I need advice on how to reduce my TSH level before a GP blood test in around 6 weeks.
My levothyroxine has been reduced to 100mcg because my TSH 0.03 [0.5 - 4.5]was below the reference range. I lost the battle about it being suppressed because of taking liothyronine and they would not accept my privately sourced T3 and T4 blood results.
I believe my TSH will remain suppressed and the GP will likely reduce my levothyroxine further.
I’m considering temporarily reducing my levo, or liothyronine or both to ‘pass’ my next blood test and then be left alone until my next annual check. I know this is not ideal and would welcome thoughts and advice on this. Is it a ‘don’t do’? Should I drop levo then lio or vice versa.
I wish I wasn’t in a position to have to consider this, however I’m in a geographical area where liothyronine is a dirty word and you’re made to feel like a ‘batty’ old woman and not to expect an optimum quality of life!
All comments welcome 🙂
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Slowrunner1208
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Thanks SlowDragon helpful responses, and confirms what I thought. GP hasn’t wanted to engage with or support my decision to get a private prescription for T3. I’d go privately for the levo too but I worry GP will further disengage on other issues and I need to keep them on side.
It shouldn’t be this hard and I will try again to persuade them re TSH.
Ask whoever prescribes your T3 to write to your GP They should do this as a matter of courtesy. Outlining what’s being prescribed by them and what they would like GP to prescribe.
Your GP is not a thyroid expert.
If GP is responsible for prescribing your levothyroxine, then with a suppressed TSH, they need/would be reassured by a letter from the specialist to cover them
Because guidelines as they currently stand, puts GP on the spot if they continue to prescribe at existing dose with suppressed TSH
If the body needs T3 ( in whatever dose) then the body should be given T3......end of!!
TSH testing was originally designed to discover hypothyroidism......high TSH (before medication)
Clever clogs tweaked the test to try and find an easy and cheap way to monitor medication
It should be blatantly obvious that it doesn't work and causes misery.......this forum validates that
It's not rocket science....
ignore TSH ( a pituitary hormone) and focus on FT4 and FT3 ((thyroid hormones)
If you feel well on a certain dose, then that is what you need, not what a list of numbers dictates. Refuse to change your dose and quote Patient Autonomy!! A GP friend once pointed this out to me!
Patient Autonomy:
Autonomy is the principle that individuals have the right to make their own decisions, including those about their health. It means respecting a patient's wishes and allowing them to guide their own care, even if those choices differ from what a healthcare professional might recommend.
I agree wholeheartedly at what you’ve said surely they must realise that were not all wrong in what we are feeling there’s just too many of us , thankyou
Hello I manipulate my results. It took me a bit of experimenting but I know if I reduce levo for about 6 weeks before and t3 for a few days my tsh comes up. They only test tsh... I am usually on 125 t4 and 25 t3. If I drop to 75 t4 that usually works, I will be off t3 for a few days and put up with it. It's not for everyone, I know my body, get private tests regularly and can interpret them, and yes GPs etc should treat us better... but they don't and I need to keep my prescription so I work their system.
How much of a difference in how you feel do you notice when reducing from 125/25 for periods of time and how long does it take you to feel right again when recommencing your normal dose?
How much does TSH rise?
Honestly, what a palaver to keep ourselves well. I often say this but I feel so sorry for the 10s of 1000s, probably 100s of 1000s, who don’t have the benefit of this forum and do as they’re told by their doctors. I see morbidly obese people everywhere now and I always wonder what dose of thyroid replacement they’re on or even if they’ve been diagnosed in the first place. I realise not all obesity is caused by thyroid issues but I imagine a frightening percentage of it is, made all the more frightening because we have GPs who unquestioningly accept the diktat and thereby are complicit in making us more and more sick instead of well
With reduced t4, I try to keep it at the very bottom of the range, but I honestly feel no difference with that. I hardly have to drop my t3 much or for long to get the tsh i want. It's something you will need to experiment with. It took me several months of methodically dropping t4 first then tweaking t3. It's not for everyone. As we know our bodies respond in different ways to the hormones. It's sad we have to do this but I will have my t3 removed if I am suppressed tsh on my annual test. My GP openly admits to not knowing about thyroid and has previously tried to refer me to have t3 looked at when I was suppressed.
I’m not looking to try it because I’m on a product that contains T4 and T3 and therefore wouldn’t be able to do that. Never know when I might need to try though! Fascinated to learn that people are manipulating to get the result they need to keep their prescriptions. Shocking that you need to
I find what keeps my TSH just within the reference range is having a low T4 level, low and in range that is. Never go under range with T4. I take T3 liothyronine twice a day and never alter that. My T3 level is 85% in the range. So T3 high but never over and T4 low but never under. I take my medication 2hrs before a blood draw so I know exactly how high my levels get I alternate my blood draws one time taking meds next time not taking meds This tells me how high and how low my levels go
I feel great with in range levels and TSH. Im full of energy and feel 10 years younger. I exercise regularly, eat as healthy as I can, and get my vitamins B12, ferritin, Vit D and folate checked every 3 months when I get my thyroid bloods checked also. I like to keep on top of everything and using preventative measures to keep well and energised
That’s very interesting McPammy and perhaps should come with a “do not try at home” warning 😂 but I suspect, unsurprisingly, many are doing the exact same thing out of necessity
At what % is your FT4? Did it take a lot of experimenting before you hit the jackpot?
Hi. I was directed by my private only endocrinologist for these doses. It just worked out for me. I take 68mcg liquid levothyroxine a day and 5mcg T3 twice a day 8hrs apart. My TSH never goes suppressed and my t4 and t3 levels are good for me. My t4 is usually around 40% through the range which is adequate and t3 85%. TSH is usually around 1.00-1.50. I was in a hell of a state prior under the NHS. I needed T3 medication badly. I’m a very poor converter and have the faulty DIO2 gene hence my need for T3. I’ve never felt better.
The problem is, when your TSH has been very low or suppressed for a while, it is unlikely that it will come up again. And as you are taking T3, this will keep your TSH low or suppressed anyway, so no matter how much you will reduce your levothyroxine, as long as you are taking T3 your TSH will remain low as well. Reducing your medication will just make you ill in the next 6 weeks, but sadly will not achieve your objective.
As others have suggested, get a letter from the specialist that is treating your hypothyroidism and prescribed the T3, explaining your situation in detail. Show your GP this letter and say that in all matters thyroid you are discussing your situation with your specialist and not with the GP. As such the responsibility for your low TSH will remain with the specialist, who is aware of the situation, and it is not the responsibility of your GP, and neither should he adjust your medication. So your GP can take responsibility for all other health matters, but for your thyroid health, you will remain under the care of your specialist, which should certainly outweigh the GP's opinion.
If the GP remains uncooperative, is there another GP in the surgery that is a bit more open-minded? As a last resort, could you perhaps change surgeries? I know it is not ideal and it also depends of course where you live, but dealing with uncooperative GPs that know it all and won't accept a specialist's advice over their own, ill-informed opinion, are very draining not only for your physical but also emotional well-being.
It is so so difficult when our private and nhs care interacts like this, one relies on the other and the impact on our health is profound.
Assertive phrases:
“I’m making an informed decision.”
“I do not consent to (a medication change).” This is enough!
“I will do not consent to any medication change without consulting private Dr.” This reminds GP you have an expert involved.
“I am not able to do informed consent in this scenario.” (Where you are being manipulating.)
Even if you are manipulated in the appt, email afterwards FAO Dr and say you have considered all the information and you withdraw consent for a medication change to X, give brief reasoning.
You can submit a complaint to the practice manager and stop seeing that GP. I’ve done this and it helped me.
There’s two GPs at my practice that I avoid because they gaslight, patronise and don’t listen.
If it’s just for Levo, if you can afford the extra I would do it all privately. It will be far less stress, because all your thyroid care is looked after by one Dr who treats to T3 and symptoms. It’s no longer the GPs remit and will have no impact on other care. I find the GPs completely stay out of it.
I’m in the same situation as you, with the exact same T3 and T4 results (and same T4/3 dose), but fully suppressed TSH. My doc wrote to the hospital endos for advice, which is reduce T4 as I’m obviously over medicated (but they are letting me do that after the summer holidays as I have plans and don’t want to feel ill through their meddling with my dose).
However, manipulating your results to get your TSH up won’t work. You don’t want your T4 to go down and TSH to go up, that will just have them say that you were over medicated on 112.5 and need to stick to 100/day. What you (and I) need is our T4 to go down to an unacceptable level and our TSH to stay suppressed. That way we can say “see, TSH is not the be all and end all.” I think, and I’m not doing this experiment on myself until September, that the way to do that is to drop the T4 substantially and up the T3 to a whole tablet a day. But I know from experience that a decent T3 level for me with a low T4 level makes me feel ill.
Please update us on what you do and how it all pans out.
Hi Slowrunner, My TSH is 0.006, so when I have a blood test each year the lab panic at the low result and also do a T3 and T4 test. It is the T3 that is pushing down your TSH, not the thyroxine, so no point reducing that. I normally still take the thyroxine before the blood test, but don't take the T3 the day before, as this does make a difference to the TSH and T3 results. Looking back to my results for the last few years, The last 2 years I didn't take the T3 the day before, and the TSH was still 0.006 and the T3 was 4.1 but 3 years ago I left it off for 3 days before the blood test and the TSH was 0.01 and the T3 was 3.7, which the Doctor was happier with, so I think next time I will leave the T3 off for 3 days. After years with my current Doctor, she has come to realise that the TSH won't come up very much no matter what I do.
I understand your fears, but I have found the following phrases useful as my TSH is way low.
"Oh yes, thats just how I run, if you look back at my results I am always low - its just me!" (they dont bother to look back and you have shown their lack of care).
"Oh yes, as I am sure you know, the feedback loop has gone and nothing will bring it back" The "as I am sure you know" gets them every time, as they dont know and dont want to admit it. It also shows you know a bit about the whole thyroid thing.
"the bloke who invented the TSH test said it is not important if you take T3 - would you like me to send you the paper he wrote?"
" I am well on my current dose. Why do you want me to become ill?"
I think my file now has a red warning not to argue with me. Good luck!
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Reducing levothyroxine before liothyronine ?
Levothyroxine (T4) and Liothyronine (T3)
Suppressed tsh when on T3
Add a bit of liothyronine or just increase levothyroxine?
