Should T3 be made optimal?: Hi, Recent... - Thyroid UK

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Should T3 be made optimal?

Stace268 profile image
73 Replies

Hi,

Recent endocrinology letter to GP says to keep T4 in top quarter and TSH on the Lower quarter, though he has not said about where T3 should be, wondering why this is as when T4 too high I feel more anxious and heart rate goes up too much, but with T3 higher I dont feel any of that

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Stace268
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73 Replies
greygoose profile image
greygoose

That's because they don't know anything about T3, what it is or what it does. They don't even test it for the most part. If asked, they usually say it's irrelevant. How wrong can they be!

Stace268 profile image
Stace268 in reply to greygoose

I thought the T3 and T4 should be balanced with one another ratios

greygoose profile image
greygoose in reply to Stace268

No, not really. They would be balanced in someone with a healthy thyroid. But, when you're hypo, your needs change and ratios are irrelevant. Myself, I need high FT3 and zero FT4 but it's a very personal thing, and you need what you need regarless of ratios.

Stace268 profile image
Stace268 in reply to greygoose

He said its not licenced in UK to do T3 only so I'm guessing they think T4 will push T3 up.. though it has not by all the tests done

greygoose profile image
greygoose in reply to Stace268

He's talking rubbish. You don't need a licence for that. But, I don't live in the UK, and I self-treat, anyway, because I'd had more than enough of the rubbish doctors talk!

T4 doesn't 'push up' T3, it converts into T3. But not everyone converts very well, so they need T3 added to their levo.

Stace268 profile image
Stace268 in reply to greygoose

I know that and so they it was a loose general term because levothyroxine is the gold standard according to them, I'm trying to find why T3 has not been mentioned in the letter although I am on it

greygoose profile image
greygoose in reply to Stace268

And I was trying to explain why.

Stace268 profile image
Stace268 in reply to greygoose

I was told that T3 and T4 should average one another, I know one converts to the active form though my problem is to do with Estrogen blocking thyroid activity and Dio1 problems I think plus I wanted to know why he said to increase T4 to be optimum but not mentioned T3 being optimum or in top quarter

greygoose profile image
greygoose in reply to Stace268

Well, I'm sorry, but you were told wrong. That is how it is in a healthy thyroid that functions normally. Talking percentage-wise, with a healthy thyroid the FT4 level would be around 50% through the range, with the FT3 slightly lower - don't know if that's what you mean by 'average one another'.

However, when you are hypo, aiming for those levels a) might be impossible, depending on how well you convert and b) probably wouldn't make you well, anyway, because those levels would probably be too low for a hypo. It doesn't matter what happens in a healthy (euthyroid ) person, when you are hypo you need what you need. And all the pontificating on the part of doctors won't change that basic fact.

But, who knows why doctors say what they say? I swear that half the time they don't know themselves, they make it up as they go along. Besides, an FT4 in the top quarter isn't necessarily 'optimal'. Optimal is how you feel, not a number of a blood test. And I'm pretty certain that he didn't mention T3 because he doesn't know anything about it. He can't tell you what he doesn't know himself.

If you want to try T3 mono-therapy - although it might not even suit you, doesn't suit everyone - then you'll probably have to self-treat - like many of us do, even in the UK - because you're obviously not going to get T3 from that endo.

Stace268 profile image
Stace268 in reply to greygoose

I already said I'm on T3 from that endo.

Vasiliki99 profile image
Vasiliki99 in reply to greygoose

It's a good reply , I think you are right it's hard to find T3 because doctors dint like t4 anymore they just don't they used to prescribe it it's true I felt ok on it but not that much different than on levo thyroid I heard that T4 should be at higher quarter for best results I had high T3 levels that's why they went mad but I felt fine enough and I think 20 toou h but 5 was quite good or 10

shaws profile image
shawsAdministrator in reply to Stace268

I cannot take levothyroxine at all.

I had severe palpitations with it and more so during the night since it was prescribed.

The cardiologist had to try to figure out what was going on but it was by chance that T3 was the most suitable for me.

T3 has now been my lifeline and has restored my health by eliminating awful symptoms.

Vasiliki99 profile image
Vasiliki99 in reply to shaws

Maybe it doesn't convert it doesn't react well with different people's health where do you get it?

shaws profile image
shawsAdministrator in reply to Vasiliki99

T3 doesn't convert and has to saturate all of our T3 recepter cells and heart and brain contain the most, The 'waves' are then sent out throughout our body during the day. T3 is an Active hormone.

My GP has continued prescribing T3 for me and he also raised it slightly.

The problems I had when on levothyroxine - it gave me awful palpitations during the night that kept me awake and I didn't rest properly.

Liothyronine has restored my health and everything has been resolved. My body is relaxed and symptom-free.

Thyroiduk.org.uk had a Scientist/doctor/Adviser and his name was Dr John Lowe. He had an accident that caused his demise some weeks later. He was an expert on T3 (liothyronine) and forthe patients it could resolve any symptoms

drlowe.com/thyroidscience/c... may retain for .

Me1157 profile image
Me1157 in reply to greygoose

In the UK NHS doctors cannot perscribe NDT ( amour thyroid), it was removed from the NHS medicine list as it became too expensive. They can add a T3 medication to the standard T4 medication, but it's easier to get an inview with God than to get them to do that. Go private in the UK, they can write perscriptions for NDT.

greygoose profile image
greygoose in reply to Me1157

I think you meant this reply for the OP, didn't you? Not me. :)

But, I don't actually think a GP can prescribe T3, it has to come from an NHS endo - at least for the first prescription, and then the GP takes over - hopefully! I think some people do manage to get NDT on the NHS, but it's very difficult.

Me1157 profile image
Me1157 in reply to greygoose

yes sorry, I replied to the wrong answer. However, I was unable to get NDT on the NHS. They removed amour thyroid in 2020 ( I think), due to price increases from the drug companies. You;re right an NHS endo can prescribe T3 in addition to T4 and then the GP can, but I was unable to get them to do that for me. As the endo only believed in standard thyroid treatment.

tattybogle profile image
tattybogle in reply to Me1157

just so you know Me1157 ....it is still possible to have NDT from NHS endo ( although extremely rare) healthunlocked.com/thyroidu...

Me1157 profile image
Me1157 in reply to tattybogle

Thx for letting me known I couldn't get it from my NHS endo, she was useless and told me it was removed from the NHS as they deemed it unreliable. She basically said, if I did what she said....Which was reducing my meds....and after being on Levey for about a year, she might add in some T3. She was all about the TSH. So I fired her after two unfruitful visits if not being heard...I'd had enough and heard enough.

jgelliss profile image
jgelliss in reply to greygoose

Yes ! Yes! And Yes. I don't convert my T4's well and adding a small dose of T3 helps me .

Kandahar profile image
Kandahar in reply to Stace268

Following this comment, Stace, self medicate, following advice from endo (if he makes sense!). UK is too expensive. I get Tiromel 25mcg from abroad at around £11.50 for 100 tabs. Plus post of around £15. Obviously, I buy about six packs at a time. Just as well because I’m on 75mcg a day! Message me for name of online company.

Stace268 profile image
Stace268 in reply to Kandahar

Would I be able to get this also, I've missed this message 4 months ago 🤦‍♀️ and will PM you if okay

Jaydee1507 profile image
Jaydee1507Administrator in reply to Stace268

⚠️ IMPORTANT! When you receive a message with a recommendation, please do not assume it is genuine!

Scammers are joining the forum on a very regular basis and messaging members with their assertions that they have successfully purchased xyz medication from zyx source.

First, do check the profile of the member that sent you the message. (You can find their profile by searching for their name in the member list here healthunlocked.com/thyroidu...

Are they a long term member with an active forum posting history? (Just be cautious and check with admin)

Or are they a recently joined member with little or no posting history? (Do be very suspicious and check with admin)

**** Scammers even join our forum and post a 'fake' story about their thyroid journey, that includes mention of self sourcing their thyroid meds. This is to encourage members to ask them where they purchase their medication without prescription.****

-------

Once you have what you think may be a genuine recommendation, you are strongly encouraged to message an Admin to ask whether the admin team have any feedback on the source you've been given.

Please also tell admin the member name/s that messaged you so that we can check them out if necessary.

Admins are not allowed to recommend sources, but we can tell you what, if any, feedback we've received about the source you've been given.

⚠️ Don't part with your much needed money until you are as sure as you can be that the source is genuine.

Read the full post: healthunlocked.com/thyroidu...

Stace268 profile image
Stace268 in reply to Jaydee1507

Are they genuine?

Jaydee1507 profile image
Jaydee1507Administrator in reply to Stace268

If they do message you with a source you need to ask me by private message only.

State what source has been suggested and by which member please.

Forum guidelines prohibit us from discussion of sources in the open group.

Stace268 profile image
Stace268 in reply to Jaydee1507

OK thank you for making me aware, if this person was scammer you would be aware already?

Jaydee1507 profile image
Jaydee1507Administrator in reply to Stace268

I have sent you a private message.

shaws profile image
shawsAdministrator in reply to Stace268

My body would not respond to levothyroxine (T4) - it just gave me horrible palpitations - particularly during the night.

On T3 - and by following the advice of Dr. John Lowe (now deceased) I have recovered my health. I have no clinical symptoms and the new GP in the surgery increased T3 and it has made a huge difference to how 'I feel' -which is pain-free and have normal health.

p.s. I think your GP just doesn't know very much about the dysfunctional thyroid gland and that would mean some patients cannot improve their health without T3 as they will only be offered T4.

I follow the advice of Dr. John Lowe (now deceased due to a bad fall that caused a bleed in his brain). He was also an Adviser to TUK.

drlowe.com/thyroidscience/c...

Gemmab1982 profile image
Gemmab1982 in reply to greygoose

What’s the optimal levels for all of them

greygoose profile image
greygoose in reply to Gemmab1982

There aren't any optimal levels, there's only what makes you feel well, and that varies from person to person. Optimal is how you feel, not a number on a lab test. But, I doubt if anyone would feel weel with an FT3 under 50% through the range.

jgelliss profile image
jgelliss in reply to greygoose

GG Thank you for your intelligent post. Everyone has different needs and set points. For example, I need higher T4 and less of the T3 to feel my optimal after my TT. It proves exactly as you said it's not about ratios.

greygoose profile image
greygoose in reply to jgelliss

Exactly. :)

shaws profile image
shawsAdministrator in reply to greygoose

You have made the statement "about T3 or what it does". You are so correct as I've found that GPs have llittle knowledge of what symptoms would indicate a problem with the thyroid gland.

I felt very unwell and myTSH 100 and still told I had no problems!

greygoose profile image
greygoose in reply to shaws

They understand very little about any of it. But I've had at least two doctors tell me they have no idea what T3 is, even when I told them that it's also called triiodothyronine or liothyronine. They'd just never heard of any of those names.

shaws profile image
shawsAdministrator in reply to greygoose

That's shocking if GPs or Endos make the above statement to a patient 'that they don't have any knowledge about dysfunctional thyroid glands'.

Patients suffer badly and we need medical personnel to have been trained properly on what is the purpose of hormones and how to keep them at a level that restores health to patients.

They should refer their patients to a local hospital to consult with Endocrinologists (hoping they have some awareness of a patient who has a dysfunctional thyroid gland and not responding very well to levothyroxine!)

greygoose profile image
greygoose in reply to shaws

Some hope of that! I've seen many endos and none of them had a clue! One endo said to me: you can have T3 if you want it, but it won't do you any good! That was the level of his knowledge!

Brightness14 profile image
Brightness14 in reply to greygoose

My first visit to an Endo and the last. I asked about Vitamin D to be tested, she didn't know what it was and had to look it up on her computer. Then I found this site, the best thing that has ever happened to me.

Me1157 profile image
Me1157 in reply to shaws

My local endocrinologist available on the NHS - only believed in the TSH and standard thyroid treatment. When I questioned her about a full thyroid blood panel with antibodies she almost blew a fuse. I saw her twice and told my GP I was totally disatified with her approach and wouldn't go back as she's clearly not a thyroid DR. I see a private Dr now. Ask questions when you see an endo about their speciality....are they endo's who have specialized in diabeties? Or are they continuing their education in thyroid? The biggest red flag for me is when they only go by the TSH - and believe that standard levethyroxine is the cure all medicine. For me the best medicine is amour thyroid and my TSH is usually zero. It's the blance between the free T3 and T4 that makes the difference between being ill or healthy for me.

in reply to shaws

I reckon they don't want to know and play dumb/be deliberately obtuse.

buddy99 profile image
buddy99 in reply to greygoose

Yup, I had an endo tell me that T3 has no function. Must not have been on the exam. Or he won his license as an endocrinologist in the lottery. Who knows? :D

jgelliss profile image
jgelliss in reply to buddy99

Some Endo 's sound like they bought their license. I'm not kidding. I have been to some Endo's that told me if I come across any interesting articles on thyroids I should forward it to them. Maybe that is a better sign. They showed interest in learning. 🤷‍♀️

Marinaaa profile image
Marinaaa in reply to jgelliss

Well, you know, worst students in every class also have the right to work....😂😂

jgelliss profile image
jgelliss in reply to Marinaaa

It's so sad that in Medical Academia lowered the bar so low. We are the recipients of this kind of care unfortunately.

shaws profile image
shawsAdministrator in reply to buddy99

His response shows that he appears to have no knowledge of anything to do with hypothyroidism. Especially when a patient is very symptomatic and undiagnosed.

Me1157 profile image
Me1157 in reply to shaws

So sad the state of the medical help available for thyroid problems. We're still in the stoneage where reseach and real help is available. I hope you found a Dr that could help you.

jkozlow3 profile image
jkozlow3 in reply to Me1157

We’re still in the stone ages for medicine, period. 100 years from now they’ll be laughing at how little we knew about medicine and how to treat medical problems in 2023.

shaws profile image
shawsAdministrator in reply to Me1157

I love the new GP inthe surgery as I don't need to worry.

If I do have a problem I phone him and he provides a prescription and I pick it up at the local pharmacist.

Me1157 profile image
Me1157 in reply to greygoose

spot on

nightingale-56 profile image
nightingale-56 in reply to greygoose

When I was first treated, it was said that TSH should be in the bottom quarter of it's range, FT4 at least half-way and FT3 in the top quarter of it's range. Recently FT3 seems to have been forgotten!

jimh111 profile image
jimh111

The pituitary secretes TSH in response to lower fT3 / fT4 . The system generally works to preserve T3 levels. With levothyroxine monotherapy fT3 is lower and fT4 higher. If they targeted average fT4 it would give an fT3 that is rather low. So, they target a high normal fT4 as this delivers an average fT3.There are many faults with this strategy. The combined fT3, fT4 may be too high or low for individual patients. When fT4 is lowish there is a form of T4 to T3 conversion (type 2 deiodinase) which takes place within important tissues such as the brain and skeletal muscles.

When fT4 is high there is more T4 to convert but it takes place in different tissues, supplies T3 to the blood but doesn't contribute so much to local levels in e.g. the brain. In most cases this doesn't make much difference.

There is also evidence that higher T4 levels are associated with cardiac problems and cancer.

There is now enough evidence that levothyroxine monotherapy should not be used but endocrinologists turn a blind eye.

Stace268 profile image
Stace268 in reply to jimh111

Terrific as I have family history of cancer, aneamia and heart problems on the other side. Does anyone know if can just take T3 in UK as endocrinology said its not licenced only combination

jimh111 profile image
jimh111 in reply to Stace268

Sorry, your question isn't clear. Liothyronine is licensed in the UK and can be prescribed by itself or with levothyroxine. In general for most people it would make sense to have levothyroxine with a little liothyronine (or NDT) so as to reflect normal levels. Some people with more complex forms of hypothyroidism need more T3.

Me1157 profile image
Me1157 in reply to Stace268

It sounds like NHS endocrinolgist - you'll need to find a good private thyroid Dr like I did that actually knows what to do. Most endos specialize in diabeties and don't understand the thyroid as well as they should when giving expert medical advice that can affect you. The Private drs can perscribe Amour thyroid ( NDT), and the NHS Drs can only percribe levethyroxine - since 2020? As the cost went up. They can add a T3 to the T4 medication though, but for me it took too long to get them to hear me. So I gave up and went private. Sounds like the dr you saw, hasn't got a clue about thyroid health issues.

Eyes-wide-shut profile image
Eyes-wide-shut in reply to Stace268

Hi just to add to licensing discussion. There is huge variation across UK NHS endos. T3 is licensed but is highly costly compared to T4. So a lot of endos and especially GPs very reluctant to prescribe it.

Plus there is the added problem of when you’re trying to get the balance right (for you and personal as greygoose has said) Uk doctors only test TSH and T4 levels. Again this is about costs. T3 test is either a more costly test than the other two or because doctors don’t believe it necessary have decided T3 shouldn’t be measured.

NHS is very hit and miss as to who you see. Seeing a private and knowledgeable Dr is often the only way but of course not all of us can afford it.

I wish you well and I would raise with the Dr or GP about ‘costs’ of treatments rather than as them questions about thyroid stuff which they may or may not understand. NHS Drs hands are tied by funding and costs not by medical expertise. 🙏

DandyButch profile image
DandyButch in reply to Stace268

Hello, I was on levothyroxine only, as prescribed by my gp, following elevated TSH blood test.

I felt dreadful, even when doses were increased following further blood tests.

I never felt 'better' at any point. Despite frequent visits to my GP, I was given meds for my persisting symptoms. I was rattling.

I was only referred to endocrinology NHS,

when I told my gp that I was going to stop the levothyroxine as I felt better before I even went on it.

The Endocrinologist I first saw told me that all my symptoms (I completed the form provided via this platform), were because of Vitamin D!!??? He did however prescribe liquid levothyroxine to try.

This made no difference to my symptoms.

Due to my lack of faith in him, plus the fact that the letter he sent to my GP was full of lies and false facts, I contacted the endocrinology dept and requested a different endocrinologist, which was actioned, but I had to wait 5 months for an appointment.

Lots happened in between.

When I spoke to my new endocrinologist, I was no longer on levothyroxine (my choice). After listening to my history, without prompting, she immediately put me on trial of liothyronine 5mcg x 2 daily.

This was in February 2023. Within a couple of months, I could see the improvement, although slight. Since June I have been on 10mcg x 2 daily, and again have noticed a gradual slight improvement. My next appointment is October, I hope to have another increase.

Just to re-affirm that T3 only is necessary for some people, as greygoose on here can vouch for.

It was recommended on this forum, to obtain various tests for T3 and Vitamins and minerals and non-conversion, however due to lack of funds, because I lost my job due to my lack of good health, I was only on benefits which don't go far on necessities let alone extras.

Good luck with your endeavour.

The NHS doesn't address the vital importance of hormones, particularly thyroid, needed for health.

Stace268 profile image
Stace268 in reply to DandyButch

How did they test for conversion issues ?

DandyButch profile image
DandyButch in reply to Stace268

They didn't test for conversion and don't on the NHS. They don't even test T4, let alone T3. I was amazed when the Endocrinologist, after I had explained what had happened and the fact that I had been off levothyroxine for months, suggested T3 Liothyronine. This I had asked for, to the previous useless Endocrinologist, but he just put me on liquid levothyroxine, which made no difference. He was the one who said all my symptoms were caused by Vitamin D!!!!!???After reading the difficulties people have had on this forum, regarding T3, I was lucky.

GreenCardigan profile image
GreenCardigan in reply to jimh111

I’m worried now ! my mother died in her early sixties of thyroid cancer , I have an under active thyroid and have been on Levothyroxine monopoly for several years now ,

Stace268 profile image
Stace268

Any averaging

Tests
greygoose profile image
greygoose in reply to Stace268

that's a really weird sort of graph. Not sure what it's saying. Why all the dates? Are your results always the same.

I'm afraid I have no idea what you mean by 'averaging'. It would not appear to be applicable. But, if your FT3 is 4.3 and your FT4 is 18, and the ranges are the ones we usually see - 3.1-6.8 (T3) and 12-22 (T4) - then these results show that you are a poor converter. And that's all they show.

radd profile image
radd in reply to greygoose

gg,

The graph is within the NHS app that stores a patients test results and offers a display of previous so variations can be observed. A screen shot is not really helpful.

SlowDragon profile image
SlowDragonAdministrator

There are many members on Levo plus small dose of T3

But only a small minority on T3 only

It’s a case of trial and error what mix works for each individual

Fine tuning

Always same brand

Adjusting Levo dose up or down by small amount

Or

Adjust T3 dose

Only change one at a time and retest 6-12 weeks later

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

On any replacement thyroid hormone we need optimal vitamin D, folate, ferritin and B12

Frequently necessary to supplement

Is your hypothyroidism autoimmune?

Looking through previous posts I don’t think you have ever tested Thyroglobulin (TG) antibodies

NHS won’t test TG antibodies as your TPO antibodies are negative

You will need to test privately

Stace268 profile image
Stace268 in reply to SlowDragon

Thanks for tips I don't think it's hashimotos, why is it important to test TG antibodies anyway?

SlowDragon profile image
SlowDragonAdministrator in reply to Stace268

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Significant minority of Hashimoto’s patients only have high TG antibodies

Have you ever had ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus BOTH antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Petalrugbaba profile image
Petalrugbaba in reply to SlowDragon

This is very helpful thankyou SlowDragon. I am on levothyroxin and NDT (erfa). I stop Levo 24 hrs before a test but when should I stop taking the NDT before tests ?

SlowDragon profile image
SlowDragonAdministrator in reply to Petalrugbaba

Day before split Erfa as 2 doses with last dose 12 hours before test

Do you normally split NDT anyway

Knackeredandcross profile image
Knackeredandcross in reply to SlowDragon

If you take ndt as one dose in the morning do you still need to split please? 🙏🏽

SlowDragon profile image
SlowDragonAdministrator in reply to Knackeredandcross

Ideally yes

radd profile image
radd in reply to Knackeredandcross

knc,

No, you don’t have to split NDT before testing if you don’t usually split dose. See pinned link for explanation .. .. healthunlocked.com/thyroidu...

Petalrugbaba profile image
Petalrugbaba in reply to SlowDragon

Thankyou SlowDragon. No I take 30mg erfa in the morning and 50mg Levo in the evening before bed.

SlowDragon profile image
SlowDragonAdministrator in reply to Petalrugbaba

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

and ideally split NDT day before test

Petalrugbaba profile image
Petalrugbaba in reply to SlowDragon

Thankyou so much , that is really helpful x

shaws profile image
shawsAdministrator

My body reacted well to T3 (liothyronine) alone and symptoms resolved. I am now prescribed T3 and a littleT4 daily.

I feel well and am sympton-free,

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