And right on the heels of my post below, I want to inform everyone of a REAL LIFE HORROR STORY that is happening to Sheila Turner of the UK right now. Sheila is a thyroid patient advocate who created the UK Thyroid Patient Advocacy website here.
Sheila will tell anyone who asks that she was very ill while taking levothyroxine (125 mcgs) only therapy, being wracked with back pain so severe she was unable to get out of her armchair, bed or car after sitting/laying down for a while. She also suffered from debilitating ‘brain fog’ and short term memory, along with the usual lingering hypothyroid symptoms while on thyroxine.
Sheila states: I couldn’t tolerate levothyroxine alone because it was found I was not converting this mainly inactive hormone to the active hormone T3. As my muscles and tissues were not getting the T3 required, my muscles in my back were going into spasm, causing the severe pain.
She then saw a private hormone specialist who started her on natural thyroid extract (Armour Thyroid, USP) and she regained her full health! It was so profound that she started the TPA-UK in 2004 to campaign for a better diagnostic and treatment protocol within the National Health System (NHS). (UK has socialized medicine.)
Fast foward to 2009. As I wrote about below in my Feb. 14th blog post, the UK Royal College of Physicians along with several supporting organizations recently brought out their pathetic and narrrow-minded new guidelines on the diagnosing and treatment of primary hypothyroidism. And lo and behold, Sheila, along with about 15 other patients on Armour via the same medical consultant, have had their Armour removed.
Says Sheila: He and every NHS endocrinologist has been sent a letter from the President of the Royal College of Physicians, telling them they should use thyroxine ONLY as a treatment for primary hypothyroidism and that they should not recommend or prescribe Armour Thyroid and that only accredited endocrinologists should ever recommend T3 as this was rarely indicated.
Sheila has been forced to return to the synthetic treatment of levothyroxine (100 mcgs) and to it has been added 20 mcg liothyronine (T3) split twice a day. But there’s no guarantee she will be able to stay on the T3. Additionally, don’t be fooled into thinking that a combo of synthetic T4 and synthetic T3 is as good as Armour. Patients all around the world who have tried it, then switched to Armour, report far better results with the latter.
Says Sheila in a completely shocked state: I cannot believe this is happening – I tried to question him as to the reason all the NHS endocrinologists didn’t demand the BTA produce MEDICAL EVIDENCE to show that hypothyroid sufferers ONLY ever needed T4 – he said he knew they should have produced evidence, but it seems because it has come from the RCP, his and everybody else’s’ hands were tied – they have to be seen to be doing what they are told. I got the distinct impression that if anybody rocked the boat, they would be next doctor arraigned before the GMC.
Making this real life horror story even more shocking, her medical consultant explained that the only way to find the truth as to whether Armour was a better medication or not was through clinical trials using Armour versus levothyroxine. (i.e. patient experience all over the world revealing it works isn’t enough evidence. Give me a break). But when she pressed him into starting this, he said they would need the backing of their thyroid association – yes, the British Thyroid Association (BTA), the very group that has said that a TSH of 10 is borderline hypo. (See my Nov. 7th post)
Sheila continues: I told him they would never agree to this, and he agreed also. I told him that we did NOT NEED the British Thyroid Association to get ethical approval – and surely he could get a group of like-minded practitioners around him and do this themselves – but it would cost a great deal of money – and, again, if you are a member of BTA (and I believe most endocrinologists are) then they daren’t do a thing without their approval.
At the moment, Sheila will tell you with sadness and shock that it all seems rather surreal at the moment. She is scared for every sufferer of this disease to be forced into taking only one thyroid hormone – a synthetic storage hormone. She is scared for herself, too.
Sheila expounds: I just sincerely hope that I can cope with the change-over to synthetics and that Armour has made my body strong enough to do this. I will make absolutely sure that my adrenals can cope with this. I feel SO VERY sorry for all of those sufferers who are being left in the care of a head in the sand endoprat , who will refuse to even give them the correct thyroid hormone their body needs. Once again – THE NHS IS KILLING US!
This is profoundly sickening and shocking.
If you are so moved, send this blog post (www.stopthethyroidmadness.com/blog) to anyone and everyone. Send it to your newspaper, your radio, talk shows, your friends, relatives, anywhere. This should NOT go unheard of by others. We need to tell the world about this travesty. Speak your mind about this by adding a comment.
Update: you can read Sheila’s and UK-TPA’s response here: http://www.stopthethyroidmadness.com/uk-tpas-response-to-the-rcp/
More from Sheila that gives UK patients hope: http://www.stopthethyroidmadness.com/relationship-between-the-RCP-and-MHRA/
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This entry was posted on Friday, February 20th, 2009 and is filed under uk. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Taina Ketola said:
Feb 20, 09 at 6:24 pmThis is a terrible situation. A medical revolt is needed. If we do not have health freedom we do not have freedom at all. Pharamceutical companies are controlling or attemtping to control the medical establishment all over the world. Any logically minded individual who examines the facts can clearly see that the natural thyroid products are far superior and the only truly effective way to treat hypothyroidism.
Darla said:
Feb 20, 09 at 7:41 pmHow can they take such a life giving drug away from the people that need it the most. This is criminal.
I was so terribly ill on T4 only drugs. Armour gave me my brain, my mobility and my livelihood back.
This troubles me deeply. How will people like me, and there are many, be able to function? I certainly wasn’t before Armour.
Joel L. Watson said:
Feb 20, 09 at 7:48 pmI live in the U.S. and I used to have a somewhat indifferent attitude concerning whether our country eventually adopts socialized medicine. After reading this post, I am definitely AGAINST it. I will not take anything but Armour for my hypothyroidism. If I were Sheila I think I would have to break the law and import Armour from another country. This is a fine example of what happens when government gets too big. Good luck to Sheila and others whose health is being held hostage by their own government – in the name of progress!
Mandy Waggott said:
Feb 20, 09 at 9:04 pmShocking but yet not suprising if that makes sense ?
After watching my mother suffer Myxedema due to endless mis-diagnosis by our local NHS GP’s, and then being diagnosed myself of hypothyroidism, (thanks to mum), we’ve spent the last year trying to get our gp’s to prescribe Armour after actually buying some on the internet because we were so sick of having half a life! and the gp’s never listening to how we felt. Obviously after taking it, we felt amazing, there was no going back to levo. Mum had to be referred to an endo to keep trying to get Armour prescribed, but was put back on levo with a supplement of T3 just like sheila, unfortunately the inevitable happened and mum felt worse than ever, even her appearance changed and colleagues from work noticed she wasn’t herself at all.
She kept telling me it was hopefully a means to an end, in order to get Armour prescribed. She asked for adrenals to be tested also, they told her results were fine for them and offered no supporting meds.
At the end of it all, the endo wouldn’t entertain the use of Armour and so neither would her GP, she was made to feel ill again for nothing!
All I can say is, good luck Sheila,, I really feel for you and so does my mum. We still buy our Armour from the internet while our financial situation still lets us, but it’s not cheap. But it’s a small price to pay for being able to live a full life, at least that’s how we see it.
Their has recently been a shortage of Armour available to buy from reputable internet pharmacies, doesn’t this tell these idiots something???????
Where are the celebs that have this disease, why can’t they help us to get this message out there? Or help fundraise to get these tests done? Someone must be able to do something, maybe a widely publicised site specifically for a petition, no blogs, info etc, just simply to sign? I know of 8 sufferers alone just in my family, there are thousands of us in the UK so what can we do ?????
From a very angry, frustrated hypothyroid sufferer!
Dominica said:
Feb 20, 09 at 9:39 pmThis is pretty ridiculous. I am considering moving to the UK for work reasons and there is no way I will register with the NHS. We are still “allowed” to take natural thyroid here in Australia, the socialised medical system here works differently to the NHS and doctors are allowed to prescribe whatever is legal and appropriate which if you find the right doctor, may include dessicated thyroid preparations. I will have to maintain a relationship with my Australian doctor and have prescriptions made up and sent to me!! How utterly stupid.
I feel very very sorry for all the hypothyroid patients in the UK now left without a choice. Diabetes patients can still use bovine or porcine insulin if they find it works for them…what the hell is wrong that porcine thyroid is considered essentially Evil in tablet form.
Sheila Turner said:
Feb 21, 09 at 12:27 amI am still reeling – and everything around me right now feels surreal. I get up each morning not believing this has happened. It was a miracle when, over 5 years ago I regained my normal health so dramatically after being so ill on T4 only, and I still call Armour my ‘miracle pill’ because this is what it is. Because I wanted to get the word out to all sufferers of this DD, I opened Thyroid Patient Advocacy with the sole aim of campaigning for a better diagnostic and treatment protocol within the NHS as I didn’t want anybody else to have to suffer the way I did. I worked so hard to get ALL the facts about natural desiccated thyroid to give to all UK doctors as they are still being given incorrect information and are told Armour and T3 are dangerous. It is the professors who run British thyroid Association who are dangerous – they don’t give a damn. All they care about are the exoctic locations they are sent to throughout the world to hold their conventions plus all the other wonderful perks Big Pharma provide for them – so long as they keep levothyroxine right at the top of the market (not forgetting statins of course).
I have read (and seen) too many horror stories of suffers who have been forced, for one reason or another, to stop their Armour and go back onto the synthetics and many simply have not made it. Many of the symptoms return, including brain fog – and I need my brain. I have decided that I will have to buy Armour from the US and keep my health. My husband is hypothyroid, diagnosed by Dr Peatfield with a TSH of 5.8. The NHS refused to treat him, (saying his TSH was normal) so we buy Armour for him from the US. He is on 4 grains. I am on 3 grains, so between us (and we are pensioners) we need 7 grains of Armour daily.
Why is it that the RCP, BTA et al. believe that levothyroxine works for every single one of us? Why is it that TPA-UK forum receives over 2500 messages a month from desperate sufferers trying to find a reason for their continuing ill health outside of the NHS? Why is it that tens of thousands in the UK (probably millions world wide) are being left without a diagnosis and therefore given no treatment because their blood results have shown to be in the normal range – when that ‘normal’ TSH range in the UK is 0.5 to 10.0?
I can and will continue to fight for the cause – but after my experience this week with an endocrinologist I loved and trusted and who has let his patients and myself down so badly, I wonder where all this will end up.
God help us all!
B said:
Feb 21, 09 at 3:26 amFrankly, this doesn’t surprise me. Somehow it seemed too good to be true that the NHS were finally recognising natural thyroid as a legitimate and massively beneficial alternative to thyroxine.
My experience with the NHS has been consistently frustrating. Their stubborn adherence to blood test results meant that I got incredibly ill, and when after finally getting a diagnosis and being put on thyroxine I continued to be unwell they refused to accept that it was my thyroid since it was being “treated”, offering me anti-depressants and referring me (pointlessly) to an ME consultant. By last summer I was near collapse and went in desperation to a private consultant who told me that my adrenals were in a state of near total exhaustion (I’d never heard of this problem before) and that I must switch to Armour because I obviously was not converting the T4 properly. I’m only just switching to Armour now, after months of trying to get the rest of me in better shape, but I’m buying it direct from the States. I wouldn’t go NEAR an NHS doctor with this because I know that, even if Armour were allowed, they’d probably force me to come off it and return to my detrimental dose of thyroxine. I would lose the life I’ve finally got back in the last 6 months.
I don’t understand why hypothyroidism is such a contentious issue across the medical establishment. It is such an easy thing to diagnose (just on physical symptoms alone), easy to treat and one would think it preferable that a patient take a natural substance over a chemical one. Why doctors consistently refuse to listen to patients baffles me. It’s made me so sceptical about the entire state medical establishment that the idea of having to see an NHS doctor gives me the willies!
We must keep up the fight, but it’s going to be a long one. Your site is such a tremendous help to isolated people like me who have been made to feel like renegades. Thank you!
Georgiana said:
Feb 21, 09 at 7:10 amAgain, I am so glad I don’t live in the UK. This is appalling. I hate to get political here, but this is EXACTLY why we don’t need socialism and socialized medicine here in the US. Why do you think the UK has done this? I got a pretty good guess, and it involves dollar signs (or, well, them funny-looking symbols the Brits use to represent money). So, I say that all of us who have the massive good fortune to be taking dessicated thyroid should thank our lucky stars that we live in a country that has a medical system that may not be perfect, but that at least allows our doctors to take charge of getting us better treatment, if they so choose, instead of simply following orders. We need to keep trying to educate our own doctors, no matter how stubbornly they may refuse to listen. I may not be a doctor, but I am an expert. I’m an expert on ME. I’m a patient, and I know what makes my body sick and what makes it well, and any doctor who won’t listen to my expert advice on what does and does not work for me will not stay my doctor for long. (Bless my doctor’s little heart that she chooses to treat me despite “normal” labs!) I say PRY MY ARMOUR FROM MY COLD, DEAD HANDS.
Judy said:
Feb 21, 09 at 9:06 amNo only are we having to fight GP’s in to believing we are hyopthyroid now we can’t even request Armour. I take levo and have done since 1994 (although it took my then Gp 6 long years to decided I was hypo) and yes it did improve some symptoms but I know I still have symptoms and could be better than this.
I was just about to try and get my GP (who by the way is hypothoyrid herself) on side and see if she would prescribe Armour, obviously not now. I guess I either continue on with half a life on levo or pay to import Armour. I know its expensive but feel I have no choice. I’ve got to feel better than I do.
One of the problems with this illness is it takes the fight out of you. The brain fog and the lack of energy makes it difficult to stand up and voice an opinion.
I really can’t understand the medical profession in the UK if you could make your patients fully better wouldn’t you want to. Why are we being dictated to like this.
O'Ross said:
Feb 21, 09 at 8:00 pmInvestigate Codex Alimentarius, a world-wide scheme to take our vitamins, mins, herbs away from us, leaving us only with Big Pharma. Couple that with GMO’d foods, and you have a population of sick people, too ill to fight back. Communicate with everyone who will listen. We still out-number the bastards. –O’Ross
Theresa Roberts said:
Feb 22, 09 at 4:52 amThis is in response to Mandy Waggott’s plea for petitions, etc. There is an online petition site (advocating green, earth-friendly and healthy living ideals) called Care2. I believe that anybody with a worthwhile cause can start a petition there (our local, Saint John, NB, Canada Animal Rescue League recently won a petition challenge as “Best Shelter in America”!). It is certainly worth a try. Some of these petitions get overwhelming responses. Good Luck!
I still have to explain to my doctor each six months that my TSH (very suppressed, while actual free T4 and T3 are well in range) does not give a good representation of my thyroid status. I don’t expect he’ll ever consider prescribing anything to support my adrenals (as controversial as getting correct hypothyroid treatment, for some reason). I’ve also recently begun to treat my very depleted female hormones, and they do not want anything to do with bio-identicals either. Visits to the doctor are very frustrating and demoralizing! Thankfully I have found a great female compounding pharmacist in my area who will intervene for me when necessary.
Best of luck to you all in the UK (from a thyroid patient in Canada). I hope that your country’s thyroid protocol does not make its way across the ocean to this country.
Nick said:
Feb 22, 09 at 9:46 amIt’s time to fight – this is one step too far! We need to organise and fight this – don’t lose hope!
Dominica said:
Feb 22, 09 at 10:23 pmHas anyone started a petition at http://petitions.number10.gov.uk/? It is for UK citizens and permanent residents.
Chance said:
Feb 23, 09 at 1:03 pmI have recently been diagnosed with hashimotos and have been doing extensive reading on the drugs and treatment of the disease.
I just found information today a synthetic pill called Thyrolar that may be of interest to the UK people that no longer have access to the natural drug Armour. I found the name of this pill from a positive posting saying that it was helpful to the person vs. just Synthroid on http://caloriecount.about.com/anybody-know-anything-cytomel-ft34386. I have not used this drug or know anyone who has, but thought it may be helpful, as it has synthetic T4 AND T3 in a single pill.
http://www.thyrolar.com/
I’m still working on finding a doctor that will prescribe Armour here in the states so I may try the natural drug instead of just Synthroid – to see if it’ll help my horrendously worsening memory – don’t be suprised if I post this again later, LOL
. Good luck to everyone!
Dawn Wood said:
Feb 25, 09 at 7:26 ama number of people have reported having their armour prescripition filled by their dr this week, so far no one else has said they have been refused it
Dawn Wood said:
Feb 25, 09 at 9:33 ama number of people have reported having their armour prescription filled by their dr this week, so far no one else has said they have been refused it
joanne schwab said:
Feb 28, 09 at 1:58 amI didn’t see on your site the situation that happened with Eltroxin in New Zealand (and now 150 pages on Mary Shomon site http://www.thyroid.about.com I found it as I was having same symptoms it turns out they changed the formula of Eltroxin moving it from Canada (where I am) to Germany (I think mayb they are now manufacturing in China) we all got deathly sick!!!!!… Could you not show all that evidence to the Gov’t and say you want to ban something ban Eltroxin Not Armour! In Canada they say anything over 5 is hypo..but the U.S. (where I’m from) the endro assoc has lowered it to anything over 3… But still many doctors don’t even know that or care..Just found your web site, just spent 2 hours reading. I was borderline years ago and I had to fight to have the doctors treat me…Synthroid worked good for a few years then I started falling apart, like you say with the adrenal and taking it and having the same symptoms actually worse!…after seeing the Eltroxin scandel, I just stopped, I went on althernative health supplements, vitamins (lots of exercise) and I feel better then I have in years, I was always on synthroid then I found out synthroid was made in porto rico and wanted one made in Canada, so I switched (not feeling food on synthroid anyway) I switched to Eltroxin then I became even worse. I hope you can fight this plan of the Gov’t to ruin so many lives…There is power in numbers eh!
Thanks for your excellent site. It’s refreshing to hear you speaking so directly and saying about the medical all the things most of us feel. JoAnne, Toronto, Canada
Cathy Poland said:
Mar 14, 09 at 7:57 pmI’m extremely sorry to hear about the ban in UK. This is a disaster. I live in Montreal, Canada. I was put on Synthroid about 7 years ago when my TSH was 5.3. Later, after little benefit a friend advised me to take dessicated thyroid. My husband is a GP and was amazed at the benefits from Thyroid Hormone (as it’s called in Canada). He’s continued to prescribe it to me now for about seven years. Last night I attended a talk in Montreal by Dr. Mark Starr from USA who treats patients with dessicated thyroid, iodine, etc. He’s re-done his book adding info on iodine and has suggested I start taking iodine to make the dessicated work better. His book’s called Hypothyroidism Type 2. There were people in the audience asking how to find a doctor who will prescribe Thyroid Hormone. Only one naturopath was named in Montreal. I’ve been hoping to find support from a knowledgeble doctor for years. Unfortunately it seems one has to do one’s own research. Dr. Peatfield, in UK also has an book called, ‘Your Thyroid and how to keep it healthy’. He says we must learn as much if not more about this than doctors and treat ourselves. May sanity prevail!
Diana Glasford said:
May 12, 09 at 11:48 amI live in Texas, USA: My thyroid was removed due to cancer twelve years ago. Until I switched to Armour about 4 years ago- I could never get adjusted- lost months of my life every year. Now, I have a hard time getting my prescription. I had to change to seven 30mg tablets daily and now my concern is that we are going socialist and I will not be able to get the Armour at all. I had heart attack symptoms on the Synthroid when it was high enough to keep me from brain fog, muscle pain, and depression. If I knew what I do now, I would have kept half my thyroid.
Anika said:
May 30, 09 at 4:18 pmYOU DO NOT WANT SOCIAL HEALTH CARE IN THE US! IT IS A NIGHTMARE!!!The whole the grass is greener thing..NO. You do NOT want it. Trust those of us who are living in it.
These people are criminals, and we should revolt.
It is SHOCKING that a doctor would change what is working when someone has no symptoms to conform to TSH lab tests. Whatever happened to the hippocratic oath, to harm no person??????
JEANNE said:
Sep 25, 09 at 1:03 pmIT IS ALSO HAPPENING IN THE USA. PHARMACIES HAVE BACK ORDER OF AMOUR THYROID BUT CAN NOT GET IT. COULD IT BE BECAUSE FORREST PHARMACEUTICALS IS MAKING THYROLAR?
(from Janie: Thyrolar is on backorder, too. What’s going on is more related to demand being greater than supply).
Jane said:
Sep 26, 09 at 1:00 amThis is very serious. Read Codex Alimentarius. The new approved vitamin (Appendix II)list is coming into force in the UK December 31st. Read Agenda 21.
I am in the UK our NHS is a closed shop nothing can be questioned. My GP is a very sad man he cannot heal his patients. I have 20 Armour tablets left – then what? I cannot even be diagnosed as hypothyroid as our range is so wide. Left to live a life on the sofa in fog….
US do not alow Codex to take away your civil liberties.You do not want the NHS. Don’t let the posturing on Iran divert your attention…