T3 Monotherapy for ME/CFS or FM?

[Jaye]

Supplemental iodine had the same effect on me; a small drop of tincture of iodine was enough. I assume that it was increasing my gland's production of T2. Surprisingly, supplemental T4 and T3 did not provide this effect despite their iodine content. I first noticed iodine's beneficial effects from a multivitamin/mineral tablet, which was 150 mcg. The iodine was much simpler to acquire (I already had it for cuts), so when I couldn't find a source for T2, I just switched to iodine.

If you try it and it does work for you, please let me know. Other people have tried T2 and not noticed an effect. I have several other unique responses to treatments and other factors, so the T2 response might be unique to me.

Hello! Sorry for reviving an old thread. I'm new to ME/CFS and trying to absorb info from these forums on basically anything that can get me out of being bedbound.

I'm curious about your taking a small drop of tincture of iodine for T2 improvements. Is that the same iodine in alcohol solution people usually use for cuts? Do you put a drop in something and drink it, or just right onto your tongue? And once every 21 days, like the other med you described?

I'm considering trying it to see if it gives me any improvement. Thanks for your time!

 

[Wishful]

Is that the same iodine in alcohol solution people usually use for cuts?

Yes. I first noticed benefits from a multivitamin/mineral tablet, and some experimentation identified iodine as the active factor. So, any source of bioavailable iodine should work ... if it is going to work for anyone other than me. If you like seaweed, that might be suitable, or you could check other sources that would provide ~100 mcg of iodine.

With the tincture, I usually applied a small drop to some starchy food, such as bread or pancake, and swallowed the bite quickly. That minimized the taste of iodine.

I took the iodine every 21 days, the same as with T2, and it had the same effect as the T2. The T2 product was unavailable for a while (the fad as a muscle builder faded?), so I switched to tincture of iodine. I've had that little bottle in case of cuts for maybe 30 years, so it's also cheaper than T2 capsules, and good for cuts! Not that I applied it to cuts more than a few times in that 30 years. I don't even know whether topical antiseptics are really effective on cuts (just checked: seems to be no).

I don't know whether iodine or T2 worked for me due to some unique combination of genetics, microbiome, etc. Maybe I have unusual thyroid cells that produce more T2 than normal. However, there's no reason why it couldn't help some other PWME, and it's a cheap, easy-to-get, and safe experiment. As I said, the amount of iodine I used was similar to the RDA for iodine, so it's not an unsafe dosage.

My guess is that the dose needs to provide an abrupt rise in iodine in the bloodstream, and that spreading it out over the day might not work. Taking the T2 daily made it stop providing the benefit.

I no longer need the T2 or iodine boost. I think I needed it for a year or so, but then I missed a dose and didn't have the symptoms rise up again. I still take a small drop of iodine every few months just to see if there's any effect, but so far there hasn't been.

 

[Nord Wolf]

I've been on thyroid medication, Levothyroxine, since 2015. I tried the natural version but never noticed anything and it didn't change my thyroid test numbers, so we stuck with Levo. However, over the years my thyroid continued to slowly decline in function, causing us to slow increase the Levo dose.

Interestingly, as the hypothyroidism increased, the ME/CFS symptoms increased. Other comorbidities developed along the way as well, like Hashimoto's, neurotransmitter dysfunction, dysautonomia/PoTS, and others.

Last year we finally figured out that every autumn my thyroid crashes, thyroid antibodies flare up, and all my conditions drastically worsen until a slow improvement come May... which is when spring typically arrives here in the northern New England Mountains.

After my full thyroid panel tests came in last October, and were quite bad, my dose of Levothyroxine was boosted at the start of November from 75 mcg to 100 mcg. I was also put on 25 mcg of Cytomel at the same time, which is an active form of T3 and more potent than Levo. Also, I was started on MedCaps T3, all because my hypothyroidism and Hashimoto's grew far worse than it had been. It took a few months, but recently I've been noticing a marked increase in overall energy and a decrease in levels of and amounts of PEM crashes. For the past 5 winters I've been house bound 95% of the time from November through April, and bedbound about 75% of that time. This winter, so far, I've only had to spend the whole day in bed 5 times. I've been able to make it out onto the back deck to sit in a chair about twice per week. I've also been able to sit upright in a chair inside for an average of 3 hours at a time with 2 hours reclining between. My PEM crashes are about 70% less severe and only last 2-3 days as opposed to the normal 7-14 days. For the past three years my need for supplemental O2, especially in autumn and winter, has gone from daily to maybe once per week starting in January this year.

There are some real shifts happening, and the only major things we changed was the thyroid medications and supportive supplements.

I have moved to taking all of the above, but leapfrogging the Levo dose to 75 mcg one day and 100 mcg the next. My recent TSH number was very low, but my T4 number was also very low. The T3 and Free T3 were looking good though. So, my doc wants to keep me on this regime for now and test again in May. My guess is we will drop the dose again for the warm season and then probably increase it once autumn returns. The severe thyroid drop in autumn and winter is a pattern with me.

 

[Wishful]

Interestingly, as the hypothyroidism increased, the ME/CFS symptoms increased.

Possibly due to a reduction in T2 production? T2 does play important roles aside from acting as a T3 substitute. It's involved with RNA transcription, so affects the whole body.

 

[Jadzhia]

Interesting I haven't come across this thread in my time here. I am familiar with some of this as I have Hashimoto's and take T3 myself. I was diagnosed as 'subclinical' because my labs did not have any values outside their ranges. Never mind I felt dreadful and could barely drag myself out of bed. I had full lab tests and that found very raised TPO and TG antibodies so thyroid disease was definitely there.

I may have thought no more about it if the levothyroxine I was prescribed had worked and made me feel better. It did not. I ended up reading many people's stories on what they had tried and did come across some who took T3 only, as well as all sorts of other regimes, some using natural dessicated thyroid, others with combos of T4 and T3. Only a handful managed to feel better, most were still trying to get to their 'sweet spot'. A couple were on what would be considered mega-doses of T3 (say 400 mcg daily!). It seemed like they needed increasingly more and more just to feel vaguely human. That sounds risky to me and I certainly would never try it.

I did end up sourcing and taking T3 myself to see whether I could feel any better. It does help my brain and did away with brain fog, but that's it, I still have my other hypothyroid symptoms. I take 62 mcg daily. I maybe should try more but I baulk at the idea, my FT3 levels are already high in my blood so I can't see how it would improve anything. Besides, it's costly and I have to buy it from Mexico so I just stay at my current dosage. At least my brain is OK! My GP knows I take it (interestingly they put I take 20 mcg on my notes!), maybe if more was noted they'd go into a meltdown, they would anyway if they saw my suppressed TSH and basically zero FT4 level.

I also take Iodine (200 mcg daily) which I've written about elsewhere, it really helps my digestion (along with 200 mcg Selenium and 400 mcg Molybdenum). I've not met anyone else who has this effect.

@Judee it was Paul Robinson's book that got me onto how to take T3 (I did use his circadian method for awhile, I do think taking the main dose in the early hours helps but again you have to experiment with that, with both the time and the amount). His books are carefully written and clear to read. He himself has hypothyroidism and T3 only is the only thing that works for him. The doctor that had you titrating your dose of NDT upwards every week (ye Gods, the people I knew who took NDT would have been horrified, they said you MUST NOT do that, but should only increase (after doing labs and seeing how you feel) every 5-6 weeks. Otherwise you will crash!) Some had certainly experienced that. The heart only uses T3 so yes it can have a big effect on some people, we're all different.

 

[Nord Wolf]

Possibly due to a reduction in T2 production? T2 does play important roles aside from acting as a T3 substitute. It's involved with RNA transcription, so affects the whole body.

Maybe. I don't think there is a test for T2 levels, is there? If there is it would be interesting.

 

[Wishful]

I doubt that a typical lab would have a test for T2 levels. I think before 1960, doctors knew that T2 "had no metabolic effect". There's probably not enough known about T2's effects for doctors to know what a certain measurement meant.

It's another of those "try it yourself to see what effect it has on yourself" things.

 

[Jaye]

I also have found finding and treating HSV2, CMV, HHV6, Epstein-Barr and chlamydia and mycoplasma pneumoniae to be critical in recovering, and I've seen many patients who finally, after years, find that one or more of these is dragging down their energy production due to mitochondrial fragmentation or other mitochondrial issues. I've also seen a lot of people learn of mycotoxins and/or arsenic, lead, or mercury toxicity which can also gum up energy production.

Hello another question about this.. how does one treat EBV and the others mentioned here? I asked my doctor about testing for and treating EBV (I did have mono in the past) and she told me there was no treatment for EBV.

 

[Learner1]

Hello another question about this.. how does one treat EBV and the others mentioned here? I asked my doctor about testing for and treating EBV (I did have mono in the past) and she told me there was no treatment for EBV.

There is no "official" treatment for EBV. However, it is worth treating, as it has been linked to the development of multiple sclerosis, ME/CFS, multiple cancers, and chronic EBV.

This is a discussion of some treatments:

https://www.mdpi.com/1420-3049/24/5/997

Practically, doctors have been prescribing:

• Valacyclovir - https://pmc.ncbi.nlm.nih.gov/articles/PMC2772668/
• Valgancyclovir - https://pmc.ncbi.nlm.nih.gov/articles/PMC5854009/. https://hhv-6foundation.org/all/val...al-for-treatment-of-hhv-6-ebv-in-cfs-patients
• Tenofovir - https://www.mdpi.com/1420-3049/24/5/997

I was on high dose valgancyclovir (1.8 g per day) for most of 5 years, then switched to tenofovir, which was more successful. I got the tenofovir through Mark Cuban's Cost Plus Drugs.