T3 only.: This might seem a bit silly, I saw my... - Thyroid UK

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T3 only.

beaton profile image
40 Replies

This might seem a bit silly, I saw my GP a month ago and asked him if I could go T3 only. So how should I feel a month on ?? Well generally a bit better,mood is less down,I'm more relaxed so sleeping better. I no longer feel so cold and temps are by a degree. I don't have a lumpy throat.No constipation and body hair is returning. I feel like I've taken off over tight underwear.BUT is that all I can expect??? Where should I go from here?? GP said try it and find out so I don't think he will have much input. Does anyone have experience of T3 only meds.???

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beaton
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40 Replies
Heloise profile image
Heloise

Are you taking T3 only now? and feeling those improvements?

beaton profile image
beaton in reply toHeloise

Hi Heloise,yes I was on T3/T4 but had a disagreement with my endo. So thought I would try this approach. Perhaps I'm expecting too much improvement in a month,I still have all the other issues.

Heloise profile image
Heloise in reply tobeaton

You may not be taking enough. And also it takes more than a month.

I was on one grain of Armour and started on 25 mcg. of T3 thinking it was equivalent to what is contained in Armour. I don't see a major improvement but was having difficulty raising my dose of Armour and now I am having the same difficulty with T3. I would like to go to 35 mcg. in the future if possible.

Your dose is very low and equal to about 100 mcg of levo. Is that what you were taking?

beaton profile image
beaton in reply toHeloise

Hi,I was on 150mcg. T4 before going onto 100T4 and 2x10mcg T3. Can't NDT. I was thinking about upping the T3 to 4x10mcg, but had a bit of a panic that I might overmed.

Thanks for responding.xx

Heloise profile image
Heloise in reply tobeaton

I'm no mathematician but I think you are just taking the equivalent to what you were taking on both straight T4 and the combo T4/T3. Try another 5 and see what happens for 3 days. That's when my overdose seems to show up.

beaton profile image
beaton in reply toHeloise

Thanks Heloise,might just try that.xx

puncturedbicycle profile image
puncturedbicycle in reply tobeaton

I've often heard that 1mcg t3 = 5 of t4 but my experience doesn't bear this out.

If you're taking a split dose you can always try a little more and you should know fairly soon if you've been overmed. The one time I went properly over I reckon I felt it within 5-10mins of taking my last dose of the day.

kosmickaz profile image
kosmickaz

I take T3 only. I am so much better than on T4 only and T4/T3 in combination.

When the T3 level is up I feel great..

However, I am still struggling - due I think the lack of a steady state of T3 due to its short half life / seasonal requirements (my requirements go up considerably in the winter) and the remaining adrenal compromise.

I am still being dosed on the TSH and my last FT3 was only 4.2 (TSH 0.05) - I suspect there is a pituitary / hypothalamus problem which is unrecognised...

I am happy to talk you you about it - writing is a challenge...PM me if you would like a chat

Karen x

beaton profile image
beaton in reply tokosmickaz

Hi Karen,Thanks for your reply. Bloods before starting on T3 only (T4/T3 combi) were, TSH 0.078, T4 13 (11-24) T3 5.1 (4.-6.8) Endo wanted to reduce T3 and up T4 saying T3 was too high. So I did the opposite. I am taking 3x 10 mcg. T3. I don't have any overmed. signs but wonder if I'm doing the right thing.

kosmickaz profile image
kosmickaz in reply tobeaton

I would have done the same. T4 suppresses the TSH and your T3 isn't that high. its not even midrange.

How are you feeling? How long have you been ill? Have you looked into adrenal function? Are you supporting the adrenals at all? Dr's checked RT3?? Oh look....a flying pig ;-)

beaton profile image
beaton in reply tokosmickaz

I was diagnosed in 2009 but seems I have probably been heading this way since 1979..

T3/T3 combi for about a year under registrar. Asked to see the endo. as I was dissatisfied with the attitude of regi.He was worse.Told me all my symptoms were NOT thyroid.He did order ACTH, 595-875,which I got after begging his secretary for the result he refused to tell me.

In myself I feel much better,more refreshed and relaxed. I haven't had RT3 checked,

Thanks so much for responding as I'm feeling a bit alone on this. xx

kosmickaz profile image
kosmickaz in reply tobeaton

If you feel better its a good indication you have done the right thing :-)

Trust yourself. My TSH was always suppressed on T4 only / T3 &T4 in combination - and I always felt awful. It was on indication of how I felt, but was told my thyroid was fine and I had CFS...depression...

It might be worth doing a salivary cortisol, and seeing if you can persuade the doctors to check a Rt3. Don't hold your breath though!

It can be a lonely experience, so I hear you. I don't see certain members of my family anymore - as they thought I was making all this up!! This caused the relationship to break down completely. That's why its so important that we all stick together. You can't know about something really unless you have been there yourself Xx

Aurealis profile image
Aurealis in reply tokosmickaz

Sad to hear about your family. It's so unfair that they're putting us through all this extra unnecessary hassle just because they don't really listen, or are totally dominated by some extremists in the royal college

kosmickaz profile image
kosmickaz in reply toAurealis

And don't forget the dinosaurs at the GMC...

They don't care about patients! They are promoting negligent practice. Frankly, its a disgrace.

beaton profile image
beaton in reply tokosmickaz

Yes total agree.xx

Rose2408 profile image
Rose2408 in reply tokosmickaz

Hey there! Just curious...does T3 also lower ths or just T4???? I want to drop T4 more & increase T3 but need my ths suppressed?!

kosmickaz profile image
kosmickaz in reply toRose2408

Synthetic / natural T3 does lower TSH as well...(probably more than T4 meds as its approx. 4 times more potent)

The effects of T3 and T4 meds can indirectly lower the bodies own intrinsic production of T3 and T4 by the lack of stimulation of the thyroid gland - produced as a direct consequence of the suppressed TSH.

Rose2408 profile image
Rose2408 in reply tokosmickaz

Thank you for that...I just noticed you saying T4 & not T3 & had a panic as I'm lowering my T4 gradually & replacing with T3 just to be able to incresse enough to totally suppresss TSH. So thank god it does!!...Cancer, no thyroid.

kosmickaz profile image
kosmickaz in reply toRose2408

BOTH T3 and T4 suppress TSH.

How are your adrenals working? This impacts on T4 conversion.

How are you feeling energy wise?

Was it a case of total thyroidectomy and you were otherwise fairly ok before energy / symptoms wise - or were you ill for a long period of time with thyroid symptoms before the op?

So much in the mix!

If you were stable - maybe your pre surgery TFT's could be a good guide / backup to stabilising your levels?

Its hard to know without knowing the whole picture.

Rose2408 profile image
Rose2408 in reply tokosmickaz

Thank you for this! I was ill for 3+ yrs prior to surgery last may...but I believe my thyroid was 'fine'...I am still tired but so much better after starting the T3! My suppressed tg is at 18.6 so there's still cancer & I've had some big ops & rai since then so I haven't really had time to recover... I'm taking 100mcg T4 & gradually trying to up my T3 to 60mcg (I'm on 40 now & coping) to get the tg down! I've got an adrenal tumor 1.9cm so not sure if its doing much...I'm not seeing my new endo till April so I'm trying to get it established before I see her so she won't take the T3s off me!! She's a ThyCa expert spec in clinical trials so I've got fingers crossed!! Struggling with hormones as I've had the TT & then hysterectomy & both ovaries out..:( my poor little body!!! Xx

Heloise profile image
Heloise in reply tokosmickaz

Thanks for the belly laugh!

kosmickaz profile image
kosmickaz in reply toHeloise

:-D

Clutter profile image
Clutter in reply tobeaton

I suspect you're undermedicated. I was prescribed 3 x 20mcg daily post thyroidectomy and prior to RAI.

Ask for your dose to be increased. If you are tested again, bear in mind that T3 suppresses TSH so dose should not be adjusted to TSH. FT3 should also be tested.

beaton profile image
beaton in reply toClutter

Thanks Clutter,just having a panic that I might overmed. I don't want to upset my GP,he's being so supportive so far.xx

kosmickaz profile image
kosmickaz in reply tobeaton

My GP thought i was over medicated with a TSH of 0.05 - FT3 was only 4.2 - I then developed pericarditis....

They are TSH blinded and don't seem to look at everything. Maybe have a look at the symptom list on TUK and keep a record so you can see if you have got better / worse.

Clutter profile image
Clutter in reply tobeaton

You'll feel it if you overmed, diarrhoea, racing heart etc. Will only take a few hours to wear off and you can skip next dose if necessary then increase more slowly.

beaton profile image
beaton in reply toClutter

Thanks Clutter.xx

shaws profile image
shawsAdministrator in reply tokosmickaz

Even though T3 has a 'short half life', it's effect in a single dose carries saturates each cell and explanation is below:-

January 30, 2002

Question: I’m a physician who has just begun using T3 in my practice. One thing I’m concerned about is the short half-life of T3. Shouldn’t patients divide their daily dose up and take part of it at least twice each day, or instead use sustained-release T3? It seems that this would allow the effects of T3 to continue through the day rather than stop midway or in the evening?

Dr. Lowe: The short time that T3 is in the circulating blood isn’t the limit of its beneficial effects on the body. When T3 binds to T3-receptors on genes, the binding regulates the transcription of mRNAs, and the mRNAs are later translated into proteins. The transcription and translation initiated by the binding of T3 to T3-receptors occur in waves, and these waves far outlast the T3 that started them at the chromosomes. Moreover, the newly synthesized proteins themselves far outlast the transcription and translation. As a result, a single dose of T3 will be long gone from the patient's system before he or she experiences most of the benefits of that dose—a molecular and metabolic yield that may smoothly spread out over one to three days. The "rocky road"

web.archive.org/web/2010103...

Some of the links within may not work.

kosmickaz profile image
kosmickaz in reply toshaws

I will check this out, thanks. I have been toying with the idea of 'one big dose' - I certainly feel better if I get the first dose of the day right.

I heard someone on here takes 180 mcg of T3 in one go - which to me sounds a lot!

Paul Robinson recommends muti-dosing....and I guess its trial and error what suits us individually. I so wish I could work out what i need - and at what time of year as it changes as it gets colder...its so confusing and there is so much in the mix!!

puncturedbicycle profile image
puncturedbicycle in reply tokosmickaz

Don't feel too worried if you can't take it all on board at one time. I found I was in a better position if I could get some stability and from there I tweaked one thing at a time, so as long as you're feeling better you're going in the right direction.

The good thing about split doses is that you only have to cope with the effects for a short time so can adjust pretty easily. I was getting lots of dips in energy so I tried the single dose. I prefer the single dose (esp as I keep forgetting doses throughout the day) but I think it was a bit too much so now I'm working on getting the dose right. Swings and roundabouts. :-)

kosmickaz profile image
kosmickaz in reply topuncturedbicycle

Hi there, how much did you take at once? And what are you doing now?

I am taking 27.5mcg at 6am, 15 mcg at 12.30 the 12.5mcg at 20.30...

Its not enough. GP is only prescribing 40 mcg.

beaton profile image
beaton in reply tokosmickaz

Hi I take 3x10 mcg. 6am 12.00 and 4.30pm Sleeping well so don't think I need a later dose,but might just add 5mcg. and see.xx

beaton profile image
beaton in reply topuncturedbicycle

Thanks Puncturedbicycle, Yes must admit if I'm not home I do sometimes forget my meds. but I don't think I'm brave enough to one dose,like you say,swings and roundabouts.xx

PinkNinja profile image
PinkNinja in reply tokosmickaz

Hi. I think I know which person you are talking about. She has diagnosed thyroid hormone resistance which is why she needs such a large dose. I thought my 100mcg was high but apparently it's upper end of normal. I'm back down to 75 at the moment, though :)

To be honest, I think different protocols suit different people. I multi dose but take most of mine first thing and a smaller dose at bed time. This bed time dose seems to necessary for me.

I also think multi dosing works best for most people to begin with. Often the body isn't functioning well when people initially start T3 so they don't seem to be able to cope with more than small doses in one go. Later, when they are more recovered, they may be able to take their entire daily dose in one go. I'm lucky that I could tolerate reasonable doses right away.

Paul Robinson's protocol is designed primarily for patients with adrenal issues. These patients can often only tolerate very small doses at a time until they become well.

It is quite a minefield! I'm still trying to get it right although I am so much better than when I was on levo.

Carolyn x

beaton profile image
beaton in reply toPinkNinja

Thanks CarolynB.xx

beaton profile image
beaton in reply toshaws

Thanks Shaws.xx

kosmickaz profile image
kosmickaz in reply toshaws

Hi Shaws,

I am looking for the T3 protocol by Dr Lowe and all the links seem broken - I am not sure whether this is because he is sadly no longer with us and the links have been taken down?

Do you know what it is or do you have a copy?

Thanks xx

shaws profile image
shawsAdministrator in reply tokosmickaz

Dr Lowe died two years ago and his site is now archived, so some of the links within cannot be accessed, unfortunately.

Aurealis profile image
Aurealis

You'll still have some T4 in your system so not on T3 only yet. On T3 only I increasingly had difficulty sleeping -zombie like in the end. I need T4. But it sounds like you've had some improvements already, so you've moved things in the right direction. Keep following your instincts.

beaton profile image
beaton in reply toAurealis

Yes Aurealis,I'm sleeping so much better sleep wise. I used to wake up after ten mins. or half an hour thinking it must be time to get up,I just couldn't relax enough,but now sleep through the night.xx

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