Thyroid UK
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so furious i got this email today from my local CCG after writing about no t3,and then here is my answer!!!!!

Dear Mrs *******

Thank you for your emails dated 3 February 2018 and 9 February 2018 regarding the withdrawal of your prescriptions. Firstly, I am sorry to learn of your experience and for the distress this has caused you. I asked my colleagues in the Medicine Management team to look into your further concerns in relation to your medication and I am sorry to inform you that their view remains the same as detailed in my previous correspondence with you on this matter. Both Armour Thyroid and Liothyronine are lacking in clinical evidence. Therefore, GPs can make a decision not to prescribe these in such circumstances and the CCG will support this decision. It may be that your Endocrinologist, will agree to prescribe these medicines for you if they think that this is the best option for you and are comfortable in doing so. At this stage, as within my last letter to you dated 29 June 2017, the CCG has answered all your issues on this matter and you do have the option to contact the Ombudsman on their helpline on 0345 015 4033 or you can complete their online form at ombudsman.org.uk/make-acomp... Yours sincerely Tricia D’Orsi Chief Nurse

NOW MY REPLY TO THEM..

Thankyou so much for your reply.

I am not shooting the messenger here MRS *****

However i have never seen such utter rubbish and such a poor excuse to justify the withdrawal of specific thyroid hormones. I would like to tell the medical team who i presume are fit and healthy and have no need for thyroid meds in order to function that they are completely closed off and in denial.

I would like to educate these people- SOME people have faulty genes, some people have methylation probs andfor what ever reason are unable to convert levothyroxine ( THE INACTIVE hormone into Liothyronine T3 which is the ACTIVE THYROID HORMONE--with in their body- this conversion takes

place in the body but we are NOT clones. Those who can’t convert t4 into t3 HAVE TO HAVE IT IN TABLET FORM. We who need it , take it to function. Without this i DO NOT FUNCTION and can have

heart attacks and strokes. The reason it has been withdrawn is because one time it cost NHS £5 a pot now the greed of pharmeceuitcal charge £236 a pot!

This is the reason why it is withdrawn after all this time so to justify that they say it has no medical evidence what utter rubbish and how disgraceful. Armour was used before synethetic and on thyroid charity forums the proof of well being is there. Now we are doomed to a slow death! I will however leave a note on my WILL for the reason of death.

Thankyou indeed

Mrs ********

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Well done Pettals. Don't forget to state that NDT has had a proven record since 1892 up to the present day because you know many are sourcing their own and before NDT people died of myxedma comas and there were no blood tests then. NDT is still in use today and just because of rumours it, too, was withdrawn from the NHS. Enclose this too:

thyroidscience.com/Criticis...

The following is between me and you and members on the forum:

Does Big Pharma have 'friends' within the Endocrinology.

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i already sent it shaws and i also foned the governemnt ombudsman- the number above is fo r you guys to also ring- it willreallyhelp if everyone rings-- he was martin and he was great, i said i cant follow the slightest instructions as he was telling me step by step to fill in online complaint, i groaned at the login so he said he would post me aform of complaint, i said we are not clones and this utter rubbish of telling us that there is no evidence when we have all been taking it for years is disgraceful i said we are just left without vitalmeds and they are underminingus by fobbingus off when the true excuse is greed of concordia.

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i have written to MHRA now. they are considering my email?

has lyn mynot got any update on this t3 fiasco?

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you can email Dionne Fulchert at tukadmin@thyroiduk.org and enquire. She is an Assistant in the office.

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Haha love the ending of you last reply!! ;-)..

However this is not a laughing matter and its absolutely disgraceful that they have actually withdrawn medication that was actually making u well! How can that even be right, its inhumane i find it ridiculous..

And yes it is to do with the cost as this problem was not an issue before when it was cheap for the nhs to buy, its wrong that a persons health is put on the line due to money its a disgrace to humanity...

I currently dont take T3 as i was somewhat ok for 8 years on levo alone, thinking back through the years i have always been slim and physically fit, but im wondering if my mental state of mind has suffered on levo alone, as my memory is shocking im only 33 and over the last year my since my levels have messed up with a high ft4 and high tsh and low to mid ft3 i have had herrendous mental side effects suffererjng with depression and anxiety and constantly spaced out foggy head..

I think over time my body is just not converting enough anymore and i need a little bit of t3...

Though i wont know if ill get it until i see yet another endo.. if not im going to self medicate, as its mental torture at the minute im living in hell!!

Hope u can keep fighting to get it reinstated i really do...

If not are u abke to afford to self medicate? X

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Our brains and heart need the most T3. T4 is supposed to convert to it but I don't think many of us do sufficiently. Research has shown quite a number of times that a combo of T4/T3 suits many more than T4 alone.

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I reckon we're just pawns in a stalemate between the pharmaceuticals and the NHS. The pharmaceuticals put the price up, so the NHS are calling their bluff by stopping buying any. If no one buys it, the pharmaceuticals won't be making any money from it anymore, and the hope is the price will come down again. In the meantime they have to make excuses as to why it's stopped, and "money" is not a good enough reason.

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i hope it sits on concordias shelves and draws a dustcloud and they go bust

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Well done. Wonder what the CCG response to that will be!

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i expect they wil ignore it fruit! God help them if they get thyroid probs

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Last time I was prescribed T3 (approx Oct last year...) the meds I received were Thybon Henning from Germany. This was on the NHS, probably from the same hospital you go to as we live in the same place!! I know exactly how much they cost because I bought them direct myself from Germany when I had a private prescription in Sept last year, they're more like £40 a pot so the endo clinics don't even have cost as an excuse now! Maybe they just want to kill us off?!

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i wouldnt mind your endo actually brighter but i go to kent

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Hey bluepettals

Can you post synopsis of your 1st letter to ccg requesting t3, if you don't mind please.

I'm in the process of getting my GP to reinstate t3 and if this fails I'll need to hit cig with the complaint.

Thanks

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there are two of my moan offs here to the CCG. not the GP

this one was last week.

Dear sir madam,

Iam using this for the ongoing fight we thyroid people have.

This is an old email about the refusal of NDT, however that is not the issue here,---

i now have more questions, I was taking 75 levo and 20mcg of liothyronine. Levo does NOT work on its own for me, ,which is the sole reason i was prescribed NDT containing ALL 4 natural thyroid hormones.

So now that the t3 liothyronine has also been withdrawn , what am i to do?

i shall get worse than i am already, i have lost my hair, i am tired, poor sleep, dry skin, puffy eyes, i have no energy, i am not functioning well at any level and feel unwell, my endo said he can’t prescribe t3 now due to the withdrawal, but does and will let me have NDT, regarding the t3 withdrawal--

i have a letter from my MP saying that T3 is still available on prescription for a patient at the endo’s discretion. T3 is necessary for those sufferers who are unable to convert the INACTIVE t4 levo within their body into the ACTIVE t3 hormone, this is the sole reason people are given it.

some people are ok on levo some are not. As Concordia have now been found provisionally to have abused their position to overcharge the NHS for t3, i hope they end up in bigtrouble, itis pure greed. I am waiting to here from CMA whathappens next.

Itis a question of a persons well being to the best they can be functioning. BUT, There are cheaper versions of t3, Aventi Sofani.

As long as i have a written prescription for 25 mcg, the chemist can source it, and the health board has to agree it.

Can you please respond. I have no medication right now which is really not politically correct.

Yours..

Mrs ***********

THIS ONE MUST HAVE BEEN LAST YEAR-SEE THEY HAVE NOTHING TO SAY BUT I AM LIKE A DOG WITH A BONE! and i have got more!!! emails not bones!

Dear Lin Teasdale,

please note i am not complaining as in the sense of the word , i was informed that my request goes

under ‘complaints’- please find also this letter from the chair of thyroid patients advocacy charity to

DOH . below. here i had a letter given byshiela turnerbefore she got ill to JEREMY 'SHUNT'

TO ccg...

My endo has requested i have NDT due to my ongoing endocrine symptoms an d much hairloss which levo thyroxine is known to aggravate DHT in hair follicles, some people can’t convert t4 into t3, a lot of people do not do well on straightforward t4. NDT has to be much cheaper , and that old chestnut about NDT not stable, i am afraid with hashimotos that is not stable anyway regardless of a set amount of synthetic, and NDT was used well before synthetic, NDT suits me, and i am doing better on NDT than chemical T4. Re hair, i can send you this info if you wish also. Thankyou very much Mrs Teasdale.

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Always about the 💰 fat cats at the top of the NHS trust get the cream 🤔

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Pettals,

Is your endo NHS or private?

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nhs clutter

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Pettals,

Armour is not licensed for UK use so your GP can't be forced to prescribe it but Liothyronine is so that can still be prescribed.

You could write to your GP (cc your MP) and tell your GP that the CCG does not have the authority to tell GPs what not to prescribe and you believe your GP is in breach of GMS contract by withdrawing treatment you have been told by a NHS endocrinologist that you need. Say you have been well on Liothyronine and wish to continue taking it. Attach the BTA guidance for patients and GPs.

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

CCGs are expected to do impact consultations with the public and stakeholders before implementing change. Failure to do so leaves them open to legal challenge so check whether your CCG did an impact consultation before advising your GP to withdraw T3.

mills-reeve.com/files/Publi...

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oh wow clutter i am overwhelmed heck where do i start?

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Pettals,

Read the links. They're not very long except the last one.

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clutter i did have aletter from my mp the day say ing that endos can still prescribe, it arrived after i saw my endo and endo said that he couldnt prescribe it anymore- i have sent him the mps letter, it will be a while becaus e his secretary has her hours cut to 3 days a a week and he works at4 different hospitals,what a shambles..

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Pettals,

Didn't your GP give you the repeat prescriptions for T3?

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yes clutter, as the hospital had requested it, i receieved a letter from surgery saying no more t3 and referreding me to a local endo- i said i already have an endo elsewhere-- but not shouting too loud after blowingmy top to my endo- and ccg AND the governemnt ombudsman

hence the above reply- i foned my chemist tonight and asked if the doctor had with drawn levo as well as t3,he said it is still here avaialble so i have ordered it- i shall grab it wed or thurs at least it is another month worth..

i wonder if surgery has wrong info or if the prescription clerk has sent out standard letters without the facts or not trealised i have endo but even endo said he cant give it- no one knows what the other is doing

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Pettals,

So endo is saying he can't give you T3 if your GP withdraws your prescription? It usually works that endo prescribes the first month via the hospital pharmacy and then notifies the GP practice to issue repeat prescriptions.

It's your GP who is responsible for you receiving the treatment you need so tell him/her you will report him/her to the GMC for breaching the GMS contract by withdrawing treatment a NHS consultant has told you you need.

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well this is what dont getclutter- it was from a hospital in about 2006 /8 i cant remeber now, from the first endo who gave it then he left so ichanged hopsitals and it has just carried on-- i am wondering if my endo actuallyknows i had it before but he said he couldnt give t3- i have though, bombarded him with info,poor man is overworked at 4 hospitals- he is trying to sort itout by discussingwith managment. someone has their wires crossed

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Pettals,

I think he may be saying that he can't prescribe it to you if your GP withdraws it.

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yes maybebut he surely has more say than gp as itwasnt gp who prescribed it to begin with it was an endo

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i fell asleep at 7pm and wa ssoknackered i crawled into bed at 9pm and have so much on my mind with family issues and sorting out sisters Will, i am upagain onehour later

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i went to the chemist today and he gave me levo and said sorry no t3, he said no new people can have it- i said i had it for years,so i wentnext door to doctor and asked for practice manager who was busy, the prescription lady said to me i am so sorry for you i understand the frustration but the gps have beentold that they cant give it now as it is a ' clinical

responsilibity that they cant have,-- its a diagnostic thing'--- i said LOOK-- it is NOT a diagnostic thing that is rubbish- i will tell you WHY they cant prescribe it and that is because of the greed of concordia!--

i do wish these CCG people would NOT insult our intelligence by fobbingus off with ''it is a diagnostic thing and gps cant take responsilibity-- i said

the CCG told me that there is 'no clinicncal eveidence it does any good'

what rubbish when we have been taking it for years, i did add that my rage wasnt directed to wards her or gp as they have been commisoned to folow the rules!-- it ha s to be supplied by endo at hospitals, God help thise new comers to t3 its bad enough fighting when we are previous t3 poeple.

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Pettals,

It's not good enough. You have been taking T3 for years and can't suddenly switch to an alternative that presumably was already proven to not work for you else why would you ever have been prescribed T3?

Your GP should continue your T3 prescription until you have seen an endo who can confirm to your GP whether or not you need it and if not, how your T4 dose should be adjusted.

Please re-read the information I posted above about the BTA and GMS contract and tell your GP you will be making a complaint to the GMC.

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