High dose thyroid, but still have symptoms?

Learner1

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Oddly, there hasn't been a comprehensive thread on thyroid hormones here.

My recent experience is that even on a substantial dose of T3 and T4, I am still experiencing hypothyroid symptoms, and respond pretty fast to additional T3 taken sublingually - head clearing and more energy when I've been in a funk. I was on T3 only for 10 years and then added T4 a couple of years ago. Currently, my FT4 is still at the very bottom of range while FT4 is slightly over range and my symptoms are hypo and never hyper.

One thing I've learned lately is that both T3 and T2 help mitochondrial metabolism, so I'm thinking that either my mitochondria are somehow demanding more or that the T3 isn't getting out of my blood and into the tissues where it's needed. Or both.

I've also had high thyrgobulin antibodies for years and have never seen an articulate description of his this affects hormone dosing or levels. Some people say these antibodies aren't real Hashimoto's and don't have any effect, but research says they do lead to hypothyroid symptoms. But, how does it affect levels of hormone and distribution into tissues?

Interestingly the studies on both ME/CFS patients and those with NTIS (low T3 or euthyroid sick syndrome) all have excluded patients who had Hashimotos or were in thyroid meds for hypothyroid, do there are really no studies a hypothyroid or Hashimotos patient with ME/CFS can go by (or take to their doctor), yet I know many of us have Hashimoto's and sluggish thyroids.

T3 also effects mitochondrial uncoupling proteins, UCPs. I'm trying to wrap my head around how this affects symptoms and his to test, track, and manage this element.

T3 converts to T2, which seems to be important for mitochondrial metabolism.

As many of us are in drugs and supplements, it seems that some can interfere with thyroid hormones.

Dr. Lowe apparently had some success with putting patients on enormous doses of T3, but it doesn't seem that this would gave helped infections, autoimmune issues, toxicity, etc. and actually lead to a cure for most, and too much thyroid can cause hyperthyroidism, which is dangerous, or osteoporosis.

As I've researched this, I'm very aware that UK and Canadian doctors and US doctors who scrupulously follow American Thyroid Association guidelines won't even test beyond TSH and FT4 most of the time and won't prescribe anything but T4. There are great forums for discussing these issues, which are very informative, but discussing the politics of that isn't productive here. It is also not productive to discuss NDT (natural dessicated thyroid hormone) as there is no individual control of T3 and T4 and all the products are filled with allergens many if us can't take.

I'm interested in others who've been on large doses of thyroid hormones (over 50mcg T3 and/or over 100mcg T4) and are still feeling hypothyroid which is driving fatigue symptoms.

How do we know thyroid hormone is getting to tissues it's needed in and how do we know the effect on our mitochondria? Do we believe lab values or which ones are best?
 

Wishful

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It's too bad that there aren't any T2 supplements on the market anymore, at least not the last time I checked. It worked great for me, even though T4 and T3 had no noticeable effect. To me, T2 is something people with thyroid problems should experiment with.

I still think that my Tsh was (is?) elevated due to elevated picolinic acid resulting from excess kynurenine production.
 

Wishful

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There are T2 supplements on the market.
Oh good, it's available again. Last time I checked, it was marked 'unavailable'.

How do you dose them, if you're already on T3 and T4?
<shrug> With caution? I didn't have any symptoms I could associate with T4 or T3 deficiency, so I didn't worry about it. The first capsule of T2 gave a very noticeable effect (temporary remission, bouncing with energy), so it was well worth experimenting further with. Supplemental T2 is likely to reduce a thyroid gland's output of T4, so factor that into your overall treatment. At one dose every 21 days, I didn't have any noticeable side effects.

If T2 did provide a noticeable benefit and a noticeable increase in T4/T3 deficiency symptoms, you'd have to figure out what's the optimum ratio for you. Maybe an endocrinologist would be able to help, but my experience with an endocrinologist makes me think that's unlikely. :grumpy:
 

Learner1

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Oh good, it's available again. Last time I checked, it was marked 'unavailable'.



<shrug> With caution? I didn't have any symptoms I could associate with T4 or T3 deficiency, so I didn't worry about it. The first capsule of T2 gave a very noticeable effect (temporary remission, bouncing with energy), so it was well worth experimenting further with. Supplemental T2 is likely to reduce a thyroid gland's output of T4, so factor that into your overall treatment. At one dose every 21 days, I didn't have any noticeable side effects.

If T2 did provide a noticeable benefit and a noticeable increase in T4/T3 deficiency symptoms, you'd have to figure out what's the optimum ratio for you. Maybe an endocrinologist would be able to help, but my experience with an endocrinologist makes me think that's unlikely. :grumpy:
Though I appreciate some input the premise here is to hear from other people already on high doses of T3 and/or T4 because labs showed they were hypothyroid, not to hear from people who aren't hypothyroid or having Hashimotos who are experimenting.

I've yet to meet an MD who knows what T2 is, but, I think you are correct that getting some sort of input before further complicating things would be wise. What is he half life of T2, for instance? What the dxngef of going badly hyperthyroid if slresgh on a high dose of T3 and T4? How, exactly are mitos affected and are there other things needed for T2 to support mitochondria?

And what about UCP2 and UCP3?
 

Wishful

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not to hear from people who aren't hypothyroid or having Hashimotos who are experimenting.
Well, technically I have been repeatedly diagnosed as hypothyroid and having Hashimoto's, and been repeatedly prescribed T4, even after explaining that I've already tried it for 3+ months with no noticeable effect. Doctors really have closed minds when it comes to thyroid problems that can be brushed off as simple hypothyroidism. It was minimal dosage though. I did try higher dosage, but that made my heart feel a bit jittery, but still had no effect on my ME symptoms.

I brought it up in this thread because if taking T4 and T3 isn't helping, maybe it's not getting converted to the right form of T2 in the amounts needed in the right place to do whatever the body is expecting it to do. Some people insist on doing a complete analysis of a situation before deciding on a solution. I'm more of a "whack it with a hammer and see what happens" kind of guy. :nerd: Taking that first T2 capsule was definitely the right procedure for me, since it worked. It seems like a safe gamble of $30-40 in return for a possible improvement. In my case, I already knew that iodine worked, and I asked myself the question: "Since iodine helped, but T4 and T3 didn't, is there anything else the body does with iodine?" The answer was T2, so it seemed worth trying.

What is he half life of T2, for instance?
It seemed to be short. When I tried taking 100 mcg every day, it stopped working after three days, and when I stopped taking it, my symptoms increased abruptly, and then decreased again in a mirror-image of how the T2 helped. I assume that was my thyroid system adjusting to an artificial change in T2. Since the effects did change that rapidly, I think that implies a short half-life.

As for why T2 affected my ME, my guess is that it boosted transcription of some RNA. I didn't even bother trying to guess which one, and I couldn't find any good information of what T2 does and how it does it. The important thing for me was that it did work well, even though I didn't know why.
 

Learner1

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Well, technically I have been repeatedly diagnosed as hypothyroid and having Hashimoto's, and been repeatedly prescribed T4, even after explaining that I've already tried it for 3+ months with no noticeable effect. Doctors really have closed minds when it comes to thyroid problems that can be brushed off as simple hypothyroidism. It was minimal dosage though. I did try higher dosage, but that made my heart feel a bit jittery, but still had no effect on my ME symptoms.
Hashimotos isn't dimple hypothyroidism. Did they prescribe T3?
I brought it up in this thread because if taking T4 and T3 isn't helping, maybe it's not getting converted to the right form of T2 in the amounts needed in the right place to do whatever the body is expecting it to do.
T3 and T4 both help. A lot. Just need a lot to reduce symptoms and move FT3 and FT4. How go we know if it's getting to where it needs to in the body?
Some people insist on doing a complete analysis of a situation before deciding on a solution. I'm more of a "whack it with a hammer and see what happens" kind of guy. .
Yes, but it's more pills to take and more money.
Taking that first T2 capsule was definitely the right procedure for me, since it worked. It seems like a safe gamble of $30-40 in return for a possible improvement. In my case, I already knew that iodine worked, and I asked myself the question: "Since iodine helped, but T4 and T3 didn't, is there anything else the body does with iodine?" The answer was T2, so it seemed worth trying.
Yes, but it's more pills and more money...
It seemed to be short. When I tried taking 100 mcg every day, it stopped working after three days, and when I stopped taking it, my symptoms increased abruptly, and then decreased again in a mirror-image of how the T2 helped. I assume that was my thyroid system adjusting to an artificial change in T2. Since the effects did change that rapidly, I think that implies a short half-life.
So, does one need to take FM's fixed, multiple times a day, like T2? What's the effect on bone health? On TSH?
As for why T2 affected my ME, my guess is that it boosted transcription of some RNA. I didn't even bother trying to guess which one, and I couldn't find any good information of what T2 does and how it does it. The important thing for me was that it did work well, even though I didn't know why.
T2 has significant effects on mitochondria. It also affects glucose metabolism and fatty acid oxidation, in addition to lowering lipids. These may be beneficial or dangerous in ME/CFS patients.

"3,5-Diiodothyronine: A Novel Thyroid Hormone Metabolite and Potent Modulator of Energy Metabolism" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6068267/
 

Learner1

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I couldn't find any good information of what T2 does and how it does it. The important thing for me was that it did work well, even though I didn't know why.
More info on T2... It can impair the HPT axis and reduce TSH, T3 and T4 in blood. It can also cause cardiac hypertrophy and used the alpha 1 receptor. All of these found like they could be concerning.... The attached discussed all if this and from it, it see s like the science is extremely lacking to know what the metabolic and long term consequences might be. I definitely want my doctor in the loop and not just randomly experiment.
 

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Wishful

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Hashimotos isn't dimple hypothyroidism. Did they prescribe T3?
No, all the doctors followed the "Tsh is elevated, take T4, problem solved" pattern. I had to ask for a prescription for the desiccated pig thyroid, just to see if it made a difference (nope).

Yes, but it's more pills to take and more money.
Sitting around suffering has pretty near zero chance of helping. T2 is just another option for gambling for improvement. But the lottery ticket or not; it's up to you.

So, does one need to take FM's fixed, multiple times a day, like T2? What's the effect on bone health? On TSH?
I needed one 100 mcg dose every 21 days. Higher dosage or higher frequency didn't help, and daily dosing made it stop working. At that rate, I didn't have to worry about side effects or optimum time of day. If you took a dose (or several) and did notice a significant improvement, then you could worry about how much to take how frequently and what side effects might be important. That's what I mean about over-analyzing: you could spend years figuring out the optimum dosage and worries about side effects ... and then find that it doesn't have an effect, so there's no need to take it. If T2 hadn't done anything for me after the first few doses, I probably would just have written it off as a lost gamble.

the science is extremely lacking to know what the metabolic and long term consequences might be.
See: if it doesn't provide a noticeable benefit, there's no need to worry about those consequences. Why worry about things that you don't need to?

The paper you linked to added a few new effects for T2, but none seemed to fit how it worked for me. What mechanism requires an abrupt rise in T2 to trigger it, and then lasts a consistent 21 days before abruptly failing? That obviously requires some sort of timing mechanism, which to me means a cell or internal cell-like structure.

"Very recently, Olvera (86) reported that in tilapia cerebellum 3,5-T2 specifically regulates gene sets involved in cell signaling and transcriptional pathways, while T3 regulated pathways related to cell signaling, immune system, and lipid metabolism."

Maybe T2 regulates specific gene sets in human brains. I'm guessing that no one has checked for that sort of thing. If T2 only works for my ME symptoms, it could require a set of specific gene combinations or other factors. That would be very complicated to figure out, especially since there's very little existing research into that sort of thing. That is why I favour the "Hit it with a hammer <or T2 or some other input> and see what happens" approach. The deep analysis approach is better suited to areas that have rich resources of past research.


"Dietrich (79) reported elevated concentrations of 3,5-T2 (0.59 ± 0.07 nM vs. 0.39 ± 0.04) in cardiac Nonthyroidal Illness Syndrome (NTIS) suggesting that 3,5-T2 elevations in NTIS could explain why patients with low-T3 syndrome substituted with T4/T3 do not benefit from exogenous TH administration."

That might be interesting for people with thyroid problems that aren't solved by supplemental T4 or T3. The thyroid system is definitely not as simple as doctors like to believe.
 

heapsreal

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I have a normal tsh for what its worth but had low temperatures normal 36.5c, i use the be anywhere from 35.8 - 36.1c. I tried thyroid to see if it would help cfs and for some weightloss. T3 at 25mcg per day and 40mcg pwr day, i didnt notice much at all. T4 at 50mcg on its own and with T3 and again noticed very little.

In the book, not the thyroid madness, it mentions adrenal fatigue and having low cortisol. Hydrocortisone on its own helps some but adding it to T3 not much of a change. The most energizing hormones ive found were adrenals ie pregnenolone and dhea as well as some hydrocortisone on occassions. After being on preg/dhea its hard to tell if they are helping but stopping them i notice general wellbeing decreases after a week of stopping dhea/preg. Not as energizing as it once was but still i wouldnt be without these supps.