T3 - for those who've had it withdrawn or refused - Thyroid UK

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T3 - for those who've had it withdrawn or refused

shaws
shawsAdministrator

This is from a past post by diogenes which will be encouraging to those for whom it was withdrawn or refused:-

"diogenes

a month ago

I, Peter Warmingham and Jonathan Leahy will be going to meet Leeds CCG next week. Among other things we want to try to rationalise with the CCG what their attitude is to T3 treatment either in combination or alone. Also we want to bring up the ongoing cost of T3 in the UK, and why cheaper, equally well controlled sources are not available. It is absurd that say at Dover, a tablet costs £9, whereas 30 miles away in Calais, it costs pence. Also I'd like to challenge the basic ethical morality of permitting those who use T4 only to do this free of charge, yet patients who require T3 and are refused it must consequently pay large sums to maintain health. The lack of thyroid is a chronic problem lifelong, and any treatment should morally be available on an equal basis. Finally I want to bring up the gross deficiency in prescribing T3 to those who need it. From UK NHS figures of T3 spend and the average cost per tablet, I estimate 58000 men and women in the UK will require T3 in some form, whereas less than 7000 actually get it. Also of course there is the ehtical problem whereby path labs have taken it upon themselves to decide what tests to do and what not. This is again ethically indefensible, because decisions are made without any knowledge of the patient whatsoever. All the labs should do is a) do the tests requested by the GP, and b) ONLY flag up without further comment if any results are out of range. They have no further right to interpret - that is NOT their responsibility.

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I’m fairly new to all this after 20 awful & ill years on Levothyroxine- ( so by T3 - what do you mean ?) I now take Natural Dessicated Thyroid - Nature Throid - which costs a lot here in Uk I buy from a specialist pharmacy & get a private prescription from a private Endocrinologist- sorry if I sound dense - but here’s an awful lot to learn & we seem to need to self treat & diagnose ! Ive been trying to buy it direct from USA with my prescription- but have never had an answer from the manufacturer to

My email about where I can get it when there .

shaws
shawsAdministrator
in reply to Avidreader

T3 is the Active Thyroid Hormone which is supposed to be converted from levothyroxine, which is IF the patients can do so.

Many do but the majority on this forum don't feel well at all and it is assumed they have difficulties but the medical profession does not accept this. I can state this as levothyroxine doesn't suit my body at all. In fact, many feel far worse upon it than before they were diagnosed and the 'experts' disbelieve us and probably think we are untruthful as they do not know any clinical symptoms and cannot look beyond a TSH.

NDT is Natural Dessicated Thyroid Hormones - the very original thyroid replacement first introduced in different form in 1892 and that's when lives were saved from then on and gradually spread throughout the world. Before that we died of a myxedema coma. NDT was, I assume, a sensation and made from pigs thyroid glands. It still is successful in the present day except through misinformation and untruths the Associations due, I think, to Big Pharma, the NHS has withdrawn this from being prescribed - despite it being more natural to the human body (being made from animals glands) in favour of synthetic levothyroxine which is T4 alone. Doesn't make sense - does it?

NDT contains all the hormones a health gland would produce.

One of our deceased Advisers, before his untimely death, wrote to the Associations about their untruthful statement about NDT and requested for three years for a response and they never did. This is what Dr Lowe wrote:-

thyroidscience.com/Criticis...

They couldn't respond because he was a scientist/researcher and they aren't but they made the regulations that we, the patient, cannot have options if levo doesn't help us recover and remove symptoms. They know no symptoms anyway in these modern times. We are human beings so our bodies need replenishing of essential hormones and options of synthetic or 'natural'. Besides would we prefer to have 'all the thyroid hormones' or just one which may or may not suit. Some also cannot recover on NDT because their body is different in some way and can only recover on T3 (liothyronine) the Active hormone required in our millions of T3 receptor cells. This has now been withdrawn and there is an investigation underway at present and a Debate in the Lords a couple of weeks ago about the withdrawal of it. The debate lasted from 3 p.m. to after 8 p.m. The cost of T3 went up by 6,000%.

To find a source for your NDT, with prescription, put up a fresh post asking for information to be sent to you by Private Message as no information is permitted on the Open Forum of where to source prescription medication. Your post will then be closed and you will receive private messages/

Avidreader
Avidreader
in reply to shaws

As usual huge thanks for all the care you guys put into this forum - I am learning g from it every day - I currently get a private prescription from a UK Endocrinologist- ( he doesn’t charge me for the prescription just my appointments ) he also asks my GP to do blood tests ( saying to her that I’m self funding ). I buy my Nature Throid Uk at a specialist pharmacy - what I was wondering is : is the T3 you talk about with the government bodies Nature Throid ( that USED to be prescribed by NHS ? ) Or another type of T3 ? What a minefield & all we want is to be well & work & live a normal healthy life . I’ve had to work for myself - as there’s no way I could work 9-5 Over those 20 bleak years on Levothyroxine- thanks once again - it means a lot to have your support 🤗

I do hope someone gets the message soon. For me it’s not being diagnosed or treated correctly for 15 years as well as labs refusing to do T3 and T 4 when requested by GP, how can my GP help me without these essential results??!!! It infuriates me so much!!!!

Thanks Diogenes!

Thank you for posting this shaws. Has anything come of this meeting yet do you know?

shaws
shawsAdministrator
in reply to nightingale-56

I haven't heard yet but wheels turn slowly at times.

I think it is patients who should have the say-so of what suits them. Why be unwell and losing jobs and family breakups because family members cannot understand, at all, why we're taking prescription medications and are still complaining.

Families and workplaces cannot understand that it hormone replacements we need which isn't being provided in a way which heals. We are continually unwell due to the insensitiveness of people who are supposed to be healers? It isn't our fault our gland has failed. Maybe if some who make the decisions and lose their gland their thoughts will be different or maybe we can insist they stay on a product which doesn't enable them to function at all. They are unaware of clinical symptoms - know none and don't know what the patient is talking about.

Just let them have a quarter of the following and they'll be sourcing their own as they can afford it but many patients are unable to and remain unwell and the worst is when someone who needs help/assistance commits suicide.

thyroiduk.org.uk/tuk/about_...

Ask any Endocrinologist to name symptoms? Do they listen? but those who do are penalised by their Associations and made to toe the line. TSH and T4 alone.

No professional listens to their plight or understands or seems to have that instinctive compassion for another. We need more Dr Skinners, Dr Peatfields, Dr Chandy (B12) who were pursued for doing as taught as students in the days before blood tests. They were also fearless in treating their patients to good health.

doctorabel.us/b12/a-doctors...

Avidreader
Avidreader
in reply to shaws

Do we know why autoimmune disease is becoming so common ? Everywhere I go i meet people with thyroid illness ! I’ve become like an evangelist pointing them all to Ghyrpid .org ! In one week holiday in Cornwall last week for example 4 people ! All struggling !

GMOs, glyphosate (which destroys gut microbiome), air pollution, plastics - who knows?

🤢

shaws
shawsAdministrator
in reply to Avidreader

It is such a shame that people have been forced to struggle when it should be so very easy, i.e. get prescribed the right hormones and take optimum dose (regardless of TSH) and get relief of symptoms and back to feeling we have normal health. If only.....Endocrinologists and doctors had refresher courses with a collection of members from this forum.

Would we permit them to pass exams? ☹️ or 🤭 Not if they were unwilling to permit us to try T3 added to T4 for six months, or NDT and if the latter two didn't work, T3 alone.

I agree about patients having what suits them best. Thank you for the links shaws .

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