SPINA THYR a research tool to evaluate thyroid function, deiodinases activity, TH resistance

[Gondwanaland]

@Gondwanaland I remember you and I talked about PUFAs in the past about PUFAs, and if I remember correctly I think I found a legit reference on that, at least for linoleic acid. I know that Peat says it's true for both omega-3 and omega-6. I felt more hypothyroid on high dose PUFAs and I know you did too.

Please forgive my Hashi brain, I completely forgot about it

Just now I was reading about Sialic Acid and the direct correlation of thyroid abs and anti-Neu5gc antibodies and am completely puzzled... What is your take on it?
http://perfecthealthdiet.com/2015/02/neu5gc-autoimmunity-hashimotos-hypothyroidism/

 

[Iritu1021]

Please forgive my Hashi brain, I completely forgot about it

Just now I was reading about Sialic Acid and the direct correlation of thyroid abs and anti-Neu5gc antibodies and am completely puzzled... What is your take on it?
http://perfecthealthdiet.com/2015/02/neu5gc-autoimmunity-hashimotos-hypothyroidism/

To me this sounds like a long-winded review of immune physiology and just another far fetched theory about how autoimmunty works. Not enough to convince me to stop eating beef, especially given my low ferritin. Nobody really knows what causes Hashimoto's but to me personally viral trigger hypothesis from within thyroid gland sounds much more convincing that bacterial trigger from the gut.

 

[frozenborderline]

https://pdfs.semanticscholar.org/d6c3/16b293a9e881795fe66ade9361b2202a5636.pdf

there was a hypothesis proposed that thyroid hormone *resistance* was the primary cause of me/cfs, back in 2003

 

[frozenborderline]

https://www.lesswrong.com/posts/S62...d-hormones-chronic-fatigue-and-fibromyalgia-a

this contextualizes it a little more

 

[Learner1]

I'm not so convinced. The author may have had a thyroid hormone problem but it is doubtful he had ME/CFS, which is a multisystem problem having a lot to do with the immune system and the nervous system. If the immune system isn't working properly, it would be difficult to get well.

As for mito dysfunction, exactly what is he talking about? Overproduction of superoxide radicals? Under or overmethylation? Lack of NAD/NADH? Damaged membranes? Overproduction of peroxynitrites? T3 isn't going to fix any of this.

 

[frozenborderline]

I'm not so convinced. The author may have had a thyroid hormone problem but it is doubtful he had ME/CFS, which is a multisystem problem having a lot to do with the immune system and the nervous system. If the immune system isn't working properly, it would be difficult to get well.

As for mito dysfunction, exactly what is he talking about? Overproduction of superoxide radicals? Under or overmethylation? Lack of NAD/NADH? Damaged membranes? Overproduction of peroxynitrites? T3 isn't going to fix any of this.

It's my understanding that all of these systems are connected. don't have the energy to pull it up at the moment but there is a connection between both purinergic signalling and the immune system and thyroid... since thyroid is key for metabolism, I would imagine that it would affect all those things like redox balance... except in the absence of proper nutrients.

I'm not sold 100% on this theory, but I don't even see it as incompatible with other theories, such as naviaux's, as it might be possible to link a theory of peripheral thyroid resistance with naviaux's theory of hypometabolic state (dauer)...

I posted it because I think it's a very thorough piece, especially for a newcomer. He presents an audacious thesis and then goes very step by step in a nerdy way. I have actually talked to him some and he talks down his theory/cautions a lot, which in my mind is a good sign, despite it being convincing imo, he is not leaning on it.

anyway I have no idea about any other options, so I am leaning on the thyroid idea quite hard atm

 

[Iritu1021]

I'm not so convinced. The author may have had a thyroid hormone problem but it is doubtful he had ME/CFS, which is a multisystem problem having a lot to do with the immune system and the nervous system. If the immune system isn't working properly, it would be difficult to get well.

As for mito dysfunction, exactly what is he talking about? Overproduction of superoxide radicals? Under or overmethylation? Lack of NAD/NADH? Damaged membranes? Overproduction of peroxynitrites? T3 isn't going to fix any of this.

@Learner1 This is random question... I remembered that we talked about your bone loss in the past - and I realized that I never asked you this: have you ever had your ionized calcium and PTH checked?

 

[Learner1]

It's my understanding that all of these systems are connected. don't have the energy to pull it up at the moment but there is a connection between both purinergic signalling and the immune system and thyroid... since thyroid is key for metabolism, I would imagine that it would affect all those things like redox balance... except in the absence of proper nutrients.

I'm not sold 100% on this theory, but I don't even see it as incompatible with other theories, such as naviaux's, as it might be possible to link a theory of peripheral thyroid resistance with naviaux's theory of hypometabolic state (dauer)...

I posted it because I think it's a very thorough piece, especially for a newcomer. He presents an audacious thesis and then goes very step by step in a nerdy way. I have actually talked to him some and he talks down his theory/cautions a lot, which in my mind is a good sign, despite it being convincing imo, he is not leaning on it.

anyway I have no idea about any other options, so I am leaning on the thyroid idea quite hard atm

I don't doubt that many of us have thyroid issues.

For many of us, infections and immune system issues, like immunodeficiency or autoimmunity, and gut dysbiosis are drivers.

 

[Learner1]

@Learner1 This is random question... I remembered that we talked about your bone loss in the past - and I realized that I never asked you this: have you ever had your ionized calcium and PTH checked?

Yes.

 

[Iritu1021]

Was your ionized calcium on the low or high end?

I don't doubt that many of us have thyroid issues.

For many of us, infections and immune system issues, like immunodeficiency or autoimmunity, and gut dysbiosis are drivers.

I think that you have to be careful in interpreting cause and effect.
First of all, you don't know if what you have is the same thing as what me and debored have.
I don't know if what I have is true hypothyroidism, I just know that both too much and too little thyroid causes me to have symptoms. I'm exploring all potential links for this and one of them led me to calcium metabolism.
You can't know for sure that your disease is autoimmune just because it responds to IVIG.
Here's for example a non-immune mechanism of IVIG that might be responsible for improvement of neuromuscular disorders (and POTS might be an endothelial disorder which is still a type of muscle).
https://www.ncbi.nlm.nih.gov/pubmed/9559984
I think we should all agree that all we can do is report on our own experiences and stop placing opinions on things none of us really understand.

 

[Learner1]

I agree. I think we have a number of problems among us, and definitely not just thyroid. As do the researchers.

I have no idea what problem you and debored have, but I know have autoimmune issues that have been identified by lab testing. And a history of EBV and 6 other infections that likely caused a lot of mischief. So, I don't believe that thyroid is the cause of everyone's ME/CFS.

 

[Iritu1021]

I agree. I think we have a number of problems among us, and definitely not just thyroid. As do the researchers.

I have no idea what problem you and debored have, but I know have autoimmune issues that have been identified by lab testing. And a history of EBV and 6 other infections that likely caused a lot of mischief. So, I don't believe that thyroid is the cause of everyone's ME/CFS.

Well, I have (had) all of that too - high ANA, high EBV titer, high antibodies to everything. It's certainly a cascade of events, and also a disease that is constantly "shape-shifting" over the years...

But the unanswered question that remains is that we don't really understand what was the primary trigger for this cascade. I've been to the "viral" and "autoimmune" stops in the past, but at this point my experience ad intuition are telling me that I have some kind of metabolic disorder which bring everything else down with it. The thyroid seems to be a major player in this metabolic condition but it might not be "the primary sin", just an exacerbating factor...

 

[Learner1]

The thyroid seems to be a major player in this metabolic condition but it might not be "the primary sin", just an exacerbating factor...

Agreed... it's worth working on, but so is everything else, unfortunately.

 

[frozenborderline]

@Gondwanaland I remember you and I talked about PUFAs in the past about PUFAs, and if I remember correctly I think I found a legit reference on that, at least for linoleic acid. I know that Peat says it's true for both omega-3 and omega-6. I felt more hypothyroid on high dose PUFAs and I know you did too.

As for coconut oil, it's very high in saturated fat so it falls under my "high fat diet" tab. When I was extremely sick after abruptly stopping high dose NDT, I nourished myself back to life by drinking young coconut smoothies. I had a really strong craving for it and it felt right for my body. I've always liked coconut and I never liked fish so I guess my body does have have a pretty good innate understanding of my metabolism!

Have you ever sent your T1am theory or your experience with (partial?) recovery to Peat? Or associated people like Danny Roddy? I'd be curious how they respond. Peat's adivce on thyroid is different than blanchard's, but he also has mentioned that he doesn't get as much criticism on his theories as he likes (besides people just shouting "crazy"). You seem very educated on this stuff and I'd be curious what he would think of your theory and personal experience (as sometimes that's the best "critique" of theory and is a form of empirical evidence)

 

[frozenborderline]

Agreed... it's worth working on, but so is everything else, unfortunately.

It's possible I could be biased toward thinking of thyroid as the cause because it would be desirable to have a simple, unifying theory. Especially since I don't really have the level of support I'd need to to more vigorously explore all the other options and do more rigorous detective work exploring all the other possibilities. I do think that some of Peat's and Szent-gyorgyi's theories are elegant, but I don't know if they're right.

Everyone wants a unifying theory. In my head this need for such a theory takes on an almost religious zeal, because it's what I want to save me. I hope that we will all get answers someday, and that "someday" is very soon.

 

[Learner1]

It's possible I could be biased toward thinking of thyroid as the cause because it would be desirable to have a simple, unifying theory.

I get that. However, this has to do with the immune system, nervous system, digestive system, mitochondria, etc., vexing as this is...

Though the endocrine system plays a key role, fixing it doesn't fix microbiome composition, autoimmune antibodies, etc.

Wish it could...

Everyone wants a unifying theory. In my head this need for such a theory takes on an almost religious zeal, because it's what I want to save me. I hope that we will all get answers someday, and that "someday" is very soon.

Having spent 3 years playing a game of "Whack a Mole" applying solutions to the various aspects of this disease, I agree that it'd be nice to have a unifying theory.

If I had to pick where the unifying point is, it'd be the immune system, for many reasons...with mitochondrial dysfunction a close second.

 

[Iritu1021]

Have you ever sent your T1am theory or your experience with (partial?) recovery to Peat? Or associated people like Danny Roddy? I'd be curious how they respond. Peat's adivce on thyroid is different than blanchard's, but he also has mentioned that he doesn't get as much criticism on his theories as he likes (besides people just shouting "crazy"). You seem very educated on this stuff and I'd be curious what he would think of your theory and personal experience (as sometimes that's the best "critique" of theory and is a form of empirical evidence)

What Peat thinks of it might be interesting but it still won't prove anything. What I really would like is to see a real researcher - the one who conducts real -life experiences do a study on this. So far I've only seen one human study on T1AM where they compared the levels in patients with and without heart failure and found a significant difference. I'm sure there will be more studies coming out. The people I probably should be reaching out to are the ones who have funding for studies, like the ones in Solve ME/CFS... And then to the researchers who study T1AM... But activism and organizing people are not my forte. You need to get better @debored13 so you can help me!

 

[frozenborderline]

What Peat thinks of it might be interesting but it still won't prove anything. What I really would like is to see a real researcher - the one who conducts real -life experiences do a study on this. So far I've only seen one human study on T1AM where they compared the levels in patients with and without heart failure and found a significant difference. I'm sure there will be more studies coming out. The people I probably should be reaching out to are the ones who have funding for studies, like the ones in Solve ME/CFS... And then to the researchers who study T1AM... But activism and organizing people are not my forte. You need to get better @debored13 so you can help me!

It's not that I think what ray peat thinks of it will be definitive. I just think it would be interesting. Like I said, he complains that he never gets cogent criticism, and the framing of your research and personal experience is very cogent!

I agree it would be better to have studies. I would love to get better and help with this kind of work. There are a lot of things I want to do when i get better, a huge list, i'm sure most people have these, but science and healing is definitely up there. I don't want to relapse so I would want to use my energy to understand the science so that any recovery wouldn't be a fluke. And then I'd want to contribute toward the cure in general.

In the absence of these studies though I was just saying it would be interesting to bounce this off people and speculate--people who are into this stuff and think modern medicine is inadequate to address thyroid /metabolic issues.

 

[frozenborderline]

Third day of thyroid... taking an eighth of a tablet of cynoplus each day, and I finally have my first reaction. First I felt kind of unpleasant and my resting heart rate went up. I think to about 100 for a little while but didn't measure it.

Then I felt a little better but then a little hypomanic and have trouble sleeping. Nothing too terrible. I'm maybe being a little too sensitive. Well it doesn't scare me at all at this dose but maybe just I'm very desperate for this to work and if it disturbs my sleep that's a bad sign. Still at this point I can barely remember what energy is like so it might feel like mania or hypomania!!

 

[frozenborderline]

Third day of thyroid... taking an eighth of a tablet of cynoplus each day, and I finally have my first reaction. First I felt kind of unpleasant and my resting heart rate went up. I think to about 100 for a little while but didn't measure it.

Then I felt a little better but then a little hypomanic and have trouble sleeping. Nothing too terrible. I'm maybe being a little too sensitive. Well it doesn't scare me at all at this dose but maybe just I'm very desperate for this to work and if it disturbs my sleep that's a bad sign. Still at this point I can barely remember what energy is like so it might feel like mania or hypomania!!

Kind of feels like a low dose of ritalin. not a lot of terrible effects like i'd normally get from ritalin tho since sick