This paper discusses long term trends for T3 and T4 therapy. Make of it what you will. Some of the conclusions seem to me to be trawling -that is, investigate more and more until you get a result.
Are There Long-Term Adverse Effects of T3 Therapy for Hypothyroidism? We All Want to Know!
Natalia Genere and Trisha Cubb
Published Online:12 Aug
It doesn’t seem to bother researchers such as these that without added T3 medication many of us are unwell and have a far greater risk of a shortened life! We’ll all die of something one day, but I don’t want to die early because of being under-medicated for years (lacking FT3)!!!
I may even die of one of the conditions they list, while taking T3 medication, but because of the damage done before taking T3.
Of course there’s a good chance of developing heart disease because of years of stress caused by substandard thyroid treatment!! 🥴
I'm thinking of adding back in some NDT. Did so well on Armour but, stupidly, too concerned to up the required amount due to their scaremongering ranges, T3 for a long while and T3 alone from 2016. Wondering if adding the full gamut of hormone might help with age?
Any views, anyone?
I am thinking along the same lines. Like you, I have USED NDT but was too scared to go up to 2 grains. Plodding along on T4 and T3 but felt much better overall on NP.just need some courage I guess
I do think I could benefit from it. Some whack job endo and whipsnap GP decided to stop it after 5+ yrs NHS funded but longer privately - imbeciles. Yes, I'm going to check it out. xox
In thinking to try 1 X NP with 50 levo instead of current 88 levo+ 18 X T3 which is my current dose. I'm buying NP from <redacted source> but it's 100+ quid, prob more now, for 100 pills.
I would like to try Tirosint but that's also prohibitive pricewuse and neither the endos at local hospital nor GPs have even heard of it, so no chance of NHS prescription.
Please abide by the forum and HU guidelines and do NOT post information identifying sources of prescription-only medicines. I have edited your reply.
I remain unsure with Armour not the same and not readily available. Best of.
Apologies, I thought I was sending a PM to Linda
Are there long-term effects - no there aren't! They should bother to ask the people that have been on T3-Only for over 25 years and feel healthy. It has always worried me that no researchers seem to be interested in the people that feel wonderful on T3/T4 or T3-0nly.
Some of these researchers do not seem to ever reach out enough to people. Sad.
Thanks for the post as always, Diogenes.
How could they even find enough T3 medicated patients in the UK to involve in research? At least, above-board ones, since they do their utmost to ensure they do not exist!
I understand individual members who do not tell their doctors that they take T3. Too many reasons.
But a consequence is what you refer to - relatively few are above-board.
How much might this be affecting perception of treatment in research? Imagine you as a researcher assume patients are all on levothyroxine monotherapy but 10% are actually taking liothyronine? This could easily happen when the research is based on anonymous data. Your counting of people not doing well might be significantly lower than if they were not taking liothyronine.
OMG another major stumbling block. The dishonesty (understandable) which frankly is being created by the very culture of designing nobody on T3, could also be contributing to research being entirely skewed towards T4 mono therapy. Even those lucky enough to get T3 on the NHS are not being given good advice on how to take it, so creating another pool of individuals against it. Someone is having a good laugh.
There are probably enough to have a statistically valid cohort. However, this would still mean that it was a serious attempt to find out more about this group of people with these needs. Until they begin to accept such a group even exists with real needs then this won't happen.
One of my very early endos who is now a Professor of Endocrinology was very supportive of me being on T3-Only at a sufficient dose to eradicate all FT4. However, even he was not interested in doing any research in the area of uncovering why such people like me existed. It was too much of a political hot potato at the time and likely still is. Quite sad.
It will change, of course, given enough time. Science will win ultimately. But goodness knows how long this will take.
Best wishes, paul
Just thinking. I am sure the science will win ultimately. However as long as reputations are at stake and we know they are, this is a difficult route as well as a long one.
Great timing! I finally got around to renewing my British Library pass today and printed off and read a copy of liebertpub.com/doi/suppl/10... which is the paper reviewed in the study from your link. And what a wishy washy review it is, published in a different journal owned by the same publisher. Presumably to generate publicity and paywall income.
First a comment on the Review which you cite (click on 'PDF/EPUB' to see full paper). The second paragraph states "Two recent observational studies did not identify significant long-term usage concerns with combination therapy, specifically regarding adverse cardiovascular and bone health outcomes (3,4)." True, but Reference 4, a study by Tereza Planck which looked at Cancer and Mortality (not heart disease or stroke) found LT3 therapy was associated with reduced cancer progression and all-cause mortality. This is not mentioned. The Planck study is behind a paywall but I discuss it in detail here ibshypo.com/index.php/levot... , about half way down the webpage.
The review (and the reviewed study) states "In the summary analysis, L-T3 users had the following incidence rates of adverse safety outcomes ...". Both papers fail to mention the incidence rates of adverse safety outcomes for LT4 monotherapy, a clear bias. Nor do they give the p values for anything other than heart failure or stroke. For example, the LT3 / LT4 IRR for cancer other than thyroid cancer was 0.798 meaning combination therapy was safer. We don't know the p value but the IRR 95% ref int was (0.568 - 1.122).
The reviewed study did not record doses, serum fT3 or fT4 levels or even TSH. When patients complain of unresolved symptoms it is usual (and reasonable) to increse the dose of LT4 before offering LT3. Thus, it is likely that the patients receiving LT3 were on higher overall doses, this would explain the increase risk of heart failure and stoke. They give no information on how long patients have been on thyroid therapy but the study does reveal that about 45% of patients had been on therapy for less than a year.
Anything just to make sure we aren’t prescribed it ☹️
I haven't seen a research paper that doesn't conclude more research is needed
My life changed completely when my doctor allowed me to have Armour, I lost lots of weight, got my energy levels back, I became the person I used to be, that was in 2003 and I was taking 4 grains of Armour and I didn’t take thyroxine. I was taken off Armour in 2016 and given Liothyronine but only allowed 5mcg x 2 times a day and put back on Thyroxine 100mcg, I have steadily gained weight again, lost my huge amounts of energy and have lots of aches and pains in all my joints, I have constant diarrhoea and occasional dizzy spells, but having read some of the threads on this site feel lucky to have the 10mcg of Liothyronine but I have not felt anything like as well as I did before 2016. My Endo cancelled my phone appointment over a year ago and has not given me another appointment. Cannot get to see a doctor or even get to speak to my doctor on the phone, I have complained to my surgery and they have completely ignored my complaint, the NHS in now in a complete shambles in my area.
This is how my gp got me off T3, firstly by saying my symptoms were related to over medication ( my T3 Was well in range) but TSH was 0.05 so she grabbed on to this instead of looking at the overhaul picture, stating my T4 was also to low ( she obviously didn't realise that a patient who takes T3 only their T4 will be low 🙄) stupidity I came off it to prove her wrong and went back on the dreaded T4 which gives me awful side affects, after the 7 wk trial off the T3 ( by the way all symptoms remained) the gp refused to put me back on T3 until I saw the endocrinologist, this endo has now prescribed liquid levothyroxin for which I'm still waiting to be prescribed ( saw endo on 3rd August) I've been left on 25mg T4 teva since the end of May and I was hypo before this, so it's comical that these gps and endocrinologists say T3 can be bad to take long term due to heart problems ect, but it's perfectly OK to leave a patient on 25mg T4 from the end of May and still waiting for the liquid levothyroxin its Aug 26th now...... Still waiting on that prescription doctor!!!! 🙄🙄🙄🙄
This study by Bianco and others explains why those of us with DIO2 polymorphisms need more T3. I am not sure though whether we still need T4.
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