Can't stop Liothyronine (T3)

pattismith

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Yesterday, I decided not to take my small daily dose of T3.
I was just wondering if I was still needing it...

The answer is yes, definitely!

In the middle of the day, I started to struggle, the pain invaded my muscles, and my brain turned into marmalade...

In the evening, muscles where heavy and burning, moving and doing anything was a struggle...

I took some metoclopramide (I use it once or twice a week to try to boost a little my TSH), and this morning I took back my 6.25mcg T3 and some coffee...Life was back again!

Even if can see that my disease is still around and stronger than ever, it's nice to know that I do have meds that helps so much!
 
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If my partner didn't take her T3 all hell would break loose, and sometimes she asks me if she has take her daily dose :confused:

If she misses her T3 dose or is late taking it she can end up in bed with a migraine like illness, aches and pains, vomiting and a confusion.
 
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pattismith

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You can't stop t3 if you're on t3 only and your TSH is low because your thyroid is essentially shutdown and it takes time for TSH to come back up.
no my TSH is not low, it is in the normal range, but insuffisient to increase my T3.
Secondly, 6.25 mcg is not supposed to supress your HPT axis because your own body should produce every day by itself about 30 mcg of T3 physiologically:

https://forums.phoenixrising.me/index.php?threads/thyroid-hormones-natural-production.61383/

What is metocloprazine? I can't find much about it.
Sorry, I wrote it wrong, it's Metoclopramide, and yes it is a dopamine antagonist (antiemetic)
 

pattismith

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If my partner didn't take her T3 all hell would break loose, and sometimes she asks me if she has take her daily dose :confused:

If she misses her T3 dose or is late taking it she can end up in bed with a migraine like illness, aches and pains, vomiting and a confusion.
it looks like your partner and I are in the same boat!

How is your own fT3 level?

I checked my husband fT3 not long ago, and I discovered that he is almost as low as I do, with a TSH level close to mine.
We are together for 20 years, so I may have infected him with something that messed up his HPT axis as well.

Now he has an Acute Myeloid Leukemia, and it could be that the low immunity produced by the low T3 state was a possible favoring factor...
 

debored13

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This happened to me recently but with progesterone. Progesterone causes some weird side effects but I think the reason I've taken it for essentially a month or two straight despite the annoying side effects is how effective it is with pain relief. took a couple licks of it tonight and pain disappeared for a couple hours. I know my doctor would think i'm insane, so I'm trying to stay off it for a little while, but god...
 
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it looks like your partner and I are in the same boat!

How is your own fT3 level?

I checked my husband fT3 not long ago, and I discovered that he is almost as low as I do, with a TSH level close to mine.
We are together for 20 years, so I may have infected him with something that messed up his HPT axis as well.

Now he has an Acute Myeloid Leukemia, and it could be that the low immunity produced by the low T3 state was a possible favoring factor...
Seems that way. I do recall a former girlfriend having the same problems and she had to take T3.

I have no idea about my fT3 level. Doc said my Thyroid levels are normal, whatever that means.

That is concerning because my partner of 16 years had a post viral infection (Green gunge from the nose etc) a few years before we met. Could that have brought on the Thyroid disorder?
I have been suffering a similar issue. I've had Chronic Sinusitis and post viral ME/CFS for nearly a decade now.
And I do wonder if I was infected by my partner. Before this illness I was fighting fit.

I'm genuinely sorry to hear your husband has AML. Jeez, this has me concerned now.
 

Learner1

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I have no idea about my fT3 level. Doc said my Thyroid levels are normal, whatever that means.
Many of us have thyroid issues. Sometimes lab values look normal, but our bodies aren't properly distributing them across all tissues. But many of us have abnormalities easily found on a lab test, and treating these reduces fatigue and improves function.

Has your doctor done these tests, which comprise a "full thyroid panel"?
  • FT3
  • FT4
  • RT3
  • TPO antibodies
  • Thyrpglobulin antibodies
 
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Many of us have thyroid issues. Sometimes lab values look normal, but our bodies aren't properly distributing them across all tissues. But many of us have abnormalities easily found on a lab test, and treating these reduces fatigue and improves function.

Has your doctor done these tests, which comprise a "full thyroid panel"?
  • FT3
  • FT4
  • RT3
  • TPO antibodies
  • Thyrpglobulin antibodies
Thanks Learner1. (Bookmarked)

No would be my best guess.
I would have to pay for those tests in the UK because we are only given what's on the menu under the NHS.
Even a recent blood test came back all clear and my GP sounded happy that I was in 'good health'. I thought 'you gotta be kidding me right', I'm sick as a parrot and you're telling me all is well, madness.....
 

Learner1

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Ah, your NHS doesn't test FT3 because they got an outrageously bad deal for buying T3 from the manufacturer. So, rather than ginding a cheaper supplier, they just stopped testing for the need. Other UK folks do inexpensive private testing and buy T3 from Europe if they need it.
 
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Ah, your NHS doesn't test FT3 because they got an outrageously bad deal for buying T3 from the manufacturer. So, rather than ginding a cheaper supplier, they just stopped testing for the need. Other UK folks do inexpensive private testing and buy T3 from Europe if they need it.
I wasn't aware of that. This is something I will looking into for sure.

Thanks again!
 

pattismith

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Seems that way. I do recall a former girlfriend having the same problems and she had to take T3.

I have no idea about my fT3 level. Doc said my Thyroid levels are normal, whatever that means.

That is concerning because my partner of 16 years had a post viral infection (Green gunge from the nose etc) a few years before we met. Could that have brought on the Thyroid disorder?
I have been suffering a similar issue. I've had Chronic Sinusitis and post viral ME/CFS for nearly a decade now.
And I do wonder if I was infected by my partner. Before this illness I was fighting fit.

I'm genuinely sorry to hear your husband has AML. Jeez, this has me concerned now.
Dear Rob,

I have no idea what kind of infection it could be, but another member here on PR have the same issue (low fT3), and so does her wife....

And when fT3 is low, your immunity is bad, your white cell level is low, your red cell level as well, you can get more infections, and cancer cells will show up easily.

A scientific study published this year showed a subset of ME/CFS patients with low fT3....

So we are a group of people here with this problem, and the fact that all your thyroid panel is fine doesn't rule out a low fT3, because what should be investigated to make a good evaluation of your fT3 level is fT3/fT4 and fT3/rT3 and fT3/TSH.

It is still not known is the low fT3 is the problem by itself, or if it just a revelator of something else going wrong.

I mean, many channelopathies or mitochondrial diseases are worsened by hypothyroidism, so the low T3 may not be pathogenic by itself, but because of its association to another bug....

In that case, fT3 would just worsen another disease.
For now, there was not any investigation to see clinical outcome in CFS/ME with low fT3, are they worse or better? this is something I would like to know...
 

Wishful

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Even a recent blood test came back all clear and my GP sounded happy that I was in 'good health'. I thought 'you gotta be kidding me right', I'm sick as a parrot and you're telling me all is well, madness.....
My GP seems to accept that I have ME, and he seemed amused (not in a bad way) that according to the standard tests, I'm one of his healthiest patients. It's the doctors who didn't accept that I had a real disorder that were the problem.
 

Wishful

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Yesterday, I decided not to take my small daily dose of T3.
I was just wondering if I was still needing it...
A very useful test. I do that with my treatments too, since other treatments in the past had stopped working at some point. I also test foods that I consider 'safe' once in a while, just in case they've started causing problems. We do need to retest our assumptions once in a while.
 
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Dear Rob,

I have no idea what kind of infection it could be, but another member here on PR have the same issue (low fT3), and so does her wife....

And when fT3 is low, your immunity is bad, your white cell level is low, your red cell level as well, you can get more infections, and cancer cells will show up easily.

A scientific study published this year showed a subset of ME/CFS patients with low fT3....

So we are a group of people here with this problem, and the fact that all your thyroid panel is fine doesn't rule out a low fT3, because what should be investigated to make a good evaluation of your fT3 level is fT3/fT4 and fT3/rT3 and fT3/TSH.

It is still not known is the low fT3 is the problem by itself, or if it just a revelator of something else going wrong.

I mean, many channelopathies or mitochondrial diseases are worsened by hypothyroidism, so the low T3 may not be pathogenic by itself, but because of its association to another bug....

In that case, fT3 would just worsen another disease.
For now, there was not any investigation to see clinical outcome in CFS/ME with low fT3, are they worse or better? this is something I would like to know...
Thanks pattismith,

I never knew any of this because there is so much information regarding ME/CFS my head spins when I see the amount of post regarding different studies. This is something I will discuss with my partner because she has also read what you've written and is interested.

Thanks again!
 
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My GP seems to accept that I have ME, and he seemed amused (not in a bad way) that according to the standard tests, I'm one of his healthiest patients. It's the doctors who didn't accept that I had a real disorder that were the problem.
For a GP to accept you have ME is a step forward at least. No such joy here, still the same old bunch who seem to think all patients must be thick and not know what they are talking about. I'd change surgery but feel as though the attitude will be the same. Now they have me listed as fit as a fiddle I may as well stay away, for my own sanity.
 

Wishful

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I'm satisfied that I have ruled out other medical disorders. There isn't anything doctors can do for ME patients at present, so going to a doctor is just risking stress and disappointment, and wasting resources. I'll go to my GP if I come across a new test or drug that I think is worthwhile, but otherwise, this forum is more useful.