Found this on open prescribing
The price of Liothyronine is now the same as in 2014 but doesn’t seem to be making any difference to decisions being made by doctors and CCGs
There’s loads more information on there showing which surgery’s and CCGs do and don’t prescribe it
Even now, it is of the order of £3 a tablet as contrasted with Thybon Henning at about 30 pence. (Figures are very approximate in order to make them easy to remember.)
Although that is a huge reduction, I suspect it is nowhere near low enough for the CCGs, etc., to reverse their policies.
The 'professionals' much prefer prescribing levothyroxine. Also, many people who're prescribed T4 (levothyroxine) feel fine upon it and will not be searching the internet for help/advice.
Also the higher cost of T3 also is considered by professionals.
How they can make the Assumption that everyone should feel o.k. on levothyroxine - a section of us cannot and do not feel better. I felt worse than before being diagnosed when TSH was 100.
It is a section of hypo patients who cannot and do not improve at all on levothyroxine. Many doctors and endocrinologists don't seem to believe this so will not offer options (even a trial of 'options').
We have to do the searching ourselves and considering that not everyone has internet connection those people will not be able to recover their health or feel 'back to normal'.
A number of patients feel well on NDT (natural dessicated thyroid hormones) but this is also a well-established replacement hormones and now very difficult to get prescribed. It was also withdrawn from being prescribed.
The following is by a Research/scientist/doctor and expert in the use of T3.
ndnr.com/anxietydepressionm...
My question is, is this so called sea of people who are supposedly 'doing well' on Levothyroxine only, truly doing well? How do they know?
At the risk of being patronising (I'm aware some here are well versed and know for certain they are doing just fine on it) I imagine based on the dire experiences that myself and a great too many others go through to get acknowledgement, let alone treatment, that there may well be a great many who think they are doing well, but have ongoing eye problems, or think they are doing well, but have developed hair loss or think they are doing well, but have this separate entirely unrelated diagnosis of chronic fatigue, or fibromyalgia, or carpel tunnel or anxiety, or heart problems, or chronic dry mouth, or fertility problems.
I mean, literally it is a disease the GP cannot see, the GP will tell you all these symptoms are nothing to do with your thyroid because you are adequately treated, so how can you measure what you cannot see?
What if someone is taking levo and never questions anything (and why should they have to) believing doctors are very well versed in thyroid disease, and accepts what they are told about extant symptoms, namely they are the consequence of some other (often undefined) thing? They are then polled and say Levo is working fine.
How do they compile this information?
Yes that is patronising !
Why?
You stated "At the risk of being patronising" and you were ! You are implying those of us who are well on Levo are delusional and incapable of questioning our Drs about other health issues.
Yes I have heart problems but nothing connected to taking Levo.
Yes, so I caveated by saying many on this forum - including yourself - are very well aware about thyroid illness so can accurately determine that they are well.
Interestingly if data were collected I'm sure I myself would ostensibly come under those 'doing well' on Levothyroxine. In fact years ago I might even have said so.
I have high cholesterol, chronic fatigue, memory problems, concentration problems, fibromyalgia, hardly any hair, and until recently (after getting help from a private dr) relentless pain.
According to official guidelines and a plethora of GPs my TSH is below 5, so I am 'doing well' and everything else is not related to thyroid dysfunction, not even the high cholesterol. Am I doing well?
Before I became educated here and elsewhere and read books, I too was sure that not only were my problems in my mind, but it was all due to some other unrelated nervous disorder, or bad genes - then I just accepted the undefined diagnosis I was given.
I meet quite a few people with ongoing chronic problems all who assert they are doing well on mono-therapy or indeed on nothing at all as in two family members.
I'm simply saying we have to assume most people take at face value that their medication is working fine. Of course some people are doing well. But due to what the definition of 'well' is how can we be certain this is, in fact the 'vast majority?'
I think the people I know on levo are doing 'well enough'.
And when the GP is saying that bloods are fine and there is no alternative treatment 'well enough' becomes 'well'.
i agree .. 'how DO they come up with the stat's for those who are doing fine ?" I mean, yes OK, i DID have a relative who really was fine on (250mcg )Levo.
But if you looked at my GP notes they would say "adequately compensated hypothyroidism / on levothyroxine .. followed by possible ? cfs/me.. plus loads of counselling , has declined all offers of AD's... plus knee bursitis... plus history of repeated need for physiotherapy referrals "
But i'm sure if a researcher looked ,this record would be used as a statistic to confirm my successful treatment with Levo.
And i didn't really question anything for years .. they said 'your thyroid problem is fixed now it must be 'something else'... the usual story. I believed it for a very long while.
So if I was asked 10 yrs ago .. i would have said "yes it's treated with Levo .. i have no problems with Levo... I've never felt quite 100% again , but (mumbles embarrassed into sleeve) .. i might have M/E or something as well now ...."
I know of at least two other people locally who have been assured by a popular and well respected (by doctors!) endocrinologist in the Guildford area that all was well with their levy thyroxine medication despite their symptoms remaining. Two of us are now experiencing hair loss as well as continuing to suffer from a raft of other under-active thyroid symptoms. I paid privately for the pleasure of being dismissed with a suggestion that my bloods are fine and had I thought about antidepressants for my sleep problems? - aaargh! This was despite me telling him that my sister and maternal first cousin could not get on with levy thyroxine and please could I try NDT. I even emailed him this link paulrobinsonthyroid.com/dio... I’ve just received confirmation that I carry the D102 gene variant causing poor T4 to T3 conversion. I’ve not bothered to email him the genetic result yet. I’m hoping my hair will grow back first so that I can email him a photo of my newly-restored lustrous locks as well as the genetic report. Here’s hoping that it will come to pass and also before he retires. We really do need more female endocrinologists!!!!
Well I've seen plenty female GPs and gotten zero sympathy, but maybe that's because GPs know little about thyroid or female hormones. I think more women taking up medical specialisms (especially endocrinology) and in senior consultancy roles might help a bit, but the entire structure of medical training is male cultured by proxy..... apparently lots of women would like to specialise but become GPs because the study is very full on and they want to squeeze in a family.
Fingers crossed for your hair! I know what's its like. If it hasn't been too long the probability of it growing back is better.
Thyroid UK's Response to NHS Consultation
