Following the initial statement by the RCP, BTA et al, the RCP have been inundated with letters, evidence, rebuttals etc and have now decided to review the situation.

We have sent the following letter in response to this and now hope that all the evidence sent to them will result in a rethink of these guidelines and better treatment and diagnosis of hypothyroidism

Thyroid-Disease.Org.Uk38 Cardinal AvenueBeeston, LeedsWest YorkshireLS11 8HF0113 2776716 10/04/2009 

Professor Ian Gilmore, President - The Royal College of Physicians

11 St Andrews Place, Regent’s Park

London, NW1 4LE 

 Dear Professor Gilmore: 

I understand that following the many letters and information you have received, regarding the recent  press statements and ‘New Guidelines for the Diagnosis and Management of Primary Hypothyroidism’, the RCP is now going to review this in accordance with the concern and evidence sent to you by both patients, members of the medical profession and those of thyroid support groups.

We note that the original statement says that the guidelines are welcomed by patient groups but would like to reiterate the point that this is not so, and it seems the only patient group, besides your own Patient and Carers Network, consulted on this was the British Thyroid Foundation, which, as it is affiliated to the British Thyroid Association and continues to give its own interpretation on its website with regard to the safety of Armour and other natural desiccated  thyroid preparations, T3 etc, cannot be said to be an impartial patient group. Whilst we understand that it is not practical to consult every thyroid disease support group, we would have expected that at the very least the charity Thyroid UK would have been included in this initial consultation, and also perhaps ourselves, who are the largest web based, patient support organisation, fully constituted, in the UK with over 1500 members, and a worldwide readership of over 18,000 a month. We have been grant funded by a hospital trust and are recommended by NHS direct and NHS choices among others, and as members of National Voices and other umbrella health organisations we are regularly asked to voice our opinion on NHS procedure, green and white papers etc, were on the steering committee of the Information Accreditation Scheme and others so it seems surprising that we weren’t asked to partake in one concerning the health of our membership. As such if the occasion arises we would like to be involved in the forthcoming review process, as you clearly state you are committed to the involvement of patients with all aspects of your work.

We also note that the names of those concerned in putting this statement together have not been made public, unlike those of other statements put out by the RCP, including others that are thyroid related. We are therefore interested to learn the reasoning behind this as feel that for transparency this statement should be treated the same as others in this matter, we are also curious as to why no evidence has been made available to back up this statement when this is prevalent in others issued.

It is our understanding that the government and the NHS wish to reduce levels of cholesterol and the danger of heart disease and obesity in the UK. As high cholesterol levels leading to heart disease are symptoms of hypothyroidism we therefore find it alarming that given all the recent research that people with TSH levels of 3.5 and above are 50% more likely to have a heart attack than those with a level of 2.5, and why other countries are reducing their reference ranges in accordance with this, that the RCP supports the BTA’s suggestion to not treat until the TSH reaches 10, thus increasing the rate of treatable heart disease in the UK, and we would like an explanation for your support of this increase in the reference range, as it is at odds with current NHS thinking. 

Whilst we agree with the comment in the statement that there is no clinical evidence to suggest that armour is better than Thyroxine, we do feel it should be pointed out that this is because no comparative study has ever been done, and requests to both NICE and the BTA, by patient groups, that one should be funded as been met with a firm negative. As a result we feel that one should be carried out to settle this argument once and for all. We also feel that all research regarding the use of T3 be looked at, including those showing it is helpful in some cases, rather than those results being discarded as has happened previously. We would include in this those studies which show its effect on mental illness and dementia, as it is these symptoms my members show relief with when put on T3 therapy, whether on its own or in combination with Thyroxine.

Similarly the comment that there is no proof that saliva and urine tests are better than the blood test is correct, however once again that is because no studies to show the contrary have been finalised and the BTA have not funded one, it has been left to Thyroid UK and the fundraising efforts of thyroid patients to do this, and only when this study is complete can this comment be shown to be true or false. However as urine and saliva tests are now routinely done for other hormone based conditions, such as diabetes, prostate cancer, fertility etc, and are used effectively for diagnosis of thyroid disease in other countries, then I see no reason why they cannot be a useful addition to the testing regime.

We are also concerned that these guidelines do not include antibody testing as routine for hypothyroidism. As it is the most likely cause of this condition and high levels of antibodies can be present, even if the TSH level hasn’t reached the current top level of 5, let alone 10, then it seems highly dangerous to not test these and if found to be present then the patient treated if symptomatic. To refuse to do this, as is prevalent in the NHS currently, putting patients, on anti-depressants, blood pressure medication, statins, obesity tablets etc to treat their symptoms, rather than thyroid medication, and keeping them ill and unable to work  is surely against the principles of the RCP, and which this statement is designed to do. Many of our members even when diagnosed are unaware of the autoimmune nature of their illness and the risks that can bring 

I’m sure you are aware of Professor Weetman’s comments at a GMC hearing last year stating that to reduce the reference range would cost the NHS too much money, but surely this is false economy with the high costs of patients not working, so on benefits and not paying taxes, being given prescriptions for the symptoms rather than the cause, unnecessary hospital procedures, investigations etc amounting in many cases to upwards of £50,000 wasted by the NHS, and I would be grateful if the RCP’s position with regards to this comment could be made known, and if it agrees with it the reasons why. 

As part of our organisation we have a web forum, which is publicly visible, we would like to invite you to read, as part of your review, the posts by our members which show how they are currently treated by the NHS, the problems they experience and their poor quality of life, many are undiagnosed due to the current reference ranges, are extremely ill and have for the most part been written off. This is a situation which would not continue in countries such as the USA, Canada, Germany, Belgium and many others where the reference ranges have been reduced and so would have been treated and which we hope, given the body of evidence you are now in receipt of, will not continue in the UK, if you are to abide by your best practice for patients. 

We are aware that these new guidelines are in fact an enforcement of the outmoded 2006 guidelines issued by the BTA and ignored by some Drs who along with ourselves and other patient groups, questioned their validity as research such as T3 being beneficial to some patients and the safety and efficacy of armour was ignored . These Drs have now apparently been threatened with the expulsion if they continue to treat with these medications, despite their patients becoming well on them and unable to tolerate Thyroxine. Can you please tell us what measures will be taken if these patients now taken off their preferred medication because of these guidelines have a decline in health. I understand you have been sent a copy of Dr John Lowes rebuttal to these guidelines and hope that you take it into account during this review. We would welcome new guidelines for the diagnosis and treatment of hypothyroidism, but expect them to be updated to take into account new research since 2006 and in line with the practices in other countries which have reduced their reference ranges so that our members can become well.

In closing my members would ask that you consider, and answer the following questions -

Why when in all other conditions, it is accepted that no one medication suits all, and trials of others are considered until one is found to work, is it stated that only one medication is needed in the case of those with hypothyroidism, despite the fact that the condition causes many problems due to the imbalances of the hormone on all organs etc.

Why, when the AACE named it as the 3^rd most fatal illness in the western world in 2003, is it treated as an unimportant, lightweight condition and patients are treated as mad hypochondriacs with somatoform disorders if their symptoms linger on a low dose or incorrect medication, particularly with regard to the mental health symptoms, including depression and dementia.

Why do Drs only seem to want to bring the TSH level just back into the reference range, and then reduce the dosage of medication and dismiss any residual or worsening symptoms, when research clearly shows that suppression of the TSH level is need for optimum health?

Why are Drs told that because Armour is unlicensed they cannot prescribe it, when the reason for this is that it was considered safe enough to be grandfathered in when the BNF came to be so didn’t not need a license, whilst Thyroxine was also grandfathered in, but due to problems it was required to apply for one

Why, when it is largely an autoimmune disease, antibodies are not routinely tested and warnings of the potential problems of autoimmune disorders not discussed, which happens with other AI disorders

Why is there such a discrepancy around the country for the current TSH reference range with one lab having  an upper level of 6, such as occurs in Leeds, whilst the neighbouring PCT’s have an upper level of 4.5, meaning it is far harder to get diagnosed in one area than another

Thank you for taking the time to read this letter and consider our questions and we hope for an outcome favourable to our members

I have included below some references to concerns and research mentioned in my letter

Yours Sincerely

Dawn Wood

Chair

Thyroid-Disease.Org.Uk

www.thyroid-disease.org.uk, This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

 References Endocrine Abstracts (2007) 13 P316 Does synthetic thyroid extract work for everybody? Gautam Das, Shweta Anand & Parijat De
Diabetes & Endocrine Unit, City Hospital, Birmingham, United Kingdom Endocrine Abstracts (2008) 15 P359

Improvements in quality of life in hypothyroid patients taking Armour thyroid DH Lewis, J Kumar, P Goulden & DJ BarnesSucks MI, Ortiz E, Daniels GH, et al. Sub clinical thyroid disease: scientific review and guidelines for diagnosis and management. JAMAR 2004; 291: 228-238.

http://www.thyroidscience.com/Criticism/lowe.3.16.09/lowe.bta.rebuttal.3.16.09.pdf 

http://www.onmedica.com/BlogView.aspx?blogId=9183e08b-e64b-402c-a05f-47fd7f1736ff&postId=b83ef721-b6f0-4da7-a172-579a5b4806e5 

http://consumerlawpage.com/article/levothyroxine.shtml 

Åsvold BO, Bjoro T, Nilsen TIL, et al. Thyrotropin levels and risk of fatal coronary heart disease. The HUNT study. Arch Intern Med 2008; 168:855-860. Iervasi G, Molinaro S, Landi P, et al.

Association between increased mortality and mild thyroid dysfunction in cardiac patients. Arch Intern Med 2007; 167:1526-1532 Rodondi N, Newman AB, Vittinghoff E, et al.

Subclinical hypothyroidism and the risk of heart failure, other cardiovascular events, and death. Arch Intern Med 2005; 165:2460-2466. Walsh JP, Bremner AP, Bulsara MK, et al.

Subclinical thyroid dysfunction as a risk factor for cardiovascular disease. Arch Intern Med 2005; 165:2467-2472. Crapo LM.

Subclinical hypothyroidism and cardiovascular disease (editorial). Arch Intern Med 2005; 165:2451-2452

Effect of Levothyroxine Replacement on Lipid Profile and Intima-Media Thickness in Subclinical Hypothyroidism: A Double-Blind, Placebo- Controlled Study F. Monzani, N. Caraccio, M. Kozàkowà, A. Dardano, F. Vittone, A. Virdis, S. Taddei, C. Palombo and E. Ferrannini Department of Internal Medicine and National Research Council Institute of Clinical Physiology, University of Pisa, Pisa 56126, Italy

The association between TSH within the reference range and serum lipid concentrations in a population-based study. The HUNT Study Bjørn O Åsvold^1,2, Lars J Vatten¹, Tom I L Nilsen¹ and Trine Bjøro³

Are serum thyrotropin levels within the reference range associated with endothelial function? Henry Völzke^1,*, Daniel M. Robinson², Thomas Spielhagen², Matthias Nauck³, Anne Obst¹, Ralf Ewert², Birger Wolff^2,4, Henri Wallaschofski², Stephan B. Felix² and Marcus Dörr²

Bone mineral density in premenopausal women receiving levothyroxine suppressive therapy. Nuzzo V, Lupoli G, Esposito Del Puente A, Rampone E, Carpinelli A, Del Puente AE, Oriente P.Department of Molecular and Clinical Endocrinology and Oncology, University Federico II, Naples, Italy. 

Carefully monitored levothyroxine suppressive therapy is not associated with bone loss in premenopausal women. Marcocci C, Golia F, Bruno-Bossio G, Vignali E, Pinchera A. Istituto di Endocrinologia, Università di Pisa, Italy 

Suppressive doses of Thyroxine do not accelerate age-related bone loss in late postmenopausal women.Fujiyama K, Kiriyama T, Ito M, Kimura H, Ashizawa K, Tsuruta M, Nagayama Y, Villadolid MC, Yokoyama N, Nagataki S. First Department of Internal Medicine, Nagasaki University School of Medicine, Japan 

A slightly suppressive dose of L-Thyroxine does not affect bone turnover and bone mineral density in pre- and postmenopausal women with nontoxic goitre. De Rosa G, Testa A, Maussier ML, Callà C, Astazi P, Albanese C. Institute of Endocrinology, Catholic University School of Medicine, Rome, Italy 

The effect of thyroid hormone on skeletal integrity. Greenspan SL, Greenspan FS. Division of Bone and Mineral Metabolism, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, Massachusetts 02215, USA.

The Clinical Significance of Subclinical Thyroid Dysfunction Bernadette Biondi and David S. Cooper Department of Clinical and Molecular Endocrinology and Oncology (B.B.), University of Naples Federico II, 80131 Naples, Italy; and Sinai Hospital of Baltimore (D.S.C.), The Johns Hopkins University School of Medicine, Baltimore, Maryland 21215

Increased cerebrospinal fluid levels of 3,3',5'-triiodothyronine in patients with Alzheimer's disease.

Sampaolo S, Campos-Barros A, Mazziotti G, Carlomagno S, Sannino V, Amato G, Carella C, Di Iorio G.

Department of Neurological Sciences, Second University of Naples, Italy. This e-mail address is being protected from spam bots, you need JavaScript enabled to view it Transcript of GMC hearing http://thyroid-disease.org.uk/index.php?option=com_content&task=view&id=124&Itemid=100 Low thyroid-stimulating hormone as an independent risk factor for Alzheimer disease.

van Osch LA, Hogervorst E, Combrinck M, Smith AD.

Oxford Project to Investigate Memory and Ageing, Department of Pharmacology, University of Oxford and Radcliffe Infirmary, UK. 

M Weissel.Treatment of psychiatric diseases with thyroid hormones.Acta Medica Austriaca, 1999, Vol 26, Iss 4, pp 129-131.

H Heuer, MKH Schafer, K Bauer.Thyrotropin-Releasing Hormone (TRH), a signal peptide of the central nervous system.Acta Medica Austriaca, 1999, Vol 26, Iss 4, pp 119-122.

F Konig, C vonHippel, T Petersdorff, W Kaschka. Antithyroid antibodies in depressive diseases.Acta Medica Austriaca, 1999, Vol 26, Iss 4, pp 126-128.

A Steiger.Thyroid gland and sleep.Acta Medica Austriaca, 1999, Vol 26, Iss 4, pp 132-133.

Jackson IM .Thyroid 1998 Oct;8(10):951-6.

Refractory depression: treatment strategies, with particular reference to the thyroid axis. Joffe RT . J Psychiatry Neurosci 1997 Nov;22(5):327-31 .

Thyroid hormones in depressive disorders: a reappraisal of clinical utility. Lasser RA , Baldessarini RJ, Consolidated Department of Psychiatry, Harvard Medical School, Boston, Mass., USA. Harv Rev Psychiatry 1997 Mar-Apr;4(6):291-305

The hypothalamic-pituitary-thyroid axis in major depression.Sullivan PF , Wilson DA , Mulder RT , Joyce PR University Department of Psychological Medicine, Christchurch School of Medicine, New Zealand. Acta Psychiatr Scand 1997 May;95(5):370-8

S Ramschak Schwarzer, W Radkohl, C Stiegler, HP Dimai, G Leb. Interaction between psychotropic drugs and thyroid hormone metabolism - an overview. Acta Medica Austriaca, 2000, Vol 27, Iss 1, pp 8-10.

Dorn et al. Baseline thyroid hormones in depressed and non-depressed pre- and early-puberty boys and girls. J Psychiatry Research 1997(Sept_Oct);31(5):555-67.

Birkenhager TK et al. An open study of triiodothyronine augmentation of tricyclic antidepressant in inpatients with refractory depression. Pharmacopsychiatry 1997(Jan);30(1):23-26.

SK Rack, EH Makela. Hypothyroidism and depression: A therapeutic challenge. Annals of Pharmacotherapy, 2000, Vol 34, Iss 10, pp 1142-1145.

Triiodothyronine augmentation of selective serotonin reuptake inhibitors in posttraumatic stress disorder. O Agid, AY Shalev, B Lerer. Journal of Clinical Psychiatry, 2001, Vol 62, Iss 3, pp 169-173. 

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We are also including some of the many letters ,sent by our members to the RCP in response to this statement.

Subject: RCP Statement on Hypothyroidism I was shocked to read the recent RCP Statement on the Diagnosis and Management of Hypothyrodism.  I understand that you have had detailed responses from Thyroid Disease UK and Thyroid UK so I will not attempt to answer the points made in the statement, just to give a brief summary of my own experience.

In May 2007, after experiencing problems with arthritis, I had a full blood test privately.  It showed high anti-thyroid antibodies and I was advised to see my GP which I did.  I then did a lot of research and the penny soon dropped; I had so many of the symptoms of hypothyroidism and the GP agreed that this was probably what I had.  A subsequent TSH test however, revealed a level of 1.26, at which point she said that I would not need treatment for hypothyroidism and proceeded to offer me anti-depressants and/or HRT. No further thyroid tests were offered.  If my TSH was “completely normal”, that was it. But I was not depressed and I did not want to take HRT and I had some symptoms that were very specific to hypothyroidism.  These were simply dismissed. 

Had it not been for patient support groups such as Thyroid Disease UK and Thyroid UK, I would probably be very ill by now. Instead I saw a private doctor in this country, an ex-GP who is hypothyroid himself, who specialises in thyroid problems and spends his life helping patients who have been badly let down by the NHS. He examined me properly and suggested I try Armour which I have to import from the US and pay for myself.  I built up the dose gradually and have pretty much regained my physical and mental well being.  I have lost weight (an impossibility before, despite a good diet and exercise), the aches and pains are greatly reduced, I have infinitely more energy and the mental fog has evaporated. 

I was planning on returning to my GP and asking for Armour to be prescribed.  What chance do I have now? 

I really do feel let down by the NHS.  I am left to self-medicate because I do not fit into the narrow parameters governing the treatment of hypothyroidism in the UK.  Firstly, the TSH test is useless on its own.  Why do doctors not pay attention to the symptoms a patient has?  Secondly, why would you assume that Thyroxine would be a better treatment than Armour when the former only has T4 in it and the latter more closely replicates what the human body naturally produces?  Could it have something to do with the power of pharmaceutical companies and the fact that hypothyroid patients are entitled to free prescriptions once they have been diagnosed? 

I don’t care about free prescriptions, I would just like to be able to have Armour prescribed by my GP.  Because of my experience, I have never been back to my GP surgery.

I urge you to please taken notice of the thousands of people in the UK who feel they have been unfairly treated – or not treated at all! Thank you. 

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Hi,

lt is with alarm that l heard that the guidelines for hypothyroid patients were introduced and include the ceasation of Armour thyroid medication prescriptions and T3 (cytomel) only in rare cases.

 How can eminent physicians come to such a drastic conclusion with out consulting patients who are taking Armour thyroid very successfully? Why haven't trials been approved for testing the efficicy of this medication?

l have tried all of the medications that were available on prescription, firstly Levothyroxine made my condition so very much worse that l had to be hospitalised.  

Eventually l was prescribed Armour thyroid and l have had a very good reaction to it, all my symptoms have subsided a great deal. l am now able to function and enjoy life again, after almost 3 years of medication that was making me bed ridden. How can being condemned to one medication when people are getting such a great deal of symptom relief from better medications for them be right or compassionate?

Just be fair about this and listen to the patients.

 Yours sincerely,

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I hope Ms Perry, that I have given you an indication of my outrage at the RCP’s statement.  I feel that thyroid disease is not given the attention required as patients are long accustomed to plodding along, accepting a poor quality of life due to the lack of education amongst health care professionals.  The RCP’s statement takes thyroid treatment back to the dark ages (well, at least then animal thyroids were more easily available, so that is a little unfair!) and does the public an immense dis-service.

 I hope that the current statement is replaced by the end of the year, by the RCP, with one that makes a little more sense and that shows some thought in its compilation.  The question does have to be asked why if I can see the problems with it, without six years at medical school plus experience, why the RCP should see fit to issue such a statement.  Indeed, I have received comments from health care professionals who dismiss the statement as "utter twaddle", "lacking in expertise" and "a load of politics that us experts will ignore."

I thank you Ms Perry for your time and look forward to seeing a revised and more appropriate statement in the very near future.

Regards,
------------------------------------------------------------------------------------------------------I have suffered for years because my blood tests were not properly reviewed.

I had a bought of Glandular Fever when I was 15 and never full recovered. I have managed to live a relatively normal life for the past 15 years however I have had to suffer the indignities of IBS, vomiting, memory loss, depression, cold extremeties and generally having less stamina than my peers because several GPs refused to listen to me based on blood tests. The worst thing has always been the extreme fatigue that hangs over me at all times.

28 months ago my then GP 'diagnosed' me with ME/CFS and I have been hugely stigmatised by this ever since. I was reviewed by a specialist in gastrointestinal/ME issues who chatted to me for 40 minutes and proclaimed me 'chronically fatigued' - he also told me that being a bright, intelligent girl would mean I would probably recover in about 4 years. Quite a statement I am sure you'll agree.

I used to work in a job I loved in the design industry - this job relied heavily on my ability to travel all over the World, something that became harder and harder for me to manage as it seemed with every long haul filght I took I became extremely ill for the first 24-48 hours of the trip - vomiting, diahhrea, disorentation and fatigue. This meant I would be compromised health-wise for some very important meetings.

Eventually I had to resign from my job because I thought it was making me ill. I have not been able to work for the past 28 months as I cannot predict how my health will be one day to the next. Some days it's all I can managed to get myself up and dressed before becoming exhausted - other days I feel a little better and can manage a trip out, but only ever for a short time.

I have tried everything to make myself feel better, from very costly NLP courses to vitamin supplements, believing all the while I would be this way forever and that I had somehow done this to myself - I was told I had stressed myself out too much, I couldn't see how when I was just living life with all it's ups and downs but I came to think I was my own worst enemy.

Finally last August I succumbed to a huge depressive state - this is very out of character for me and literally started over the course of one lunchtime, and did not begin to lift until around March this year.

I have been living life behind a 'veil', with a foggy head that I cannot clear, dizziness and balance issues (althought uopn inspection there appears to be nothing wrong with my ears) and at times it has been extremely frightening and distessing.

During this time my GP prescribed me anti-depressants - something she had been very keen to give me from the first time I went to her with my concern over being fatigued continuously, even though up until that point I has repeatedly told her I was not depressed.

My husband and I then moved house in October to a bungalow as I could no longer manage the stairs in our rented house. This event seemed to make my stress and anxiety levels go thorugh the roof so I began the course of anti-depressants. After my 4th pill I had what the doctors determinded to be an allergic reaction - I could not speak properly, words came out all jumbled, could not make my body work properly and became numb all down my right side, from the top of my head to my toes, even in my mouth. My parents called an ambulance because they, and I, believed I was having a stroke.

This numbness is with me still to a lesser extent and effects me every day, I have a gait when I walk when the numbness/weakness is at it's worst. I was prescribed propanolol beta blockers by my neurologist as there was no evidence of of anything 'more sinister' causing the migraine-like attacks on a CT or MRI scan.

I also reacted badly to the beta blockers, having high-level panic attacks and palpitations several times a day - the total opposite to the effect beta blockers are supposed to have.

Eventually I confronted my new GP about all this and he became angry with me and told me my blood tests (Full Thyroid Function) were within the normal range, there was nothing wrong with me and it was all in my head - the only thing he could do for me was to refer me to a psychiatrist. When I asked why, if there was nothing wrong with me, did I have numbness/weakness all down one side, he simply shrugged and laughed at me.

I then changed to a new doctor and after a massive amount of research on my part found that because my mother is hypothyroid I may be prone to developing the condition myself. I had mentioned many times to every doctor I saw that my mother had thryoid problems.

I asked my new GP to test my thyroid antibodies and we found that I had abnormally high titers of them. The reference range is 0.0-34.0 and I was found to have 314.0.

I have had all the symptoms of being hypothyroid over the years and been through massive amounts of stress and worry because the doctors could never seem to get to the root cause of the problem and several times I myself was 'blamed' for not helping myself when it's all I ever thought about - what could I do to get well? The strain it has put my family and my husband under has been immense and has caused all sorts of worry - we all thought perhaps I had a brain tumour or MS at various stages and I was in many ways preparing myself for disability or early death.

Not a fantastic prospect at the age of 30 when I could have been cared for by a GP from the beginning and armed with more knowledge on my condition, Hashimoto's Disease, if they had looked at my symptoms more carefully rather than relying on the hugely flawed basic TSH/T4 test. I have since had my free T4 reviewed and it is found to be very low in the range and now have the battle of trying to find treatment to give me back my life.

I feel I have a battle on my hands because while it has been documented that low doses of thyroid replacement hormone can aid the symptoms of Hashimoto's it is still not widely believed by all GPs - will I have to wait until I become fully hypothyroid to receive treatment? When the TSH finally crosses over to 'out of range' like I know it will? All the while becoming more and more ill until I fit with the reference ranges and having various drugs prescribed to me, all causing me horrible side-effects until I 'qualify' for the correct treatment.

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I am extremely worried by the issue of these new guidlines for the treatment and diagnosis of hypothyroidism, and fear that there will be hundreds of people left to struggle on without a proper
diagnosis who will be told their problems are all in their minds, and offered anti depressants instead of the medication to which they are rightfully entitled. along with cholesterol lowering
expensive statins, blood pressure reducing meds, operations for carpal tunnel syndrome,
endoscopies for stomach and absorbtion problems.
Yes T4 only does work for a limited time, unless you are one of the unfortunates who just cannot tolerate thyroxine in any form. but sooner or later the symptoms will all return, and unless you have one of the rare enlightened doctors who will treat by symptoms instead of blood tests you
are "up the creek without a paddle" so to speak and are forced to self treat - a situation which
nobody wants.
These guidelines must be amended after consultation with patients themselves(who know far
more about this condition than many primary care doctors) and they should remain just as
guidelines without the threat of sanctions for any doctor who chooses to think outside the RCP
box.
 
Yours faithfully,
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Dear Catharine, I wish to add my voice to the campaign to get the guidelines on diagnosing and treating hypothyroidism and the recommendations on the use of Armour changed. 

I am a 55 year old man (ex electronics engineer) and had always been very hard working and fairly fit and healthy (slim, non-smoker, non-drinker, good diet), until I fell ill late in 2005; feeling very weak, difficulties with thinking, planning and memory, aching all over and all the other symptoms of hypothyroidism. However, despite tests, nothing was found for a few months until early in 2006, when I was diagnosed with hypothyroidism. This in itself points to the problems with the currently accepted hormone levels for this disease; they just don't work for everyone, as we are all different! 

Despite being put on levothyroxine in March 2006 (approx.), I did not recover. The levothyroxine helped a bit and apparently brought my hormone levels back to 'normal', but I have remained unwell since, have been unable to return to work and am now receiving incapacity benefit instead of being the very capable, productive person I once was (working, paying taxes and contributing to society). This makes the arguments against armour on a purely financial bases completely ridiculous and untenable.  

I only recently found out about Armour and asked my Doctor to prescribe it, if only on a trial basis, as I have nothing to lose and a lot to benefit if it were to improve my condition. Unfortunately, although he was willing to do so if he got approval, he was told that it was 'not recommended' and declined to prescribe it for me.

I believe that Armour was the treatment used for hypothyroidism before levothyroxine was developed and I know that it is a natural product, derived either from pigs or cow's thyroid glands. Despite claims to the contrary, it has also been shown to be stable and reliable in terms of quality and dosage. Levothyroxine on the other hand, is a synthetic product, which uses a synthetically produced versions of the so-called 'active' ingredients in natural thyroid glands. The problem with this is that no synthetic product can exactly match the original, even if it is designed to do so - which levothyroxine isn't! It only contains what is thought to be the most important active ingredient of the natural thyroid extract. Despite the fact that medical experts claim to have a good understanding of the way the thyroid gland works and how the whole body relies on it and the various hormones it produces, this simply cannot be the case, as it is an extremely complex feedback loop system and cannot be fully understood and described in such simple terms as are currently used, so how anyone can say that any synthetic drug can work exactly like the proven natural remedy in every case is plainly ridiculous.

I acknowledge that many synthetic drugs are used every day and many are very good at treating simple (and I'm sure, some complex) problems and diseases, but none can be guaranteed to be 100% successful, as every person and every instance of any disease or illness is unique. Surely, in these times of encouraging everyone to live more 'natural', 'holistic' lifestyles, a natural medicine with a proven track record should be taken very seriously as an alternative for those not getting a good result from the 'standard fare' synthetic product.  

Denying people the right to alternative medicines is criminal, especially when they are so badly hit by multiple symptoms and their lives are completely devastated by doing so. By giving sufferers of hypothyroidism the right to at least try Armour, with the option of going onto it permanently if successful, could not only change thousands of lives for the better - possibly hundreds of thousands if the levels are revised - but it could in fact save many millions of pounds in benefits payouts, doctors and hospital costs and I'm sure in many other areas - as well as bringing in taxes from the returning multitude of workers (and spenders of their renewed earnings)! 

I, for one, had always been totally independent and had never claimed a penny in any way until I was hit by this problem. Even then, I initially refused to do so in the belief that I could fight the problem and build my own business from home. Despite my determination, the hypothyroidism won out and I was simply not able to put in the time and effort needed to sun a successful business and I eventually and reluctantly had to acknowledge that I could not cope and eventually registered for incapacity benefit. I truly HATE being on benefits of any sort and would love to get back to normal and be able to support myself again, as I know I could, if I were well again. 

I am still trying to get my business working and will never give up, I am just not the sort to do so, but I am fighting a losing battle, not to mention being many, many thousands of pounds in dept now (and more so every day) and likely to lose my home very shortly (with no idea of what will happen to me then!) - benefits simply do not cover the cost of living. 

Please, please, change these rules now. Give us back our lives and our dignity - or at lest the option of trying every treatment available that may help - and save millions of pounds in benefits, lost taxes etc. in the process! Regards,

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