Hi All, I am 37 year old female and I have been taking 10 mcg Liothyronine for 8 years. Prior to that I was levothyroxine but felt quite unwell, overweight and quality of life wasn’t that great. The last 8 years have been uneventful health wise.
I have been referred to a NHS Endocrinologist as my GP will not be able to prescribe Liothyronine long term without me seeing the referral. I have had a telephone appointment and now my blood results have come back. The endo has told me that the thyroid stimulating hormone is in the low normal range, and the free T4 is 9.0, because the thyroid is being suppressed by the T3. However the T4 could be 0, so he thinks it is able to be stimulated.
In light of the above, I have been told to reduce my Liothyronine over 6 weeks staggered way with a view to being off any thyroid medication long term.
Just wanted to get some feedback on my results and check if anyone else has been in a similar position. The last 8 years health wise both mentally and physically have been good.
Many thanks
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Arpp1
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What were your blood test results when you were diagnosed? It’s possible you will be fine off hormone and it would be worth a try. However, if your thyroid is good your TSH might be lower on 10mcg liothyronine. If your thyroid (they mean TSH) is being suppressed by the liothyronine then your TSH should be much lower. So, it looks like you have some thyroid failure.
It’s reasonable to try reducing and quitting your liothyronine as a trial but I would make it absolutely clear that you want to have it reinstated if you need it. And that you decide whether you need it, not a blood test. I would try to get this in writing, which might be easier if you are communicating by letter during this COVID period.
What he has suggested is a trial, an experiment. It is reasonable but if it doesn’t turn out well the experiment should be dropped. You may feel well for a few months and then decline so you need to retain the option of resuming your liothyronine at some future date. You could put it in a positive light and say you would prefer to be off tablets and willing to give it a go but you insist on a safety net.
It’s really important that you decide on your treatment not the endocrinologist. Don’t let them bully you.
I really appreciate your feedback and helpful suggestions. I am a bit scared of even experimenting as I have two young kids to run around but will give it a try. Best wishes
My TSH is lower than yours and I am on nothing. How do you feel at the moment? Also I wouldn't want to stop if I had been on T3 for as long as you have because your body has got used to it now and you might start to feel ill if you stop.
I dont know much about these things, but I'm confused. You say you feel fine, why change it? Why would anyone suggest you come off your medication long term if you are now relatively healthy with no issues? What is the aim?
I agree Alanna012 she states she felt unwell before taking it so why change something when it works for you. I also think she might start to feel ill if she stops after such a long time.
Again, maybe there's some sort of justification that your vastly more knowledgeable Endo can see that I can't, but as someone living in a constant unwell state, I can tell you now, it would be a cold day in hell before I changed my meds simply for some theoretical experiment if I was feeling normal and healthy. A very cold day.
I would ask him to justify his reasoning to you again.
I would agree with that - does he think you have had some sort of "miraculous" recovery in the intervening period??? the like of which would, to most of us, seem to be unheard of [although not beyond the bounds of possibility - there are people who have estrogen dominance which causes them to have hypo symptoms and taking T3 seems to deal with the ED which in turn means they no longer need the thyroid meds, according to tom Brimeyer]
This is my point that I have been trying to make with the endo; he is suggesting that I will have a miracle recovery ! I am open to this idea but I have been passively accused of wanting to keep taking Liothyronine because I want my weight to be controlled artificially. With both births of my 2 children it took on average 2 years each time to lose 3 stones which i did with exercise and diet.
Be prepared to have an argument put together with some of the suggestions posters have given here. Explain that you have felt well all this time, and are not persuaded that you need to perform any experiments with your medicine as you are NOT prepared to suffer any negative consequences whatsoever, for however a period of time, be it short or long! You have a family who are absolutely reliant upon you being well. ESPECIALLY in these times of Covid uncertainty, You cannot afford to do anything that might impact upon your ability to work (as has happened before being on the dose of liothyronine, invite him to see the difference in your health notes regarding before and after) or affect your mental health, which many millions are struggling with at this time.
You want it written officially that should there be any negative consequences your T3 is reinstated as quickly as possible. Throw in that you want this as you do not want to have to through an appeals process later. Make him aware you would be willing to make a fuss.
Frankly, as has been said, If it isn't broke why fix it? Get him to explain what harm he thinks will happen if you remain on it as opposed to off it. Unless there is some very persuasive reason, my position would be that of not doing anything to disturb my current equibrilum.
As for the weight accusation. How dismissive! Does he have any idea of how mentally distressing it can be to pile on weight and have very little control over it? I am a person who always exercised and now for years not only can I do very little, but literally nothing I do makes a difference and actually for me, that is an upsetting side effect of this illness. One wants to at least look like oneself! I am sure it was the same for you. I find that one to be typical of the health professions attitude to concerns of women in particular.
Just do not be railroaded. Is it possible for your husband or partner to be there in the face to face? Bring him if you can. I'm sorry to say it does make a difference if there is another man in the room.
All I say is thank you. I was thinking of bringing my husband but I didn’t want to accept that I would be taken more seriously if he was there. It’s ridiculous that we still have to think that our opinions are better heard when we bring male support! Your concerns raised in your first paragraph is exactly how I feel. I don’t want to have to battle or fight for my current good health I just want a honest and unbiased (without reference to cost) about treatment. I also don’t want to be put in a ‘category’ or labelled because I have concerns about weight gain. I was clinically obese as a child despite being in all top sports teams at primary school and not eating junk food.
Unfortunately it remains true that a man's opinion is taken more seriously or at least, is seen as adding gravitas, backing up or providing validation for your own concerns, and you can use this bias to your advantage, so for e.g. If you explain that before the dose of T3 you are currently taking, you were struggling to get everyday tasks done due to fatigue, it adds weight if your husband pitches in with something like: "Yes, I would try to help Arpp1 with her household tasks as she found it very difficult to manage especially with the children. I would have to pitch in after work as she would be lying down. We often couldn't go out on outings as a family. She often became emotional and quite depressed. Since she's been on the treatment she is now, she has been back to her old self, like the woman I remembered. My concern is that if her medicine is changed we would ALL go back to the position we were in" blah de blah de blah or something like this.
His experience of your concern adds weight and at the very least makes the Endo aware he is potentially affecting 2 people plus a marriage with any changes he makes (something he should be aware of anyway, but seeing as he's already been patronising about your weight it brings it home).
Even if your husband says nothing but can ask a few questions it helps. I have seen it when dealing with my children and watched with my mouth hanging open as appointments previously denied suddenly become urgent requirements once my ex expressed concern.
Ultimately what you want to avoid is living a life on Levothyroxine only (it seems this is the goal or even nothing at all) when it has been demonstrated that you didn't thrive on it before. Note THRIVE is important as opposed to 'managing' many people manage on levo fine - some do even thrive - but many only manage or barely manage and in medical terms, if NHS are saving money and you are 'managing' that is a win for them! But managing isn't as worthy a goal as thriving and you have a right to the latter. I would use the word thrive in my language to to the Endo. Existing, coping and managing is not enough if an alternative is possible.
my follow up to Alanna's excellent advice would be 2 fold - 1. the liothyronine assists your physical resilience which when we are surrounded with a killer virus we can't see you need every ounce of in order to stay well - you have no idea what way your immune system would react to its withdrawal at such a critical moment in time. 2. I would not just go there and say the things Alanna advises - I'd put it all down in writing and print it out and give him a copy and ask for it to be added to your notes as a record of what you said - it's that important. That way if there is anything further down the line it isn't a case of "he said" "she said", your written submission will be hard to argue against. The number of times I wish I had done that and hadn't and I always paid the price. Good luck. Here's hoping you get to keep your T3!!!
Sorry to be cynical, but could this recommendation to come off T3 be more related to the NHS’s funding position on T3 than to your health? Frankly, if you’ve been well on T3 all these years, the advice/apparent reasons to come off it seem like crazy logic to me!
Suck it and see I guess. And if you start to feel unwell after reducing t3 tablets, you can argue to restart!
Maybe your thyroid has stabilised.
It maybe you have a conversion problem and so the t4 bit is ok but your liver isn’t converting t4 into t3. So you might need the T3. Maybe cut down very very gradually?!
Let us know how you get on. Its always interesting to hear from endocrinologists and their theories lol.
Strongly recommend getting FULL Thyroid and vitamin testing before reducing dose
Vitamin levels frequently drop if Ft3 levels drop
What vitamin supplements are you currently taking
Do you have high thyroid antibodies?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when on T3, make sure to take last third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
By what I can see in those results you need more T3 not less. You are under medicated! T3 should be higher for you to feel fully well. It would be madness to come off T3 especially since you have been on it 8 years. Coming off it would be a big shock to your body. Hopefully greygoose will come along and clarify it as she has more experience of T3 only. I think what has been suggested is downright ignorant and dangerous!
The problem is, endos know very, very little about thyroid - I bet this one is a diabetes specialist! Check him out. And they like to do these little experiments, using their patients as guineapigs. From your results, and from what you say he said, there is no justification for believing that your thyroid will be able to snap back to full functioning, making enough thyroid hormone to keep you well.
After all, you were diagnosed hypo with some justification, I imagine. Misdignosis in the area is very rare. Do you know what your levels were when you were diagnosed? Did you have your antibodies tested?
In any case, I can tell you one thing for certain, I would not indulge his morbid curiosity by agreeing to this 'trial'. Because if things don't go well, the chances of you getting your T3 back again are very, very low. I agree with those that say this is just a ploy to get you off T3 - which costs the NHS a lot of money - and when you fall ill again - as I'm pretty sure you will! - they'll want to put you on levo only. Is it really worth the risk?
Thank you so much for your feedback. Unfortunately I haven’t got my results when I was first disagnosed but I know I was referred by the GP after initial gp blood results show poor thyroid function. I really don’t want to be a Guinea pig as I pride myself on being an active mother to my kids and running after them whilst juggling home and work commitments. The last 8 years have been really good for me and I hate to go back to what I was like prior to that. I will need to allocate some time to really go through all your feedback and decide what is the next steps. Thank you
I agree ' I would not indulge his morbid curiosity by agreeing to this 'trial'. Because if things don't go well, the chances of you getting your T3 back again are very, very low.'
I read OP post with my mouth open, stable for 8 years on such a low dose of T3 why on earth would he change that! you have tried levo and did not get well, so you are hypothyroid but out of the blue they think you may be cured!!!
Why reduce such a small dose, I bloomin wouldnt, i would be over the moon if i only needed 10mcg daily, I am on 75-100mcg a day! they stopped mine due to cost, it took 10 months of stress to get it reinstated. I would politely refuse, say you feel stable and have 2 kids to take care of, you can not afford to become dreadfully hypo energy wise, it is likely when you become hypo they will only offer you levo! you may need to go CCG route for individual funding, your GP obviously no longer wants to foot the bill for your T3.
Thank you so much. I am genuinely sorry to hear the stress you had to endure just to fight for your health. Thank you for sharing your experience, it must greatly appreciated.
This 'trial' seems to be in their interests not yours. It is most likely that financial motivation to avoid the cost of a prescription for T3 is the driving force here.
The T3 you're taking has NOT supressed your TSH, since 1.76 is similar to that of many healthy people. There are no associated health risks for TSH at this level as far as i know.
Your FT4 and FT3 are not over range. So no health risks here either. T4 could be higher, but if that's what they are 'worried' about why don't they just give you a bit of Levo in addition to the T3 ? Your low T4 doesn't seem to be bothering you, so what's their problem ?..(apart from the extortionate price of T3)
You are feeling stable and managing life at the moment.
Even if the trial removal of all hormone supplement is only 6 weeks, by the time you add in a blood test , and then an appointment to review, and then an argument about re-instating hormone ,and then another argument about T3 /Levo........ how long would it actually be before you feel this well again if you do start to feel unwell as a result of this 'trial' ?
Could you afford 3 months off work ?, would your employer be understanding ?, Will your children suffer if you don't have the energy to help with homework, cooking proper meals ? Will it affect your relationship with your partner, are they supportive and prepared for what might happen ?
Is the endo offering you a 3 month stay in an all inclusive hotel with childcare while you carry out this little experiment ?
If you needed to be on Levo before you even tried T3, what is their reasoning for thinking you wont need some sort of replacement now ?
If i was you , i'd want answers to these questions before i risked it. and like others have said , i'd want it IN WRITING ( with a signature ! ) that i could go back on T3 if i chose to, based on how i felt , NOT on blood test results.
Your message articulates exactly how I am feeling and especially the impact on my home and work life. This experiment can really impact on both fronts. Thank you so much for your feedback. This forum reassures me that my concerns are valid.
Most Gp's and endo's seem to have no appreciation of the wider social/economic effects of messing with doses in people who are doing OK. It's as though they think it's just some numbers that move about and a bit of weight gain/loss/constipation etc that will happen when they do this.
i've just lost the best part of 12 mths due to 2x reductions of 12.5 mcg Levo and then reinstatement of 12.5mcg . I agreed to do the 2nd reduction which i was sure was unnecessary, only because my work, social ,sex life has already gone down the pan yrs ago, my kids are self sufficient, and i was already unable to work and skint, so it seemed worth it to prove the GP wrong, and hopefully add evidence towards a trial of T3. But i have been unpleasantly surprised at how long it has taken to regain my previous state of 'OK ness', which was 'not very OK' anyway !
but i was enjoying my little life and had a productive garden. This week i have only just finished cutting the hay field that has appeared where the lawn used to be, and many of my treasured plants are dead/very unwell. My bicycle is still being used as a coat rack whereas before this little experiment i was using it regularly. I do feel like a ride out now, but of course the tyres are flat and some ones borrowed/buried the bicycle pump !
My house is now well past 'messy' status, and on it's way to 'slatternly hovel'...it will take months to return it to 'messy' (i gave up on 'clean and well ordered' yrs ago)
The only things to have benefitted from the experiment are the many frogs i found, who clearly like an overgrown garden. So i've left them a bit of wilderness round the edges.
I wonder if the endo who is suggesting this trial to you would be prepared to risk as much of his own personal financial and emotional stability as he is asking you to ?
didn't they have to agree to 'First Do No Harm' when they were registered to practice medicine ?
Maybe being told you will hold him personally responsible for any financial losses you incur would concentrate his mind ?
Wishing you all the best in whatever you decide. but like jim said , don't let them bully you, your concerns are perfectly valid.
If your post has achieved nothing else, I am glad to know I am not alone in struggling to keep house. At times I congratulate myself if I have managed to make myself 3 meals in a day. Sometimes I fantasize about "clean and well ordered" and what that might look like. You have given me much consolation tattybogle!
Glad i made you feel better, I console myself with the fact that only really boring people live in tidy houses .
I ran out of steam when i was half way through renovating a building, so i fantasize about plaster that goes all round the room and floorboards that go to the edge... or a bit of wall to put a bathroom door in...oh well... in the meantime i've got a nice rug and some wall hangings
Ah Tattybogle you poor thing - You have my full sympathy - I know what that is like and I found it hard to cope with as a well person never mind what it would be like to handle as an ill person. Hugs. Big ones. You are absolutely right - about boring people and tidy houses. Where I live people are obsessed with power washing their driveways and painting their fences etc - I'd far prefer to plant flowers, nurture them and watch them grow and enjoy their beauty. I caved about 2 weeks ago and thought I should have a go at the fence and had to abandon it after an afternoon completely exhausted. Am trying to muster up the energy for round 2 having totted up that it is going to take about 8 sessions to finish - I'm aiming for New Year!!!
Ha ! I know what you mean . Maybe we should do a 'Hypothyroid Homes Under The Hammer'.. it would be full of houses with 1/8th of a job done
I've got 6ft of nice clean yard wall, followed by 25 ft that is still covered in old manky paint, the top two floors of nicely painted windows and gutters , but a ground floor and porch that's still peeling , and I've pulled all the old nails out of 1 flight of stairs, but still got two more flights full of 100 yrs worth of carpet tacks and glue... i do wish people wouldn't glue carpet to the floor !
I now reckon on it taking me several months to do something that i would have done over a week when i was well, and i don't expect to get anything at all done after the end of October. I hope you can enjoy some satisfaction from looking at your 1/8 th of a nice fence, i'm sure that bit looks lovely X
Ha! Tattybogle - while I think it is a great idea [hypo homes thru the keyhole more like!!] somehow sadly I don't think any of the mainstream broadcasters would back it - even channel 5 might struggle, but it would indeed be full of houses with 1/8 of a job done here, there, everywhere as far as the eye can see!! and then there's the jobs which don't even make it as far as getting even 1/8th done at all, but best not to go there. Your wall makes me think fondly of my fence (the 1/8th does look smart - shame about the rest of it!) and while we joke about it [thank god we haven't lost our sense of humour] it is however a sad state of affairs that things are like this for us. I am sure my neighbours think I am "just lazy" considering I "look so well", but then I would also imagine that they aren't spending 2 hours plus per day [when well enough to do so] online searching for and trying to learn ways to help themselves with their medical condition. Yes - pacing is all, that and prioritising. You'll get there tattybogle!X
Oh dear god no!😄 I'm the neighborhood slattern. The garden is so sad and weedy looking, if it wasn't for the elegant ash tree it would have no grace at all. The front door paint is peeling. My clothes have been on the line for 3 days getting periodically wet then dry. I somehow looked at them yesterday, knew they were dry enough to bring in, then had a memory lapse, got on with something else and left them there. Dread to think what the neighbours adjacent to me are thinking. I woke at 1am to hear it raining then remembered they needed to be brought in!
My living room has a pile of click laminate in the corner begging to be put down and half a wall unpainted😬
In terms of house programs I personally would prefer 'Escape to the Hypothyroid Country'😄
Again, Alanna, just like tattybogle, you have given me much consolation. The number of times this week [weather has been good here] I have tried, and failed, to persuade myself to tackle the peeling varnish on the front door (which lets in water when it really rains - the incentive is totally there the energy just isn't) beggars belief - but like your washing - except it would take me a full day to do the prep work and then another full day to paint several coats onto it and the effort on the first day would mean I couldn't manage the second day's painting, which means unless I can put 2 days together straight I couldn't risk attempting it as if i did the prep and then didn't paint it it would be in worse condition than before I had started!!! And as for the rest of it - well the back garden's quite nice - but the rest....I would advise you not to worry about what the neighbours think, but as someone who worries about it a lot I cannot do that. I live in a state of perpetual envy of mine who seem well and have beautiful homes, but I wouldn't imagine they would manage to walk in my shoes for one day never mind endless days. You do the best you can with what you have. But I love your idea of "Escape to the Hypothyroid Country"😄!!! Good one!
Oh I get what you mean about starting the prep for a project then not finishing meaning it all looks so much worse! This is why I haven't started the flooring. Imagine moving all the furniture, putting down all the underlay, running out of energy then living with underlay as my new floor for possibly weeks or months on end!
Even with help I have to be able to guarantee a week of activity. Yes, you're wise, its far better not to compare oneself with others, everything in it's time. I'm sure your door will get done eventually.
Perhaps the housing program we want is '60 minute hypo Make Over'😄
Hopefully you will get that "well window" where nothing else needs done, you energy doesn't have to be diverted elsewhere [cooking/shopping/cleaning/learning how to stay well] and you will get your new floor done. I was thinking of another TV programme last night "Grand Designs (you can only dream of as a hypo)" but 60 minute hypo Make Over is way better!!!
I’m truly sorry to hear the struggle to return back to your ‘ok’. I hope one day you will feel ok to ride that bike. Thanks for your message I am genuinely overwhelmed by the support and information provided. Thank you again.
And another thing....... if they are so concerned by the price of T3, Gp's and Endo's should be directing their attention to pushing for an answer on the 6000% price increase, not messing up peoples lives.
If all their town shops started selling butter for £120 a packet, would they just stop having butter and say 'oh well, no more butter just use marg' or would they go to the next town for their shopping until the towns shopkeepers got their act together and sorted it out ?
I don't understand why they are not looking for another supplier that is much cheaper. I used to work in a hospital pharmacy many years ago and we were told who we had order certain drugs from and usually different drug companies would bid for it. I do wonder if some powerful people have shares in certain companies .... I am just speculating btw.
No - keep ranting - apparently the UK can afford to not only ramp up its contribution to the WHO, but can also contribute £500m to a fund to provide covid vaccinations to countries on low incomes, but cannot muster the wherewithal which would be required to provide proper thyroid treatment to people in this country who have paid tax and national insurance for years, leaving them in the situation where they are scouring the internet for reputable suppliers of T3.
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