All my learning and discovery over the past few weeks about my condition and it’s appalling treatment management on the NHS has left me wondering.... how many people are left undiagnosed/undermedicated/having to seek private prescriptions for T3 or NDT or source it on the black market?
It seems like an enormous scandal to me!
I can’t believe it’s so unknown and so little is being done to help people left in chronic and dire health because of it.
Instead it’s being left to patients to self organise their care and help each other, with just a handful of doctors to guide them (if they can afford it!!)
Why isn’t it more widely known about?
Written by
Frances0008
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As regards treatment with T3 alone or combination, one can make a guess. From NHS figures of T3 costs I estimate that only about 5000 or so patients in the UK are on T3 (maybe even less now since CCG's are putting pressure on doctors to de-prescribe). From knowing that about 2% of women at least get thyroid problems, that's 2% of say 30 million which is 600000 + a tenth as many men making 660000 in all. It's believed that up to 10% of patients do not respond properly to T4 only treatment - i.e. 66000. Since only about 5000 and certainly much less than 10000 receive T3 in any form through the NHS you can see the shortfall.
There are apparently just under 2 million people in the UK on Levothyroxine. Total population is 65.64 million. Just over 3% of population is on Levothyroxine
"From the above data, one can estimate that slightly over 3% of the population of England were prescribed regular levothyroxine during 2007[2]. This is corroborated by a prevalence rate for hypothyroidism of 3.01% in Tayside, Scotland during 2001[3]."
According to research Approx 16% are likely to have DIO2 gene variation. So that's at least 300,000 likely to benefit from addition of small dose of T3
This link suggests 7 out of 12 would benefit from addition of small dose of T3
Although only about 2 in 12 of us has two SNiP’d genes, 5 out of 12 have one, so only 5 out of 12 have two normal genes. In other words, more than half of us are “abnormal” in this way - no, cor- rect that, more than half of the study population, who all had a diagnosis of underactive thyroid, and were on thyroxine treatment already. So if you have a thyroid problem and are on T4, there is at least an even chance that you would be better off on T3 as well.
That doesn't even consider the large number of people struggling to even get diagnosed due to standard test only being TSH and FT4
The current extortionate price charged to NHS for T3 is obviously a big problem to getting better treatment even acknowledged
As I see it, Big Pharma just doesn't want us to get well - and Big Pharma holds the purse strings where matters like doctor-training are concerned.
BP is making several small fortunes out of 'treating' our symptoms, which they would lose if we were properly medicated. What with PPIs for our non-existant high stomach acid, Beta blockers for our racing hearts, slimming pills for our widening girth, and, of course, the daddy of them all, statins! For our high cholesterol. They don't want us to stop taking all that!
So, doctors are kept ignorant, and taught that all women are moaning Minnies and liars and hypochondriacs and attention-seekers, that exaggerate their symptoms, and eat too much then blame it on their thyroids. And that's what the average doctor believes. Hardly surprising that we're badly treated, they just don't know how.
I’m just flabbergasted that you don’t hear about it in the press. I’ve never read about it or seen a documentary about it. Just the fact that so many thousands of people are getting T3 (or NDT) outside of prescription, being forced to live off an insecure supply from abroad just to be able to function, is plainly scandalous. Never mind the threatening letters to people who are still able to get T3 on NHS prescription! Or the fact people are having to rely on patient to patient support to help them where doctors won’t. Or that doctors advice and guidance is pushing people into serious debilitating illness (as in my case before discovering this forum, I’ve started my own road to recovery now)..... and without places like this, and the wonders of the internet, so many people would be forced to live like that - unable to work or care for their kids - hardly a life worth living! It’s just incredible really. A proper scandal. I want people to know about it ! Imagine how many thousands of people there are across the UK right now who are suffering needlessly, and have been doing for years, with chronic pain and exhaustion. And they don’t have to be! People need to know!
I think I posted (or certainly commented) something very similar a few months ago Frances0008 , more regards to thyroid health in general rather than T3 but the end result is the same.
I felt (feel) completely let down by the nhs as I feel that with not a lot of digging and research, I have managed to understand and mostly treat my very poor health. Other than getting bloods done, I have had no useful information or discussions with anyone who is actually medically trained. And in fact, the amount of BAD information I’ve had is very disturbing.
I’d be bed-bound, with the wrong dose of levo and filled up on painkillers and anti depressants if I’d followed their advice.
As it is, a year since my saga began I actually feel like I may be returning to my normal self again... absolutely no thanks to them!!
Yes, that's my experience too - my doctor kept lowering and lowering my levo until I was basically crippled - terrified and in a lot of pain, unable to do basic tasks - and yet told i was imagining my symptoms and basically to go away. It wasn't until coming on here, learning about my condition, how to understand tests and manage it, that I've found any hope - I've only been a taking a relatively small amount of t3 for a week but already its given me use of my body back, and hope for the future. They'd have had me incapacitated, living in pain for the rest of my life - my young daughter left without her mum. After just a week on T3 the difference is amazing - I still have lots of symptoms, but it's a definite sharp improvement and I have a route to get better now. I know what to do. I'm still a bit in shock i think. And i'm a bit furious that this can happen through NHS care. It should be public knowledge!
The whole situation is scandalous. For many, Levo works, but there is a sizeable minority who need more complex treatment and advice. Since being diagnosed myself, I am amazed that almost every second woman I meet is on Levo it seems! My private endo constantly reiterates that it is a serious condition, it effects the function of every cell in the body, every chemical reaction, yet by GPs it is seen as simple to treat. It makes me very sad to think of the number of people whose lives are ruined by inadequate treatment. I have friends I now know who are on Levo who know nothing about how it works, it’s connections to the heart, in particular, and who aren’t even blood tested regularly. My own GP told me that I was fine on 50mcg since I was closer to the normal ranges (not actually even within them!) and that the way I was feeling might be because I was depressed! Hence the private endo who has been a life saver for me. He gave me hope and monitors me to help me get out of this twilight life and back into the light.
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