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Straight from the Horses Mouth! (UD)

Doctors CAN use thyroid hormones apart from L-T4-only; they can also prescribe unlicensed drugs.

Published on 15th November 2013 00:27 Updated 1st May 2014 Number of Views: 956

Because I could not find the definitive source within the Department of Health for the statements below on the 2 February 2013 I wrote direct to The Rt. Hon Sir Jeremy Hunt MP (Secretary of State for Health in the UK)

Please keep the DoH response safe.

Show it to your GP/Endocrinologist if they insist they cannot prescribe anything other than levothyroxine-only and/or cannot prescribe unlicenced drugs.

Show it to those doctors who state they are not allowed to follow other thyroid guidelines other than the RCP’s policy statement.

Show it to those doctors who claim they are not allowed to diagnose if blood results are within the reference range – and help further their education.

________________________

Dear Jeremy Hunt

I am founder/Chair of Thyroid Patient Advocacy (TPA) www.tpauk.com.

There are no official guidelines for the diagnosis and treatment of hypothyroidism or guidelines for those suffering from peripheral thyroid hormone deficiency and I wondered what the situation is for medical practitioners when all they have as guidance is a policy statement issued by the Royal College of Physicians.

Are doctors allowed to follow guidance/guidelines of their choice whoever has written them and choose guidelines even if they are from a different country? TPA has thousands of members of their Online Thyroid Support Forum many saying their doctor has told them that they are not allowed to diagnose or treat outside of the RCP policy statement. I would be grateful for a definitive answer to this question please.

Kind regards

Sheila Turner (Chair)
_______________________

DEPARTMENT OF HEALTH RESPONSE:
Our ref: DE00000756922

http://tpauk.com/images/bank/jeremy-hunt-2.jpg

Dear Mrs Turner

Thank you for your email of 4 February to Jeremy Hunt about hypothyroidism treatment. I have been asked to reply.

I should explain that the Royal College of Physicians (RCP) and the British Thyroid Association (BTA) are independent of the Government. The Department of Health has no plans to ask the RCP to withdraw its clinical guidelines for the treatment of this medical condition. Nor does the Department have any plans to produce guidance on the diagnosis or treatment of hypothyroidism. UK Guidelines for the use of Thyroid Function Tests are published jointly by the Association for Clinical Biochemistry and the BTA.

Doctors are encouraged not to rely too heavily on the results of blood tests but to use their clinical knowledge and an assessment of the symptoms experienced by individual patients in making a diagnosis for thyroid treatment. Doctors are free to use whatever guidance they feel is appropriate when making a diagnosis. This includes guidance published in other countries.

I should add that under their terms of service GPs are allowed to prescribe any product including any unlicensed product or product not licensed for a particular indication that they consider to be a medicine necessary for the treatment of their patients under the NHS. This is subject to two provisos which are:

– the product is not included in Schedules 1 or 2 of the NHS General Medical Services Contracts (Prescription of Drugs etc) Regulations 2004 otherwise known as the Selected List Scheme; and

– GPs are prepared to justify any challenges to their prescribing by their primary care trust.

It is the responsibility of health professionals to decide on the most appropriate treatment for their patients. If a person has any concerns over their treatment or the drugs they are prescribed they should raise these concerns with their GP or consultant.

I hope this reply is helpful in clarifying the Departments position.

Yours sincerely

Peter Wozniak

Ministerial Correspondence and Public Enquiries

Department of Health

The Secretary of State for Health states doctors can use other thyroid hormones other than levothyroxine-only; they can prescribe unlicensed drugs; they can follow whatever guidelines they wish even if they are from another country.

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Previous comments

Amen!

Charlie Farley,

Well that sounds good.
I will copy it and take it with me when I see Dr Nikookam at King George’s next month.
Although I think my mood has improved thanks to the vitamin Vitamin D and B12 sprays I’ve been taking, my joints are still very painful.
Plus I get quite tired etc, etc.
His registrar previously said I shouldn’t be prescribed it because it was too difficult to work out a safe dose!?
We’ll see. I think the’re just loathe to give it to me and keep saying I’m euthyroid. But surely if I’m euthyroid, I shouldn’t have all these symptoms?

LiliBili,

I don’t get why some lines are highlighted in red. If the DoH was trying to make a point, I missed it

Teabag,

Manchester Royal Infirmary have stopped my Liothyronine as they say my GP should be prescribing this medication.But my GP refuses to do so
as he says the Medical Management Team won’t allow him to to prescribe this drug.I am now under medicated and don’t know what to do about
it. I would like to find a doctor in Manchester who would give me a prescription for Armour Thyroid.Can anybody help.

June Neilson,

ALL of the Clinical Commissioning Groups in Merseyside have adopted the policy of blacklisting NDT such that no doctor in the area is allowed to prescribe it.
Reasons given include the fact that levo is cheaper than NDT, and so it is. BUT it does not get me well. It is allowable for me to be prescribed T3/T4, but the reported cost of T3 is far, far greater than NDT and also is unlikely to give me good health.
Another reason given is that there is overwhelming evidence that levo only should be prescribed, but they seem very unwilling to give me details of it. Hardly surprising as there is no evidence!

John99,

What doctors seem to be missing is that under treating patients will inevitably make them suffer other conditions thus eventually costing the nhs more than if they had been prescribed the right treatment in the first place

PILCHY62,

This does not make sense – I have been on T3 only and NDT, I have just moved back here from overseas . My doctor said he would fill in a funding application for T3. He did this and got a letter a week later saying that I couldn’t have it – based on what I don’t know as no one took a full history or actually examined me. Cytomel is available at a cost of 3.50 Euros in France for a box of 30 25mcg tablets. Why is it £265 here for the same packet?

JM001,

I was given T3 by a.n Endo I was seeing for 7yes. He left and half my t3 was taken off me by an Endo who never saw me. He sat in the next room and made the decision to bring my T3 down from 60 mcg per day to 30 mcg which I Had increased very slowly over a few years. I was forced, like so others to buy T3 online to continue raising to get well. I was living half a life and the hospital refused to try NDT as made in the USA. People who use it there say it works better than any man made horomes as has natural t1, t2, T3, t4 and calcitonin for the bones. I have osteoporosis so NDT would be the best treatment for me but no GP or other Endos will try it and many now won’t try T3 either

Sylviana,

Does any member have experience of ARMOUR THYROID. I would like to hear anyone’s experience. It is routinely prescribed in USA, but I am buying it on the internet. Would like information. My GP is just not interested.

ISOBEL BARKER

ISOBEL BARKER,

I was lucky enough to have NDT (Erfa Thyroid) prescribed for me by an NHS Endo. I took it happily for a year, but last month, upon requesting my next prescription from my local Hospital, I was told they had run out of supplies. They did not know when more would be available. Week after week I have phoned the Hospital Pharmacy, to see if more supplies have been delivered, to no avail. They are now saying I should refer back to the Endo’s department. The Endo’s Secretary say I need to contact my GP’s Surgery. When I did so, I asked if the GP would prescribe it on a “named patient” basis, and was told they would get back to me. I am still waiting for a call back 3 weeks later – I’ll take that as a “no” then! Not one person has even bothered to ask if I have an alternative (Levo). I have a suspicion this is the NHS’s way of getting me back on to Levo. If that is the case, why can’t they just be honest about it, instead of leaving me “high and dry”?

Jannie,

So far I am still being prescribed Armour thyroid although our health board has banned GP’s from prescribing T3 so I am thinking that NDT could be next.

T3rcam,

This response was received 6 years ago, is this still valid?

Susan Batho,

when my GP fianally relented and offered me a trial of low dose T4 I was ecstatic after suffering from low tems(34.8) post nasal drip,low mood etc etc.
the same evening I experienced terrible pain on one side of my neck, after research,i discovered I was having trouble converting to T3 due to excessive cortisol.
I returned to my GP who asked me why I didn’t want it to work!!! that’s all I wanted of course! I suggested it could be insufficient conversion to T3…. she told me t3 was the storage hormone and t4 the active one!!!! good luck to me then……I purchased THIROYD from Thailand with no problem,for 8 years,until now.
Greater Pharma have ceased production due to increase cost of raw materials. This leaves me in dire straights. I would not be able to afford the high cost of private fees and prescriptions,and have liitle to no hope of finding an NHS doctor with an open mind!
Any help would be extremely gratefully received!

Bethan,

Hello, I am one of the lucky ones as my GP has let me have a prescription for Armour then Erfa for 18 years. (I had a subtotal thyroidectomy for Graves Disease in 1998). However, my repeat prescription has been removed from the system and now I am being told I have to go to an Endo and for me to continue, they have to say I need it. Obviously there is more chance of Brexit being reversed than an Endo actually helping me. I am really worried now and wondered if anyone can advise. Is the best way forward to buy NDT online and is this possible? Are there any endocrinologists why may prescribe? And is it possible to get a private prescription? I have been quoted around £2000 per year for a private prescription, if I can obtain one. I am so scared for what the future holds. I was the life and soul before I had my thyroid removed in 1998, the Endo put me on a maintenance dose of 75mcgs of Levothyroxine (I was 28) and the next five years of my life were hell before I got on Armour. The endo totally ignored me and just said I was cured and that the average person on the street is tired. I can’t go back to that state I was in. Any advice anyone can give me would be really welcome.

FeeM,

Hello, everyone. It’s clear that we are being picked off, one by one, as our doctors tell us that Levothyroxine is the only medication we need.

I was fortunate in that when my GP sent me to an endocrinologist, to convince me to stop asking for Armour prescriptions, I took with me a list of science-backed arguments I thought relevant. The endocrinologist said I was probably right, but for him, the point was that I was stable on Armour & destabilising me would probably create more problems for the NHS to deal with, so he recommended I continue to take it.

That bought me 9 months of normal life. Now, the Clinical Commissioning Group has ordered even specialists to stop authorising Armour. The cost has soared, because whoever in the NHS responsible for negotiating the contracts has allowed that. Patients shouldn’t have to pay for the ineptitude of those people who are well paid for their negotiations skills, yet have let the NHS down so badly. We are not short of pigs in this country. We should be able to produce our own desiccated porcine gland tablets.

But in the meantime, patients need to act together, & make as loud a noise as possible. I shudder when I think what I was like before DTE – a puddle on the floor. I can’t go back to that. Can we perhaps organise a petition to the current Health Secretary ? Or chain ourselves to our local surgery doors, or outside the district CCG building, at a particular time, on a particular date?

Cedar,