Thyroid Hormone Resistance

jyb

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When I first supplemented thyroid hormone a few years ago, I was puzzled by the fact that I don't respond to it. Cynomel, cynoplus, Thiroyd (NDT Thailand),... It's like eating a sugar pill, no response in terms of mood/heart rate/temperature, etc. I tried a range of doses, from less than 1/8th of pill to several pills at once. I could not make sense of this. Posting about this experience on this forum, only a couple members seemed to relate to the experience. It seems however that in recent years, more people have started writing about it on the internet.

From Wikipedia:

Thyroid hormone resistance (sometimes Refetoff syndrome) describes a rare syndrome in which the thyroid hormone levels are elevated but the thyroid stimulating hormone (TSH) level is not suppressed, or not completely suppressed as would be expected. The first report of the condition appeared in 1967.[1] Essentially this is decreased end organ responsiveness to thyroid hormones.[2] A new term "impaired sensitivity to thyroid hormone" has been suggested in March 2014 by Refetoff et al.[3]

https://en.wikipedia.org/wiki/Thyroid_hormone_resistance

From Dr Lowe:

n peripheral resistance to thyroid hormone, only the peripheral tissues are resistant. The pituitary tissue responds normally to a normal amount of thyroid hormone in the blood, and it decreases its TSH output when the blood levels signal that it should do so. Normal blood levels of thyroid hormone, then, properly suppress pituitary gland release of TSH, and keep the circulating TSH levels normal. What's important to realize in this scenario is that the feedback between the pituitary gland and the thyroid gland is normal, and both glands secrete normal amounts of their respective hormones. But the normal thyroid hormone levels are insufficient to override the partial resistance of tissues other than the pituitary--that is the peripheral tissues. As a result, metabolism in the peripheral tissues is subnormal. To speed peripheral tissue metabolism up to normal, the peripheral resistance patient must use large dosages of thyroid hormone. But the effect of these large dosages on the normally responsive pituitary tissue is suppression of the TSH. Thus, secretion of TSH, and its circulating level, are extremely low.

http://web.archive.org/web/20101030202007/http://drlowe.com/QandA/askdrlowe/resistnc.htm

Dr Lowe's reply makes sense to me, it seems like supplementing the thyroid can suppress my TSH to near zero and yet it does nothing. However, I have never tried the very high doses recommended in this situation.

On other forums it seems a few users have the same situation:

https://healthunlocked.com/thyroiduk/posts/130845602/no-response-to-high-dose-thyroxine-why

https://healthunlocked.com/thyroiduk/posts/131285373/high-dose-t3.-no-response.-thoughts

You'll see in the discussion one recommends to read Recovering with T3 from Paul Robinson.

A few more links to articles:

http://www.thyroidresistance.com/thyroid-resistance/
 

answersfound

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From my experience the whole thyroid resistance thing was a bunch of bs.
 
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jyb

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answersfound said:
From my experience the whole thyroid resistance thing was a bunch of bs.

Can you take several pills of cynomel and not feel anything? If not, this thread does not apply to you. Many people respond to supplemented thyroid and would feel extreme discomfort and high heart rate from taking large doses.
 

johns74

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You have increased your vitamin D only recently. Does it work better with your new vitamin D level?
 
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jyb

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johns74 said:
You have increased your vitamin D only recently. Does it work better with your new vitamin D level?

I only recall testing my D once. Test this summer shows my D was high. I would imagine every summer my vitamin D is normal or high. Not sure if I noticed anything previous years when I experimented with supplementing vitamin D. It's not as sunny right now and I ran out of T3 so can't be sure of any relationship to vitamin D.
 

johns74

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Well, without sources of T3 after the government shut down the mexican company, it's a shame we won't find out.
 
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jyb

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johns74 said:
Well, without sources of T3 after the government shut down the mexican company, it's a shame we won't find out.

I actually have some cynomel expired 6 months ago :D clearly wasn't using it much since I don't respond.

You also got no effect from thyroid supps? I'm sure there must be a pure T3 alternative somewhere but I'm waiting for more feedback to know which ones are potent.
 

johns74

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I'm a strong responder actually. Can only take 1/8 of a grain per day without going kind of hyper, but I was wondering if others, those who don't respond, do better when they have good levels of vitamin D. I got the wrong impression that you only now elevated your vitamin D.
 

HDD

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From Peatarian email:

"If you are eating enough protein, about 100 grams, and salt and thyroid, then I would consider the steroids--something might be interfering with your production of pregnenolone and DHEA. Things that could do that would be very low cholesterol, or a deficiency of vitamin A (retinol), or possibly other deficiencies.
If your cholesterol is above 200, and the thyroid supplements didn't warm you up, it's possible that something is interfering with your steroid synthesis, which might be a deficiency of something like vitamin A, or interference from something like iron or carotene. Have you tried a supplement of pregnenolone or DHEA? Were any other hormones, such as prolactin, measured? If you are taking the aspirin regularly, you should make sure to get vitamin K, from kale, liver, or a supplement. Anemia, like cold feet, is a common sign of low thyroid function."
 
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jyb

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HDD said:
From Peatarian email:

"If you are eating enough protein, about 100 grams, and salt and thyroid, then I would consider the steroids--something might be interfering with your production of pregnenolone and DHEA. Things that could do that would be very low cholesterol, or a deficiency of vitamin A (retinol), or possibly other deficiencies.
If your cholesterol is above 200, and the thyroid supplements didn't warm you up, it's possible that something is interfering with your steroid synthesis, which might be a deficiency of something like vitamin A, or interference from something like iron or carotene. Have you tried a supplement of pregnenolone or DHEA? Were any other hormones, such as prolactin, measured? If you are taking the aspirin regularly, you should make sure to get vitamin K, from kale, liver, or a supplement. Anemia, like cold feet, is a common sign of low thyroid function."

I considered all that over the years, I'm familiar with DHEA, progrest., pregne., etc supplementation. But assuming I was steroid deficient, I'm still not sure how it would explain lack of response to pure exogenous T3.

In the links I posted there are a few explanations given. One is deficiency in stuff like vit D and other things. The other explanation in the pubmed studies is due to a mutation.
 

Lucas

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Hello.
I starting taking NDT (TR. Tman from Thailand). Started with one grain going up to 4 grains. Nothing happened, still whit hypo symptoms. Get a blood test and my TSH was 0.015 and free T3 above range. Reduced to 1 grain for 6 weeks, get a new blood test, and Free t4 high, whit free t3 still above range, but whit not hyper symptoms, still felling hypo, whit fatigue, cold, low body temp.
I don’t know what to do. I had blood test results of a hyper person, whit hypothyroidism symptoms. So, maybe I had this thyroid resistance??
My vitamin D is at 80, so is not problem here. My cholesterol was 186 before NDT.
The only thing I am suspicious is that I had high ferritin, at more than 300. Can high iron blocks thyroid?
Also, I had a functional b12 deficiency as show in a MethylMalonic Acid test. Can b12 deficiency gives low body temperature?
These are the things I am trying to correct. I am taking IP6 to chelate Iron, and Methylb12 for the b12 deficiency.
 

tara

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I have no personal experience of supplementing lots of thyroid.
But wondering, did you have rT3 tested? I don't know the ranges, but maybe high rT3 could explain some of this?
 

kineticz

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Wow this is rare. I don't think a steroid or mineral deficiency is to blame.

Have you got any blood test results?

Vitamin B12 deficiency is said to be caused by low glutathione/excess oxidative stress, or genetic mutations.
 

drealism/h2o

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maybe it could be the particular medication..do you have gut issues? is your body able to absorb food and minerals properly...i know with me..i have a lot of hormone issues. and one of which is also adrenal too. i hope you are feeling better now...and it's not good to take too much too fast! better to be gentle with the body's absorptions..i had a doctor do that to me and it was not good!! it was causing more hypo symptoms along with hyper symptoms too...and major exhaustion too.
 

ilovethesea

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I wonder if some people who claim thyroid resistance are taking way too much T3 at once and it's getting inactivated. I know the STTM and Recovering With T3 people take huge doses. Before I know what I was doing, I experimented with 1/2 a Cytomel at once and would feel nothing.

"Unphysiologically large doses cause the liver to accelerate its excretion, leading to a very low level in the absence of frequent doses." - RP

(He was talking about T3 here.)
 

Suikerbuik

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johns74 said:
but I was wondering if others, those who don't respond, do better when they have good levels of vitamin D

John, I wonder what your line of thinking is here?
 

Lucas

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When I starting taking NDT my dose was half grain after breakfast and half grain after lunch going up to 2 grains after breakfast and 2 grains after lunch. Maybe too much at once?
Also, I don’t think that I had adrenal fatigue, since I take hydrocortisone 20 mg per day for a week and don’t feel better and had a little crash after this.
I will try NDT again but only after reducing my ferritin to 50 and taking b12 in the form of hydroxocobalamin, and will add reverse t3 on my next blood tests.
I hope I don’t had thyroid resistance because I don’t want to take t3 only since is hard to buy.
 

4peatssake

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Have you asked RP directly jyb?
You've talked about this before have you not?
 
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jyb

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4peatssake said:
Have you asked RP directly jyb?
You've talked about this before have you not?

Yeah I posted about this after I first supplemented thyroid years ago. Ray replied with the usual advice I was already implementing (use small doses).
 

4peatssake

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jyb said:
4peatssake said:
Have you asked RP directly jyb?
You've talked about this before have you not?

Yeah I posted about this after I first supplemented thyroid years ago. Ray replied with the usual advice I was already implementing (use small doses).
OK, yes that's what I recalled.
I remember your frustration around this.

I'd consider follow up with him, especially if you've made significant changes and/or improvements using other food/supps.
 
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