Since 2017 I have had my T3 only prescribed by a large teaching & research hospital in the Midlands. Fortunately since lock down and until recently I have not been called in for blood tests. I had to go in for an appointment on 12 February. I saw a locum endo who was very vexed by my longterm very low TSH. He admitted that he had never before come across a patient taking only T3. I explained to him that a very low TSH is expected when a patient is on T3. However he wrote me a letter saying :-
“With regard to your T3 dosing, I have mentioned that your TSH has remained suppressed for a long time. You mentioned that it is expected in someone who is on T3 therapy. My concern here is that we need to be sure that we are not causing any harm by continuing this prescription at this dose. I am unfamiliar with this situation and would like to discuss this with the Team and seek some expert advice before I can carry on endorsing it. I shall write to you once I have discussed your case in our MDT.”
He obviously mentioned osteoporosis and heart problems.
I wrote him a restrained & polite letter explaining the relevance of TSH being a pituitary hormone, not a thyroid hormone, etc.
So, now I have received another letter from him asking me to attend an appointment on 29 April. I am expecting another fight coming on.
Does anyone please have a medical paper showing that TSH is irrelevant when on T3 only?
Written by
marigold22
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You might be surprised! As an asthma sufferer (and asthmatics do not qualify for the exemption certificate) I can assure you we do sometimes have similar issues - usually because of cost considerations. My biggest gripe, however, is that the favoured reliever inhaler for acute attacks - the ventolin evohaler - has no counting device on it so there is no way to keep track of how much is left (and it should be used on an as and when needed basis only, so not every day). Evohalers, used for several different asthma meds, not just ventolin, are favoured because they are cheap. I first encountered the ventolin evohaler back in the 1980s and now, forty years later, they still don’t have counting devices on them. These are life saving devices. A severe asthma attack can kill. They come with counting devices in the US (so they do exist) but not over here.
Yes, we can get them, though as with thyroid some asthma medications can only be prescribed by a consultant and there have been times when some areas have withdrawn certain meds or made them very difficult to access. I’ve not experienced that - yet - but I’m aware that others have.
I always have spares. I’ve been living with the condition for just shy of sixty years. It’s mostly controlled. But I often wonder how many asthmatics end up at A&E, or in resus, or indeed end up having what turns out to be a fatal asthma attack, simply because they didn’t know - because there was no easy way of telling - that their evohalers had run out of medication. It wouldn’t surprise me to discover that Ventolin evohalers are the only life saving medication out there that has this appalling design flaw.
Having had asthma since aged 3 (and it went undiagnosed for five years because the medics were almost in denial about the condition in the 1950s, 60, and 70s), and having had a son who likewise developed the condition at the same age (but he got the medication he needed just before he turned 4), I feel for you and your son. I’ve been there, I do know what it’s like.
I’m beginning to experience how things stand with thyroid sufferers as well. At the moment I think I’m what the medics like to call “subclinical hypothyroidism”, which to me says “you’ve got it, but not at a level we want to do anything about yet” but I gather is interpreted by the medics as meaning, “there are indications that you might get it, but you haven’t yet” - or am I wrong there? My journey in company with thyroid issues is only just beginning. I admit I’m a little apprehensive as to how it will progress.
I do not get the impression they wish to stop your prescription. It reads as though they are trying to help while been mindful of their responsibilities.
I suggest you search on the forum. I recall a number of papers on the use of liothyronine, the NICE guidelines, combination therapy, the risk of atrial fibrillation and osteoporosis. Dr Bianchi’s work is valuable.
I believe there is a huge gap between what older medics were taught about the thyroid and pituitary glands, based on old research, and the findings of newer research which support the use of T3 and downplay the risks of atrial fibrillation and osteoporosis when T4 and T3 levels are kept more or less in the accepted ‘normal’ ranges even though the TSH is suppressed. The key thing for me was to get my blood tested by Monitor My Health which showed my T3 and T4 were within the ‘normal ranges’. That was evidence from an NHS laboratory which my GP had to take seriously.
Thanks Hashiboy . I was originally prescribed T3 only privately by Dr Peatfield back in about 1997 but he disappeared many moons ago due to the GMC hounding him & has since died sadly. Then a wonderful professor at this current hospital put me onto a much higher dose of just T3 in 2017 but he has since gone off to Australia. I see a different endo each time I've been for an appointment at this Midlands hospital
@marigold2 Good luck. It's a team stress when endocrinology teams change. I take T3 and T4 and am really happy with my endocrinology team now but in the past I've been on T3 and a new endo has come into post and not been comfortable that they knew enough about T3 to continue prescribing. So feels like a sudden step back. Really hope you get the treatment you need.
Hi, I'm on a T4,T3 combo and my tsh has been 0.01 for years. I have written all my blood test down since 2018 and in that time I've had many different doses of NDT and levothyroxine/liothyronine combos.My tsh does not change always 0.01 and i have neverin 19 years had a scan to see if my thyroidis still there and working, i also have hashimotos. So I refuse to be dosed by my tsh. My endo is listening and now dosing by how I feel.
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