I've been referred by my GP to a Endo outside of my area (Birmingham) who may prescribe T3, but I won't be able to get it because I live in Telford and Wrekin. Take a look;
Commissioning Policy
Prescribing of liothyronine (tri-iodothyronine) in combination with levothyroxine and/or Armour® thyroid for the treatment of hypothyroidism.
Policy decision
Telford and Wrekin Clinical Commissioning Group (CCG) has reviewed the evidence for clinical and cost-effectiveness of liothyronine in combination with levothyroxine and/or Armour® thyroid. It considers the funding of treatment to be a LOW PRIORITY for patients with hypothyroidism.
Treatment with with liothyronine and/or Armour® thyroid will not normally be funded
Rationale for the decision
The replacement therapy of choice for hypothyroidism is levothyroxine (T4). Levothyroxine is given once a day and is converted to triiodothyronine in peripheral tissues, providing stable and physiological quantities. Liothyronine (T3) has a much shorter half-life (1 day vs. 6 days) and steady state levels cannot be maintained with once daily dosing1 . Before the 1970s, synthetic combinations of levothyroxine and liothyronine or desiccated animal thyroid containing varying amounts of thyroid hormones were used, but these have now been replaced with the use of levothyroxine monotherapy1 .
Armour® Thyroid tablets are made from desiccated porcine thyroid glands. The amount of hormone in the thyroid gland varies from animal to animal but Armour® Thyroid contains standard amounts of levothyroxine and liothyronine according to United States Pharmacopoeia (USP) standards and specifications. Armour® Thyroid is licensed in the US; there is no licensed product available in the UK although it can be ordered via importing companies1.
A combination of levothyroxine and liothyronine, in both non- and physiological proportions, has not consistently been shown to be more beneficial than levothyroxine alone with respect to cognitive function, social functioning and wellbeing. The variation in hormonal content and large amounts of liothyronine may lead to increased serum concentrations of T3 and subsequent thyrotoxic symptoms, such as palpitations and tremor1.
Whilst it is possible that some patients might benefit from the use of combination treatment or Armour® Thyroid, the parameters identifying such a patient group have yet to be clearly identified. Furthermore the majority of the trials used non-physiological ratios of levothyroxine to liothyronine, which can lead to over-replacement and skew results1.
There is insufficient clinical evidence of effectiveness and cost effectiveness to support the use of these treatments. Therefore NHS Telford & Wrekin does not routinely support the prescribing of liothyronine and/or Armour® Thyroid for hypothyroidism.
Version 1
Date approved: September 2013
Review: September 2016 or earlier in light of significant new evidence or guidance from NICE
1 What is the rationale for using a combination of levothyroxine and liothyronine (such as Armour® Thyroid) to treat hypothyroidism. UK Medicines Information service November 2011
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I am hoping someone from admin or at Thyroid UK will come up with an online petition. I am sure it would show the strength of feeling about this decision. How many are there of us on HU?
Hi Vickiti. Are you on T3? I'm not sure how we can fight it. I think if you want T3 a consultant/GP has to ask for funding now and see if the CCG agree. I was told it's only given in exceptional circumstances. I'm calling the CCG tomorrow. You could call them too. I can PM the details if you like.
I am sorting my own meds currently as my GP would not listen. He doesn't yet know, but will be informed at next appointment.
I have emailed Kate Ballinger the manager of Healthwatch Telford & Wrekin (and a friend and ex colleague of mine) asking her how we go about fighting this. However, I am betting I get told there is little we can do.
I also happen to know a Clinical Commissioner - but sadly not this area, so shall also ask his advice.
So everything else about trials, physiological vs. non-physiological, variable content (having earlier said it is standardised), skewed results, etc. is padding. Something to wrap around "we won't fund it".
I'd have a bit more respect for their view if they had said clearly and unequivocally that it is money. And a bit more if they had done something to question the outrageous costs of both desiccated and liothyronine. As it is, I'd probably have more respect for splats in a cow field.
Note: Cost effectiveness is, of course, severely skewed by the grossly inflated cost of liothyronine and Armour (or other dessicated thyroid products) when supplied by the NHS.
I really do not see how a document like that posted can be allowed to fail to address this issue. Would their conclusion be the same if liothyronine were something like the same cost as levothyroxine? (With due allowance made for differing doses, etc.)
I am on T3 only and now very nervous that the same will happen in my area. I feel so angry at the tone of their statement. I frankly hope that whoever made the final decision quickly succumbs to a particularly virulent form of Grave's disease like mine and has to have TT. Did I really write that? Ah well. Justice one day maybe.
Hennerton, you can look at the CCG website to check what's happening in your area.
The lady I just spoke to from the MMT said 'they were giving people who had chronic fatigue syndrome thyroxine when there's no clinical evidence to do that'. I told her that CFS can be undiagnosed hypothyroidism, because of the overreliance on TSH blood tests.
She told me that the CCG are human and when you apply for funding they will accept you need T3/Armour if there's a good reason. I hope so.
.....if its a matter of cost then you may like to enquire why we can buy T3 over the counter in Greece for under two euro - 30 tabs of 25mcg. Someone - somewhere - is being ripped off. Surely not the NHS ? There are loads of houses for sale here in Crete - and the rents are low - come on over and enjoy the sun and cheap T3 !!
I just had a 40 minute conversation with the Medicines Management Team. Yes, it's cost. A GP/Consultant can apply for funding from the CCG. You can get a copy of this letter and also add a letter from yourself.
I have been refused treatment by my GP so far, hence the referral. I asked her how a person is diagnosed with hypothyroidism and she referred me to this;
These are the people responsible for ruining your health - they all sit on the CCG - why not write directly to them and tell them what you think.
Dr Michael Innes, Chair
Dr Innes has been a partner at Stirchley Medical Practice in
David Evans, Chief Officer
Dr Martin Allen, Secondary Care Clinician CCG Board/Consultant Physician at University Hospital of North Staffordshire
Geoff Braden, CCG Board Lay Member - Governance
Geoff is a manager for Royal Mail and is responsible for the collection and sorting of all mail across the West Midlands and North West of England.
Julie Ellis, Practice Manager Representative, CCG Board
Julie has been Practice Manager and Nurse Partner at Church Close Surgery for 12 years.
Dylan Harrison, CCG Board Lay Member
Dylan qualified as a Social Worker in Oxford in 1995, and has since worked with a variety of vulnerable groups including adults with mental health problems, homeless people and families with young children.
Dr James Hudson, CCG Board GP Member
He became a GP in 2006, becoming a partner at Donnington Medical Practice, where he has worked since.
Dr Andy Inglis, CCG Board GP Member
Dr Inglis studied medicine after previously working in the oil industry.
Dr Jo Leahy, CCG Board GP Member
Dr Leahy has been a GP in Telford for the last 15 years, currently working as a regular locum in a Telford practice.
Christine Morris, Executive Nurse, Lead for Quality and Safety
Christine has worked as Matron, Clinical Site Manager and has had General Manager roles
Andrew Nash, Chief Finance Officer
Andrew has held a number of senior finance roles within the NHS. His most recent role was that of PBC Programme Director at NHS Herefordshire.
Dr Louise Warburton, CCG Board GP Member
Louise has lived in Shropshire for twenty one years and worked in a number of GP practices; she currently works at Malling Health Wrekin and also works in the Musculoskeletal APCS at Euston House.
Hi This is dreadful. I have never been able to get my armour, I use a private script, but T3 even though my GP a real Scrooge, I get.,
A private script for T3 is much more expensive than armour etc. The only thing I can suggest, is ask the consultant to try you on armour with a private script. You can do some repeats by e mail. Or have a private script for it and buy it cheaply in Belgium, See yesterdays post.
The people who answer ordinary calls definitely give that impression. But maybe, if you are lucky, you can somehow get onto someone in the UK who understands PR and customer relations.
Telford & Wrekin people - The local Healthwatch is asking how we feel about Blood testing locally - I have sent them a detailed response telling exactly how hard it is to get the tests we need and mentioning the over-reliance on TSH test.
If anyone else would like to add their experiences here is the link:
What are your experiences with blood tests like in the Telford and Wrekin area? Let us know - t.co/RSwgr27mdK #HealthwatchTW
Just a patient! - I'M NOT MEDICALLY QUALIFIEDI've just seen this post this morning - it's 2 yrs old, the year I had my spontaneous aneurysm,,that formed somewhere in my body and travelled up to my brain. both discussion and my aneurysm are 2+ yrs old.
1. Is there any advance in terms of funding of funding drugs costs.
2. WHY is the medical profession still adamant that TSH testing & Levethyroxine are the most reliant, ways of treating the Thyroid problems, that are not connected with cancer?
I always have so many questions I would like to ask when I read so many of the replies. it's the why and where fores, the causes of Hypothyroidism, that occupy my mind! I've only ever tKen Levo, just had a thyroid scan early August this year, yes it's kaput - don't know whether partially or totally. I didn't get my symptoms 2000,
3. Why would it have been my last comment about heartburn that got my doctors eyes lighting up, when some other symptoms didn't - hair loss/thinning - dry skin and weight gain being the only ones I could relate to when looking the condition up to find out more about it at the time.
I've been on lots of healthy eating plans before and after Hypo diagnoses. WW, The red/green one, a famous Dr somebody who advocated the low carb diet. They all worked for a short time, losing just 5-6 lbs, for a few weeks only. Despite sticking to them for months, the weight still slowly went on. All my life I never had a big appetite, it's non existent now! Never over the years have I felt 'ill' except once, from a chest infection. Yes I've had infections, the childhood illnesses,, whooping cough, chickenpox, cystitis, bad colds, my 1st pregnancy was terrible, I was sick the whole way through to 8 months. 2nd one was great, I was blooming! I came out in a German measles rash the weekend I got pregnant 1st time, 4 yrs after my periods started at 15. I developed vitiligo and had an ear infection last year, as well as another chest infection. This year blood test says I have or am Hypothyroid Autoimmune. Hashi's.
3. Do others with autoimmunity have a list of other health issues over the years that have remained unconnected over the years in their minds! Some on the posts sYs they are better on a combinatin treatment for their thyroid
What is 'better'? their thyroid condition only? i.e. the amount of thyroxine the body absorbs, or other symptoms that can be attributed to other conditions as well? A whole life health pattern? The "flares" people speak of, often seem to be down to changes in levels of medication before or after the body adjusts to new levels? I can often go one day to another feeling 'different' - feeling 'not me' thinking differently, unable to focus, concentrate or remember things!
Remember the phrase ' I don't feel quite myself today' ? I'm pleased to say today is not one of those for me, but often do have days like that within an hour of getting up in morning! Now I'm down to self-Imposed 50mcg a day for last 3 weeks or so, have been more stable mentally - physically nothing changes, other organs continue doing what they do.
There are too many questions and not enough answers!
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NICE Guidance on Thyroid Disease - Final Guidance
