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

[Iritu1021]

hmm genova? I had been told to get lactate/pyruvate blood ratio test, which i was told was a normal lab that would b covered by insurance and not a specialized thing. I had been told the ratio was more important than total lactate.

It seems like a moot point to test that since you don't have it anymore. I think its mostly related to hypoperfusion due to busted circulation (which again has to do with serotonin receptors that regulate blood flow). And hypometabolic state also makes it harder to clear lactate. T3 might have upregulated your 5HT1A but it may be actually making 5HT2 receptors worse.

You should think about giving lithium orotate another chance (although it may send your T3 levels through the roof if you still keep taking T3). Last time you tried LO you were still too hypo to tolerate it. I couldn't handle lithium either before I fixed my thyroid. Or maybe add cyproheptadine if you still have it. I guess berberine is another option that could theoretically work.

For lithium I recommend NCI brand that I linked on my blog because it's the only one with sustained release so it's more gentle. You gotta make it at least through the first week before you know if it works for you or not - acute effects of lithium are completely different than chronic effects. And time of the day when you take it might make a difference too.

 

[frozenborderline]

On friday, or maybe thursdya, can't remember, had the beginning of the worst crash I've ever had so far. Ive been pretty tired and confined to bed for stretches of days before, but this is the worst time yet, sensitive to noise or even music, which is essentially my last comfort/tether to who i was before being sick, and feels like an ultimate indignity. I have had several crashes recently and sometimes saline brings me out of them, but even going out to the hospital is very tough when my POTS/CFS is this bad...

I have also been having periods of intense air hunger, neck tiredness, and difficulty breathing. Because of the interesting stuff around structural/spinal issues in CFS that has come out recently, and dramatic recoveries, I am considering a neck collar or traction device as well as some other new things.

The thyroid plus twice weekly saline had kept me plateaued at a decent level of energy, that, while still sick , was more tolerable than this is. I hope I come out of this crash.


@Iritu1021 I recently read the blanchard book mostly, and couldnt find reference to weaning off treatments before starting his method, nor to the 12.5 mcg starting dose you recommended, which still sounds judicious. I had a bad reaction to 50 mcg t4, but wondering about just starting tomorrow with 25 mcg. Or is it bad to break it up into a couple doses of 12.5 mcg per day? he mentions t4 at night helping with sleep, which is sort of akin to how i took cynoplus instead of cynomel at night usually. I think I fully understand the t3 ratio stuff anyway, like i'd need a ~.5mcg dose for 25mcg t4


Not sure that I will ever come out of this crash, but some of the stuff on
mechanicalbasis.org squares with the new and improved (haha) symptoms I've been having, so will be pursuing that structural stuff as well as adjusting thyroid dose etc.

I have tried lots of things to help with the awful discomfort and trouble breathing of this particular crash but nothing has really helped, it is terrifying that i could semi-permanently be worse.

 

[Iritu1021]

@debored13
Are we reading the same book? I have the latest edition, on kindle. That's what it says at location 1235:

"Physicians will very often have patients come in to see them on this type treatment who have TSH results well below normal; technically they have been overdosed. They usually feel only fatigued rather than the classic “hyper” symptoms such as palpitation and shakiness. When patients have been overdosed in the past, pushing the TSH down to zero, the TSH almost always seems to “get stuck”. One can reduce the dosages of T4 and T3 considerably, even enough to increase hypothyroid symptoms, and the TSH will continue to be low… Hence, my belief that there should be mild reductions of both T4 and T3 to allow time for the TSH to become “unstuck”."

Prior to that, he explains his idea that one needs sufficient TSH level to allow proper T4 to T3 conversion.

And I'm pretty sure Blanchard would never treat you without knowing your labs so that's the first problem you need to address.

Mechanical stuff is a waste of time. I used to believe all of those things back in the day too and my problem were 100% due to T3 messing up my receptors. You will come out of this, trust me. But first you will have to endure T3 withdrawal. How do I know? For the same reason that I knew T3 would not work for you in the long run - because I've traveled that road before you.

T3 ended up being a poison for my brain and body. Air hunger, by the way, is a common symptom with prolonged T3 use in CFS. I think it's might be related to dysregulated 5HT effects on bronchial muscle and blood vessel constriction/dilation - in other words, worsening dysautonomia.

 

[Iritu1021]

And the neck/structural info (or imo "misinformation") is not new, it just has spread over from EDS/POTS community. I've heard all that stuff back in early 2015. Had I gone for surgery back then as I was offered, it could have ended up being a huge mistake.

 

[sb4]

And the neck/structural info (or imo "misinformation") is not new, it just has spread over from EDS/POTS community. I've heard all that stuff back in early 2015. Had I gone for surgery back then as I was offered, it could have ended up being a huge mistake.

Yeah, maybe for you and others it would have been a mistake but that doesn't mean it would be for everyone. There are a small number of people that have dx CCI and seem to be cured or improving from sorting it out.

 

[Iritu1021]

Yeah, maybe for you and others it would have been a mistake but that doesn't mean it would be for everyone. There are a small number of people that have dx CCI and seem to be cured or improving from sorting it out.

My comment about the waste of time was directed at @debored13 and I feel pretty confident that in his case the worsening is due to T3 and not due to CCI.
Guys, I'm going to bail from this thread since it got too long and got off topic.
@debored13 I feel like I told you everything I could on the subject and I feel like we're running in circles now -- if you need an advice on how to taper T3 then feel free to reach out to me directly.

 

[frozenborderline]

Update, I did the exact Blanchard ratio and at a smaller (hence more tolerable) dose for about two months straight (25 mcg t4, .5 mcg t3) with basically no improvement. I had no symptoms of overstimulation and I do not think that I was suppressing tsh too much, however I’m too sick to go to doctor at the moment. It was however well-tolerated, so that while I think thyroid is probably not at the root of my issues, he may be on to something about the ratio.

I still find it sort of odd how he determined the exact ratio. I’m not sure there’s literature to back up the 99:1 (approximately) claim for such a small tissue gap. Wouldn’t this vary patient to patient based on lots of factors involved in deiodination? Also I know what’s traditional or “natural” isn’t always best but can be good heuristic, and in natural sources of thyroid (like chicken neck or fish head soup, the thyroid would be closer to a 4:1 ratio). Although now that I think of it, perhaps using the 4:1 ratio of thyroid, but infrequently, basically would achieve the same thing as the Blanchard ratio would daily.

 

[frozenborderline]

Mechanical stuff is a waste of time. I used to believe all of those things back in the day too and my problem were 100% due to T3 messing up my receptors. You will come out of this, trust me. But first you will have to endure T3 withdrawal. How do I know? For the same reason that I knew T3 would not work for you in the long run - because I've traveled that road before you.

So, we all give each other medical suggestions and advice for things to hack on here and it’s all good, experiment at you’re own risk, etc. I have learned a lot from this. However what I think can risk the most harm is emphatically telling someone what they DON’T have, because when ruling out a potential Avenue for diagnosis and help, one should have a very high standard. I would caution against doing this in the future.

I have been responding to traction, and recently based on my imaging I have been diagnosed with craniocervical instability, which is a plausible cause of my symptoms. Thyroid was the dead end, not mechanical stuff. And with Jen Brwa and Mattie’s recent stories, there is a lot more to investigate with “the mechanical stuff”.

What Paul cheney ans naviaux have hypothesizes ans I largely agree w , is that cfs is a protective hypometabolism against massive oxidative stress. Revving up the engine w thyroid is unlikely to be a cure, in that light. At least in my case, I think there’s strong evidence of that.

 

[frozenborderline]

My comment about the waste of time was directed at @debored13 and I feel pretty confident that in his case the worsening is due to T3 and not due to CCI.
Guys, I'm going to bail from this thread since it got too long and got off topic.
@debored13 I feel like I told you everything I could on the subject and I feel like we're running in circles now -- if you need an advice on how to taper T3 then feel free to reach out to me directly.

I’ve been off t3 for six months still , was worsening the whole time, had nothing to do w thyroid. However, I did turn out to have cci. All these theories, are just that, theories. I don’t know how you can so confidently say what is going on with me because you think my case is like yours

 

[Wishful]

I agree about ruling out potential diagnoses and treatments. I may say that some things--aluminum and EMFs come to mind--as being in my opinion extremely unlikely to be causing health problems (except maybe for people with very rare disorders), and I usually suggest experimenting to test the hypothesis in a scientifically reliable way, such as double-blind testing. If the claim is that your problems are due to T3, and you've altered your T3 levels without affecting your problems, it's probably safe to rule that hypothesis out. If the claim is that someone is EMF sensitive, set up a double-blind test (maybe a cellphone in a cardboard box, turned on and off by the monitor). If someone can prove, with proper testing, that their health is affected by EMFs (or aluminum pots, or astrological patterns), I'm sure there will be someone interested in verifying it with their own testing.

 

[Learner1]

https://www.sciencedaily.com/releases/2000/10/001016073704.htm

https://www.sciencedirect.com/science/article/pii/S221475001730063X

https://www.defendershield.com/electrosensitivity-some-people-more-sensitive-emfs-than-others

 

[Wishful]

Sorry @Learner1 those links don't show clear evidence of health problems from EMF exposure. The first two seem like there's lots of room for experimental error, and the last one seemed to be a promotional claim, rather than scientifically verified results. Hardly conclusive evidence.

 

[Learner1]

https://www.sciencedirect.com/science/article/pii/S0891061815000599#bib0295

https://www.ncbi.nlm.nih.gov/m/pubmed/25352086/

https://www.ncbi.nlm.nih.gov/m/pubmed/15804752/

https://www.sciencedaily.com/releases/2000/10/001016073704.htm

 

[Wishful]

The first paper (Martin Pall's) seemed to be claims about claims. I once tried finding the experimental data backing the VCCG claims, but couldn't find it.

The second paper seems to be about very strong magnetic fields at very low frequencies. Not applicable to cell phones, for example.

The third says that the results on wild birds are inconsistent. Not something you'd use as an example of hard evidence.

The fourth one is more interesting. It's not conclusive evidence, but I think it should be followed up on, to make sure that it isn't experimental error. It would need a lot more work before it might affect safety standards.

I did think it was odd that the mouse tumour cells and the rats in the previous listed paper both showed an effect in 35% of the exposed cells/rats. A wild coincidence, a scientific link, or an artifact of scientific publishing (a target for manipulating the experiment or data to achieve)?


Nope, still no evidence I'd consider conclusive.

 

[Learner1]

Its obviously your choice if you choose to live under a set of high voltage power lines, or stick your finger in a socket.

But, having witnessed the discomfort of people who can't stand to be in certain rooms due to electromagnetic fields, and being aware of the literature, my experience says it's a factor worth being aware of and not a fairy tale, no matter if you choose not to be convinced by what you read.

As with other things that have a large element of public good (Roundup and vaccines come to mind), there are large vested interests who would prefer you believe that these things are benign, to the point of paying scientists or ghost writing "scientific studies" that support their business model.

 

[frozenborderline]

I am sort of agnostic on the harms of emfs but I think talebs point about gmos and the “precautionary principle” applies. Until we have long term safety data , we shouldn’t assume absence of harm and make use as widespread as it is. There’s a pattern in science and regulatory agencies repeatedly not applying any precaution and approving things that’s dont have long term studies that turn out to cause lots of harm later. So that’s my opinion as someone unfamiliar w/ any definitive literature either way.

 

[frozenborderline]

I agree about ruling out potential diagnoses and treatments. I may say that some things--aluminum and EMFs come to mind--as being in my opinion extremely unlikely to be causing health problems (except maybe for people with very rare disorders), and I usually suggest experimenting to test the hypothesis in a scientifically reliable way, such as double-blind testing.

Well, what was suggested in this case was to NOT follow through with the objective testing that leads to a possible diagnosis of cci. Thankfully I did not listen to that advice, and I got an upright mri that lead to my diagnosis.

 

[sb4]

The first paper (Martin Pall's) seemed to be claims about claims. I once tried finding the experimental data backing the VCCG claims, but couldn't find it.

I can't remember if I posted this last time we talked on this issue but user Travis on another forum posted this which you may find interesting.

As far as I understand it, you can infer Ca flux through ornithine decarboxylase activity. "The changes in Ca²⁺ flux proceed and stimulate the ornithine decarboxylase activity".

 

[Wishful]

I checked Travis' posting, and I can't take it seriously. He says: "However: this only occurs with amplitude-modulate microwaves, and frequency-modulated microwaves have little effect." Furthermore: "This presumed carcinogenic effect also depends on both coherence time and modulation frequency, the latter of which is superimposed over the carrier frequency and encodes the spoken voice. For this reason, some speakers' voices could literally be more carcinogenic than others. A persons tone and volume cannot influence either the carrier frequency or modulation scheme, yet it is more-or-less synonymous with the modulation frequency."

If you look at a power spectrum for various types of modulation, they're going to look very similar at a glance. Most of the power will be close to the carrier frequency (2.4000 GHz for example), but for the same data transmitted, the overall width of the spectrum should be similar. Yes, they're different if you look at a detailed analysis, but human cells aren't capable of such analysis. I'm fairly sure that biomolecules don't have a strong resonance peak that would make them break bonds because the power level at 2.400007 GHz is slightly higher for speaker A rather than B. I can't see that the slight difference in power levels at a given specific frequency, which is the difference between AM and FM, can make a difference in biological effects. If those reports are showing such an effect, I'd assume artifacts of how the data is collected and analyzed.

There was a similar report showing that people who lived under powerlines had greater rates of cancer. Fear! Terror! Powerlines cause cancer!!! Later analysis showed that the correlation was with economic status: people lived under powerlines because they had lower income, and that's where they could afford to live, and the correlation between economic level and cancer held up regardless of power line proximity. Findings from such statistical analyses have to be treated with caution. Claims of correlation between modulation from different voices totally fails my 'does this sound plausible' test.

 

[sb4]

@Wishful I understand your point about not agreeing with that part of the post but what about the studies linked showing increased ornithine decarboxylase and Ca?

Is the only way EMFs can interact with biological systems through bond breaking? I suspect there are other ways.