contemplating T3: Hello all, I want to ask the... - Thyroid UK

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contemplating T3

lutepavan profile image
17 Replies

Hello all, I want to ask the advice of this excellent forum once again. My Hashimoto's diagnosis came around two years ago (just under), and I've been on Levothyroxine for most of that time. Now that I've had quite a few blood tests (via Medichecks Advanced Thyroid Function Test), I'm finding that my T3 has stabilised at a consistent level between 3.13 and 3.7 pmol/L (range 3.1-6.8), typically about 3.5, and my T4 has stabilised at around 16 to 18 pmol/L (range 12-22). It looks to me as though perhaps I need a bit of help with conversion, and that I'd benefit from adding T3 to the mix. I'm currently on 75 mcg Levothyroxine and my TSH is very low--last checked it was 0.2 mu/L (range 0.27-4.2), but that was after a few months of 100 mcg Levo, which proved a bit too high a dose. TSH will probably be going up a bit now that I'm back on 75 mcg, but I'll try to make sure it doesn't go above 2 or 2.5.

As for how I'm feeling, the answer is that I'm very up and down and I'd like my energy levels to be better. I still have days when I feel pretty useless, though I do also have good days. I think I'd like to see whether I feel better with T3 added to the mix, and I'm in search of good info on what sort of T3 to take, and where to source it. (I doubt very much whether my GP will agree to prescribe it.)

So I guess the first question is whether experienced members of this forum agree that it looks like a good idea. If so, what sort and where to source it.

Oh, an additional question: is it worth testing for reverse T3, and, if so, who offers such a test?

Many thanks!

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SlowDragon profile image
SlowDragonAdministrator

How long since dose was reduced from 100mcg to 75mcg

Ideally get full thyroid and vitamin testing done after 8-10 weeks on reduced dose

Assuming levels are low

Why not try small increase….87.5mcg daily (cut a 25mcg tablet in half to get 12.5mcg to add to 75mcg )

Many people need to fine tune dose

Which brand of levothyroxine are you currently taking

Do you always get same brand

Looking at previous posts your ferritin was still pretty low

Presumably you are still working on improving ….as a bloke ferritin should be at least over 100 (30-400) …..ideally even higher

Are you on gluten free diet

Reverse T3 not worth testing.

Instead consider Dio2 gene testing

Assuming you test positive it can help get T3 prescribed on NHS

thyroiduk.org/deiodinase-2-...

Long wait to see NHS endocrinologist, quicker to start via private consultation

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3.

tukadmin@thyroiduk.org

lutepavan profile image
lutepavan in reply to SlowDragon

Thanks so much, SlowDragon .

<<How long since dose was reduced from 100mcg to 75mcg>>

Only about a week. I had been on 100 for a couple of months, and, before that, 75 mcg for many months.

<<Ideally get full thyroid and vitamin testing done after 8-10 weeks on reduced dose>>

Yes, that's my plan--another test scheduled in a couple of months.

<<Why not try small increase….87.5mcg daily (cut a 25mcg tablet in half to get 12.5mcg to add to 75mcg )>>

Seems like a good idea. I do indeed seem to be best with something halfway between the two figures. I have some not very old 25 mcg tablets still knocking around, so I can try that.

<<Which brand of Levothyroxine?>>

Now on Teva 75 mcg. Before that it was Mercury Pharma 100 mcg. During the months on 100 mcg, the chemist once substituted a different brand, and the substitution didn't make any noticeable difference to me. So no, I don't always get the same brand, though mostly I do. Also, for a while in the past I was on 50 mcg + 25 mcg in order to avoid Teva (just to see what would happen). Again, no noticeable difference.

<<Looking at previous posts your ferritin was still pretty low

Presumably you are still working on improving ….as a bloke ferritin should be at least over 100 (30-400) …..ideally even higher>>

Yes, it was very low, but I've made radical changes to my diet, notably the introduction of considerable amounts of red meat, and ferritin is currently at 78.1 (range 30-400) and rising. I'm aiming for 100+ . By the way, my haemoglobin readings are consistently lowish (most recently a hundred and twenty three [sorry! the number keypad on my laptop just died]), so I'm in the position of being borderline anaemic.

<<Are you on gluten free diet>>

Yes, for over thirty years (I'm 58).

<<Reverse T3 not worth testing.>>

OK.

<<Instead consider Dio2 gene testing

Assuming you test positive it can help get T3 prescribed on NHS>>

Brilliant! Thanks for the tip. I'll look that up.

<<Long wait to see NHS endocrinologist, quicker to start via private consultation

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3.

tukadmin@thyroiduk.org>>

Very useful! Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to lutepavan

Roughly where in U.K. are you

Here’s prescription numbers for England searchable by CCG area

58,500 prescriptions in last year

Typically that’s 6 prescriptions per person per year

openprescribing.net/analyse...

Price NHS is paying is dropping, making it easier to get prescribed T3

3 years ago …only one supplier Was £268 per 28 tablets 20mcg ……now £63 per 28 tablets with 4 suppliers

Private prescription enables access to Thybon Henning 20mcg tablets via specialist U.K. pharmacies at approx 50-60p per tablet

Typical dose of T3 is 3 x 5mcg (cutting 20mcg into 1/4’s )

Or 20mcg per day

I would be cautious about Teva …..it contains mannitol instead of lactose. Can change gut biome

lutepavan profile image
lutepavan in reply to SlowDragon

<<Roughly where in U.K. are you>>

Within striking distance of Darlington, Durham, Newcastle, York.

Thanks for the details about pricing, etc.

And thanks for mentioning the mannitol. As I've said, I didn't notice any difference between brands, but that doesn't meant that the Teva brand isn't harming me imperceptibly. Certainly not happy with the idea of messing up the gut biome anymore than it already is.

Jazzw profile image
Jazzw

How did you know that 100mcg of Levo was too much? What happened to your FT4 and FT3 when you were taking 100mcg?

lutepavan profile image
lutepavan in reply to Jazzw

Hi Jazzw . Thanks for replying. Back in February, on 75 mcg, my TSH reached 2.7, so I asked the GP to increase the dose to 100 mcg, which he did. This resulted in the TSH dropping to 0.2 by early May. So I asked him to lower the dose again, because I was under the impression that 0.2 was rather low. Simple as that. Was I wrong? As for the FT4, the increased dose raised my FT4 from 16.1 in Feb to 18.1 in early May (range 12-22). FT3 in that same period went from 3.13 to 3.7 (range 3.1-6.8). Seems that T3 is much lower in the range than the T4. That, plus my not feeling as well as I'd like, made me start thinking about trying to take T3.

SlowDragon profile image
SlowDragonAdministrator in reply to lutepavan

TSH dropping to 0.2 by early May. So I asked him to lower the dose again, because I was under the impression that 0.2 was rather low. Simple as that. Was I wrong? As for the FT4, the increased dose raised my FT4 from 16.1 in Feb to 18.1 in early May (range 12-22). FT3 in that same period went from 3.13 to 3.7 (range 3.1-6.8).

Had you remained on 100mcg likely to have seen TSH increase slowly the longer you body had to adjust to increase

FT4: 18.1 pmol/l (Range 12 - 22)

Ft4 was only 61.00% through range

Now you have reduced dose Ft3 likely to drop below range

As you are gluten intolerant it’s highly likely you need addition of T3 prescribed alongside levothyroxine

Many people when on adequate dose levothyroxine will have suppressed TSH

When on T3 alongside levothyroxine the vast majority of people will have suppressed TSH.

If you were to self supply T3, GP will invariably getting twitchy about suppressed TSH and reduce your levothyroxine prescription.

Far better, if at all possible to get T3 prescribed via endocrinologist. Assuming 3-6 month trial is on NHS and goes well, endocrinologist writes to GP to request they take over care and cost of prescription

If you start privately, it’s difficult but not impossible to get transferred to NHS…..depending which CCG area you’re in

pennyannie profile image
pennyannie

Hello Lutepaven :

The accepted conversion ratio when taking T4 only is said to be 1 / 3.50 - 4.50 - T3/T4 with most people feeling at their best when their conversion comes in at around 4 or under.

So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours coming in at around 4.85 ( I took your T3 as 3.5 and T4 at 17 from above post ) so this shows your conversion of T4 compromised.

We do need optimal ferritin, folate, B12 and vitamin D can you share these results and ranges plus an inflammation reading with forum members ?

As you have Hashimoto's there are the added issues of food intolerances and of ' healing the gut ' to consider for optimal absorption of the thyroid hormone replacement.

We generally feel at our best when our T4 is up in, or towards, the top quadrant of the range as this should in theory convert to a good level of T3 :

Currently your T4 is running at around 50% through the range, with your T3 struggling along at the bottom of it's range at not even 10% through the range.

Once on any form of thyroid hormone replacement the TSH is the least important number to track, and was initially introduced as a diagnostic tool to help identify a person suffering with hypothyroidism and was never intended to be used once on medication as then you track on T3 and T4 results.

Having Hashimoto's does throw another spanner in the works as your thyroid hormone production can become erratic as your gland fails.

You are liable to ' swings ' in symptoms, and read that some people skip a dose or two when they sense a ' swing ' coming and then when, inevitably the swing swings back, they find they need a dose increase as the gland becomes further compromised and disabled as this disease progresses.

Many people find the research of Dr Izabella Wentz thyroidpharmcist.com useful in dealing with Hashimoto's AI Disease.

lutepavan profile image
lutepavan in reply to pennyannie

Thanks pennyannie !

<<The accepted conversion ratio when taking T4 only is said to be 1 / 3.50 - 4.50 - T3/T4 with most people feeling at their best when their conversion comes in at around 4 or under.

So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours coming in at around 4.85 ( I took your T3 as 3.5 and T4 at 17 from above post ) so this shows your conversion of T4 compromised.>>

This is extremely useful, thanks. Most recent readings are 3.7 and 18.1, which results in a number of 4.89, which is even higher.

<<We do need optimal ferritin, folate, B12 and vitamin D can you share these results and ranges plus an inflammation reading with forum members ?>>

Most recent figures (9th of May):

Ferritin 78.1 ug/L (range 30-400)

Folate 15.8 ug/L (Range: > 3.89)

B12 149.000 pmol/L (Range: 37.5 - 150)

Vitamin D3 85.00 nmol/L (50-200)

<<As you have Hashimoto's there are the added issues of food intolerances and of ' healing the gut ' to consider for optimal absorption of the thyroid hormone replacement.>>

Yes, I'm very much working on that. I've been more or less on the "Autoimmune Paleo Diet" for six months now, and the numbers are slowly improving (antibodies still very high though), but I'm not feeling a great deal better.

<<We generally feel at our best when our T4 is up in, or towards, the top quadrant of the range as this should in theory convert to a good level of T3 :

Currently your T4 is running at around 50% through the range, with your T3 struggling along at the bottom of it's range at not even 10% through the range.>>

This suggests that perhaps it wouldn't hurt to increase my Levothyroxine dose slightly, and disregard the very low TSH reading. (It's just that my GP made the rather scary remark that "over suppressing your TSH with the treatment is not good for you especially your bones.").

<<You are liable to ' swings ' in symptoms, and read that some people skip a dose or two when they sense a ' swing ' coming and then when, inevitably the swing swings back, they find they need a dose increase as the gland becomes further compromised and disabled as this disease progresses.>>

Yes, I suppose it's early days and I have yet to learn to know my body and its reactions better.

As for Dr. Wentz, yes--I have her books and regularly read her newsletter updates, which I've found helpful at times. In fact, it was her series of videos which prompted me to get more serious about possibly giving T3 a try.

pennyannie profile image
pennyannie in reply to lutepavan

Ok, so ferritin and vitamin D still need building :

So, if taking D3 you taking the co factor MK7 - K2 - to direct this vitamin towards bones and teeth and not your arteries ?

Yes doctors say words like this but a low T3 causes a lot more debilitating symptoms and I believe, this is another old chestnut as the definitive evidence isn't actually there.

Taking T3 will automatically lower your TSH - so you're liable to face these words again :

If inflammation was high- this too contributes to reduced conversion as does any physiological stress ( emotional or physical ) depression, dieting and ageing, so we are all a work in progress and I'm currently try to hold back the time.

I'd wait a bit longer before trying T3 :

Build up that core strength of vitamins and minerals as then you'll be better placed to increase you T4 and make full use of this much more easily managed thyroid hormone first.

Undoubtedly as your gland becomes further disabled you may need to consider either introducing T3- Liothyronine to your T4 making a T3/T4 combo or switching to Natural Desiccated Thyroid which was the original treatment used successfully for over 100 years and on which Big Pharma launched it's T3 and T4 thyroid hormones, and introduced the blood tests and ranges on how to treat hypothyroidism in the middle of the last century.

lutepavan profile image
lutepavan in reply to pennyannie

<<So, if taking D3 you taking the co factor MK7 - K2 - to direct this vitamin towards bones and teeth and not your arteries ?>>

Yes, I'm taking both.

<<I'd wait a bit longer before trying T3 :

Build up that core strength of vitamins and minerals as then you'll be better placed to increase you T4 and make full use of this much more easily managed thyroid hormone first.>>

That sounds like good advice. The numbers are going in the right direction, after all....

Thank you again

SlowDragon profile image
SlowDragonAdministrator

It's just that my GP made the rather scary remark that "over suppressing your TSH with the treatment is not good for you especially your bones.").

TSH has nothing to do with bones ….it’s the message from pituitary to tell your thyroid to work

LOW Ft3 can affect bones …..as can high Ft3

Osteoporosis

thyroidpatients.ca/2018/07/...

Most people when adequately treated will have Ft3 at least 50-60% through range minimum

SlowDragon profile image
SlowDragonAdministrator

If you went back to 100mcg a day, you might experiment with taking 50mcg waking and 50mcg at bedtime

Can improve conversion rate and TSH for some people

Worth trying while waiting to trial adding T3

lutepavan profile image
lutepavan in reply to SlowDragon

<<<If you went back to 100mcg a day, you might experiment with taking 50mcg waking and 50mcg at bedtime

Can improve conversion rate and TSH for some people

Worth trying while waiting to trial adding T3>>>

Interesting idea. Definitely worth the experiment. But I take magnesium at bedtime. I presume I would have to change that?

SlowDragon profile image
SlowDragonAdministrator in reply to lutepavan

Yes…take magnesium minimum 4 hours before bedtime dose

tattybogle profile image
tattybogle

How did you feel when you were taking 100mcg ? if you felt better than you do on 75mcg , then please be aware that the TSH at 0.2 was not low enough to mean there was any problem with continuing on 100mcg if you preferred that dose . TSH between 0.04 and 0.4 has no greater risks than TSH in range ..( below 0.04 the 'statistical' risks do rise quite sharply its true , but 0.2 is a long way above 0.04 in TSH terms)

But it's definitely worth trying 87.5mcg first for a couple of months ... there's no point taking more thyroid hormone that you need to , and 12.5mcg adjustments are enough for most people to feel a difference in symptoms , and hopefully can keep the TSH closer to the the levels that stop GP's panicking about "everything they've ever read about supressed TSH"

0.2 isn't 'supressed' ..... it's 'near as dam it' in range [0.27-.4.2]..

0.001 is supressed.

For a link to the evidence for TSH between 0.04 - 0.4 .. please see my reply to this post (3rd reply down) healthunlocked.com/thyroidu... feeling-fine-but-tsh-is-low

lutepavan profile image
lutepavan in reply to tattybogle

<<How did you feel when you were taking 100mcg ? if you felt better than you do on 75mcg , then please be aware that the TSH at 0.2 was not low enough to mean there was any problem with continuing on 100mcg if you preferred that dose . TSH between 0.04 and 0.4 has no greater risks than TSH in range ..( below 0.04 the 'statistical' risks do rise quite sharply its true , but 0.2 is a long way above 0.04 in TSH terms)>>

This is useful, thanks. It's early days, but to be perfectly honest there's no great perceptible difference, though if anything my sleep was better on 100 mcg (weirdly). I might just try the idea of taking 87.5 (or alternating 75 and 100). I'll keep an eye on 0.04 threshold you mention. Thanks also for the link you included.

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