My Thyroid experiment (Ongoing)

[frozenborderline]

I wanted to start with T3 instead of T3/T4, just to see if I got a moderate effect. I took about an 8th of a cynomel tablet last night, with food (should be around 3.5 mcg). I chewed it.
This was at about 1:30-2 AM. The symptoms I had been experiencing before i took the T3 were muscle pain/lactic acid feeling, which I've been getting more and more often recently.
The cynomel was having very little or no effect for the first hour. I had a cup of black tea which is standard for me to alleviate symptoms before bed. After about an hour and a half I felt some relaxation and lightness in a way that was pleasant and it felt like beyond placebo, an unfamiliar sensation. I laid down in bed. I felt relaxed but couldn't sleep for some reason. Started to get a mild headache. The headache got a little more intense but was blunt, not sharp pain, felt like having a fever. I felt overly hot, felt sort of nauseous, not quite like puking, but it reminded me of having a fever. By 5 am, I still couldn't sleep, drank some water... It felt like my body was rejecting something (not necessarily the thyroid). Eventually it wore off and I passed out for 7 hours, woke up with a similar feeling of sickness/achiness in head.


The times on all this are a little bit approximate.

I was really hoping that thyroid would help with my CFS as I've tried pretty much every other intervention Peat has recommended without much success.

However, no interventions by any doctors have helped either, so even in the worst case, Peat's work is just as helpful as anything else :/.

 

[nanonug]

Two things:

1. Unless decaffeinated, black tea has caffeine. If the black tea you are consuming has caffeine, you need to ask yourself whether it makes sense to have it before bed.
2. Thyroxines, and most definitely T3, induce the expression of uncoupler proteins. Uncoupler proteins' function is to short-circuit the mitochondrial electron transport chain. By short-circuiting the electron transport chain, the proton motive force that is usually used for the production of ATP is instead diverted to the generation of heat. This is very useful in cases where the body needs to combat hypothermia, for example. Sleep, on the other hand, requires lowered body temperature.

PS. I always take anything coming out of Ray Peat (or Ray Peat's forums, for that matter) with several kilograms of salt.

 

[frozenborderline]

Two things:

1. Unless decaffeinated, black tea has caffeine. If the black tea you are consuming has caffeine, you need to ask yourself whether it makes sense to have it before bed.
2. Thyroxines, and most definitely T3, induce the expression of uncoupler proteins. Uncoupler proteins' function is to short-circuit the mitochondrial electron transport chain. By short-circuiting the electron transport chain, the proton motive force that is usually used for the production of ATP is instead diverted to the generation of heat. This is very useful in cases where the body needs to combat hypothermia, for example. Sleep, on the other hand, requires lowered body temperature.

PS. I always take anything coming out of Ray Peat (or Ray Peat's forums, for that matter) with several kilograms of salt.

I'm taking the tea specifically for the caffeine. It sounds weird, but recently a little caffeine at night is the only thing that alleviates my symptoms. Caffeine can have a paradoxical effect in some people. It's dose dependent but recently I haven't been able to sleep without it.

 

[frozenborderline]

Two things:

1. Unless decaffeinated, black tea has caffeine. If the black tea you are consuming has caffeine, you need to ask yourself whether it makes sense to have it before bed.
2. Thyroxines, and most definitely T3, induce the expression of uncoupler proteins. Uncoupler proteins' function is to short-circuit the mitochondrial electron transport chain. By short-circuiting the electron transport chain, the proton motive force that is usually used for the production of ATP is instead diverted to the generation of heat. This is very useful in cases where the body needs to combat hypothermia, for example. Sleep, on the other hand, requires lowered body temperature.

PS. I always take anything coming out of Ray Peat (or Ray Peat's forums, for that matter) with several kilograms of salt.

Well I do too, but some of the theory behind it seems sound and I really have tried lots of things with no success... near the end of my rope personally. Ray's diet recommendations have actually worked very well for me but there's no way you can cure CFS on diet alone. So I've been curious but hesitant about trying the thyroid protocol for awhile.

I know that thyroid can be dangerous but we're talking really low doses here and honestly i'm really close to committing suicide if nothing else works. So the risk of any given intervention has to be weighed against the risk of not treating.

However, I have doubt that this will work. I'm not going to push it much longer but I will try a couple more times to make sure it wasn't some factor other than thyroid causing this issue

 

[nanonug]

I know that thyroid can be dangerous but we're talking really low doses here and honestly i'm really close to committing suicide if nothing else works. So the risk of any given intervention has to be weighed against the risk of not treating.

Thyroid is certainly something that I've tried, and I do know many other people who also tried as well, but the results are marginal, at best, and they tend not to last. I can tell you that when I was at my worse, I couldn't tolerate thyroid at all. It is only when I'm feeling better that a little bit of thyroid helps. I certainly wouldn't choose, or recommend, thyroid as a primary treatment, unless a thyroid panel revealed things to be completely out of whack.

Anecdotally - with me being the anecdote - I know that targeting cellular bioenergetics is what works. It is also justified by the study produced by Fluge et al. That's why I'm a fan of things like ubiquinol, nicotinamide riboside, fursultiamine and, in particular dichloroacetate (as you know.) This means that there is at least a little bit of additional "rope" you haven't explored yet.

I don't know how old you are or for how long you've been in this predicament. I can tell you that I am a "veteran", though. I've been in this situation since my late teens and I'm now 49 so it's been a little more than three decades for me. It is very easy to get depressed and hopeless but maybe because of my inherent stubbornness and unmeasurable arrogance, I always end up thinking that one day I am going to f*cking solve the problem that afflicts me. At the same time, I am just humble enough to realize that the knowledge required for success in this endeavor will come from many other people, including people that interact here with me on a daily basis. That certainly includes you. The experiences, the feedback, and most notably the criticism that my ideas get help to keep me on my toes knowledgewise. It is my therefore my hope, and my wish, that we - you, I and so many others - continue to interact here until one day the big "reveal" happens and this disease becomes as easy to solve as taking the equivalent of an aspirin.

Stay strong, man!

 

[frozenborderline]

Thyroid is certainly something that I've tried, and I do know many other people who also tried as well, but the results are marginal, at best, and they tend not to last. I can tell you that when I was at my worse, I couldn't tolerate thyroid at all. It is only when I'm feeling better that a little bit of thyroid helps. I certainly wouldn't choose, or recommend, thyroid as a primary treatment, unless a thyroid panel revealed things to be completely out of whack.

Anecdotally - with me being the anecdote - I know that targeting cellular bioenergetics is what works. It is also justified by the study produced by Fluge et al. That's why I'm a fan of things like ubiquinol, nicotinamide riboside, fursultiamine and, in particular dichloroacetate (as you know.) This means that there is at least a little bit of additional "rope" you haven't explored yet.

I don't know how old you are or for how long you've been in this predicament. I can tell you that I am a "veteran", though. I've been in this situation since my late teens and I'm now 49 so it's been a little more than three decades for me. It is very easy to get depressed and hopeless but maybe because of my inherent stubbornness and unmeasurable arrogance, I always end up thinking that one day I am going to f*cking solve the problem that afflicts me. At the same time, I am just humble enough to realize that the knowledge required for success in this endeavor will come from many other people, including people that interact here with me on a daily basis. That certainly includes you. The experiences, the feedback, and most notably the criticism that my ideas get help to keep me on my toes knowledgewise. It is my therefore my hope, and my wish, that we - you, I and so many others - continue to interact here until one day the big "reveal" happens and this disease becomes as easy to solve as taking the equivalent of an aspirin.

Stay strong, man!

The thing that got me to try this stuff was more the anecdotes not the theory. I know a few people who have made full recoveries from symptoms that overlap more or less than cfs, with the peat stuff and thyroid. I don't know whether those people had CFS but they certainly were housebound and as severely sick as I was. I was very reluctant to try this stuff but had been getting very sick and it was bugging me that I hadn't tried it.

I know ray peat's a little kooky, but the thing is, I've read a ton of his stuff, I've read some gilbert ling and szent-gyorgyi, and that stuff all makes some sense to me. The theory makes sense. Interestingly enough he has also talked about interventions that would be aimed at the cellular metabolism level, and talked about how DCA works, although he thinks it's toxic. Seems like he has a similar view of metabolism as Naviaux.

Idk, I dont know enough to definitively decide what makes sense, I wasn't a science person before I got sick, and teaching myself is slow-going. So when someone tells me "x person is wrong" or "x person is right" I kind of just file it away if I don't understand the theory myself, since there's so much disagreement.

I guess it would be safer to just wait and see what my doctor wants to do but I've been getting rapidly worse, following her protocol of antivirals, to the extent that I may be too sick to even travel to see her! I don't know wtf to do when that happens....

everything's a lose/lose situation. I've had no success with peat's work, really, but also no success with any protocols my doctor has given me

 

[Wayne]

I am just humble enough to realize that the knowledge required for success in this endeavor will come from many other people, including people that interact here with me on a daily basis.

Hi Guys,

Am very much appreciating the great discussion. @nanonug, your above comment reminded me of something I've thought about occasionally over the years (I'm a long-time veteran as well). We all come to this disease with different orientations toward health. And if we haven't, we soon develop them after we begin to try to figure things out for ourselves. I've long thought that a supreme irony would be that for those with a more natural, alternative orientation, that their biggest improvements will come from conventional medicine. And vice versa.

Perhaps just a way for the Universe to keep us on our toes, and not get too entrenched in any particular position. I know I've had to constantly monitor myself to not reject or accept anything too quickly just because of the orientation it came from. @debored13, it seems to me you've got just about the right approach. Not always sure of what to do, but willing to give things a try nevertheless--and reduce the risks in the process. I admire that.​

 

[nanonug]

I dont know enough to definitively decide what makes sense

Being doubtful about one's abilities or knowledge is very socratic and, in my opinion, a sign of high IQ. As Bertrand Russel once said, "the trouble with the world is that the stupid are cocksure and the intelligent are full of doubt." I'm in agreement with what @Wayne says above, that your approach is without reproach.

From my particular bias, that of enhancing cellular bioenergetics, the things to know are mostly glycolysis, the Krebs cycle, and the electron transport chain. Knowing these three things goes along way in understanding how the pyruvate dehydrogenase (PDH) impairment found by Fluge et al is so detrimental to people with SEID. A quick, 6-minute video by McGraw-Hill, is a nice overview of these three connected processes.

 

[sb4]

@debored13 What about crushing the tablet up then taking the smallest amount? I think this way you are less likely to overdose are cause suppression. I plan on trying about 0.1mg sometime in the future.

 

[CFS_for_19_years]

@debored13 I don't know which thread you want to use to continue this discussion, but I'll stay in this one since it's about you specifically, OK?
These are some articles about kinetics of thyroid hormones - peaks and half-lives, that sort of thing:

Twenty-four Hour Hormone Profiles of TSH, Free T3 and Free T4 in Hypothyroid Patients on Combined T3 / T4 Therapy
http://sci-hub.hk/10.1055/s-2007-973071

http://www.hypothyroidfree.com/blog...thms-to-take-your-thyroid-replacement-hormone

Also be sure to take thyroid meds 4 hours away from the time you magnesium, calcium or antacids. T3 can be taken with food but anything with T4 in it should be taken on an empty stomach (2 hours after a meal or 1 hour before a meal).

 

[frozenborderline]

@debored13 What about crushing the tablet up then taking the smallest amount? I think this way you are less likely to overdose are cause suppression. I plan on trying about 0.1mg sometime in the future.

I assume u mean 0.1 mcg. I could take a slightly smaller dose, but I'm not sure about the blanchard recommendation for super-super small doses, haven't looked at the science of how that works. It sounds a little like homeopathy but on the other hand a lot of people report good results from it

 

[Judee]

I really like Wilson's Temperature Syndrome protocol. I attempted it by myself using microdoses of an old T3 prescription. It was tedious but I mixed it with cellulose filler to try and duplicate the timed release mechanism and measured out many little doses (like 1/50th each) using a micro scale.
Dr Wilson is adamant that you have to keep the level constant throughout the full 24 hours or you will have a crash so he prescribes compounded timed-release amounts to try and duplicate the body's natural delivery system.
http://www.wilsonssyndrome.com/restore/t3-sustained-release/

There are not too many times since getting this disease where I can definitely can say I felt halfway better but trying his protocol with microdoses was one of them. I just couldn't find a doctor in the area to continue helping me with this.

Keep in mind that T3 is very potent. Our thyroids release a 97/3% ratio of T4/T3 so you have to be very careful with it. Even using the microdoses, I would get racing heart, palpitations and heart pain on it. (I am super sensitive to medications and think a lot of ME/CFS people are so if I found a doctor I would be adamant that we start with microdoses first. I think Dr. Wilson uses too high a dose for PWC and I think the risk is that we would burn out further on those amounts.)

With his site and something I've been reading on another site, I think the key is to get our average body temperature up to 98.6. (I think many PWC are low-temp.) When we manage to do that then the enzymes in our body can work as they should and we get less of this up-regulating/down-regulating stuff.

One more thought, I've been noticing some online doctors that prescribe a bio-identical version of thyroid. More to match our body's output. I think that is very wise and maybe something I will look into at some point soon...when I have more energy .
http://www.wilsonssyndrome.com/restore/t3-sustained-release/

 

[frozenborderline]

Being doubtful about one's abilities or knowledge is very socratic and, in my opinion, a sign of high IQ. As Bertrand Russel once said, "the trouble with the world is that the stupid are cocksure and the intelligent are full of doubt." I'm in agreement with what @Wayne says above, that your approach is without reproach.

From my particular bias, that of enhancing cellular bioenergetics, the things to know are mostly glycolysis, the Krebs cycle, and the electron transport chain. Knowing these three things goes along way in understanding how the pyruvate dehydrogenase (PDH) impairment found by Fluge et al is so detrimental to people with SEID. A quick, 6-minute video by McGraw-Hill, is a nice overview of these three connected processes.

Yes, i have a chart of cellular respiration on my wall and sort of understand it. I understand the problem with CFS as partially about "Reductive stress" in which pyruvate is turned to lactate and the pyruvate oxidation pathway is somehow blocked or not as active (not fully blocked).

Ray has an idiosyncratic definition of glycolysis, but as far as I know it's just a problem of terms/definition (e.g. he knows what it is, he just calls the different processes something else). he believes that both aerobic and anaerobic pathways can produce lactic acid, and that oxidative metabolism of glucose (formation of pyruvate from glucose) he doesn't call "glycolysis".

that sounds kooky but I pulled up this recent paper that states that the standard idea of "anaerobic metabolism produces lactate and aerobic metabolism doesn't" is wrong: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4343186/

and like I said, I am initially skeptical of people like Peat, but some of his work is pretty heavily rooted in Szent-gyorgyi's work, who was really foundational for science on metabolism (won the nobel prize for discovering the TCA cycle iirc), and so it's hard to draw the line... it certainly attracts a fair share of kooks who will do weird, extreme diet stuff and say things like "legumes cause cfs", but are there some legitimate things there? I don't know

and then the recommendations are thiamine, alpha-lipoic acid, niacinamide... to be fair niacinamide in high doses has given me relief, but only briefly.

So I have a decent understanding of these basic things but it really gets a little too over my head, can't really learn when this sick. I'm basically bedridden and I take in new information really slowly. having some visual charts does help though, more than reading dense stuff.

and then there are controversies like the whole association induction hypothesis thing.

I guess if thyroid fails, I would consider DCA/phenylbutyrate but I would need a doctor's supervision with those, and prescription, don't have the money anymore.

 

[Wishful]

Supplemental thyroid hormones certainly can be effective...for some ME victims, and totally ineffective for others, just like most treatments mentioned on PR. T2 (or iodine) is pretty critical for my well-being, every 21 days. T4 and T3 had no noticeable effect.

With all of the suggested treatments, it's possible that one or more might work somewhat for you. It's also possible that something no one else has mentioned will be effective for you. I played the 'it can't hurt to try it' game for years. Some things helped a bit temporarily, then stopped working. Some were things that made sense based on various hypotheses about what's going on in ME. Some were total surprises. Actually, most of the things that actually worked were surprises. I think LDN was the only one that I tried based on theory or anecdotal claims that actually worked for me. I think that if we all tried the various fruits, veggies, roots, etc, available in the world, many of us would find something that works, at least temporarily.

Of the many things that worked for me, only two are still working: T2 and cumin (PEM blocker). Those two make a huge improvement in my quality of life. Without T2's effects, I might have given in to suicide long ago. So, it is possible to find something that can improve your quality of life. I'll point out that these two effective treatments are very low cost. If you can't afford to try the expensive treatments, try some herbs and spices. Chewing on some plants (weeds, wildflowers, whatever) might turn up something. Leaf lettuce was one of the things that gave me a slight improvement for a couple of months, and dandelion root coffee had the same effect. The petals of a weed blooming in your lawn might be an effective treatment for you. Mushrooms are potentially dangerous, but also potentially effective. If you really are at the point of considering suicide, testing the dangerous mushrooms might not really be such a bad idea. Of course, I wouldn't suggest starting with them.

 

[frozenborderline]

how does one source T2? i have heard mixed things about iodine but I think that at a small enough dosage i would try it, as well as maybe triac.

I would love to consider a super-small-dose protocol like the wilson protocol but I'd need a doctor to prescribe it so it could be compounded. i don't have someone on board with that

 

[Wishful]

There's one source for T2. You'll have to search the forum for it. I forget the manufacturer's name. Iodine works just as well for me, so I've switched to that. The iodine must be boosting my thyroid gland's production of T2, since the T4 and T3 didn't work.

If you have tincture of iodine in your medicine cabinet, that's what I use: just a part of a drop on something starchy.

 

[jason30]

If you have tincture of iodine in your medicine cabinet, that's what I use: just a part of a drop on something starchy.

I wonder, why with something starchy?

 

[Wishful]

I just think that having the iodine react with the starch might be healthier than having it react with my inner tissues. I assume that it then releases a bit slower, perhaps forms a compound that the body handles more easily. I don't see a downside to putting it on something starchy first.

Oh yah, it also makes it easier to swallow it without tasting it!

 

[Eiren]

I take a "thyroid support" supplement ( nutraWest total thyroid 2) and found that taking it at night severely messed up my sleep.

There's research that taking thyroid supplements at night is better, but not for me I guess.

Maybe move it to a.m.?

 

[frozenborderline]

so here's my trip report so far with my T3 dose today:
@T:5min: don't feel much, heart rate increased, no increased warmth

@T:10 min: same



@T:40 min.: I was really , really tense and on edge like serious stress hormone stuff

Delete this message sent 2 minutes ago from Apolo
it basically felt almost exactly like my pregnenolone trial like really irritable and I bet if u took it my bp would be way up

seriously wondered if this could be due to increasing metabolism leading to hypoglycemia but I just had sugars and feel pretty similar wonder if i'm super glycine-deficient or what

@T: 1hr, 15 min.-- drank a bunch of milk with maple syrup to make sure my blood sugar is up, had orange juice too

@ t: 1hr30 calming down some, don't feel so tense

@t:2hrs feel a decent amount calmer but not sure if the overall effect is positive. the sugars helping with the stress could point to hypoglycemia and that I need to intake more carbs with the dose or take a lower dose or take combination T3/T4, but it's hard to say. I don't feel as awful as an hour ago