Thyroid Shakeup in the United Kingdom: British Guidelines Severely Limit Hypothyroidism Diagnosis and Treatment Options

What can you say? Awful, awful, awful.
The RCP and the BTA have no shame, are completely unscientific and don’t care about patients.

Where is the evidence that Armour thyroid is harmful to patients? How can the RCP claim to be practicing evidence based medicine if they don’t even have any evidence?

The RCP and BTA have provided not ONE single reference to back up their claims.

Presumably they ignore the studies conducted by their own homegrown endocrinologists?

Endocrine Abstracts (2007) 13 P316
Does synthetic thyroid extract work for everybody?
Gautam Das, Shweta Anand & Parijat De

Improvements in quality of life in hypothyroid patients taking Armour thyroid
DH Lewis, J Kumar, P Goulden & DJ Barnes

I as so many have been suffering because of the arrogance of the NHS, a place that we the people of the UK used to be very proud of.
I now hang my head in shame & sadness.
Debbie

The Royal College of Physicians have made no attempt whatsoever to evaluate the scientific evidence regarding the diagnosis and treatment of primary hypothyroidism, the use of Liothyronine (T3) or natural thyroid hormone in the treatment of hypothyroidism for those patients who do not do well on levothyroxine (T4) only. Their wholesale dismissal of the concept represents, at least in part, a biased attitude.

One can only conclude that post thyroid deficient patients do not benefit from the goals of the National Health Service. Respect, dignity, and compassion can not truly exist when medical practice does not acknowledge the discoveries of medical science. The quality of care is severely reduced when bodily functions and their potential for abnormalities are dismissed and/or ignored. The lack of proper care for chronic conditions does not improve lives, precludes working with patients, and discounts these patients.

This guideline MUST be ignored as there are no explicit links to scientific evidence to any of the recommendations listed. According to the ‘AGREE’ Collaboration Appraisal of Guidelines and Evaluation Instrument (1), each recommendation should be linked with a list of references on which it is based.) Consequently, as this statement is not backed with evidence based medicine, it should be ignored, or otherwise thwarted, as its implications are false.

It´s incomprehensible stupidity and arrogance. My heart goes out to the UK thyroid sufferers.

As I see it, maybe it´s really time for a physical, collective protest? Time to march hand in hand towards the NHS bastion and stop being ignored, demanding the evidence.

I had my usual six monthly consultation with my NHS endocrinologist two days ago. He has been recommending 3 grains of Armour for me for almost 6 years and my GP prescribes it. I would now be wheelchair or bed-bound had I still been treated with levothyroxine alone. I am fit and well and full of energy. Imagine my horrow when my endocrinologist told me he had just had the worst afternoon of his life. This was because he had to tell all of his patients he had received a letter from the President of the RCP saying he must not prescribe Armour Thyroid, USP and only treat primary hypo. with levothyroxine. He told me he couldn’t risk losing his career and livelihood so could now only recommend 100mcgs levothyroxine and 20 mcgs lliothyronine (T3) – at least, he was prepared to give me T3, but how many other doctors would refuse even that, after the BTA et al have placed a virtual boycott on all T3 containing products. I am now being forced, once again, into taking a medication that will once again likely make me ill. I will NOT be taking it, I will buy my own Armour privately.
My husband is also hypothyroid with a TSH of 5.8 – but because it wasn’t above 10.00, was refused a diagnosis by the NHS. He was diagnosed by Dr Peatfield and he started using Armour Thyroid. He is well and now we buy four grains for him. This treachery by the RCP means we have to somehow manage to pay for the 7 grains of Armour we take daily between us – and we live on a State pension.

THE NHS IS KILLING US!

I spent years trying to get diagnosed, then a further 6 on synthetics. Finally last May I got a prescription for Armour and gradually I have moved from 47 symptoms down to 4.

I cannot go back to the half life I had for all that time, my other half has noticed how much brighter and happier I am. My boss has noticed how much better I am at my job, I have energy and hair and soft skin and a memory.

Synthetic T4 does not work for me and the side effects I get from it are worse than the hypo symptoms. Armour for me is the difference between EXISTING and LIVING, please let me live.

As the husband of Sheila (TPA-UK)I fully appreciate the uselessness of the drug levothyroxine where the patient is unable to convert to the active hormone T3. During the period when Sheila was prescribed levothyroxine only, I saw her gradually deteriorate, becoming what I could only describe as a greying automaton, so weak that as she tottered down the street she would hold my arm for fear of falling. I called this the “Shangri’la Syndrome” – anyone seeing the film “Lost Horizon” will understand what I mean. Having proceeded onto a course of Armour, Sheila rapidly improved in health and strength and has now got the original quick mind and inquisitiveness that I knew in her when we first met. Without having used Armour, there would be no TPA-UK.

I can only say that the current action by the Royal College of Physicians et al. can only be described as crass in the extreme.

This statement is so frustrating and depressing for thyroid patients all over the world. Armour thyroid is not a dangerous drug and there are even some doctors who will treat patients with a TSH over 1. Therefore the idea of a level between 4.5 and 10 being sub clinical is laughable. Furthermore, there is NO EVIDENCE for any of these statements they make. No peer reviewed clinical trials or anything of the sort.

I am so angry.

May I add my support to all who challenge and criticise this utterly misconceived official guidance.

One’s faith in and reliance on such public bodies is further undermined on seeing the advice contained in the sponsored link to ths blog issued by the Food Standards Agency in respect of saturated fat. There they warn against consumption of coconut and palm oil, blandly bracketing these wonderful foods with animal (and other vegetable) saturated fats. I have today emailed the agency and asked them to supply evidence in support of their advice, and that when they find that they cannot that they amend it.

I cried when I realised what the implications of this were. I was slowly dying last year before I started taking Armour and although I have been ill for a long time the tough journey back began for me that day.
I am simply terrified of this legislation as it shows the blatent lack of care for the lives of many people. They cover it with the ‘concerned professional’ angle.

I fear for this country’s sufferers who do not get well on Thyroxine which are many, or for some reason like myself they deteriorate slowly over the years, or cannot tolerate it at all, what to do?

Surely someone with a little human kindness can help us to fight for our rights to more than one treatment for this disease.
It took me years to get a diagnosis in the first place.
x

I already buy my thyroid drugs from the internet because of outdated knowledge on the thyroid here in the UK. I am happy with this but need to have a operation for prolapsed
womb, and bad feet. so I am worried about them taking my medicines away from me if I am in hospital. we are being killed .oh god please help us.

This is truly depressing. I have been better since being on Armour, and at many times greater strength than the amount of T4 I was being prescribed, I am also taking Cortef for adrenal problems that my doctors don’t seem to recognise. (Though a ENT specialist I saw mentioned that I may have adrenal problems in a letter to my doctor who chose to ignore it).
I was hoping that when I am fully well I would be able to prove this to the NHS and maybe get the same treatment from them, as it is now with the exchange rate my treatment is very expensive.

They say that Armour can be dangerous. What about the drugs they Rx that are definitely dangerous (but produced by Big Pharma). I’ve been on statins for the last 18 months, and wondered why my muscles seemed to be wasting away, and even raising my arms above my head is exhausting. Then I read about statins, and how they cause your body to digest your muscles (including heart muscle!) amongst other things. Guess what – I’ve stopped taking them. So where’s the RCP’s concern about that?!

We just cannot let this happen! We must tell everyone we know about this madness and take action, there are thousands of us affected!

With every hypo symptom my GP told me that I was not hypothyroid with a TSH of 7.1. An Endo(vile man) confirmed this. When my TSH rose to 10.3 the same Endo told me I was hypothyroid.

What about the poor folks who’s TSH does not go above 10?

I cannot tolerate levothyroxine.

Why doesn’t my GP want me to get better? I just want my life back … please

I Live in France and we’ve had to live with these rules for years already. We can only get levotyroxine as treatment and only in a generic form made by one company so if the formuation doesn’t suit, tough luck. I’ve been trying to get help for 9 years now. I have Hashimoto’s and I’m getting worse. No longer able to work full time because of tendonitis and carpal tunnel and anxiety….British women fight back please or your future is bleak like mine!

What about those with undiagnosed secondary hypothyroidis, i.e. anterior pituitary failure. The TSH would be low or non-existent and the pituitary would not producing any! When will doctors learn to listen to their patients’ symptoms and go on their old-fashioned clinical acumen? We must be well informed in order to care for ourselves and continue our plight to keep ourselves well and get the best from life.

to be fair, i have had endless problems with NHS doctors. They do not understand and i have only ever met 1 doctor who put her hands up and said she didnt understand and refered me to an endocrinologist who is superb. If it means having a referal to get my Armour, that is fine by me. It is better people are refered on in my opinion, than waste yrs seeing clueless and arrogant GP’s anyway. Ask for a referal if the T4 plastic stuff doesnt relieve symptoms and get some more knowledgable advice i say.
I used to live in Australia where the doctors know so much more about the condition, you feel more confident when they prescribe things (if you go to one who has an interest in this field, they tell you on thier signs)and they are up there with uk specialists. Unfortionatly i dont think the NHS will ever have this system so like i say, do yuor research, get a referal and feel better )

I think this is partly down to money. Thyroid medication is free in the UK. The UK Government is broke. If they reduce the number of patients with thyroid money and cheapen the medication the UK Government will save a lot of money. Also the, so called, experts have taken a hard line before and would stupid if they backed down.

Wait until we get the single payer care everyone wants here in the U.S. It will be no different than Great Britain. Obama’s plan has what he calls, “Standardized care” where everyone gets the same treatment . It’s cheap and that’s why single payer, government systems will use it. I have warned and warned about this, but to no avail. If you are hypothyroid in the US, under standardized care, you will not be given choice. The government will make deals with the pharmaceutical companies to buy in quantity (see how cost effective doesn’t mean quality?) and we will be forced to pay via insurance for what we don’t want and don’t need. Be careful what you ask for, you may get it. I voted for Obama, but I’ve been trying to talk people out of single payer. It is an impossible task and will cost lives. This story is a warning bell: heed it if you dare. Fight single payer or get synthroid as default. It will happen.

After waiting for TEN years for a diagnosis (doctors said I was too thin, hair not coarse enough, etc. to be hypothyroid even though as a result of my own research I KNEW I was) a new doctor agreed to test my TSH only after I resorted to tears and BEGGED. My TSH was 630.3!!! No wonder I was near death and experiencing moments of semi-consciousness. Of course, I was prescribed Synthroid which I swallowed gratefully every morning. Gratefully, that is, until my hair began to fall out in clumps. I continued on my meds after learning that hair loss would propably be temporary. After six months I was told by my doctor that it was my imagination so I brought a huge clump of hair which I had lost that morning to him. After being told that there was nothing he could do I asked him to prescribe Armour. I think he was afraid to deny me because after asking me why ARMOUR? I was able to cite all the positive results I expected by taking T3. Within several days my hair loss stopped, my mood improved, I began to feel warmer and after six weeks, AFTER A TEN-YEAR LAPSE, my menstual cycle began again!! I had suffered so much for so long and now my life was returning. I felt as though I had slept through those ten years and I have to try not to be bitter about missing out on so much. What little energy I did have I devoted to raising my three children. I could go on but the point is I owe my total recovery, as long as I continue to take it, to Armour. My cycle has been like clockwork for eight years even at 55 years young! I have gotten up from the couch and now fill my time with hiking, scuba, indoor rock climbing, parasailing, rafting, swimming (could never go in the water while sick – too cold! I used to sit on the beach during 95-degree days wrapped in a wool blanket and watch the rest of my family in the water)and I am able to work out on my Total Gym several days a week. Anyway this is only part of my saga and all I can say is that I cannot imagine what I would do if I resided in the UK. I just know I would have to explore every avenue just to continue to remain on Armour. But, as most of us know, that can be extremely frustrating. Look at the problems many of us have encountered in trying to fill our prescriptions in the US. Forest Labs has experienced shortages of Armour in the past and it has been very difficult to maintain a supply at times! Shame on the UK and the system that would allow patients to suffer needlessly!

This guideline has shocked me to the core. treating patients so the TSH and FT4 are withing range is all very well, but no account has been taken on quality of life. What is the point in having perfect test results when you are half dead with symptoms still. I’m sure some patients do just fine on this regime, but I don’t. This is inhumane and will lead to early deaths. Depressed ( lack of T3) take prozac. gaining weight ( undermedicated slowing metabolism) you’re greedy take more excercise – can’t joints too painful ( lack of T3 again) and so it goes on. Cancer patients are permitted to pay for experimental treatments, why can’t we pay for our non experimental treatment if it’s all a matter of cost? I would give up my right to free prescriptions if it would mean I had the choice to have the treatment that improved my quality of life and not levothyroxine only.

Besides the comments already posted, isn’t this an infringement on our freedom of choice? Don’t we have a right to have all options on the table? Maybe there is a case for protesting against this curtailment of freedom. If someone would like to set it up you can go here… http://petitions.number10.gov.uk/
I’m sure there would be many who would sign.

For those of you who can swing it — Belgium legally prescribes and sells Armour. Perhaps you can get a GP there and go every 6 months for a check up and refill 6 months of the drug at a time. Especially for the woman in France, Brussels is 1 hr away from Paris (which is where I live.) I’ve had thyroid probs my whole life (nodule removed 30 yrs ago, etc etc.) I found I had to be my own researcher and then find doctors who cooperate ! It’s a lot of work, but I did it. Here’s a link to pharmacies in Belgium who sell Armour, but I don’t have any specific doctor recommendations for you. http://www.geocities.com/thyroide/pharm-Belgique.html Good luck and good health!

Why should where I live on this planet determine when and what treatment I receive. As so called thyroid experts disagree on so many aspect of thyroid diagoses and treatment then the patients should have the last say.

Janet,

I know exactly where you are coming from. I was eventually diagnosed after changing doctors after 4 yrs, i was very young and had never even heard of a thyroid before this. I couldnt hold a job down because i couldnt stay awake a full day, my hair fell out easily (although it is thick so looked quite normal to others), my skin was dry, i felt starving all of the time and was obsessed with chocolate, i suffered constipation, depression (and i knew there was nothing to really be depressed about). I had always been very active to the point i was on national gym teams etc but by the end of uni i felt horific, i still pushed to exercise but it made me feel awful. I put on weight but mainly on my breasts, so because i didnt look fat (i was still only a 12 at 5ft10), doctors didnt even check my thyroid levels. I eventually got put onto thyroxine which improved me from what i had been feeling but this was short lived. I went toi a doctor in Australia and he treid thyroid extract, it worked. he also put me on iodine drops. He literally saved my life. From his knowledge i researched for hours. I then came back to the uk. My doctor would not beleive a word i said, even though i had all test results with me. I was told i didnt look hypothyroid and that thyroxine is the only safe way to medicate. They even told me my problems were down to something else, but they didnt know what. I cried in the doctors twice. I was so angry (another symptom of the disease) I have had adrenal tests, the lot. I have now been diagnosed with reactive hypoglycemia. Diet is really important. Eating little and often and a high protien diet with fruit and veg and wholemeal along with something sugary if i feel a hypo coming on. All of my problems began after having a bad case of glandular fever. I am very sensitve to many drugs and i wonder if this is why thyroxine is no good for me.
I hope that the new guidelines allow people like me and Janet to continue our medicine or i will cirtainly be emigrating. I think the best thing to do is get a referal to an specialist with a good repuatation for this field. In my experience they understand and are the people who can help.
I think the NHS situation is definatly down to cash, the extract is expensive and the less people diagnosed the less they think they will spend. But then people will end up with all sorts of failures, illness etc. It is interesting to know that beofre the guidlines have even been changed they are less of a band to the guidlines in Australia, where you pay for your medication. $90 a quarter is well worth its cash i think.

everybear says:
I think this is partly down to money. Thyroid medication is free in the UK. The UK Government is broke. If they reduce the number of patients with thyroid money and cheapen the medication the UK Government will save a lot of money.

But it is a false economy.

When hypothyroid patients are either refused a diagnosis or left to flounder on thyroxine that isn’t working for them, the following happens….

Repeated referrals and expensive investigations and treatment (which invariably fails to achieve anything) from…

ENTs
Gastroenterologists
Rheumatologists
Neurologists
Psychiatrists
Gynaecologists
Dermatologists
Endocrinologists
CBT therapists
CAM practioners

not to mention countless wasted GP visits and treatments that aim to quell symptoms rather than deal effectively with the real cause.

How much money does repeated referral, investigation and symptomatic treatment cost the NHS when a simple, more cost effective treatment is already available to patients who suffer without diagnosis or when treated on thyroxine only?

That’s not to even mention the financial costs to the tax-payer of thyroid sufferers being on long-term welfare benefits due to prolonged illness.

Instead of this short-termist approach that denies patients their right to health – why don’t the RCP listen to the people who are actually suffering and who bear the emotional, financial and social costs of this disease?

I am taking this story to my acupuncturist who comes from England – it’s outrageous! If I were stuck in that situation my life would be over – my tsh was barely over 1.5 when I was exhausted and gaining weight on a reduced calorie diet – plus other symptoms. One thing that makes no sense to me – if you were backing your car into a space you couldn’t see and I was directing you once you were at the right spot I would not keep motioning you to keep coming! So why should anyone think there should be any significant amount of TSH circulating in the blood of someone who has an adequate amount of thyroid?! A TSH of TEN!! I would have been 6 feet under long before that happened!

I am so angry at this Big Brother state we are living in.What next will they be telling us what we can and cant do.I thought we here in Britain found dictators abhorrent???? !!!!

These types of decisions are typical from mandated nationalized health care systems. This type of class divided system is coming soon to the US and there is simply no evidence to prove it is better than our current system. In fact, this smacks of the opposite. The wealthy will always shop around outside of any mandate so these decisions simply hurt the poor. I was not encouraged to hear about this from the UK. May God Bless anyone suffering from thyroid problems in the UK. I will keep you in my thoughts and prayers.

I am so shocked and worried about these new guidelines..I was on t4 for 3 years and my health deteriorated to the point I am now regestered disabled, housebound, lost my career, my partner, my life.

I did get put on t3 by an endo and it helped a little but I have finally taken myself off thyroxine due to heart palpitations , infertility , anxiety and depression and am buying armour whilst still taking t3..
Since coming off the t4 my fertility has come back, I no longer have palpitations so am off beta blockers and my anxiety is better.

However, I don’t know the full effects of the damag to my body from the thyroxine as I am still exhusted and housebound.
I’m praying that in time my body will heal and I’ll respond to armour and t3 combo.

I was threatened to be struck off the nhs if i came off the t4 and bought armour so I am having to lie to my gp.

My symptoms have been attributed to mental health.. i.e the anxiety and depression for years..
I think that people who can’t tolerate thyroxine will get iller and iller .. This truly is frightening.. something needs to be done about this.

There is something really nasty going on with all this.

All the evidence is against the RCA and Co on this one and hundreds of thousands of people are suffering unnecessarily and costing the NHS millions as it is as well as ruining so many lives.
Millions more are going to be affected by this new ruling and that will cost the NHS even more and reduce the money available for care for everyone.
Why are they doing it? Are they mad? Are they evil?
Are they personally getting paid large amounts of money by the people who are going to be selling more Statins, anti-depressants, anti-obesity and heart drugs to all the poor people who only actually need proper thyroid replacement?

What?

This is terrible.. BUT, if we are not careful we in the US may be facing similar situations in the future (i.e., the new stimulus plan of which $10 BILLION is going to the NIH!!! outrageous — what pharmaceutical companies are in the NIH’s pocket here in the U.S.!)

Why are recommending such a rigid position? Thyroid problems can be very difficult to diagnosis because of the lack of symptoms or subtle symptoms that appear over the course of years. My doctor told me that I probably had thyroid problems for 2 years before I was diagnosed as hypothyroid. Many doctors treat each symptom before they think to check for thyroid issues. And on and on and on. With thyroid problems on the rise they should be looking at broader diagnosis and treatment not restricting medical care to one avenue.

A.B. Says Wait until we get the single payer care everyone wants here in the U.S. It will be no different than Great Britain. Obama’s plan has what he calls, “Standardized care” where everyone gets the same treatment . It’s cheap and that’s why single payer, government systems will use it. I have warned and warned about this, but to no avail. If you are hypothyroid in the US, under standardized care, you will not be given choice. The government will make deals with the pharmaceutical companies to buy in quantity (see how cost effective doesn’t mean quality?) and we will be forced to pay via insurance for what we don’t want and don’t need. Be careful what you ask for, you may get it. I voted for Obama, but I’ve been trying to talk people out of single payer. It is an impossible task and will cost lives. This story is a warning bell: heed it if you dare. Fight single payer or get synthroid as default. It will happen.

A.B. you hit the reason why these things are happening in the UK right on the mark! Where you made your mistake was voting for Obama in the first place. This is just another example of the USA looking more and more like Socialisim – where decisions are made FOR YOU! If Obama gets his way, as he did with the “Stimulus Plan”, we WILL have single payor and be in the same boat with UK!!! We need to understand where our legislators in our local states stand on issues like this and call them, write to them if you disagree and then in the end Don’t vote for them. Many on these blogs say Big Pharma is the enemy, actually, that is far from the truth! In the USA capitalism vs socialism is what allows the many choices we have in selecting medications and our healthcare, because of capitalism, you have competition and because of competition, we have CHOICES!!! If you want choices vs having ONLY 1 medication, then support capitalism NOT socialism…..

They have gone tooooooo far. Why? Cost? I have Kaiser and I pay for almost the total cost for Cytomel…minimal with the ok from my PCP. When I was first diagnosed with Hypothyroid/Hashimotos… my TSH was at 8.
I was sick; hair falling out; symptoms of other problems… nails breaking..couldn’t sleep; depressed. Yes very sick; now with 10 years with my rx including cytomel daily.. I am able to be symptom free. Is this what socialized medicine is going to do for us?

Of course, this move in Britain is politically based. This document is no more than ossified opinion. This is in a country that has “cookbook” medicine. So, politics rules! Likely, this our future, approaching rapidly.

In my practice, I have the patient supplement Thyroid USP, so as to maintain relief from low thyroid symptoms while maintaining a youthful Free T3 (& coincidentally suppressing TSH).

It is ironic that the British medical literature has pointed out “the emperor’s new clothes” regarding treatment of hypothyroidism. It turns out that suppression of the TSH is an expected consequence of thyroid supplementation that has no adverse health consequences, moreover the TSH has no specific or reliable correlation with thyroid function. (Meier, Christian, et al, Serum TSH in assessment of severity of tissue hypothyroidism in patients with overt primary thyroid failure, BMJ, vol 326:8Feb2003). The large majority of medical practitioners follow the system of prescribing synthetic levothyroxine to regulate the TSH, even though this practice has no scientific foundation. Doctors who practice Natural Hormone Replacement therapy, on the other hand, prescribe Thyroid USP or compounded T4T3 combinations, seeking symptom reversal without regard to the TSH and find success with great benefit for patients.

Levothyroxine is an inherently unstable drug, markedly affected by light, heat, & humidity. As Mary Shoman has pointed out, although on the market for many years, levothyroxine was not officially approved by the FDA until recently. (The Medical Letter, Vol 46, Issue 1192, 9/27/04) In 1997, inconsistency in the stability and potency of various formulations of Levothyroxine prompted the FDA to reclassify all oral levothyroxine products as new drugs & require New Drug Applications from the manufacturers. (Thyroid 2003, JV Hennessey, 13:279).

I suppose that I may have to move my practice offshore!!

I’ve been on armour for 1.5 years, and it’s the most well I’ve felt since I was a teenager. (I’m 38 now.) I always thought I was severely depressed, but turns out most of that was just chronic hypothyroid.

I am not surprised by all this. I fear it is more to do with NHS budgeting than health care. If everyone in the UK who were over the US guidelines and were having to be tested and given Thyroid prescriptions this could amount to millions a year. My husband was recently told by his GP that he didn’t need to test for his diabetes numbers. How was he supposed to monitor his levels? it transpired that the basis for this comment was because the GP’s are no longer allowed to prescribe the test strips for the blood glucose monitor he was given by the NHS. The left hand does not know what the right hand is doing – but if it costs – cut it !

Aside from the rediculous change in boundries which is life ruining(so you have to wait until it reads a cirtain mark before you can have treatment for horrific symptoms, which then take months to stabilise?). But if it will still be ok for a consultant to get this stuff, i really think investment would be better speant on educating GPs (i see a GP on here actually has good knowledge and i applaud this, but for every one like this, there are hunderds that dont have a clue, my friends who are GPs included). It is a really common problem and has such serious consiquences if not controlled and yet the doctors are unbelievably ignorant, arrogant and uneducated in this area!! i find it hilariously scary the more GPs i see.

I have just got my health back after t4 med made me lose everything.
I stared on armour thyriod in feb 08 and my health is normal. This news breaks my heart.

This is what we have to look forward to in the US, if/when nationalized health care becomes a reality.

There is much to be worried about in these guidelines BUT they are not NICE guidelines which are the ultimate NHS authority. These are ‘Guidelines’ not rules. They are from a ‘Trade Association’ and if I were the makers of Armour I would be taking legal advice that this group is trying to limit the market for this perfectly legal and effective drug. The EU takes a dim view of restraint of trade and I am shocked that they are naming a product in such a negative way.

The Cancer lobby groups have had great success in alerting patients to the ‘postcode lottery’ Thyroid patients need to do the same.

This is sloppy science and is very disappointing from so-called scientists.

I agree with the previous poster. We can expect that kind of treatment here in the US soon.

Oh God – it took me three years to be diagnosed and another five to get to a state of health where I again felt ‘normal’. What on earth is this Government doing? This is a very short sighted view on hypothyroidism, it would have cost the NHS a fortune in other diagnostic tests to determine a cause for all my previous aches, pains and debility. Most have now gone because I have an excellent private consultant who listens to me. We need to set up a petition to lobby the Government in the UK. Roll on a General Election!!!!!

Unbelievable News. Thanks to this website, I finally change to armour. I took synthroid for 2 years, and my joints throbbed like a 70 year old man (I’m 38). Keep up the good work.

i’m post thyroidectomy 2.5 years. i tried levo for up to 2 yrs. i read a book on thyroiditis and asked dr to prescribe me thyro. he did. i had a blood test done 1 mos. ago as i had awful, awful, awful hypo symptoms. to my dismay, i was at 4.5. his nurse said i was in the normal range; i said i couldn’t go on feeling this way. Nurse said she would put my chart on top. Got a letter from doc next day indicating that i was in the abnormal range. he advised that i increase my armour by 1/2 tab. per week. I take 90 per day with 1/2 extra on thur. and fri. Talked to my pharmacist who is also hypo and told her my levels. she was flabborghasted. she said she likes her level between 1 and 2. what in the heck are the normal levels? please help I’m feeling awfully odd and without nowhere else to turn. thank you.

I think the whole thing is disgusting and people should band together and mount a class action against those who made this decision.

Can someone point me to someone in the UK (or even abroad) who can give me a true diagnosis? I’ve lost the excess weight thru a liquid diet – but heck it creeps back on. I am running and going to gym, doing own horses on DIY livery – and exhausted still!. Hair falling out is obvious in the bth – not on my head. Cold all the time in the evenings… lots of thyroid type symptoms.

Tsh is “normal” at 3.8 a few years ago, thyroid antibodies are elevated. Vision is blurring, periods stopped (but started again when I experimaneted with a low dose of Armour). Any ideas, people?

I have been on Armour for nearly 12 months and feel so much better than the previous 5 or 6 years on Levothyroxine. I cannot go back to a half life. I won’t. I refuse to take levothyroxine.

Je suis médecin et j’exerce en France depuis longtemps.
Depuis mai 2006 les traitements thyroidiens naturels comme Armour sont interdits.
Pourtant tous mes patients étaient en meilleure santé.
J’ai donc décidé de continuer à prescrire Armour ou le produit équivalent pour nous qui s’appelle thyroidine. Mes patients le commandent en Belgique où cela est autorisé.
Je suis poursuivi par la justice et l’ordre des médecins et je risque d’être obligé d’arréter mon acitvité de médecin.
Et pourtant personne n’a réagi en France : les gens continuent de se soigner dans la clandestinité !
J’espère que les anglais réagiront !

Issy

I see a Consultant at James Cook University Hospital in Teesside who seems very good. I know that the Thyroid Uk site also have a list of private consultants, i once contacted one who does surgeries in bermingham and glasgow. I didnt see him in the end as i got sorted but he appears to have a good reputation. good luck

Cher Dr. Didier en France , j’aimerais faire votre connaissance . Je suis toujours à la recherche de bons medecins , en France et dans le monde entier . Les medecins comme vous sont extremement rare en France . J’aimerais vous envoyer les patients . Vous pouvez me trouver au forum
http://intlhormonesociety.org/forum , je suis le moderateur .
Susanne

I can’t believe that this is happening in the 21st century in a “civilised” country. It is outrageous.

I am in the UK and have hypothyroidism and CFS/ME. I have had to accept the appalling neglect of the condition of CFS/ME by the NHS for the past 16 years, but to learn that the NHS is going even further backwards in their approach to hypothyroidism beggars belief. It wasn’t exactly enlightened in the first place.

I had been hoping to try Armour as I don’t feel levothyroxine really alleviates my symptoms. Not a hope of getting it on the NHS but I was considering trying a private doctor; now I suppose even the few enlightened private doctors will be unable to prescribe it. (And obviously not everyone can afford private doctors or buying it privately – and why should they have to anyway? We’ve all paid our taxes and NI contributions.)

And if levothyroxine is to be the only treatment provided, I have serious concerns about the quality of the levothyroxine that is currently being provided by the NHS. A prominent NHS endocrinologist told me that he had doubts about the quality and consistency of the generic brands of levothyroxine manufactured in India and China that are routinely dispensed by the pharmacies. He didn’t, however, offer to prescribe me a brand version. The generics are obviously cheaper. And there is not even a consistency of make used; I get a different type from the pharmacy each time I have a new prescription.

Is there anything we can do to turn this decision around?

The decision to only use LT4 for therapy of hypothyroidism is an excellent one. The country has national health, and uses evidence based medicine to decide the care of the whole population. The use of alternative second level drugs, such as Armour and T3, which are mainly used in the USA, by members of the medical community outside the mainstream, is a great advance to the care of the patients in Britain’s national health system.

However, using a TSH of 10 will cause problems for their thyroid patients. I agree, most will not have symptoms below 10, but will have an increasing thyroid cancer risk. Also TSH above 2.5-3 can stimulate nodules and cancers to grow before the TSH gets to 10. If the government in charge of the NHS, authorizes a thyroid ultrasound, when the TSH is 3-10 and no nodules, and the patient has normal lipids, waiting to TSH of 10 is reasonable in a NHS.

I agree with Jennifer – this is about money as well as arrogance. Not only is thyroid medication free to those with hypothyroidism in the uk but anything else – for life. This may explain the ridiculously high boundaries used for diagnosis. My brother was refused treatment with Tsh of 9. This is in spite of a strong family history of the disease including myself, our dad, our grandmother, her siblings, etc!

My tsh was 276 when diagnosed. Thank goodness there was no room for argument then!

Mog,

If you see a specialist, they can still have you on the Armour if generic medication really does not work for you. The specialist writes to your doctor and explain that it is the best course of med for you. I see a Dr privatly but get my Armour from my NHS Dr because the specialist oversees things and made the assessment, the GP does not question the specialists judgement. It is rare apparently for this type of case, but if you are not well on levo, Armour is definatly worth a try.
Even with the new rules, in my case things should not change from what i gather. I cannot take levothyroxine, i have tried it 3 times and always end up really ill for ages after.

I also understand the brand issue. Again, some people can take different brands and not have any problems. I cant, i would get really poorly if i got my med from a different chemist when i was on levothyroxine also. Interestingly this also happened when i used different chemists to make up thyroid extract in Australia. I now take Armour and only Armour and it has turned my life around, i even have lovley nails for the first time in my life!
good luck and i hope that this helps

I live in Canada, where we have socialized medical care. However, unless you are a senior citizen with low income, the cost of prescriptions falls on the consumer. It isn’t ideal, but it seems infinitely better than the system currently in place in the UK! The main difficulty here is finding a doctor (or a pharmacy) who understands anything about dessicated thyroid. It seems our universities do not include it in their curriculum. My own daughter is a pharmacist and she knew nothing about it. I think the influence of the pharmaceutical manufacturers is the reason for this ignorance.

All do respect to the physician posting here, but how was hypothyroidism successfully treated and managed for many decades before the advent of Synthoid and the revered “Gold Standard” TSH test? With desiccated porcine thyroid!

For years I was dying a slow death on Syntroid, and chasing the Outer Limits of the TSH range like a dog chasing its tail. Thank God my doctor was open minded enough to refer me to an endocrinologist when I asked for a reassessment of my thyroid treatment. And thank God that endocrinologist was willing to write a prescription for desiccated thyroid when all my tests were “normal”.

Syntroid has had much publicized stability problems (including a class-action lawsuit levied against it for over charging patients). Here in Canada, desiccated “Thyroid USP” is produced by Erfa Pharmaceutical, a reputable company, not some hole in the wall, shady operation out to scam consumers. The cost of a three month supply is reasonable, certainly lower than Synthroid. Thyroid USP has been stringently tested, and has a long history of safety and efficacy. Can the same be said of Synthroid?

At this point, the only thing keeping me from perfect health is the detrimental effect on my body from 15 years of dosing by the lousy TSH test and using an inferior product (Syntroid) to treat my ever worsening hypothyroidism!

Thank God I live in Canada! No one is turned away from our hospitals or doctor’s offices because of lack of money. Yes, we have wait times. Some provinces are implementing private clinics where those with private medical insurance can jump into a shorter line for testing and treatment (a very controversial move). But it seems to be a fair blend of capitalism and socialism.

My heart goes out to those in the UK who have to suffer needlessly because of medical ignorance. God bless you all.

Richard Guttler MD,FACE says:

The decision to only use LT4 for therapy of hypothyroidism is an excellent one. The country has national health, and uses evidence based medicine to decide the care of the whole population.

Yes because there’s no such thing as individual physical differences in those persons resident in Britain.

Genes and environmental factors play no part over here. We Brits are all robotic clones whose bodies work in compliance with strict algorithmical rules as laid out by NHS endocrinologists.

Fortunately for NHS endocrinologists, British patients can be dealt with in an identikit manner when one discreet part of our endocrine system malfunctions. This is possible because the progression and manifestation of hypothyroidism and its attendant symptomatology is identical in all British patients.

The ease with which us identikit patients can be treated makes life as an NHS doctor a joy and the work a breeze. You should come over here – sounds like you’d fit right in.

Kay,

Thank you for your reply to my post. I hadn’t been aware that Armour was available from the NHS at all, I thought you could only get it by buying privately.

With the current situation, whereby the GPs diagnose and treat most hypothyroid cases (and obviously think they’re right and know what they’re doing), it’s diplomatically difficult when you go to a private doctor who then tells your GP how he should be managing your case. I had problems with that when a private doc suggested I take T3.

I’d had the hypothyroidism for 7 years before I was referred to an NHS endocrinologist. And that turned out to be a disappointing waste of time, as he said that the symptoms I was still experiencing despite being on thyroxine were caused by my CFS. How convenient for him… and unlucky for me, considering there is no known treatment for CFS.

I have taken the liberty of using an online translation tool to translate posts #51 (didier) and #53(susannne) from french to english:

I am a doctor and I have practiced in France for a long time. Since May 2006 natural thyroid treatments like Armour are prohibited. However all my patients were in better health. I thus decided to continue to prescribe Armour or the product which is equivalent for us called thyroidine. My patients order it in Belgium where that is authorized. I am continued by justice and the order of the doctors and I am likely to be obliged to stop my activity of doctor. And yet nobody reacted in France: people continue to look after themselves clandestinely! I hope the English will react!

Dear Dr. Didier in France, I would like to make your acquaintance. I am always in search of good doctors, in France and in the whole world. Doctors like you are extremely rare in France. I would like to refer patients to you. You can find me with the forum http://intlhormonesociety.org/forum, I am the moderator. Susanne

Thats the trick isn’t it. Thyroid meds are relatively cheap and patients would be fully well on treatment that suits them.
Other meds/investigations cost money and time and keep the NHS going and all employed there will have nice safe jobs.
This news is horrendous, we have to come together and fight this!

Mog,

I think you need to do your research before you go to the GP, ask for a referal to an endocrinologist who you have found to be helpful and listens. My Specialist would not dream of putting any random person onto Armour and he has commented upon its controversy, but if they are prepared to listen and they want to help, it is an option. Have your info ready and to hand (print outs etc thyroidUK is very helpful). GPs in my experience never argue with a specialist (i have extensive medical history!) and if they do i would be changing practise because after all, they are a GP and so have no grounds to really question a specialist. At my practise they were not happy to give me Armour until a letter was sent and now it is perfectly fine. Interestingly also my consultant is not private only, they are just open to listen and very good at thier job.

I have been a witness at a GMC hearing on this matter. I can assure you when the ‘prosecution’ produce an ‘expert’ who fantasised that a ‘thyroid condition is all in the mind’ even Lord Lister would been disbarred, Flo Nightingale defrocked! Blood tests are not a legal excuse – go for the b****ds tooth and nail, as the American said ‘Sue the b*****ds’ – loss of the House and Roller will cure them. Ten years of fatigue ‘cos some moron who has a bit of paper stating ‘Dr’ means nothing.

Do the National Lottery give grants for jibbets or removal of the thyroid to give these drongo’s experience of the condition – they do not even know who Broda O Barnes is for lords sake.

Fight the good fight comrades! Non-violent resistance to widespread ignorance is the only way. Unite and support proper thyroid diagnosis and treatment!

I had crap quality of life before Armour and suffered terrible myxoedematous psychosis for four years before thyroid diagnosis and thyroxine in 1998 – I had visual hallucinations and got misdiagnosed as schizophrenic! Shame on the NHS…

There are good doctors out there, be not afraid, get a friend and read up on your thyroid knowledge, get the treatment you deserve and need. We have a right to a decent quality of life.

When it seems dark let the light shine bright…knowledge is power and people united can change things.

Finally a big thank you to all the pigs from Chicago who go into the Armour tablets that give me LIFE!!! and a thank you to all those who care for them…may they have happy lives (I know nothing about these pigs but would be interested if anyone knows). I love you very much.

Be well and happy, eat protein and vegetables and some vitamins and minerals, avoid caffeine, drink water, maybe avoid gluten and get the right treatment…maybe Armour and the world will be your oyster again. There is hope and there is always the audacity of hope!!! Thank you guys for voting for Obama, he gives the world hope too. Love and Peace from Sarah, UK

The USA is next on this…our president now has legislation (stimulus plan) that gives him the authority to have the government decide the best care for a patient. yep, it’s in there. I wrote my senators pleading to have that taken out…anyone else do that? and has anyone read daschle’s book about fixing the health care system? he basically says docs needs to be offering the same thing for every patient with the same condition. so heck, not only do we work about our Armour being taken from us…some of us may not even be getting thyroid hormone at all if the government decides our TSHs of 3 (despite our symptoms) means we aren’t hypothyroid.

PS I recommend Dr Barry Durrant-Peatfield, independent thryoid doctor who has the disease himself…he UNDERSTANDS! See http://www.ThyroidUK.org.

If at first your GP won’t give you Armour try and try again and then give up and try another GP; if possible ask the first GP if another doctor in the same practice will prescribe for you. Phone or write to surgeries to see if you can locate a sympathetic doctor before you change GP.

Although your whole life may depend on getting Armour (ie you may not be well enough to work without it). Try to be “rational” and not emotional when you speak, write things down if it helps -intelligent emotional stuff can be powerful when written down. Say you feel emotional about this because you are desperate to feel better and need to try Armour…there are good guys out there who will listen. Don’t give up hope… watch “Sicko” (Michael Moore film) for inspiration…and listen to “Don’t be Shy” (song by Cat Stevens now called Yusuf Islam). Vulnerable people should not have to struggle so hard to get what they need…but sometimes that’s just how it is…believe that things will get better and find a way…Good luck, Love and Peace from Sarah UK

“This study demonstrates that TSH and T4 levels are poor measures of tissue thyroid levels, TSH and T4 levels should not be relied upon to determine the tissue thyroid levels and that the best estimate of the tissue thyroid effect is the rT3 level and the T3/rT3 ratio.” http://www.holtorfmed.com/nss-folder/printable_pdf/thyroid/reverse_r3_%20thebest.pdf If true, then the UK guidelines need to be changed.

You know what needs to happen? For The Medical community to take this seriously? A large Pharmaceutical Company needs A)To deveop a new molecule which has everything we need.T1 T2 T3 T4 Run a large 3000 px plus Randomised Controlled trial with a robust inclusion criteria that looks at different TSH levels and Antibody profiles.Set up front a patient quality of life score based on all the worst symptoms as well as the primary and secondary endpoints that clinically describe efficacy. And get this sorted out.!There is no money in Thyroid Disease for them because of all the generics and this good enough response we keep getting. The standard deviation of Thyroxine ~Generics can be anywhere between 95 and 105% effective. PLEASE! In a disease where the slightest tip either way causes awful symptoms. I have had 2 MRIS all because my generic T4 is not consistent, and they worry about Armour and cost!!!! Endos and Gps are not going to take Abstracts seriously because they consider it additional information due to the size of most of these small studies or they look at retrospective anaylsis which also isnt robust. The Medical guys cant afford to run the trials but Pharmaceutical Companies could but only if they are going to generate some funds in the future from The Disease. The people who really need to get behind this is the research scientists if they looked into it we might stand a chance.

Wow,
I can see why the physicians who study and understand thyroid disease are outraged by this website. There is no facts needed by those responding on Mary’s website, to the Brits NHS perfectly reasonable guidelines for treating symtomatic hypothyroidism. It is beyond belief that there are those who do not understand that T4, and TSH are the gold standard to decide if your symptoms are due to thyroid disease. All other symptoms that do not improve when the thyroid tests return to normal, are just poor souls with deluded concepts about the nature of their symptoms.They find physicians who foster the idea that people with normal T4, and TSH can still be hypothyroid. The physicians who are regular cheerleaders on the website have no credibility in the scientific medical community.These patients are the backbone of the Mary Shomon audience. I am sorry you have continued symptoms when the T4, and TSH are normal, but the data is clear you are not hypothyroid.I tell my patients to look elsewhere if they have unexplained symptoms that don’t correct in a few months on T4. I suggest you all get a life and stop filling the web world with your incorrect opinions. Your comments have a negative effect on all thyroid patients, and you need to stop.
99% of all thyroid patients are completely replaced, and symptom free, doing fine without the need for any other therapy than T4.The 1% read Mary Shomon and believe they are the exception to the rule. Good Luck, but I recommend all of you stop visiting this site, where M.S. tells you what you want to hear, rather than what the facts are.Her list of “thyroid physicians” that listen to the patients symptoms, to the total exclusion of a perfectly normal thyroid panel, is a joke. There are a few experts, but most are not. Good Luck. Dr.G. By the way, please look at the sponsored links at the bottom of this comments section, that pay the bills for this website. 1. Thyroid Warning 2. Natural remedy for hypothyroidism 3.Dr.OZ’s Free test 4. Use your symptoms and we will diagnose you, and advise you 5. And last but not least Stimulate your thyroid with healthy natural things? This is all rubbish that is aimed at you the thyroid patient. See what I am getting at?

No, Richard Guttler, I do not see what you are getting at. Or rather, yes I see what you are trying to present as the truth, but you are sadly mistaken.

“99% of all thyroid patients are completely replaced, and symptom free, doing fine without the need for any other therapy than T4.”

Based on what? Would this site really be present if this actually was the case?

Why is it so crucial to you to stick with the current regime, when there is massive clinical evidence to prove the opposite? And why are your fellow colleagues, who have a different opinion, automatically dead-wrong?

But most importantly, if a patient comes to you, gets diagnosed and receives the “golden standard” T4-treatment and still experiences symptoms, isn´t it your duty to investigate further to heal the person? Or to refer the patient to the specialist who will?

There is such an overwhelmingly big amount of prestige and arrogance in your posting that I almost need a machete just to cut through the lines. You really need to open your eyes to new clinical explanations.

Please just make sure that this Guttler chap doesn’t come to the UK. We have enough problems as it is — we don’t need any more of them!

Never mind Dick Guttler, all. He’s clearly becoming unhinged yet again, and has decided to become a troll in the the comments area of my blog. Too bad — as it seems that, as usual, it would be a far better use of his time for him to study up on thyroid basics and actually listen to patients, rather than pontificate on things that he clearly doesn’t understand.

Dick Guttler has a very long history of utter derision and outright contempt for thyroid patients…one that has been documented here at the site for years. He is also a beneficiary of/affiliated with companies that manufacture levothyroxine — so it’s no surprise that he would like to eliminate the competition.

Generally, given that he has a vested interest in levothyroxine sales, a total contempt for patients, and a shocking disregard for science — it’s no surprise that he’s here defending the latest developments in the UK.

Still want to know more about Dick Guttler? It’s all here at the site:

• Is Thyroid.com’s Richard Guttler Becoming Unhinged?
• Why Does Thyroid.com’s Dick Guttler Want to Eliminate Tests and Treatments That Help Thyroid Patients?
• Dick Guttler’s Museum-Quality Ideas About Thyroid Testing
• Fighting the Dogma of Dr. Guttler and the So-Called “Real Thyroid Experts”
• Dear Dr. Guttler: Yes, patients deserve and should demand relief…
• Are Only Members of Thyroid Professional Groups Qualified to Research and Write About Thyroid Disease?
• The Top Thyroid Sites: Pros & Cons (Reviews Thyroid.com — Dick Guttler’s Site)

More of a reason why I have no trust in the medical industry or doctors- they need to get their heads out of their asses and wake up and smell the pig gland already- it’s the only thing that works for me- Synthroid IS NOT AN EFFECTIVE TREATMENT for all you idiot doctors that are uneducated about thyroid disease- it’s all gotten old- treat yourself and order it yourself overseas- you will be much better off.

I have been taking natural thyroid for the past 17 years. I was diagnosed by Dr. Barry Peatfield who quite literally saved me from utter misery, and to whom I owe my good health. In fact it wouldn’t be too strong to say my life. Armour is NOT dangerous. This propoganda put about by the UK ‘experts’, (I use the term very loosely), is purely down to money. Armour was the treatment of choice in the UK up until the 1970’s when the pharmaceutical companies started manufacturing T4. The cheaper cost to the government of this synthetic poor replacement, is the ONLY reason that Armour was removed from prescription. It is this synthetic thyroxin that is EXTREMELY dangerous for those it does not help, because it will not be treating the under active thyroid problem therefore leading to massively debilitating illness (of multiple types), to the patient.

Financial cost, not patients’ health and welfare is ALWAYS the deciding factor when treating patients in the UK. and it’s in all areas of health, not just Hypothyroidism. It’s disgusting, particularly when you think what this government is happy to spend OUR taxes on!

I am seriously wondering if Dr Guttler is suffering from a mental health condition.He seems to delight in winding up thyroid patients and slating other doctors who do not share his inaccurate views.
It is highly unprofessional behaviour.He further insults thyroid patients who fail to get well on T4 only by describing them as ‘poor souls with deluded concepts” This man isn,t in the business of helping others.
He is merely here to insult,deride and upset those less fortunate than himself.And he is getting a good reputation for it.Pity him…

Mary, I just want to address you personally, in the light of the derisive comments about you and this site.

Thank you for your dedication to truly helping others.
Your information IS fact based – it was wrong of him to say it is not.

to the Doctor
If I am supposed to be symptom free when my TSH is normal, how come the symptoms I have are exactly the ones common to many who have hypothyroidism [and we did not consult over this prior to me noticing the symptoms, it was only after I made contact with some on the internet [which i only had access to 12 years after first being diagnosed anyway], that I found many already have the same symptoms, so it’s not a form of crowd hysteria, dear doctor]..

not just exhaustion and muscle/joint pains, but rough coarse skin on the outer face, sparse eyebrows, especially the outer third, hair brittleness/breakage/thinning, heavy menstrual cycle, etc etc
I can assure the doctor above that I am not deluded about these things, I am not imagining them.

With Hashimoto’s antibody checking SHOULD be done as well as TSH and other testing, but I get looked at as if I’m an idiot for asking for this…

of course the medical practice we are with is a ‘beacon’ practice and must stick to the letter of the law as they train the Uni medical students linked to it, so as not to encourage them to open their minds and be ‘rebellious’ *sigh*

With guidelines like this, I would have probably not had my children, and would have been doomed to miscarriage after miscarriage; as it was I had 3 before I figured out my hypothyroidism had anything to do with it. In addition, I feel normal with a TSH below 1.0. I’m glad I don’t live in GB, and glad that there’s only one Dick Guttler in the medical profession. I am thankful that after 15+ years with this disease I finally found a good endo willing work with me until I got to o a point of feeling normal. For me the “standard” treatment works fine, but it still took 12 years of frustration and struggle to get a doctor to treat me without being “numbers-based”. I applaud this site for encouraging you to be your own advocate. Believe me, in our medical community-regardless of where you live–you have to be!

I really feel for UK, cuz i live in Slovenia and we can’t get stuff like Armour here either, only Eltroxin & Euthyrox; + most of the doctors i’ve been too are stubborn & claiming only the levels count and any other symptoms one might have are not due to hypo. It’s riducuouls. I wish i could somehow magically open the eyes of all the docs in the world and make them see that existing and living are two very different things.

I hope the UK is prepared to take responsibility for the results of their actions.
Blood tests can be absolutely useless- All my blood tests came back normal and I had thyroid cancer!!! and for almost two years the doctors told me I was just stressed out! For goodness sake! Fortunately I have a “happy ending” but to depend on blood tests only is to kill someone slowly, is the UK prepared to deal with that?

I think Dr Guttler would benefit with a good dose of Armour.Bless

everyone who set these new rules and agree with them should be cursed with thyroid disease with ALL the symptoms. there the ones that need to get a life and to get a freaking clue. it’s probably all based on money because if they keep thyroid patients sick then they can prescribe all these horrible drugs…

Kay,
I think you are extremely lucky with your NHS specialist. I fear the majority of them are not as amenable as yours. The one I saw just played the numbers game with my results, declaring that the numbers were okay, so any symptoms I was still having weren’t anything to do with the hypothyroidism, because the thyroxine treatment I was on was all I needed, and that the continuing symptoms must be due to my CFS/ME. He also said he didn’t know very much about CFS/ME – surprising, and far from ideal, as hypothyroidism and CFS/ME are frequently concurrent conditions. This is a well known consultant at a major British teaching hospital.

yes, I no longer go to the endo’s when my GP has asked if I would like to

this is no exaggeration [maye it's because I'm in a big city]
but after a very tiring journey to get to the central hospital [as everything is centralised now], and we don’t have a car, so it’s by 2 buses, with walking at both ends
…2-3 hours wait outside of the hospital ‘clinic’ [have literally had to endure this], and then 5 mins or less with the ’specialist’- I realised that the way it set me back for days was just not worth it

I no longer need to ‘Get a Life’ I have my life BACK after taking Armour.

To say that one hat fits all is no brain thinking,
but understandable if affiliated with

Guttler having a vested interest in levothyroxine sales.

What a surprise.

Thank you Mary for your site. The upsurge of thyroid patient sanity is rising and may reach a critical level and overwhelm these ignorant and stupid doctors… I have a dream…some dreams come true, remember that guys…

Some of us don’t convert T4 to T3 adequately and remain very unwell; Armour gives us a great quality of life back. Possibly those with ancestors who experienced famine (as did mine)may be particularly susceptible to this. Anyone with Scottish/Irish ancestry and/or red hair in their bloodline take note; it’s just possible that you may be feeling crap on thyroxine alone and Armour may be helpful for you. It’s just a thought cos it was the big answer to my big life slump problem and I have not looked back since. If it helps you then great, if not, keep searching and good luck.

PS Don’t worry about ignorant people, laugh in the face of the tiger. It’s only worth speaking to people who are listening.

This is only an example of what national healthcare does for the people. We here in the US better brace ourselves cause this will be what we get. Yaa-hoo!

It’s about money, of course. If our governments spent less of our tax money helping America invade countries, they’d have some left for healthcare. This, coupled with the general arrogance of the British medical establishment which inhibits their learning ability and allegiance to the Hippocratic oath – and you’re left with a really half-arsed excuse for a healthcare system. America’s insurance-based system is terrible too, though – let’s all move to Germany.

POUR DIDIER MEDECIN COMMENTAIRE NR 51
Je suis interloquée de voir que vous êtes en difficulté pour cette raison. Vous avez mon soutien entier et absolu. Je suis à la fois traitée par Armour et vois la différence ! et en même temps d’une famille de médecins et de pharmaciens et je connais un peu le mode de fonctionnement rétrograde ou limité, l’étroitesse d’esprit et de vue, etc… de la profession par un conseil de l’ordre “rétro” des lois mal faites ! J’espère que l’on ne va pas vous ennuyer.

Pour Didier

Merci,merci pour tout ce que tu fais pour tes malades. Le monde a besoin de medecins comme toi.

Comme je sais un peu de francais (britannique d’origines anglaise, ecossaise, irlandaise et francaise toutes melangees!)je voulaise te le dire. Vive la Belgique et vive le thyroide naturel!

Esperons que tous le monde pourra prendre des ordonnance pour le thyroide naturel bientot de son propre medecin partout dans le monde.

Bon courage avec tous tes efforts; tu as mon admiration et un tres grand merci de mon coeur.

Autre site interessant. http://www.thyromind.info

Sarah

victoria says:
“It’s about money, of course. If our governments spent less of our tax money helping America invade countries, they’d have some left for healthcare.”

Victoria, you are an idiot. If the UK didn’t have local councils that invested all their money in foreign banks that go balls up, you would have money left for healthcare. If the UK used some of the exhorbitant taxes they charge everyone, you’d have money for healthcare. If Gordon Brown himself took responsibility for the economic state of Britain insteaed of blaming everyone but himself, you would have money for healthcare. Stop blaming America for the screw up of the British government. It’s really pathetic and boring.
Oh, and “helping America invade countries?” Please. The UK was involved in that whole fiasco up to their necks. Who was it that pushed the obviously false Niger Document which said Iraq had nukes and could attack within a half hour? Why is was TONY BLAIR. So stop spouting crap.
“Iraq’s Weapons of Mass Destruction: The Assessment of the British Government, also known as the September Dossier, was a document published by the United Kingdom Labour government on 24 September 2002 on the same day of a recall of Parliament to discuss the contents of the document.[1] The paper was part of a campaign by the government to bolster support for the 2003 invasion of Iraq. It contained a number of allegations according to which Iraq possessed Weapons of Mass Destruction (WMDs), including chemical weapons and biological weapons. The Dossier even alleged that Iraq had reconstituted its nuclear weapons programme. Without exception, all of the allegations included within the September Dossier have since proven to be untrue, as shown by the Iraq Survey Group.”
http://en.wikipedia.org/wiki/September_Dossier

The Royal College of Pysiccians is displaying the total antithesis of the meaning of the Hippocratic edict “Do no harm”. They have all bowed to the Great God Expedience (aka taking the cheapest, dishonest route) by virtually turning themselves into government ruled toadies who spread misinformation. I have written to them directly in slightly less rude terms than this about their unsubstantiated ramblings about Armour and, in a way worse, the way they turn a completely deaf ear to the people who matter, namely those who have low thyroid function. My doctor, whom I always considered a listening one, has deserted common sense, listened to the RCP and will now not prescribe Armour. How can so-called educated doctors say, with a straight face, that porcine thyroid, which is strictly tested and controlled by the US FDA, and is the nearest to the human one as is possible, is dangerous?
Dr Hotze of the USA has treated about 6,000 patients over 13 years (up to 2006) with no adverse effects.
I say to you, British doctors, wake up, look at patients, not tests, and treat the former, not the latter.

The NHS is run by drug companies. The GPs earn about £130,000 per annum. Do you think that they’re going to rock the boat.

It’s up to us as patients and taxpayers who actually fund the NHS to make clear to this government that we will not put up with being treated like this.

I think the time has come to throw away out politeness and make a big stink about it.

Remember the Suffrugettes and let’s do something to really make the establishment take notice of us.

What about descending on No 10 (as far as we can) and make a lot of noise.

We can go on for years and years writing polite notes and signing petitions. They all laugh at us.

We are supposed to be living in a democracy and the right to protest is the only way to let these people know that we are very very angry and won’t take no for an answer.

What about pregnant mothers? With *no* provisions for antibody tests, and a TSH point for “overt hypothyroidism” set at *10* for God’s sakes, aren’t they taking a VERY big risk of having brain-damaged babies because of pre-natal hypothyroidism? And if that happens, who is responsible? I can see lawsuits coming out of this one really easily. Like what happened in France in 1998 after the government there instituted a mass vaccination program of *adults* against hepetitis B – casing adverse events (allegedly), and resulting in a lawsuit against the French government – and the suspension of the program. See (http://www.visainfo.org.au/pages/04_Vaccines_and_Disease/Heidi%20White/HepatitisB_White.htm) for a reference.

And can antibodies from the mother pass onto the fetus and thus cause Hashimoto’s in the child, or does the placental barrier/mother-child immune interface deal with such things as autoimmunity?

Hopefully this decision by the RPC is one of the final straws that brings down the whole “T4-replacement-only house of cards” forever – in *both* the UK and US (and everywhere else I’d imagine).

And have these people never heard of the cERB-A gene, which codes for the T3 receptor, in which a mutation will create a *documented* case of thyroid hormone resistence which *must* be treated with supraphysiologic doses of hormone (T3, or perhaps T4 might work in some people). If I’m not mistaken, that pieces of genetic work *is* in a peer-reviewed journal (look in John C. Lowe’s book Metabolic Treatment of Fibromyalgia for the references).

I’d think it would be pretty hard to argue “maybe it was just placebo or a statistical fluke” when you have a mis-coded section of DNA staring at you in the face from the computer monitor..

Disgusted.. Just disgusted. Maybe the UK people will have the gumption to take Thomas Jefferson’s possibly mis-quoted works (ironically, said in the soon-to-be *United States*) to heart, as people on this side of the pond will not – “every generation needs a new revolution”..

I lived in the UK for 5 years after moving there from the US. I was diagnosed with Hypothyroidism after pulling teeth to get them to even listen to me (the doctor wouldn’t even talk to me and I had to bring my husband in to talk to the doctor). I was only diagnosed after they finally referred me to a gynaecologist and she tested my Thyroid. But, I was never able to get adequate treatment and suffered the whole time I lived there and had no life because I couldn’t do anything and had to stay home most of the time. They refused to listen to me and would not do anything to help or increase my dose. I finally left the UK and moved back to the States and decided that if the doctor wasn’t going to increase my hormone I would lose weight so I would need less. I succeeded in losing 30 pounds, although it took a few years, but my plan worked and I did feel a little better and was able to function more. I started researching more about Thyroid disease and medications and seeking out specialists who deal with this area of medicine. I am still trying to get the right treatment to this day, 10 years later. But, recently I found a doctor who was able to diagnose me with adrenal insufficency and Hashimoto’s among other things caused by my low Thyroid, something the doctors in the UK don’t even know about. If I would have stayed in the UK I would have been dead by now probably from heart failure or adrenal failure, some other complication. I am now paying the price in complications with my health as a result of the lousy treatment I received from the GPs in the UK. Apparently, I am not alone because a friend of mine who lives there is also going through exactly the same thing with her Thyroid treatment and she lost a few babies because of it and another friend there had to pull teeth to get her medicine for Lupus. That’s socialized medicine for ya. You get what you pay for. I did come across one great doctor there, but she wasn’t an NHS doctor! The NHS is only good for emergencies, and cuts on your finger, etc. In my experience the GPs only have a very basic knowledge of medicine, and it seems due to budget restrictions they limit treatment.

I am in the UK and I have just read the RCP pdf on the treatment of thyroid disease and feel that you should clarify that this ONLY applies to PRIMARY hypothyroidism NOT Secondary.
Further reading will tell you that secondary is defined when T4 & TSH are above the normal levels (there many are other defining factors also).
In my case it is not possible to bring my levels within the reference ranges using synthetic T4 or T4 + T3.

Ive been in the dark for 3 years now it was only when I researched for myself that I found the truth. When I was first diagnosed my TSH levels were 76! I had been misdiagnosed with postnatal depression for 10 months….ever since then I have been stuck on levothyroxine and I can’t believe how hard it is just to be properly treated. I went to the first docter I had and he simply shrugged when I asked him why I still suffered the same symptom just because I was better on paper and had ‘normal’ levels doesn’t mean I am better. I hear the same everywhere and I am right there too, I want to live I don’t want to exist. It really is time to protest in full force i’m sick of their cruelty I have stopped taking my medicine and am self treating until and if I can get desicated thyroid, I will keep going to the top to get this sorted because there are too many people suffering and its beyond disgusting.

I feel for these people with their wasted potential and the disabling consequences of the disorder. Boy,are the comments here on target! Hypothyroidism is a multi-faceted, complex pathology which even most doctors (as evidenced)don’t wholly grasp. How could anyone not be depressed knowing his problem is real–and FIXABLE, but not understood by those who control the “cure”. A complex disorder needs wide, therapeutic options, not “cookie-cutter” legislation. Hypothyroidism, in my case, is way outside of the norm. Although I manufacture T4, it is not being CONVERTED (to T3, the active hormone form) I well-tolerate only Cytomel, (which “jump-starts” conversion), and a small amount of Levothyroxine to keep conversion consistant. The efficacy of these praparations in this case, is due to their being synthetic praparations. When Cytomel with a 24 h half-life (which allows doesage adjustment)runs out, I am like Cinderella–after the strike of midnight. I urge people to raise a voice against totalitarian treatment, and make every effort to be informed (when not too foggy or ill)because the majority of practitioners don’t appear to be. I was 50 years old,labeled neurotic or hypochondriacal, before a top doc. came into the picture and prescribed the winning combination! Having been liberated, I am apprehensive that my Rx will be summarily removed.

The added births of cognitive defectives in the UK by mothers who have more subtile, yet damaging, hypothyroidism which may affect their in utero children, is not science fiction. (Most can be partially fixed with the RIGHT therapy shortly following birth)

There seems to be more interest in the “drug-shooter” who is throwing away his life, than the hypothyroid patient who tries, fervently to gain one.

AW

Its almost as though their not bothered not interested and its just so unfair