Not at all impressed with the answer. So next step is being taken.
Anyone seen an Endo in Salisbury?
Hills.
We have received a response from the Medicines Management Team at Wiltshire CCG. The question you have posed is one that is received from time to time from patients. Advice is sought and gained from a Doctor in endocrinology at Salisbury Foundation Trust.
The response is as follows:
“The British Thyroid Association is quite clear on the use of armour thyroid and we follow this line and do not recommend prescribing of this on the NHS.
This document states that there is no evidence base to recommend an unlicensed product over a standard licensed medicine that has thousands of patient years experience in use.
There is no licensed armour thryoid product in the UK, and therefore any prescription would be an unlicensed product. The GP takes full clinical responsibility for any drug prescribed and it is their duty to prescribe a licensed product where available, ahead of an unlicensed product. Also to be considered is that unlicensed specials have no guarantee of quality as a licensed medicine would, and there is also no restriction on the price charged.
We therefore advise our GPs not to prescribe this on the NHS.
If the you as the patient have issues with the control of your condition on normal levothyroxine, then perhaps your GP could refer you to an endocrinologist so that they can advise if there are any other options for you.
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Hills
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This is only one excerpt I've read about synthetic vs desiccated thyroid hormones and I've read a few in my 15 years of hypo issues... The natural desiccate hasn't been recalled like the synthetic has. I agree with this guy, it makes my blood boil too >
It's all cost! Too many healthy people leaves less in big pharma pockets! Grrrr....
But Rod it works for me. I am so exhausted I want to sit & sob all day. I am just not able to function.
if I had any other illness & could not take a certain medicine (penicillin is a good example I am allergic to it) I would be given another option that does the same job.
Basically the CCG are saying because it fits the majority then tough.
Has anybody sought legal advice, surely my human rights to medicine are being abused or some legal angle can be used.
The closest person I know with hypothyroidism takes Nature-Throid. I am absolutely NOT saying that it should not be used.
But it is simply wrong to claim that there has never been a recall of any desiccated thyroid.
Further, if we go back to the days before accurate assays of desiccated thyroid product, variability of potency was a significant issue. They used to go by the total iodine content which an be far from an accurate assessment. Nowadays the potency is very much better controlled and stability over its life is better controlled.
The human rights issue is, I think, potentially a viable route. What I do not know is how anyone could go about it. Such things are far too expensive for anyone to afford so some sort of funding would be required.
I wonder why they follow the advice given by one charity,( the bta). And not a different charity, in this case thyroid uk, which has a much greater membership.
At any rate, what gives the bta the power to assume the right to produce a nationally followed guideline, when the official body NICE have no such
guideline?
Armour does not need a licence because its reliability and efficacy were well proven with over a hundred years of use, when the need for licensing was introduced, hence it was 'grandfathered ' in.
With regard to the price comment, I am sure someone must know how much the Nhs are typically charged per month for armour.... It can't be more than t3. (Liothyronine) which is an absoloter rip off price of around £120 a. Month for 25 mg daily.
Have heard some good repoerts about Salisbury. But who knows.... :-(.
Think I would be tempted to see what this chap in Salisbury has to say. I appreciate it may not be helpful but may be refusing to do what he suggests is another ripple of discontent in the pond! I've mentioned to an Endo that my thyroid journey started with what was then called extract from Canada and got raised eyebrows and then a look of disbelief. I once posted that I got results from this same Endo who refused to give me the ranges. I made a fuss and asked the practice manager to get them for me. I got a comment back it would have been easier just to ring up the lab. I knew that but wanted to draw attention to the fact of what this man was saying. Sometimes complaining, saying what you feel etc can have its positive side, may be no help to you but may be to the cause. The so called experts and the keepers of the purse need to know the peasants are revolting!
Hello Hills, I had a response recently to my post re T3 looking for sympathetic Endo. Feedback was Salisbury Endo sticks to guidelines.I am currently trying to get myT3 reinstated after 5years of good health on it and it ain't easy! Lots of buck passing. CCG in Swindon medicine lead says it,s up to Endo, GP says it's up to Endo and CCG ,Endo I seen privately says ok but doesn't seem to want. Ok it as an NHS patient but would LOVE to see me privately as a private patient ££££££, I wonder why? So just placed my first order of Cytomel. Endo insists I,m thyroxic but as we all know that's because of a line on a piece of paper,move the line and your fine! Good luck.
You would only make this claim "... that has thousands of patient years experience in use" in order to contrast it with something that doesn't have many patient years experience in use - maybe only hundreds? Without providing the other figures it is left hanging as a damning statement but lacking any basis for comparison.
Given the history of Armour and other desiccated thyroid products, the number of patient years of experience must be into many millions! (At some point I suspect that levothyroxine alone overtook desiccated thyroid in patient years but both are enormous numbers. And I don't know either figure.)
I'd also point out that they are not even clear about where those patients are! In the UK the lack of availability of desiccated thyroid products itself precludes significant growth of patient experience.
Also, the USA's FDA do take an interest in the quality of Armour (and other USA desiccated thyroid products). So there is some guarantee of quality. (At least as much of a guarantee as the UK Teva branded levothyroxine that was wiped off the market due to its quality problems.) And Erfa is fully licensed in Canada.
(There have been discussions aimed at reducing the difficulty of getting medicines which are fully licensed in one country available in others without necessarily requiring the full process to be repeated in each country. UK authorities have suggested that they are broadly content with the regimes in place in countries such as the USA, Canada, Germany and France. The difficulties lie with countries which do not have such good regimes in place. For example, companies exploiting tiny countries such as Latvia to get a European approval.)
I also agree who do the BTA think they are. They certainly don't represent my interests that is for sure. I contacted them when I realised that T4 wasn't making me better. Poor advise, all they were interested in was fund raising. No idea what these funds are used for maybe their annual picnic. Got better advice from here. Just a shame we can't all try the meds we would like to.
Interesting to see the stitch-up actually written out. They really are confident with this scam, aren't they? I can't go on - if I try and engage with this it makes me so angry.
I feel the same...surely something should be done to give GP's more confidence to try NDT, without having to rely on Endos that won't prescribe it. My endo has told me that if I really want to try it, I will have to find a doctor willing to try it. Ive been seeing him for 6yrs now and still not that much better, even though I eventually got him to put me on T3, which he has reluctantly agreed to increase a few times but now he won't put it up further incase it makes me Hyper, which he says he worries could give me a heart attack. I told him I would know if my symptoms became Hyper ones and he said so many people say that who have become Hyper and now I have to have a heart monitor attatched to me for 24hrs to measure my pulse rate and he says if its as high as it was in his office he will be bringing my meds down. I told him that I still have hypo symptoms and he just laughed at me and said he just can't go on symptoms, which I told him are really all he should be going on. He more or less told me to find another doctor if I wanted to persue trying NDT, as he wasnt prepared to give it on the NHS or advise my GP to prescribe it, even if they are allowed to on named patient basis only, which I told him had been allowed since 2009, as I had found out in my last few years of research on this site. He was very arrogant in his attitude, as he always has been in the past. I think the only way to try NDT is privately or self medicate, which is not how we should be treated, when we need help to get well, especially when been trying T3 aswell as T4 and still symptomatic.
I feel like my health has been totally ignored for so many years as been hypo for 29yrs and most of my life has been a struggle, with many episodes of depression and now physical symptoms appearing over the past 5 yrs and getting worse. I don't think any doctor should just ignore us and push us into self medication, which is our only choice, if we can't find a good thyroid specialist willing to be open to NDT.
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