The Universal Declaration of Human Rights (United Nations, 1948):
Article 3.: Everyone has the right to life (p.2);
Article 7.: All are equal before the law and are entitled without any discrimination to equal protection of the law. All are entitled to equal protection against any discrimination in violation of this Declaration and against any incitement to such discrimination (p.3).
It looks like thyroid patients would have grounds to appeal to the European Court of Human Rights if the liothyroninie is withdrawn without an equivalent replacement.
I think thyroid patients do have a human right to health / life. They are very quick to remove your thyroid leaving you dependant on either T3 or T4. I can only take T3 because T4 poisoned me. If my GP tells me I can't be supplied with any more T3 because it's too expensive I'll just say OK No problem. I'll probably survive for another month. I'm not even going to argue about it. The help & advice we get on this forum gives us a lifeline & life. I've lost count of the amount of times I've had to explain to doctors & pharmacists I have no thyroid I need T3 medication. Would you say to a diabetic they can't have their insulin? Sorry for the long rant. If it wasn't for this forum I would be a mental & physical mess
I'm in same boat Thyroid removed can't take T4 & just waiting on Doctor withdrawing T3 terrible situation "here's the medication (T4) take it or leave it " No Options for Thyroid Patients "
If there is working medication available that increase the quality of life then it's almost criminal to forbid that medication. There is 0 excuse to ban these medication if dosed correctly it cause no harm, but makes ones life liveable and worthwhile.
Banning other medication but T4 only is against human rights. One should have the privilege to get treated with medication that not only increase the quality of life but reduce the need of other treatments. There is 0 excuse for medical community to force patients get/be unwell and basically deny their human rights to have a life they could have if medicated properly.
If I ever needed T3 I feel my rights are priority, not doctors, not pharmaceutical companies, not government, not health care.
I will never ever accept them to determine the quality of my life or deny achieving satisfying wellbeing. Never.
Instead carrying on this ridiculous war doctors should concentrate on treating other illnesses with such passion they now put down hypothyroids. They are wasting everyone's precious time now.
If it's about pride, then let me buy them seasons to spice up the pride they should swallow. They should be humble servants of society that benefits having healthy people.
Our rights weigh more than theirs. No one can ever tell me that this is how it is. There is proper medication available. It's criminal to deny it. If it wasn't available we would do the best with current medication to make it work for each of us. But as I said as T3 and NDT exist it's just criminal to deny it.
Well said Justina. Unfortunately doctors are not humble people... they should be but for most of them they lack in that department. Unfortunately many doctors do not have to endure the disabilities many patients have to endure, the low quality life, the difficulties to cope with the slightest task, the feeling that one's life is shorten because of lack of correct treatment. If they become hypothyroid themselves I can imagine they would not hesitate in getting the very best treatment regardless of the fact they deny it to patients.
When I told my GP last week that it was scandalous that Big Pharma pushed the price of T3 to such a level that NICE had to stop doctors prescribing it because of cost (then saying there is no evidence T3 was right in the first place - adding insult to injury!) and that the NHS should negotiate better prices with Big Pharma, I was shocked by her reply that "We can't do that. Large pharmacieutical companies give us lots of money to do research which we could not do otherwise!"...
That is so corrupt, so unconcerned. The NHS are trading patients' lives for large sums of money from pharmacieutical companies to do research. The fact they find this acceptable is outrageous and inhuman!
Banning T3 is criminal if some people can only survive on T3. They are literally taking away people's lifeline. I can't think of another health example where they are depriving people of the medication they need to live. My heads gone now with this. I keep thinking they are trying / going to commit corporate manslaughter by withdrawing T3
Exactly as some can't simply tolerate T4 only. Their life depends on T3. For them it's nothing but death sentence as eventually they die because of severe hypo!
well done Pamela for raising this issue ... it is only the strength of us in numbers that can affect the issue . I have graves' disease ... so i don't need T3 but i feel so strongly that those who need it are being denied it , when it is so crucial to their lives , maybe the time has come to join together and fight for this cause.
Indeed madge1979. The denial of correct treatment to patients who can barely function and feel they have been put prematurely on "death row" is scandalous! We all need to unite to fight this lack of care and humanity. Thank you for suggesting it. Hope you're doing well with your own treatment.
Hi JGBH I am thank God doing well ... only because i now self medicate alas..
My sister however, who has suffered with being HYPO for many years is sadly coming to the end of her life because of lack of medical help with her Thyroid disease ....and by being neglected for a very long time .
She lives in canada i live in Scotland and it's not easy to be hands on .. i begged her recently to get someone to take her to her dr. for a proper blood panel testing ....they did take her ..... and i was sent the bloods results in an email yesterday to see what i thought !!
the ONLY thing on that blood test paper was her
TSH and it said she was ..... NORMAL !
i broke my heart reading it .
That is why i am disgusted at the attitude of Dictors regarding the T3 that you all need and long for and drive yourselves crazy trying to find and buy ..... it's a disgrace.
Magde - Pleased you are doing well but not thanks to so called caring doctors....
So very sorry about your sister. Do understand how you are feeling, and so far away. It is digusting the way we patients are treated by overpaid and uncaring so-called medical professionals!
Thank you lovely xx the campaign I'm part of is fighting for improved treatment in general for all thyroid patients (yourself included). The T3 issue is more prominent now only because of the urgency and timelines in the consultation xx
Thank you so much for your support xx ❤️❤️❤️
I do think withholding T3 is against our human rights. I've discovered I can't convert T4 to T3 and the awful thought of just becoming more and more ill over the months and years because I'm not allowed to have T3 is a terrible one. Hence I'm sourcing it online, and I hope once I tell my doctor, that she'll at least understand and continue to support me.
No-one should have to go without such an essential medication, and clearly they've not thought through the cost implications of all the ill health that will result! I'm totally disgusted at the decision and we've all got to fight it, not only for ourselves but for those coming along afterwards.
Please everyone sign the itt petition as time is of the essence, Ccgs are already taking t3 off prescribing list before consultation is even finished, we need everyone to pull together if we are to get heard don't let them get away with this show them our lives do matter.if enough of us shout we will be heard.
Yep. I agree it's unlikely a singular thyroid patient would appeal to the European court due to cost but let's not let that stop us from pointing out they may be in breach of it. Let's hit that 100k signatures on the petition and have it reach parliament for a proper discussion. Xxx
Pamela, I do not take T3 (I am on NDT) so I do not feel as though it should be me making any complaint personally. As there was such a fuss made by the GMC against Dr Gordon Skinner for his prescribing NDT to the extent, as some allege, that this caused his untimely death, I think it would be very much appropriate if a complaint could be made against the GMC by those who do take and rely upon T3 that any doctor supporting the withdrawal of T3/Liothyronine from existing and future patients who need it are acting against the essence of the GMC's very own "Good Medical Practice", available from their web site in pdf format.
Section 56 for example says that:
"You must give priority to patients on the basis of their clinical need if
these decisions are within your power. If inadequate resources, policies or systems prevent you from doing this, and patient safety, dignity or comfort may be seriously compromised, you must follow the guidance in paragraph 25b"
which is, effectively to make a complaint to the BTA.
Section 65 says:
"You must make sure that your conduct justifies your patients’ trust in
you and the public’s trust in the profession."
In reality the withdrawal of T3 promotes distrust in the medical profession.
Other points are relevant such that in another GMC document:
“CONSENT: PATIENTS AND DOCTORS MAKING DECISIONS TOGETHER. (9) YOU MUST give patients the information they want or need about (l) any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.”
Meaning that any doctor who refuses T3 (or NDT) treatment for primary hypothyroidism MUST then tell patients where they can purchase it from.
Suggest you put forward this idea on the forum for a formal complaint to be put forward to the appropriate organisations.
I have already written a number of formal complaint letters and the campaign as a whole have done the same. The campaign looks to support thyroid treatment in general for ALL thyroid patients. The T3 piece has only become a prominent issue because the NHS have banned it before the consultation is even finished. Time is of the essence on the matter of T3.
My doctor will not under any circumstances prescribe NDT as a source of T3 either else I would be asking for it. The campaign also addresses the fact that NDT is not readily available to NHS patients in a consistent basis therefore their claims in the consultation that it is to be removed because there is a suitable replacement is completely untrue.
Their argument is that T4 is a suitable replacement yet our campaign provides 14 solid pages of evidence that it is not .... not to mention the face that T3 is completely different to T4 therefore cannot be compared.
Thanks for the info though. Appreciate it. I'd urge you to sign the petition regardless .... who knows if your NDT might be taken away or that you might need T3 in future ... also as a point in standing together on the issue due to one common ground i.e. we're all thyroid patients x
I buy my own NDT so it cannot be withdrawn, but CAN, of course, be unavailable.
I am still awaiting a written reply to my complaint to the local APC concerning NDT, sent last September. It has been answered online (below) but I need this to continue my personal campaign, aimed at either the UK Endocrinology Society or the BTA next. The points mentioned above will form part of this complaint.
This is an update of the current statement. More recently available studies have been
incorporated into the statement but the overall conclusion is unchanged. There is no reliable evidence to support the suggestion that desiccated thyroid has advantages over licensed levothyroxine and liothyronine and it is unlicensed. The black statement is consistent with current national guidance. The APC thanked the author for the work on this review. The author is currently writing a structured list of the information considered and a response to each study, which will be circulated to all interested parties in due course. The black statement was approved by the APC.
I have an appointment with my MP in September but will I be well enough to go by then? The British Thyroid Association actually say, "reducing Liothyronine should be done gradually", I have just had mine cut off and it then says “Careful monitoring of the patient by an endocrinologist during the transition period is essential.” I'm not getting that either. I've written to an endo so hopefully will get some advice better than my GP. My old endo has retired sadly.
It makes me equally sad and angry to read posts such as yours.
I hope you stay well enough to attend your appointment, but I would not hold out much hope of getting any action from him/her. I saw my MP and he was as much use as a blind dog is to the RNIB.
You would imagine that any MP would be only too willing to get national press coverage for the farce of the current Liothyronine and NDT situation, and many patients will also have spoken to their own MP's, so why has it not yet become front page news on every paper and headline news on TV and Radio?????
After all, appropriate treatment at "normal" prices for the medicine will save the NHS millions if not billions.
I can only try but as you say, it's probably a waste of time. At least I have two months of T3 that I can fall back on if I start to go down hill and then all I can do is source it online. I'll keep you all posted.
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