Suppressed TSH & taking T3, question please? - Thyroid UK

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Suppressed TSH & taking T3, question please?

turquoisea7 profile image
69 Replies

Quick question;

do people taking T3 just not worry about suppressed TSH?

(I mean personally, I don't mean in terms of trying to get it past so-called medical practitioners etc)

Is the <0.03 TSH only considered a 'worry' on T4 alone? (again I mean personally not by 'medics')

Just wondering as I'm not clear and whether the same concerns about Afib apply on T3 or mixed T3/T4.

thank you

69 Replies
jimh111 profile image
jimh111

The risks of a very low TSH are similar for people on T3 or T4 although there is some evidence that T4 carries a higher risk. An additional consideration is that many people who need T3 has a TSH that is low when fT3 and fT4 are average, their pituitary is underperforming.Ultimately there is some risk but many patients don't have a choice. Research into why patients need higher T3 doses should be given high priority.

turquoisea7 profile image
turquoisea7 in reply to jimh111

thanks for this.

Charlie-Farley profile image
Charlie-Farley in reply to jimh111

I’m convinced not being diagnosed and THEN not being adequately treated ….for years even decades will ultimately lead to the deterioration of the ‘system’ for want of a better word. Once the person does get treatment (my optimistic hope for all) the ‘system’ may be so irretrievably damaged only high doses of T3 might rectify or mitigate. This might not explain ALL instances, but I suspect a fair few.

I’m utterly convinced my finding the forum quickly and then implementing the recommendations QUICKLY is the main reason I’m doing well on Levothyroxine only.

Looking at any biological or environmental system, if it is left to degrade you can permanently lose functionality. This not earth shattering knowledge. We all intuitively know this. Perhaps only earth shattering is the fact that this is not understood by the medical profession…..

Lalatoot profile image
Lalatoot

My TSH is undetectable. It has been since I started combo. But I feel well and I no longer have the palpitations, anxiety and other dire symptoms I had when I was on 100mcg levo and my TSH was 0.19 (0.27- 4.5), my ft4 was 60%through range and my ft3 17% through range.

turquoisea7 profile image
turquoisea7 in reply to Lalatoot

Thanks for this @lalatoot

Imaaan profile image
Imaaan in reply to Lalatoot

Where does your free t3 and free t4 hover now whilst on combo treatment? I'm always curious to know the levels of those that have struggled in the past with palpitations, tachycardia or high heart rate

Lalatoot profile image
Lalatoot in reply to Imaaan

I ended up on 100mcg levo and 7.5mcg lio. My TSH is undetectable, my ft4 is usually 50% and my ft3 72%

Imaaan profile image
Imaaan in reply to Lalatoot

Really appreciate this, thnxs.

jimh111 profile image
jimh111 in reply to Lalatoot

Your TSH is a good example of what I was writing about above. On average your combined fT3, fT4 we’re a bit below average but your TSH was low. You end up with a very low TSH when on a reasonable dose of hormone.

This is why I refer to a ‘low TSH ‘ rather than a ‘suppressed TSH’ because the low TSH is not due to suppression by high hormone levels.

Lalatoot profile image
Lalatoot in reply to jimh111

Exactly and only 7.5mcg lio added to the 100mcg levo has been enough to make me well.

Charlie-Farley profile image
Charlie-Farley in reply to Lalatoot

I’m so happy every time I read someone feels well 🤗 Don’t let anyone muck you about humour no one Lalatoot .

Made my day 😊👍

Lalatoot profile image
Lalatoot in reply to jimh111

Thanks too jimh111 I shall remember to describe it as low rather than suppressed when I need to speak to medics .

jimh111 profile image
jimh111 in reply to Lalatoot

… and point out it is subnormal not suppressed.

Lalatoot profile image
Lalatoot in reply to jimh111

Thank you.

Eeyore100 profile image
Eeyore100 in reply to jimh111

My first GP test since introducing T3... < 0.05 miu/L [0.27 - 4.2] Thyroid function test Report, Borderline

I think I shall use their terminology 😉

SassyMH profile image
SassyMH in reply to jimh111

Hello. Can you explain to me why subnormal not suppressed, it may me helpful for me at my next appointment. Since I had my thyroid removed (cancer) and radioactive iodine treatment my TSH has been <0.03. Initially I was just on Levo but felt awful and couldnt function now I am on Lio too and feel much better. My TSH is still <0.03 so no difference. Can this be explained?

jimh111 profile image
jimh111 in reply to SassyMH

The most common reason for TSH not recovering is a period of thyrotoxicity, perhaps from a period of over-treatment or elevated hormone levels due to e.g. Graves' disease. If hormone levels have been high for a substantial time the 'axis' - the response of TSH to lower fT3, fT4 - does not respond adequately.

Also, a healthy thyroid secretes some T3. Some people are more dependent on this T3 than others and cannot manage on levothyroxine alone.

I use the term 'subnormal' when the pituitary is secreting less TSH than you would expect for the person's fT3, fT4 levels.

SassyMH profile image
SassyMH in reply to jimh111

Thank you for taking the time to explain

turquoisea7 profile image
turquoisea7 in reply to jimh111

yes low a more pertinent description, and my problem precisely. difficult to be suppressed when your Frees are rubbish.

Witchinghour profile image
Witchinghour

I have only felt well when my TSH was low, most recently 0.02.

I don't worry too much about any potential side effects; I'd rather live a shorter, filler life than live a longer life on levo-only.

All I was doing on levo was surviving. There was no living.

Something is going to get me so if the pay off of living a decent life now is osteoporosis then ... so be it.

turquoisea7 profile image
turquoisea7 in reply to Witchinghour

thanks for this, I keep hearing so many varieties of the same comment. I suspect existing on the sofa is setting me up for osteoporosis anyway.

tattybogle profile image
tattybogle in reply to turquoisea7

Yes .. that is exactly the point . i was well enough to do strenuous physical activity (albeit in short busts) , well enough to cycle up (short) hills, well enough to climb around and balance on scaffolding and wield a hammer whilst up there (even if it had to be a little hammer) , well enough to be inspired to go out and buy decent food (even if i had to cook it the next day ) .. well enough to run a productive garden...

Dose was reduced a bit too much.... bicycle became a coat rack for over a year , gardening had to be abandoned ., 'ping ~ cuisine' became all too common and nobody else could use the sofa because it became 'mine'...... and the thing is, even though my dose was rectified and i'm now much better again.. the whole process of 2 reductions then one increase took months and cost me a loss of muscle tone and presumably bone strength that frankly i'll be lucky to get back .

A2C3 profile image
A2C3 in reply to tattybogle

Sorry to hijack but I’m interested to know if you think you returned to where you were before your dose reductions?x

tattybogle profile image
tattybogle in reply to A2C3

Physically, perhaps i have got back to where i was , more or less ~ it took the best part of a year to get there , but i was able to be pretty physically active again over this summer / autumn without any problems i went up scaffolding with power tools and the bike is back in use and no longer a coat rack ... i'm not very active just now , but i never am in winter , so that's not a worry ..... but there are 'other' consequences .... i lost a shed load of confidence and self reliance, (and pride), during that period ... i was 'let go '/ sacked from the part time carers job i had, 'cos i was struggling more than the people i was being paid to help .., i never used to worry about finding work when i need it , because i had confidence i could 'deliver' , but now i'm scared of applying for work and not being able to deliver, (and the reference will probably look pretty crap) ...i had to sell my van because i couldn't get it together to mend it before the MOT, realistically i'll never be able to afford a similar vehicle now, which also limits future work options ,.... I had a sideline working from home that paid very well , i had to let that go during this period, and the customers with it ,and it's not something that can just be picked up again, even though i could manage the work again now.

So even if i am back to where i was physically .. it's affected my entire financial setup in a way that feels pretty permanent at the moment ... but we'll se what next year brings.. maybe i'll be able to put it all back together again.

A2C3 profile image
A2C3 in reply to tattybogle

That sounds awful, I hope you get something sorted finance wise, you sound extremely resilient so I’ve got every hope you will.

Yeah I got back into cycling but Endo wanted to reduce my t3 to raise my TSH, since reducing at the end of Aug and increasing back I can’t seem to get the levels of fT3 back that I had before I did a 60 mile cycle at the end of Aug! I hope I can get back there like you did!!

Thanks for replying and I hope something positive comes along for you soon x

Charlie-Farley profile image
Charlie-Farley in reply to tattybogle

Have you ever explained the impact on your whole life that caused to the doctor/s in question? tatty I salute you - you are amazing and inspiring.

tattybogle profile image
tattybogle in reply to Charlie-Farley

yes .. it made a 10 minute appointment take about half an hour , there was a certain amount of raised voiced from us both, and i think he must have pushed his panic button under the desk ( i'm assuming they must have one ?) as there was a ? receptionist/ someone who clearly had her ear to his door as i left.

Doris11 profile image
Doris11 in reply to tattybogle

So sorry to hear this 😌 I am fortunate to be retired early! but that was due to anxiety and depression (Nursing)! burn out id say! I basically diagnosed my self as had symptoms! but wouldn't be able to work now and I'm only 57! I'm glad you feel better now 👍 but I do give myself a hard time since being diagnosed with Hypothyroid 😑

Charlie-Farley profile image
Charlie-Farley in reply to Doris11

please don’t be hard on yourself. It takes a while to adjust and if you are determined to be as well as you can be rather than humour the doctors things get better. There is a video on YouTube with Dr Midgely discussing treatment of hypothyroidism- on point.

youtu.be/y99UDJIxdz8

turquoisea7 profile image
turquoisea7 in reply to Charlie-Farley

Are there any UK petitions? If not, why?

tattybogle profile image
tattybogle in reply to turquoisea7

petitions , to gov't ? are of limited use ... if you get enough signatures the issue will be raised (it already is raised and is ongoing in the house of lords). they will then raise the issue with whichever bit of the health service is relevant , and they will say "we'll look at it, and get back to you" and if it isn't something they want to do they will kick the can down the road by saying "we've looked at it , and the current evidence say's...." . and the Gov't will say." the evidence from the professionals involved says ...."

guidelines and, more to the point , the people on the committees who make them , are the real problem here , Gov't policy hasn't got a lot to do with it .

turquoisea7 profile image
turquoisea7 in reply to tattybogle

so....that all sounds hopeless again then.

tattybogle profile image
tattybogle in reply to turquoisea7

not hopeless , no .

There has been plenty of movement forward , the pace is glacial. true .. but if there was an easy fix to this complex mess , it would have been fixed already.

There are many factors to the problem , but one of the main reasons it remains a problem is some senior medical professionals and researchers who are actively preventing any progress because they have a fixed view of the issues involved ie. that people who have normal bloods and complain they still have thyroid symptoms are mistaken ,and are just attributing 'everything that ails them' , (including psychological/ lifestyle/personality issues), to their thyroid.

Charlie-Farley profile image
Charlie-Farley in reply to tattybogle

don’t forget the biggest cause of inertia!

Medical Male Egos- sadly the main players holding everything back are mostly men. We do have a few “knights in shiny armour” - they know who they are!

Doris11 profile image
Doris11 in reply to Charlie-Farley

I wonder if this has eve been brought up in the UK government?

tattybogle profile image
tattybogle in reply to Doris11

yes . some members of the house of lords are currently involved . but unfortunately it seems the minister has just changed.

last time i watched , the minister was asked by lord Hunt / or lord Kamall i forget who , to get NHSE to 'pull their finger out' ( or words to that effect) on the issue of getting all the different CCG's to follow the T3 prescribing guidelines as written rather than block / limit them as some ccg's are currently doing .

From reply to me on another post, from TaraJR

"Lord Hunt brings T3 up as often as he can! We heard that NHSE is doing a refresh of its T3 guidance. Patient groups are involved, but it is hard... ...Now of course there is yet another new health minister in the Lords just when we were getting something with the previous one Lord Kamall. "

Charlie-Farley profile image
Charlie-Farley in reply to Doris11

as tatty said - I have my own opinions on how it might be framed.

1tuppence profile image
1tuppence in reply to Charlie-Farley

Thank you for this Link Charlie-Farley. It was fascinating..... do you know if there were any positive outcomes?

tattybogle profile image
tattybogle in reply to 1tuppence

if i remember correctly ,the outcome when it eventually happened was very dissapointing , and Lorraine Cleaver was/ is very P*ssed off

1tuppence profile image
1tuppence in reply to tattybogle

MMMm it was an interesting watch and listen. Chair seemed less involved with the importance of what was said by both John and Lorraine than others. Why I wonder was "time" such an issue?

Charlie-Farley profile image
Charlie-Farley in reply to Charlie-Farley

 cllano thought I’d tag you in as you are in Scotland- and you have hypothyroidism and you are in training. You are in a unique position. This video, on the string this message sits in, exemplifies the gaping hole in training. I am also a trained scientist (not medical) and everything Dr Midgely asserts is on point. It is an incredible situation when you have to repeatedly explain to your GPs how to interpret data (blood tests). I’m so lucky to be able to self advocate, but there are too many who can’t and get gaslighted. The problem is systemic. The training is inadequate. The more doctors come to rely on tests and ‘ranges’ the greater the need for them to be trained to read, understand and interpret them properly. Statistics is a conceptual subject. If I had needed to be able to do the math that drives statistical packages I would have been lost 😱 but the concepts are not out of reach. My statistical knowledge sits at a fairly basic level, but more than enough to understand the limitations, uncertainty and relevance of what is before me. Please read lived experience, not only answers to your own questions and…..

Keep your head down and don’t make too many waves but take heed. People like you are our hope for the future.

It comes to something when Cardiology are producing papers on effects of thyroid disease, because endocrinology are not moving the conversation forward.

😊👍

turquoisea7 profile image
turquoisea7 in reply to Charlie-Farley

It's not just about self-advocacy. You were / are lucky enough to have a GP who has actually taken notice of you. In spite of doing absolutely everything right and arguing my corner with all the power of a high-flying academic background, I still have a whole practise of w*nkers who simply refuse to take the blindest bit of notice of anything I say. You were very lucky that someone listened.

Charlie-Farley profile image
Charlie-Farley in reply to turquoisea7

turquoisesa7 I’m so sorry they are not listening 😱. Are all your engagements verbal?

turquoisea7 profile image
turquoisea7 in reply to Charlie-Farley

Aside from the imaginary physical ones involving those not-so-small hammers!! no I'm kidding, yes I have written. I have written to the head of the practise, inc all the quotes and references. Reports, not as classy or detailed as yours, but with all the necessary. The last GP I had to deal with after all this effort was worst of the lot, completely employed reverse logic, i.e. your bloods are normal (FT3 30% through range normal) and therefore you are not if you don't agree that you feel well. He refuses to believe anything I say, including the fact that there is such a thing as minimum recommended bodyweight dose. Everyone should be fine on a max of 100mcg, and if they're not, well they're liars, or it's not their thyroid.

Charlie-Farley profile image
Charlie-Farley in reply to turquoisea7

he’s a liar and an F wit. And he knows nothing of how the range for these blood tests is derived nor how to use them - the range is there for a reason. Disgusting. The Midgely video so succinctly lays out the problem with regards to diagnosis and treatment. It is so crystal clear. I would be embarrassed if I were a doctor and saw that.

turquoisea7 profile image
turquoisea7 in reply to Charlie-Farley

thanks for the sympathy. I have been calling him worse than that. He actually disputed the minimum dose (I actually know someone about half my size who is a patient of his on the same dose as me), and then just kept telling me I'm not normal. By then I had lost the strength to start the, genetic/10-20% of people can't function well on T4, conversation. Next I guess I have to do the genetic test. But all this, my friend, is why I feel hopeless. Have an appointment with a specialist next week, no idea whether that will be a waste of money or not, but I am daily sobbing, 'I can't do this any more', I just want to go outside, I just want to walk, to see the sky. And this nightmare is for the rest of my life. I can't bear it.

Charlie-Farley profile image
Charlie-Farley in reply to turquoisea7

Not for the rest of your life. You fight to get on a therapeutic dose and we try to help however we can. Sometimes I feel impotent. Want to help as many people as possible and get through to them. Where is the inroad to changing this medical incompetence?

turquoisea7 profile image
turquoisea7 in reply to Charlie-Farley

honestly I have pretty much lost hope that there is a therapeutic dose or that I'll ever find out what it is. I certainly never will at the hands of the NHS. hence asking about T3. it looks like my only option.

1tuppence profile image
1tuppence in reply to tattybogle

Love your spirit tattybogle. You are an inspiration, and of great support and help to us others. Thank you x

And of course, I join with others in wishing you a "full come-back". xx

pattayo profile image
pattayo in reply to tattybogle

Gosh I have had the same experience when a doctor took away all of my T3, liothyronine and I almost went crazy with withdrawal symptoms. He did not care and only uses T4, levothyroxine alone. I went to an endocrinologist who added some T3 but I still cannot get back to where I was before. I know I need more T3 but most doctors refuse to use it, even though I was successfully treated for 8-9 years, Low, suppressed TSH seems to really scare them.

FinneUK profile image
FinneUK in reply to tattybogle

I imagine you doing all that and wielding a hammer - it sounds like a life!

Maybe we should all have a mass day of action and wield small hammers!

tattybogle profile image
tattybogle in reply to FinneUK

'an army of small hammers' ..... that's why i hang around on here and try to give people the knowledge i wish i had 20 yrs ago...., i like the idea of using accurate information to give hundreds of patients 'a little hammer' to use against the system that is screwing them up ~ and the confidence to wield it at appointments.

You can bend a really solid nail with a little hammer if you know where to hit it , and do it often enough.

Charlie-Farley profile image
Charlie-Farley in reply to tattybogle

Relentlesssearch this is the post and well worth reading all of it but tatty’s analogy is inspiring 😊👍

turquoisea7 profile image
turquoisea7 in reply to FinneUK

I'd wield a fair sized one at all the GPs at my local practise if I had the strength

AuntieMandy profile image
AuntieMandy in reply to tattybogle

Exactly the same here. I’ve just reduced from 25mg (12.5 twice daily) to 20mg (10mg twice daily) Liothyronine under direction of the nhs Endo as my TSH is 0.01. Even though I feel amazing and have been on this dose self medicated for 5 years!!) He wanted to reduce to 15mg daily at the 4 week mark. I told him NO BLOODY way!!! I’ve just hit 6 weeks on 10mg twice a day, I’ve gone back to being freezing cold and having to nap in the day. Im just gathering info on here for my fight with him to go back up to 25mg daily. Like you I would rather live a full short life doing everything I want!!!

(Just read the rest of the replies and so so sorry you’ve had such a terrible time 😞)

A2C3 profile image
A2C3 in reply to AuntieMandy

Yeah think I have made the same mistake listening to endo to reduce t3 due to suppressed TSH. Going to be a long road back to being able to be physically active I think, can barely move my arms and my hands and wrists are so so painful. I did a 60 mile bike ride in Aug before all of this no chance I can grab the handle bars like I am now!x

AuntieMandy profile image
AuntieMandy in reply to A2C3

😞

Charlie-Farley profile image
Charlie-Farley in reply to Witchinghour

I think the risks of osteoporosis are equal if we are left inadequately medicated, still hypo, still symptomatic and barely able to peel oneself off the sofa. That’s where I ended up albeit relatively briefly, but 4 months was enough thanks.

We are always being told load bearing exercises and walking (along with a balanced diet) help to maintain bone density.

Trouble is, doctors seem to have lost the ability to critically think.

greygoose profile image
greygoose

I'm on T3 only, and have been for years. But, my TSH was suppressed even before that. But, no, I'm not worried about it because a hormone specialist - a real one - told me years ago that TSH has nothing to do with bones or hearts. The risks are due to high FT4/FT3, not low TSH.

turquoisea7 profile image
turquoisea7 in reply to greygoose

thanks for this, so what are your FT3 levels showing up as on your bloods, if you don't mind my asking?

And I don't quite grasp how that works - does the body not need any stored T4, would you just keel over if you missed a dose of T3?

greygoose profile image
greygoose in reply to turquoisea7

I don't know what my FT3 level is right now. I haven't had a blood test since 2014. I'm self-treating and dose by symptoms - I know my body well enough for that, now.

The ideal is certainly to have some stored T4 ready for emergancies, but I just can't tolerate T4 - I've tried many times, and many different brands and it's always such a relief to come off it again. But, no, you don't just keel over if you miss a dose. Due to circumstances I won't go into here (but you can read them on my profile) I came off T3 for six months in 2013, and didn't take anything. And, I only went back on it because I started to put on weight. That was the only symptom I noticed. :)

turquoisea7 profile image
turquoisea7 in reply to greygoose

thank you :-)

Karen-Eleanor profile image
Karen-Eleanor in reply to greygoose

Hi Who was the hormone specialist please? And where? Thank you Karen

heathermr profile image
heathermr

Just to re assure you, my pituitary has failed following a head injury and my TSH has been undetectable for well over 15 years. I do not have problems with my heart nor problems with my bones and have not had in all that time. The only problem I have is that I have to have Liothyronine instead of T4 as it does not convert to T3 at all in my case. All these silly threats about a suppressed TSH are simply not true.What is more of a problem is Endos who just don't know how to deal with pituitary failure and even central hypothyroidism where not only is the TSH low but T4 and T3 are also low.

Heather

Charlie-Farley profile image
Charlie-Farley in reply to heathermr

I’m tagging in some people 😊👍 see heather’s comment above.

turquoisea7

AuntieMandy

A2C3

FinneUK

pattayo

Anyone else anyone can think of keep tagging…🤗

turquoisea7 profile image
turquoisea7 in reply to heathermr

Thank you for this, I really appreciate it. I am currently existing on the sofa (completely for the last 3 months, and mainly with some short bursts of effort before that) and have essentially been little short of suicidal since starting T4 7 months ago, I am desperate for hope.

ljk1 profile image
ljk1

I self medicate T3 only, I don’t worry about my very low TSH and low T4, I go by how I feel 🤷🏻‍♀️

turquoisea7 profile image
turquoisea7 in reply to ljk1

thank you

thyr01d profile image
thyr01d

I worry a little intermittently but like others I feel so bad without subnormal TSH that I'd rather risk the possible side effects. Luckily I have an endo who supports me in this.

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