6 weeks ago GP, who I have never met, or rather pharmacist, told me by letter that they will no longer be prescribing or writing private prescriptions for Armour, replacing it with T4 which made me very ill years ago. . And were reducing my T3 to 10mcg down from 40mcg. The local CCG wants anyone on more than 10mcg T3 to be trialled to get down to that. I am 73, limited income, and feel shattered by this. Both the decisions, and the manner. They will not discuss this with me, and says it is final. The CCG and endocrinologist will back them as this is the outcome they want, I can't afford to go private. Any ideas, please? Emigration is out of the question!
Don't know what to do: 6 weeks ago GP, who I have... - Thyroid UK
Don't know what to do
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annca1
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You could make an appointment with your MP to ask for support (letters are no use, visit or Zoom appointment). Depending on how useful the GP / endocrinologist is to you you could consider making a complaint to the GMC (better if your MP supports you) on grounds of medical negligence / recklessness because they have not given you a consultation or even discussed your care.
I don't see what the CCG has to do with private prescriptions for Armour. I think they only way we can counter these attacks is by challenging them in a way that will have comeback for those implementing these policies.
Jimh111 , sorry, my original message seems to have disappeared. Good advice ref MP appointment by Zoom or visit. I think the whole dr thing has worsened since they stopped seeing their patients. I think it is now an 'us and them' mentality. They get their funding for us whether they treat us or not. Much less bother for them if they don't actually do what they are supposed to do. It was the dr, who I have never spoken to, whose letter had the comment about not writing private prescriptions for Armour. I agree about challenging these practices, and reporting those making them. Thank very much.
shawsAdministrator
What a dilema - all due to money, money, money.
Where has the NHS gone? The 'powers that be' seem to be more concerned about cost rather than restoring people's health these days.
This excerpt from above is ridiculous:-
"They will no longer be prescribing or writing private prescriptions for Armour, replacing it with T4 which made me very ill years ago. . And were reducing my T3 to 10mcg down from 40mcg. they will no longer be prescribing or writing private prescriptions for Armour, replacing it with T4 which made me very ill years ago. . And were reducing my T3 to 10mcg down from 40mcg. The local CCG wants anyone on more than 10mcg T3 to be trialled to get down to that."
All of these people who've made this decision, need their brains checked as it is a lot of nonsense. It is all down to cost and ignoring what restores a person's wellbeing.
All of us who have dysfunctional thyroid glands need different doses and/or options other than levothyroxine which may make us very unwell. I believe that the 'powers that be' are making these decisions due to cost rather than people's health and wellbeing when we need the replacement hormones the body needs to function normally.
I would make an appointment to consult with your local MP and complain.
We cannot just swallow medication that makes us more unwell and being refused a medication that restores it. We are not machines - although they way they are promoting changes ignores completely the wellbeing of a human being.
Thank you shaws..Yep, nuts. The trouble is that GP surgeries are first most businesses. Reading about it on The Kings Trust website. Despite BMA, the GMC, NHS England, saying that they should prescribe what is right for the patient, they are not doing it. They are treating us like jelly babies on a conveyor belt, rather than individuals with different needs.. It's like deciding that all diabetics on insulin require the same preparation and dose. It is unfair, dangerous and needs shaming of those involved.
I have read in so many sources that Drs do not need to do this. That they can continue to prescribe the meds if they think T4 would not be appropriate. In my case the doctors are clearly the problem, when the GMC website says that they should not leave patients unmedicated.
I have asked Devon healthwatch to pass this to Healthwatch England, as they advise NICE and NHS England.They look for patterns or repeated issues, and can ask the other organisations to take action. I will certainly contact my MP,
Do you know of any current campaign to bring this to government, the media etc?
Lyn Mynott who began Thyroiduk.org.uk and who works hard to change the attitudes of the BTA etc has met with MPs etc. We wouldn't have this forum but for Lyn and others who're behind TUK.
We can also become members of TUK who also has a Conference for members every few years. Many travel distances in order to attend. The more signed up members we have the stronger our voices.
thyroiduk.org/about-thyroid...
thyroiduk.org/help-and-supp...
Also make an appointment to see your local MP to see if he/she can help in some way. We should not be denied thyroid hormones that enable us to relieve disabling symptoms and feel well again. If we do not have the correct thyroid hormone replacements that make us well and should not have been removed from being prescribed. Those people who've removed them from being prescribed should have their thyroid glands removed and then they will understand what many people have to go through in their daily life.
NDT for instance (natural dessicated thyroid hormones) first saved lives from 1892 onwards - no blood tests required but the skill of doctors and from then on we didn't die an awful death.
I think it is patients should be able to choose what to trial and not what is insisted by those who do not have hypothyrodism, as the aim is always to relieve symptoms not add more worries on our shoulders when we've enough to cope with. We want medications that relieve our symptoms and enable us to have a normal life.
Why have those 'powers that be' who obviously haven't a dysfunctional thyroid gland removed NDTs, and/or restrict T3.
Why is the treatment for people who have dysfunctional thyroid glands going backwards - even before 1892 when the introduction of NDTs first saved lives.
Thousands may be well on levothyroxine but they will not be searching the internet or trying to keep their jobs as clinical symptoms can make it impossible to do.
History of NDT
First used in the early 1890s, natural thyroid preparations, mostly DTE, were the standard treatment for hypothyroidism until the mid-1970s.
The earliest forms of natural thyroid came from the thyroid glands of cows, but early in the 1900s, the Armour meat company got into the thyroid medication arena, marketing its own natural desiccated thyroid from pigs, known as Armour Thyroid. All commercial DTE now comes from pig thyroids.
DTE contains both thyroxine (T4) and triiodothyronine (T3), as well as a hormone called calcitonin and other compounds. A normal human thyroid gland produces T4, T3, and calcitonin as well.
When synthetic T4 (levothyroxine) was first available in the 1950s, doctors were reluctant to prescribe it because they were afraid that since it didn't have T3 as DTE does, it might cause people to end up with T3 deficiencies. It was also considerably more expensive than DTE.
Around the same time, there were starting to be serious concerns about the potency of DTE. With a limited shelf life and major variability in the amount of active hormones found in the medication (it could contain anywhere from twice the amount needed to none at all), DTE began to get a bad reputation from which it hasn't totally recovered, despite the fact that in 1985, revised U.S. Pharmacopeia content standards made the potency stable.1
In 1970, scientists discovered that T4 converts to T3, alleviating the previous worry that levothyroxine as a standalone treatment could lead to T3 deficiency. In addition, the specific lab test to check thyroid stimulating hormone (TSH) levels was developed in 1971, giving doctors a way to better monitor the effects of hormone replacement medication.
New awareness of T4's conversion to T3 and the advent of the TSH test sparked the trend toward increasing numbers of physicians prescribing levothyroxine as the sole treatment for hypothyroidism. By 1974, the treatment recommendations proclaimed levothyroxine "the agent of choice."1
Despite the preference toward levothyroxine, DTE started to make a resurgence in the 1990s as interest in natural medicine increased. At that time, patients who weren't feeling well on levothyroxine were also becoming more empowered and aware of treatment options—like Armour Thyroid, Nature-Throid, and other desiccated thyroid drugs—thanks in part to the internet.
Taking Desiccated Thyroid Extract Medications
verywellhealth.com/armour-t...
Thank you Shaws. This is really useful and so kind of you. I have just become a member. I thought I had done so last night, but it was another one, thyroid advocacy.
That's good you're now a member as the more 'members' the stronger our voices for Change in Attitudes of the medical profession towards those who have dysfunctional thyroid glands. We should be allowed to trial different options and nothave long-standing and helpful replacements to be removed willy/nilly by those who do not have a dysfunctional thyroid gland.
shaws, I think the problem is dyfunctional medics, not dysfunctional thyroids!
Quite a number, I think, would be willing to prescribe but not permitted to do so and might even have their licence withdrawn.
But how can they be putting their licence at risk when guidelines say that if there is no alternative they can prescribe medicines on the amber list.
7 thyroid patient groups worked together in 2018 to campaign for T3, including TUK, ITT, TTT and TPA. They wrote a significant dossier requested by DHSC, and went to NHSE and several members of The Lords who are still supporting us. bit.ly/LiothyronineDossier2018
Much work has gone in the background and several more reports written. We had made good progress, getting the RMOC T3 guidance improved and confirmation from NHSE that CCGs should be following all national guidance. Then Covid happened of course and things stalled, but we are having another push.
Devon is known by NHSE not to be following national guidance, and restricting T3 to a ridiculous maximum 10mcg daily. We are hoping to get them to move on that, but it is a hard slog.
Rest assured a lot is going on in the background, but I'm sorry it is painfully slow.
Poor you, that is awful. I would print off the NICE guidelines and highlight the bit that says that some people need T3 and also the bit that says that those people who are stable on T3 should be reviewed by an NHS endocrinologist and not stopped by the GP. You can then demand ( yes I use that word deliberately) that they refer you to an NHS endocrinologist of your choice who is on the Thyroid U.K. approved list.
I would also print off the guidelines about patient autonomy in which it is made clear that patients are entitled to discuss their treatment and be involved in decision making.
Direct it at the GP and not the pharmacist who are only carrying out orders.
Good luck!
Hello Anncal :
The whole situation is a total disgrace.
If your doctor was writing a private prescription for your Armour, presumably you were paying for this NDT - I don't understand why he is changing his mind.
Private doctors and endo's do write private prescriptios for NDT and T3 : it's a lucrative income stream as the NHS leaves a proportion of hypothyroid patients high, dry and increasingly unwell.
It is possible to buy Armour and other well known brands of NDT from the States without a prescription.
It is possible to source other brands of NDT from Thailand - without a prescription and where many of us on here source our thyroid hormon replacement, just as other people on here are having to source their own T3 :
Quite how 50 T4 is meant to help you - I've no idea - and just wonder, since you have other health issues, how this will impact on your overall wellbeing and what the doctor's thinking .
Having just reread you post I 'm guessing your original doctor has retired and been replaced by a new broom who is sweeping clean away, any arrangements other than those laid down by the local CCG and following NHS dogma to the letter - with no understanding nor medical knowledge of the implications of his actions.
Hi Pennyannie, thanks for your reply. I have only had NHS prescriptions, not private, except from the wonderful Dr Peatfield. The original GP retired a long time ago, but others have continue to sign the prescriptions. The only person to hassle me about Armour over the years was the pharmacist. She said she was on T4, and I should be, too.I can't afford to go private, but I may need to look into buying from abroad, if I have to, then. Although, I an concerned about scams.
Yes, I understand totally, I only started feeling like criminal and going " my own way " buying through the internet a few years ago at age 71 !!!
Onwards and upwards :
It is a great pity that hypo people who take levothyroxine may find they are more unwell but because the majority of hypo patient do fine upon it, the insistance is that T4 alone is sufficient is ridiculous.
The pharmacist has the cheek to state that because she has no symptoms with levothyroxine obviously has no understanding that a section of the society does not and cannot recover with it. In fact manyy feel much more unwell. I am one of them.
It's just like 'chocolate' some people love it, some don't really care about it and others may hate it.
I keep coming back to the issue of insulin for diabetics. If someone needs insulin, tablets won't work. The other thing is, the vast choice of medication for diabetes, and how it is tailored to the patient, makes a mockery of the lack of choice for hypothyroidism if t4 is not tolerated.
We need multiple doctors with the attitudes of Dr Gordon Skinner and Dr Barry Peatfield - they were trained in the same era and I know Dr S has since died and am not sure about Dr Peatfield.
They healed patients and both were a joy to have a consultation with - I was fortunate to do so.
Here is a letter I wrote for someone else that may help you
please copy and paste it into a work processor and amend it to suit your own preferences and circumstances
then search for and download the documents and attach them to your letter
Your Address line 1
Your Address line 2
Your Address line 3
Your Post Code
Dr. name here
Surgery name
Address line 1
Address line 2
Address line 3
Dr.s Post Code
Dear Doctor (insert Dr’s name here)
Refusal to prescribe liothyronine (T3)
British Thyroid Association Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee 2015
PrescQIPP Bulletin 121 Recommendations 2016
BTA Prescription of Liothyronine in Primary Care 2017
NHS England Items which should not routinely be prescribed in primary care: Guidance for CCGs 2017
Health Act 2009
I write following my consultation with you on (insert date here ??/??/????) during which you informed me that you could no longer prescribe T3. You told me that the reason was the Clinical Commissioning Group/Health Trust had banned prescription of T3. I believe that this decision is irrational and unlawful and therefore I request that you continue my prescription of T3. I have a clinical need, guidance on prescribing liothyronine allows for a clinical need and several judicial reviews have declared blanket bans to be unlawful.
I have a clinical need for liothyronine.
I have seen (insert doctor’s/Endocrinologist’s name here) at (insert surgery’s/hospital’s name here) who has recognised my need for T3 and has advised that I am prescribed T3 because my health did not improve on T4 alone.
(You may include additional information about how you did not thrive on T4 mono monotherapy)
Since taking T3, my signs and symptoms have resolved or partially resolved. (amend the points below as necessary)
• My “brain fog” has cleared
• My face is less puffy
• I feel less fatigued
• I feel less irritable
• I am able to exercise more regularly
• My blood pressure has gone down
• My pulse rate has increased
• I am able to work better
• My relationships with my friends and family have improved
(amend remove or add any other health improvements you have since taking T3).
I have demonstrated that I have a clinical need for T3 that was not met by T4 monotherapy. My health will deteriorate if I do not take T3.
Banning liothyronine is irrational
I have attached the documents detailed above to show that they accept that there is a cohort of patients who do not thrive on thyroxine alone. All of them allow for an exception where the clinical need is clear.
In summary;
• The BTA is a group of expert Endocrinologists who recognise the need for some patients to take liothyronine in their Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee 2015. I attach a copy with relevant passages highlighted on pages 6 and 10 .
• PrescQipp is a group of pharmacists tasked with reducing the cost of medicines to the NHS who have also recommended that some patients will need liothyronine in their Bulletin 121. I attach a copy with relevant passages highlighted on pages 1 and 4.
• The BTA became aware that their guidance was used to promote a ban on liothyronine and issued direct guidance asserting that some patients clinically need liothyronine I attach a copy with relevant passages highlighted on pages 1 and 2.
• Finally, NHS England recommends that CCGs must make provisions for the prescription of liothyronine. I attach a copy with the relevant passages highlighted on page 8, 19 and 20.
The documents clearly show that despite a drive to reduce the numbers of prescriptions of liothyronine, some patients will still have a need for it to be prescribed to them. To completely ban liothyronine is clearly irrational in the face of those recognised exceptions in the guidance and recommendations above and particularly when a blanket ban is contrary to the advice from NHS England.
Blanket bans are unlawful
Clinical Commissioning Groups have a legal duty to have regard to the NHS Constitution. The 2019 Handbook to the NHS Constitution says:
If a CCG, a local authority or NHS England has decided that a treatment will not normally be funded, it needs to be able to consider whether to fund that treatment for an individual patient on an exceptional basis…In addition, decisions by the courts have made it clear that, although an NHS commissioner …can have a policy not to fund a particular treatment (unless recommended in a NICE technology appraisal recommendation or highly specialised technology recommendation), it cannot have a blanket policy; i.e. it must consider exceptional individual cases where funding should be provided.
By instituting a blanket ban and not considering exceptional individual cases, (insert your CCG here) has not had regard to the NHS Constitution and would have realised that a blanket ban is unlawful.
The courts are clear that blanket ban of drugs are unlawful. The courts have said that even if a drug is to be restricted on the NHS provisions must be made for clinical exceptions.
The cases stated are:
• R (Elizabeth Rose) v Thanet Clinical Commissioning Group (2014). CCGs should not deviate from guidance just because they don’t like it.
• Regina v Secretary of State for Health ex parte Pfizer: 51 BLMR 189 1999 Guidance should not take the place of a doctor’s (and now patients following Montgomery v Lanarkshire Health Board 2015 and Consent: doctors and patients making decisions together) judgement
• R v Cambridge Health Authority, ex p B [1995] 2 All ER 129, [1995] 1 WLR 898 Authorities must take ALL factors into account when limiting access to treatment. The decision should not be "so absurd or outrageous in their defiance of logic or morality that no reasonable person addressing the question would have come to the same conclusion".
• R. v North West Lancashire Health Authority, ex parte A, D and G [1999] All E.R. (D) 911 Authorities must not establish a blanket ban and must take into account patients individual circumstances
• R v Swindon NHS Primary Care Trust, Secretary of State for Health, ex parte Rogers [2006] EWCA. Civ 392 The concept of exceptionality cannot be too narrow to the extent that no case would be exceptional.
• R. v Barking & Dagenham NHS PCT, ex parte Otley [2007] EWHC 1927 and R. v West Sussex Primary Care Trust, ex parte Ross [2008] EWHC B15, Health Authorities must include divergent expert opinions when considering scientific evidence
• R. v Salford Primary Care Trust, ex parte Murphy [2008] EWHC 1908, Authorities must evaluate exceptionality holistically
Conclusion
I have demonstrated that I have a clinical need for liothyronine, that banning liothyronine is contrary to guidance and recommendations and that a blanket ban is unlawful. I respectfully request that you restart/initiate my treatment. I am afraid to say that if you do not, I will have no alternative but to make a formal complaint regarding your decision.
Yours faithfully
(Sign here)
(Type your name here)
Holy moses, holyshedballs! Thank you so much. I can certainly adapt this to my situation, and the legal case references are invaluable. I had already found some of the links to the statements, but I kept losing them..This is a brilliant.
You've had some sound advice. One other thing you need to point out is that if your CCG are set on this course, they should not reduce your T3 all at once, it will have to be tapered, or you will become very unwell simply from the sharp (and cruel) reduction. Good luck
Thank you Rapunzel. Yes, the CCG's website says something like Drs should work with patients to gradually increase T4 whilst reducing T3. Completely ignoring the fact that if we were well on T4 we would not be on T3 and Armour in the first place. I have just had a scanned unreadable letter from the dr, but he seems to be saying that they are only following instructions from CCG and endocrinologists. I had brought up the various guidelines or instructions he/surgery had ignored, and forwarded the experiment showing that low T3 causes heart failure in rats.
I just can't thank everyone enough for all the advice and information. Initially I was shocked at the cruelty and contempt for my health. Then I felt furious, then yesterday I felt very depressed. Today, I'm strong again, with help from you all.
The fact is that a higher number of members on this forum know much more than GPs and even some Endocrinologists.
I have personal evidence of this by first being undiagnosed by the professionals and followed a suggestion by a first aider to get my thyroid hormones checked. If you want, you can click on my name which will take you to my page about the struggle to be diagnosed.
I'm glad to say that I've been well for sometime but at times if our thyroid hormone replacements has had some change within it which can then affect our bodies negatively. We then have to try an alternative by another pharma company.
annca1 please also join us on ITT Improve Thyroid Treatment, on Facebook at the moment. We have various templates that may help you.
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