid (although I felt better after meds increased my TSH level from 3 to 1), or result in POTS (drop in BP). It did hit me with 8 months of PEM and cardiovascular high BP, irregular heartbeat, and chest pain. No permanent heart damage (no troponin), but 8 months of minimal exercise and naps was a pain. I'm fine now. I have gotten leg cramps for many years, increasing exercise levels and making sure you get enough calcium/magnesium, hydration, and stretching help. With PEM I could only do biking/walking in bits, but could still do weights and other resistance work. Covid is evil and hits everyone differently.

That is what I am hoping with my B1! Taking my BP am and pm I am finding I get 3 recordings in a row of BP good in 120s/ 60s then next set of readings high 160s / high 80s. I haven’t come across supplements or drugs counteracting the B1… in that you shouldn’t take them at all, or say in 4 hour period? What examples of not taking ‘pills’ are you trying? All these adjustments are so slow going; I think the B1 must be making some difference, but if it’s generally lowering BP I must also be getting more Hypotensive at times ( am getting periods of breathless and ‘wobbly’ just doing tiny jobs standing in the home eg put some plates in dishwasher). I know I came across some research about B1 ‘deficiency’ some people improving on 300 mg others needed 1200+mg a day!

Just a query from fellow 70 year old hypothyroid sufferer still with LC…did LC affect your hypothyroidism, as you suggest it did but what do you mean by ‘meds increased my TSH from 3 to 1’…surely this is a decrease, changed by hormone replacement or are you using other ‘meds’? All specialists drs.have washed their hands of me unfortunately and I am left with ‘agreeing to disagree’ with my GP who thinks it’s ’overmedicated on levothyroxine’ that is giving me my high HR…but I do take a combo T4/T3 and have always had a suppressed TSH (0.06-0.02). It’s the postural hypotension on standing and hypertension at rest that is new( well 4 1/2 years) to LC that is disabilitating.

LC did not influence my hypothyroidism. Thyroid stimulating hormone (TSH) normal ranges from about 0.4 and 4.5. A number "less than" 0.4 is high levels of TSH (a bit hard to wrap one's brain around this) and can be borderline hyperthyroid. Increasing one's Synthroid or other thyroid meds results in lower TSH numbers, which are actually higher levels. I have had to do the WWW smackdown with doctors that think a TSH level of 3 is fine; I tell them that a (higher) level of 1 to 2 gives me more energy, and better (GI) regularity. So, I finally increased my levothyroxine from 75 mcg/day, to that plus one 88 mcg once a week, which moved me from 3 to 0.9 TSH. A TSH of 0.06 to 0.02 sounds close to hyperthyroid range, which can be associated with cardiovascular symptoms. At least for me, a TSH level of 0.15 resulted in irregular heat beats.