Basically I had a full thyroidectomy years ago and take 60 micrograms of T3 and 125 milligrams of T4. I’ve been on this a long time and am obese and feel awful though 60mcg t3 and 125 mlg t4 is a massive amount. I did however at 5micrograms of T3 and the 125 of T4 feel great, ABSOLUTELY BRILLIANT TBH but lost the benefit and so it raised and raised to 60.
I just found out that some people build an insensitivity to t3 at the target cell receptor.
Maybe this can also explain why I feel terrible and am the size I am (120kg). And if so what can I do about it ?like taking a course of anti thyroid drugs for a while or whatever…….. any ideas are welcome as I feel terrible and though I can’t think information is helpful.
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zebady
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I'm a bit confused, here. Are you saying that you went from 5 mcg T3 to 60 mcg T3 in one go? Or are you saying that you slowly built up to 60 from 5? If the latter, how slowly did you go? It's very easy to over-shoot your sweetspot if you go too fast.
So, we really need more information, here. 60 mcg is not a massive amount if you need it - some people take more - I take around 75 mcg. But, I don't take any levo. So, were you a poor converter on levo only?
Do you have any blood test results to show us? On levo only, and on 60/125 mcg? Might be that you aren't absorbing very well at gut level. But only seeing labs will show us that.
I just found out that some people build an insensitivity to t3 at the target cell receptor.
I've never heard that. It's usually the other way round. People start out not being able to absorb T3 at a cellular level, and have to take huge doses. Then gradually find they need less and less. That was my case. Where did you read this?
Poor absorption at any level could explain your weight-gain, yes. But, first of all we have to prove the poor absorption.
Anti-thyroid drugs wouldn't do anything for you because you haven't got a thyroid. All they do is stop the thyroid making hormone. They wouldn't help with absorption or anything like that.
So, the first thing to do to sort this out is to post some blood test results.
Me too ...but I think zebady added 5mcg T3 to his 60mcg dose!
I just found out that some people build an insensitivity to t3 at the target cell receptor......didn't make sense so I thought he'd read about some form of RTH.....and dived in!!!
He's had a really, really tough time (according to his bio) and needs a lot of help.
Maybe I'm barking up the wrong tree, and I wish we had some labs, but thinking back to Dr Orr and his myxoedema patients in the late 1800s it sounds as if zeebag may be right. .....low thyroid hormone ...and particularly T3.
I have a form of thyroid hormone resistance (RTH) and need high dose T3-only to function.
Since you no longer have a thyroid gland you need to replace the thyroid hormones that are no longer produced.
I wonder if your T4 dose is your problem.
Do you know if you are effectively converting T4 to T3 .
To become active T3 must enter the nuclei of the cells
Low cellular T3 = poor health
Tests may show a decent level of serum T3 but if you do have a form of RTH then much of it may remain in the blood until it is metabolised and then excreted....having done almost nothing!
You said adding 5mcg made you feel brilliant....I'd say that's your clue!!
So, I'm not sure that 125mcg levo is doing you any favours and may just be converting to rT3 and being excreted.
I'd be inclined to suggest that you titrate levo down first and see how you fare on 60mcg T3-only.
It may not be enough ( or even too much!) and you may feel groggy as the body adjusts but once on T3 you can adjust by 5mcg doses at 6/8 week intervals
On that level of T3 we have to titrate the old way ( by clinical evaluation/ signs and symptoms)
Important to check your resting heart rate....I do that daily. Mine stays close to 65bpm
Increased rate may mean overmedication as will hand tremors....with outstretched arms.
I'd suggest you are suffering from cellular hypothyroidism rather than glandular hypothyroidism.
I had to read a great deal then self medicate in order to improve my health - I could barely function - the endo didn't agree with what I was doing but I was convinced that's what had caused me health problems for most of my life.
My GP thought I was killing myself but after some discussion she understands and leaves me to it....and sees the improvement.. She sent me for a heart scan. healthy heart!
IF....you have a form of RTH then the higher dose of T3 acts as a" battering ram" against the resistance and that "force" helps push some of the dose, via T3 receptors, into the nuclei of the cells where it becomes active.
The dose you need depends on how much T3 in the dose reaches the nuclei.....ie how big the push needs to be.
For various reasons T3 receptors may have over time "gone to sleep"... an initial effective dose may help reawaken some of them so that you will eventually need a lower dose.
Initially I needed 200mcg, I now take 75mcg
200mcg would have been very dangerous had I not had RTH
Respect T3!
ALSO...You spoke in an earlier post about taking T3 as an antidepressant....T3 is not an antidepressant it is a replacement hormone. If hormone level is low one symptom may be depression so, you aim to resolve the thyroid deficiency which will help resolve the depression.
There is a difference!
It's all rather complicated and this is a very basic explanation as you can see. It may or may not be your problem but the info might give you another avenue to pursue
My thyroid journey is explained in my bio if you are interested.
" Tests may show a decent level of serum T3 but if you do have a form of RTH then much of it may remain in the blood until it is metabolised and then excreted....having done almost nothing!"
My apologies if it is brain fog, but how does one know they have a form of RTH?
(Will read through your journey. My resting heart rate is suddenly over a hundred with Synthroid, after a thyroidectomy - when it was always high 60s/low 70s. I have noted it & am trying to figure this out.)
Many don't do well on Synthroid . I was on Synthroid after my TT and had many symptoms eg: palpitations anxiety high BP and more. The fillers in Synthroid caused many of my symptoms. Switching to another brand Levoxyl was a tremendous game changer for me.Best wishes.
We don't have the same options in Canada, unfortunately. As I believe lactose is one of the issues, and we don't have a generic without it. I talk to them about tirosint? as well but I just get nope and/or blank faces.
Re RTH : It's actually a complicated process based on trial and error and elimination of other things.....it took me about 2 years and I have had to self medicate and self diagnose.I had been diagnosed as hypothyroid over 20 years previously and levothyroxine was not effective and left me barely able to function
I had to read a lot of scientific papers and articles.
My bio should give you an outline.
My GPs were not happy about what I was doing, one feared I was killing myself, but after discussion and seeing that I improved they now leave me to it
There is no test for RTH....that is, there are no tests to measure the level of cellular T3
The problem appears to be cellular, rather than glandular hypothyroidism
It worked for me but I suspect it's not your problem
I'm not a medic so cannot advise....only share my experience.
However, back to you...
Firstly you need to have a (full) thyroid test to check hormone levels
With no thyroid your body will obviously lack thyroid hormones
I presume you are currently being medicated with replacement thyroid hormones
If so what has been prescribed?
T4 I guess
But...
Do you know if you were effectively converting before the TT?
The most important lab is FT3
T3 is the active thyroid hormone essential to every cell in the body
Low cellular T3 = poor health
So, having said all that, RTH is rare and may not be your problem ..... instead, most likely need T3 replacement possibly up to 60mcg after a thyroidectomy.
The heart needs a lot of T3 and yours is currently telling you that it needs help!
Sorry for the long rant ....what I suggest is that after you have been at least 6 weeks on a steady dose of replacement hormone you test at least FT4 and FT3.....TSH is basically irrelevant....
Those results will point the way forward ( possibly to more tests)
Right now your system is recovering from the TT which can affect levels ...and to a new medication regime.
Post those results and members can have a look at what is going on
Your endo sounds pretty clueless and seems to be creating more problems than answers.
Thank you so much DippyDame. Helpful. Will keep reading.
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@zebady hope everything gets worked out. So sorry to hijack a bit. But when one sees something interesting in a reply it is helpful to try to understand in the moment.
Your so so Spot On SD. We as thyroid patients are not aware how important nutrients are with both T4 meds and T3 meds. Nutrients help our meds to work the very Best for us. From my experiences I can say that no Dr ever ever mentioned to me nutrients . Knowingly that my labs showed that I was low in Iron, vitamin D etc.
Nutrients made a huge game changer for me how my thyroid meds work for me.
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