T3 only - does anyone find they have to increas... - Thyroid UK

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T3 only - does anyone find they have to increase their daily dose over time?

tcpace profile image
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My wife has Hashimoto's disease. She had a hemithyroidectomy in 2009 and went T3 only in 2014 (at the suggestion of an NHS endo believe it or not). We understand that the Hashimoto's disease may eventually lead to failure of the remaining half-thyroid over time. Presumably that would that account for her having to increase her T3 dose to compensate for reduced T4/T3 output from the failing thyroid? At the last blood test, her free T4 registered 1.0 (range 10-20) which is presumably coming from the residual thyroid and her free T3 registered 4.8 (range 3.5 to 7).

I ask because she's planning to have a chat with her GP and would like to be in a position to explain why she needs her T3 prescription to be increased from 40mcg to 60mcg. Would it be reasonable to say that the thyroid is progressively failing (because of antibody attack) and an increased T3 dose is needed to compensate? Comments would be appreciated on whether the above line of reasoning is valid and, if possible, any literature references supporting it.

Incidentally we are aware of atrophic thyroiditis but that can apparently be ruled out at present because her last scan on the thyroid showed it to be a normal size.

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greygoose profile image
greygoose

I don't think it's as simple as that. If she is taking 40 mcg T3, then presumably her TSH is suppressed, and has been for some time. So, the thyroid would not have been working, anyway. On a smaller dose, with a measurable TSH, that argument might have worked - presuming the doctors knows anything at all about thyroid/Hashi's/all the rest, which he probably doesn't, anyway. But, just in case he does, I don't think that is a valid argument.

On the other hand, her FT3 is pretty low considering her dose, so she might have some sort of absorption problem in the gut. How does she take her T3? On an empty stomach, two hours after eating or one hour before, and well away from other medications and supplements?

tcpace profile image
tcpace in reply togreygoose

Thanks for your valued comments GG. In terms of taking the T3, she's not actually doing anything different now to what she's being doing for years. What has become apparent though is she doesn't function anywhere near as well on the 40mcg dose as she once did. It's obvious to us that she needs to be on a higher dose of T3 but it's a matter of how to get the GP to understand. For that reason, we were looking for some kind of logic to explain the need for an increased dose. Her TSH has been suppressed (typically 0.03) for many years now so, as you say, the thyroid isn't probably doing anything (although it does seem to be producing a little T4 despite the TSH suppression).

Maybe the way forward is to point out that the free T3 level is somewhat below the midpoint of the range and should really be well into the upper quartile. Dr Toft said something like that some years ago but I think it was in the context of taking T3 + T4 (and keeping TSH in range), rather than T3 only. It would be useful to have some evidence confirming that, for good health when taking T3, the fT3 should be towards the top of the range.

greygoose profile image
greygoose in reply totcpace

I don't see the difference between T3 only and T4+T3 as far as optimal levels are concerned. You don't need a lower level just because you're taking T4, and you don't need a higher level just because you aren't taking T4. They are not interchangable. And, there's no level that you should have. Most people need it in the upper quartile, yes. But that doesn't mean to say that everyone dose.

But, needs for thyroid hormone change, which is perfectly logical because everything else in the body changes over time. The amount you can absorb changes, activity levels change, other hormone levels change. It's unrealistic to expect to stay on the same dose for the whole of your life. And, a good doctor would understand that without making you jump through hoops to 'prove' you need it. He only has to look at her FT3 level to see it's low-ish, and if she's having symptoms too, then it's obvious she needs an increase in dose.

tcpace profile image
tcpace in reply togreygoose

I don't disagree with anything your say. Unfortunately my wife's GP may be loath to increase her dose, at least not without the say-so of an endo. With one exception, our experience with endos has not been good needless to say.

Toft addressed the situation where T4 only led to a suppressed TSH. He said that was OK as long as T3 was in range. He also addressed T4+T3 and said that this was OK as long as both T3 and TSH were both in range presumably because he thought it was necessary to mirror the natural physiological situation for someone without a thyroid problem . I have no idea how much T3 would have to be taken to achieve that because T3 at any significant dose level is bound to supress TSH. He apparently avoided commenting about T3 only presumably because TSH and T4 would then both be out of range. What I would like to see is evidence to the effect that T3 only is OK if close to the upper limit of the range, even though both T4 and TSH are outside their respective ranges.

greygoose profile image
greygoose in reply totcpace

Yes, I understand, but I don't think you're going to find it. I've never heard of any research being done on T3 only. And, the majority of doctors just don't like it.

tcpace profile image
tcpace in reply togreygoose

I was hoping that someone like diogenes may be able to chip in as he's better placed than most of us on these issues. Thanks for your observations though.

greygoose profile image
greygoose in reply totcpace

Then tag him. :) diogenes

tcpace profile image
tcpace in reply togreygoose

Good idea - didn't know that was available. Presumably you've already done it for me - if so, thank you.

greygoose profile image
greygoose in reply totcpace

Yes, it's already done. :)

For future use:

@ + pseudonym - @tcpace

a drop-down menu will appear

Click on the name you want in the menu and it will turn blue:

tcpace

The person concerned will than be notified.

Jazzw profile image
Jazzw

I think it’s reasonable to ask for an increase in dosage. As greygoose has said, you can’t use a thyroid failure reason but gut absorption issues might be key.

I remember reading years ago that a replacement dose of T3 is probably nearer 60mcg per day—obviously it depends on all sorts of variables but it’s not an unrealistic ask.

DippyDame profile image
DippyDame

When on T3-only signs and symptoms become the method of evaluating dose.

Tests were devised for T4 treatment not T3.

They are useful on smaller doses of T3 but once the dose increases both TSH and FT4 drop down and eventually become suppressed so tests are no longer a guide

This sends medics running for the hills because they don't routinely understand how T3 affects the body.

I need 100mcg T3-only to function ( I have a form of Thyroid Hormone Resistance and self medicate) and have had some interesting conversations with medics who were convinced I was killing myself. They leave me to it now!

It's a complicated process but basically we need to listen to our body. With experience we begin to understand when it is telling us something is wrong....as your wife hasdiscovered.

Her body may simply need a little more T3 and there are possibly several reasons why this is the case

Asking for an increase from 40mcg seems perfectly reasonable but jumping straight to 60mcg is far too much too soon.... fine tuning is important otherwise the therapeutic dose can be missed.

Adding a quarter tablet may be all that she needs

Wait 2/3 weeks and if there is no improvement try half a tablet

Any increase must be " Low and slow"

An endo should understand that 40mcg is not a an excessive replacement dose of T3-only although they will possibly consider 60mcg as a maximum dose

However you may find that a GP will revert to the endo who instigated the T3 protocol, or any endo, regarding an increase

You may find the following helpful

thyroidpatients.ca/2019/08/...

healthrising.org/blog/2019/...

I was particularly interested in Dr Lowe's approach.

Don't be put off by ref to CFS and FM!

onlinelibrary.wiley.com/doi... ( Tears study -Dundee)

Sorry....that's a long winded way of saying ask for an increase...or at least ask to trial an increase which may be viewed more positively!

Good luck

tcpace profile image
tcpace

Thank you DD for sharing your experiences and thoughts - much appreciated. Your suggestion about a trial sounds a good approach.

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