Hello, I have been exclusively on T3 since November 2023 following years of trying different combinations. At the current time I am sourcing this privately however I am soon due another endocrinology appointment and I’m dreading it, but would also like to see if I can get it on the NHS. They are so negative onT3 and say how terrible it is for the body and how T4 works for everyone! 🙄
I know I am beginning to see the benefit but I get tongue tied in trying to explain and while I understand books I read, I can’t seem to speak about it…….sounds silly, but is there a crib sheet or a simple guide I can refer to while I am being interrogated! Many thanks ☺️
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RydeBeach
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Write a list of the questions you wish to ask and the points you wish to make based on your experiences with T3 v T4 treatment and on what you understand from the books you have read.
If it helps type it out in large font.
I'm afraid when we are on T3-only we have to do a lot of spade work ourselves.
Members are all here to help but we can only share what we have learned from our own learning and experience....and then point others in the right direction.
It's tought, but we have to be proactive.
I need very high dose T3-only, cannot have it prescribed despite the fact my body literally starts to shut down without it, had to source T3, learn how it works and how to safely use it.
The endo I saw was clueless.
I'm not scaremongering just pointing out the facts!
T3 is no more dangerous that any of the medications out there, it is not a drug but a replacement hormone and like all such must be treated with respect and understanding.
T3 is not the panacea of all ills but used correctly and in the correct dose it can change lives.
Do/did you convert T4 to T3 adequately?
How much T3 are you taking?
How do you monitor your dose to avoid overmedication?
Do you know which signs and symptoms indicate overmedication?
Have you extensively titrated T4/T3 combinations to no avail?
You cannot therefore tolerate T4.
Have you optimised vit D, vit B12, folate and ferritin?
If so, and T3-only was the only effective treatment then that must be what your body needs
Explain that.
It sounds straightforward but we are up against medics who are hellbent on using T4 and focussing on TSH.
TSH is irrelevant on T3 only, the test wasn't devised for this.
signs and symptoms are paramount when dosing with T3-only
The bottom line is, if your body needs T3 to function then that's what it should be given, it is the last resort but that is where some of us stand and we deserve to be treated appropriately....you need to prove your personal case
Make your list, be calm, polite and stick with your aim.
Sorry this is a bit of a rant but there is no brief answer to your question.
Yes, I have been researching my own health for many many years and the older I get I just don’t seem to have the energy!
In answer, to you queries
Do/did you convert T4 to T3 adequately?
No I don’t seem to although the endocrinologists don’t seem to think this is a thing!
How much T3 are you taking? Currently @0430 22.5mg; 1030 10mg and 1530 10mg…… I am increasing by 2.25 mg slowly to find the optimal dose.
How do you monitor your dose to avoid overmedication? Take my blood pressure and temperature…. Which at the current time isn’t going above 31.0
Do you know which signs and symptoms indicate overmedication?
yes, jittery anxious headaches
Have you extensively titrated T4/T3 combinations to no avail? Yes with no luck
I have Paul Robinson books, so will make notes from them …. Particularly where it says (from memory) no scientific evidence for T3 causing heart problems etc.
Liothyronine use in a 17 year observational population-based study - the tears study
Conclusion: For patients taking long-term liothyronine we did not identify any additional risk of atrial fibrillation, cardiovascular disease or fractures
thank you so very much DippyDame, this is all extremely helpful ☺️.
I had a look through your Bio and posts…..we have all been on such journeys and continue to do so and thank you for all your posts to help others along their journeys.
When I am in a better position I will re read, as I am feeling low at the moment I am struggling to absorb anything!
I think it will be worth a go at having one dose and that is not something that occurred to me…..would you have any suggestions the best way to try this please and dose to start at. I note you say about combining in stages, is it best to gradually increase the morning dose and decreasing the daytime doses?
I do think looking back over the years I feel I probably have thyroid hormone resistance and this is something else I will look into.
It’s also interesting to read about your UTI’s, as I am really struggling with my bladder at the moment and now thinking about the link between my thyroid and my bladder - the problems are worse when my thyroid is bad.
Finally, would you be able to private message me where you source your T3 as that is another ongoing problem!
Thank you once again, you have given me an extra spurt today, as I am feeling particularly symptomatic and low ☺️
Would you prefer to take your full dose at 0430 hrs?
If so, in your shoes I would increase that dose... firstly by 5mcg from your 10.30 hrs dose
wait 2 weeks then add 5mcg from your 1530hrs dose,
wait 2 weeks and add the remaining 5mcg of your1030hrs dose
then finally, after another 2 weeks add the remaining 5mcg from the 1530hrs dose
Total 42.5mcg....that may be enough...but if not then try adding 2.5mcg every 2 weeks
You may feel underpar along the way as the body adjusts to the changing dose. So long as you don't feel temporarily slightly overdosed for more than a few days ....persist. At least that's what I did
Hope that makes sense!
However we are all different so the bottom line is trial and error!
I'm wholly convinced my CUTI is the result of long term low cellular T3 and the damage done cannot be fully resolved.
Diogenes, our late advisor, once told me that long term problems caused this way are not always ( fully) resolved.
I find that I have a flare up roughly every 4 weeks I've read this can happen and is related to the renewal of ( infected) cells lining the bladder wall. I usually need a course of abx....I've just had to start another course of Amoxycillin!
The late Prof Malone-Lee wrote an informative book called Cystitis Unmarked...I wrote to him asking if he had done any research on a UTI/ low cellular T3 link. Sadly, I learned he'd died in the interim but further "digging" suggests there may be a connection.
May I also suggest this ebook available on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton. It is well referenced.
It can all get a tad overwhelming at times but there is light at the end of the tunnel....for some of us maybe not the brightest of light, but it is a light that makes a difference.
Thank DippyDame I will try changing the dose as you have suggested and 0430hrs suits me. And yes, slowly slowly is key however tempting it may be to increase more quickly!
I have bought the ebook - "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton and as I have no intention of doing any chores today I shall read this afternoon!
Your appointment might be for your benefit, i.e. maybe get (liothyronine - T3) prescribed.
The cost of T3 (liothyronine) has dropped within the past couple of months and now easier to be prescribed if doctor is reasonable and can accept that many people need T3 to relieve their clinical symptoms.
I love T3 (liothyronine) and it has relieved all miserable symptoms.
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