Anyone checked out 'British Thyroid Association... - Thyroid UK

Thyroid UK
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Anyone checked out 'British Thyroid Association website'?OMG cant believe how rubbish it is!


I just checked a link to facebook page for it(as my sis mentioned it) and am really p****d off with its seemingly v 'narrow minded' view of thyroid disease.(this is at 'first glance')but theres an article saying that there is no such thing as adrenal fatigue!!(i mean,even the W.H.O. has now recognized adrenal fatigue as an illness..)it alsoxsays taking adrenal supplements(glandulars etc)can leave ur adrenals unable to produce their own hormone,after...and that it can mask the 'real' cause of symptoms(cancer ,depress etc).

It also seems to expound thyroxine as the only 'cure' for hypothyroid illness and also for Hashis!!it alsi comes up with 'no results' when i searched for NDT!!(and it rubbishes any alternative herbs etc that could help thyroid.)I think we should bombard this ignorant organization with some of our experiences and intelligent research!!(on facebook,email.)Come on;we need to fight this ignorance!I cant believe that this;one of the main sources of info for people with thyroid illness is feeding such myths.aargh!!makes me angry...(people like my sister will read this crap and have a v poor understanding of how complex thyroid illness really is...)what hope is there if we dont act on ignorance about thyroid illness?Hypothyroidist Activists;thats what we should be(lol)...but seriously,nothing else will change this sordid situation.I know a lot of u members on here can write much better than i can(more articulate and knowlegable.)...please do be activists for us all!

35 Replies

Royal Collage of Physicians and BTA go hand in hand, British Thyroid Foundation is just as bad. I am in on doing an (educational)email action but dont quite know how. Makes me furious as well


and this is exactly why so many of us post on here as well as U.S. sites, why so many of us are suffering so much so needlessly for far too long and why the medical profession has so badly let us down, and why new folks join every week it seems--is this mostly a woman's issue and perhaps if more men were suffering would things then change quickly, just wondering how it is this obvious anti-hippocratic oath regime can go on for so long, do other european countries have such ignorance and undertreatment from their gp's and endo's perhaps a large- class action suit- would make a concrete change.. any female doctors out there ready to take us on and form some sort of treatment group or... some sort of definitive action must be taken--perhaps a claim for change from the european court of ........

Some European countries treat Thyroid disease and distinction much better. My friend went to Germany, got a standard full thyroid assessment including testing the full range of thyroid hormones, vitamin and mineral levels and found that she had an iodine deficiency for which she now supplements and is fine. A doctor in the uk told her she would not get a thorough assessment here in the uk. I agree this state of affairs must change. I'm mounting a one woman campaign in my bit of the world but would be better joined up. Have you contacted your local Healthwatch? Local Healthwatch has to forward data to the CQC and also to Healthwatch England so that any trends can be picked up. If all of us flooded all our local healthwatches with our experiences, sent copies to Healthwatch England, to the CQC and our MP we might get noticed. You will find your local Healthwatch on the internet.

I have not been on that site. But I had two small cysts removed from my thyroid gland in my twenties and have been taking Eltroxin for more than 40 years until my last prescription when I discovered that it in short supply. I believe that it is still in production but because of the low value of sterling the producers will find it more profitable to export it thus causing a shortage here. We have instigated an investigation by Parliament, for according to the licensing laws patients must come first before profits. The thyroid hormone affects the whole of our metabolism and any interference with the balance can send us awry. However, I agree with you about researching alternative methods of promoting good health and, initially, I was taking 200mgs per day but with a more positive and healthier life style my thyroid began to function again and the dose was reduced to 100mgs. For over 20 years I have been practising Chi Keung and Tai Chi and looking at Chinese medicine, for I believe that the Chinese know ways that we do not have in the West. I have since had four children and gained an LL.B. and an M.A. and feel in better health than when I was younger. If you keep a good positive attitude and follow your instincts every organ in your body will function well.

Good luck in your searches

I was reading some stuff on the "Society for Endicrinology" website a few days ago. Same story. It seems to me that they are all running scared and have been for a few years. If your Blood Pressure can stand it, take a look at this It's the booklet for a course they ran 6 years ago. Start by looking at the list of "supporters".

If you scroll down to p47 and read onwards you will want to scream in frustration.

The thing that makes me think they are running scared is this document: It includes this stunning statement:

"Importantly, individuals who self-medicate in this way may delay detection of the

real cause of their symptoms................Precious

time might be wasted while the real underlying disease progresses."

It's taken me 37 years to diagnose and treat myself. I wonder how much more "precious time" I'm wasting????

cloud1 in reply to rosetrees

37 years!sorry to hear that..i been suffering past 14yrs(since ny first preg;when i became Hypo/hashis..)untreated/undiagnosed.Thing is ,after a preg loss ,a few months ago,my health has deteriorated further..and esp now w the change of season.i honestly dont know if i will make it through this winter.Could u PM me details of ur self-treatment regime;if u also have hypo/hashis(and reputable websites for buying med from)possibly,please?I am just getting so ill that i will try anything...i mean i do research a bit ;( it all gets so complicated),but am so ill now that i just need to 'take the jump' and try some kind of self -med;i am thinking of NDT most likely option.

At the conference on Friday someone on my table said they were a member because 'you have to keep an eye on what the enemy is doing'. I was directed to this site when I first went underactive and it always has been rubbish. Most doctors are so scared of the drug companies and the BMA that they follow the BTA 'guidelines' to the letter for fear of being brought up on 'fitness to practice' charges!!!

If it was a private company churning out rubbish like the BTA they would be sued for misrepresentation!

They certainly wouldn't be doing much useful business on merit.

Not worth privatising though, as all the profit is already being sucked out by Pharma -keeping people marginally ill/well for life.

I absolutely agree. I am being bombarded by newsletters from this organisation who blame everything from the cat having kittens to meteorites striking Jupiter on the Thyroid. If you have this problem get it properly diagnosed, follow your doctor's instructions and medications if necessary and it will be brought under control... mine was. It is no harm to supplement this with a few (and I mean few) herbal remedies..i.e teas etc. Admin Edit There is more to life than T4 T3 TSH tests... imagine if you had to undergo chemo.

Hidden in reply to Petrosky

MY GP was so stupid that he didn't even recognise hypothyroidism when it was staring at him in the face! Do tell me what you would have done! Annoying my GP? You bet I have with formal complaints.

HiddenAdministrator in reply to Petrosky

Thank your for your opinion - it is great to hear that you have clearly moved on from where you were when you posted this Question...

If you are now feeling well, perhaps you would like to submit your story to our website...

In the meantime, your comment has been edited slightly to minimise offence.

Louise Warvill

Charity Secretary

Thyroid UK - here to support those people who do not get easily diagnosed, treated or recover quickly...

HiddenAdministrator in reply to Petrosky

Petrosky, If only it were that easy! It has taken me over 20 years, my entire savings and having to remortgage my house at the age of 65 to find the cause of my daughter's thyroid failure, and have had to go to the USA to do so. If we'd followed our doctor's instructions my daughter would probably now or soon be as dead as my husband from the same genetic disorder. You are VERY lucky, so please enjoy your new found life but do try to empathise with those of us who have struggled long and hard to find answers..... and yes I do blame the BTA and anyone to do with them who spend their sanctimonious lives in a self-satisfied little box and have wrecked the lives of me and my family as well as thousands of others across the UK.


PinkNinja in reply to Hidden

Well said! Thanks to these people I seem to have permanent issues due to the mistreatment of my thyroid. It is only through finding Thyroid UK that I have got my life back. Ignoring the BTA advice and listening to the lovely folks on here is the best thing I ever did. I'm sure T3 has literally saved my life but I'm sure the BTA would have me stop it.

Jane, if I were in your shoes I would be feeling very angry at the BTA and so on. Nobody should be expected to go through what you and your family have.


Carolyn x

HiddenAdministrator in reply to PinkNinja

Thank you Carolyn. It was through taking the advice of a lovely member on here and reading a book she recommended that we finally found our most unexpected breakthrough. Jane x x

Get it properly diagnosed - took my GP 18 months to stop saying I was depressed and only when I had a goitre did it occur to him it could be something else...and many here have struggled to get any diagnosis.

Follow your doctors instructions - "come back when you know what is wrong with you" was mine. I would be dead if I had followed your suggestions.

I have undergone chemo - understanding doctors, specialists, brilliant nurses, lots of support. Thyroid - ignorant specialist and the only support here.

Glad you got yours under control. I and many here would love this. I dont "bother" my GP any more, I just cannot face the condescension and ignorance.

And here is a quote from the NHS inform website: "Medically known as hypothyroidism, an underactive thyroid is not usually serious. It is easily treated" !

tegz in reply to SkinnerFan

Usual rubbish -keeping the masses passive and adoring.

Lets have another Olympic NHS Fest to celebrate!

[& Petro- what are you on??]

It is easily treated, usually - but only if ones GP acknowledges the need for treatment !

tegz in reply to Petronella

mmmm..Yes, The easy cases are easy to treat. What to do about the rest? Hmmmm...

TSH looks normal! Lets wait and see what falls off next...

PinkNinja in reply to Petronella

Lol! Definitely! But it is ALWAYS serious, especially when one's GP isn't acknowledging it. Anyone would think hypothyroidism was only one step up from a hangnail the way the 'establishment' talk about it!

I have read bta site before and ended up in tears with frustration. WHO ARE THESE PEOPLE? Who hide behind the bta, who set themselves up as Gods, not to be questioned ! on their Links, there is a WARNING (How Dare They!) " There are a number of websites with unhelpful and inaccurate information about thyroid disease which should be IGNORED" !!!

Without evidence, they are allowed to badmouth any thyroid website that They Do Not Approve of !!!

My gp is certainly running scared, despite witnessing the difference in my mental and physical health, energy and weight reduction in the past few months, since being treated by Dr. S. (wonderful man, have every confidence in him) she has now refused, (after consulting with her colleagues, who know as little about thyroid as she does) to continue to follow his request regarding my meds. The latest TSH test has 'TOLD' her to Reduce my dose and Not increase it, as is his advice. She is not going to Risk her career for me! She is Willing to hand my care over to Dr. S. completely, but I would then have to pay for private prescriptions (which as I lost my job, due to ill health) I cannot afford! I am being blackmailed !!! Why? should I be forced to PAY (not the £7.85 for an NHS prescription) but the full price of the medication, whatever that may be. It is wrong!

By the way, Not Once, has she asked about signs and symptom or felt my thyroid. I am at present back in bed, as my energy is gone and symptoms are returning. I will have to speak to Dr. S. to see what we can arrange.

I am sorry to have - gone off on one - but I've had twenty years of no treatment, and now I've had a taste of feeling better, I cannot and will not, go backwards to that living hell, that has cost me everything.

tegz in reply to evey

At least you're not alone on THIS site, Evey. 'Go off' on as many as you like!

It all rings so commonly true, sad to say.

I hope many more find alternative paths forward as the NHS is tied up in a Corporate Blind Side exercise on thyroid illness- apart from the few brave and caring exceptions known.


Yes indeedy. My local one had as regular speaker the consultant who originally fattened me up on Carbimazole and, when I complained, told me 'if you don't like it you can go on a diet'. Thankfully he retired some years ago. Local treatment hasn't improved much though. I have wondered once or twice whether to go along. The last time I contemplated it the topic was 'coping with hair loss'. Well! Not 'how to avoid hair loss', or 'alternative treatments to minimise hair loss'. Just 'coping with'. Not my kind of people. My blood pressure cannot stand interacting with them. That they have some kind of official status is ... ah, there goes the blood pressure.

I lost not only my health,and 'quality of life' to this untreated illness...i also lost my daughter;she was taken into foster care last year(at 12yrs of age)...due to my being too ill to look after her adequately;tjough i did to my best ability.I know i am 'slowly' but surely dying...thats what untreated hypothyroid does; kills u slowly...with cardiovascular disease and so much else that it can lead to...its a v serious illness.My thyroid-antibodies levels r sky-high and i have many signs/symptoms of hypothyroid(which have given me indescribable suffering);yet my docs have refuse to treat me, for years,..their pathetic and disastrous advice is to retest thyroid levels every 6mnths as i am 'likely to develop hypothyroid at some point'...iam likely to drop dead at sone point more like!!God,its so infuriating ;i try not think about it anymore (the docs arent worth it.dont know how he sleeps at nite;cos he does know its all hogwash..actually 'criminal')!Petronella,what planet have u been living on?Get a life?i've had my life all but destroyed cos docs wont diagnose/treat me for thyroid disease.If u r not here to support then get the hell lost(and get informed)...we dont come on here to be patronised;docs do that enough!

tegz in reply to cloud1

Hidden in reply to tegz

Thank you tegz, that's the one.

PinkNinja in reply to cloud1

I'm so sorry you are going through this. I hope you can get to see a doctor who can treat you. No one should be left to suffer like this and end up losing their children as a result! It breaks my heart reading this so I can't even imagine what it must be doing to you.


Carolyn x


cloud - what an incredibly sad post and am so sorry to read your story.

There is an medical organisation that helps people who've been failed by the NHS but I'm afraid that I can't remember its name. Hopefully somebody will know and put up a link.

Do you mean PALS (Patient and Advice Liaison Service)? If you do, then I'm not sure if the service still exists. Check out the website here :

Based on what it says there I am not sure what people are supposed to think. Does it exist or not?

tegz in reply to humanbean

I think you mean the group of GPs who take on difficult cases for free.

It's been posted on here before.

humanbean in reply to tegz

Thanks. I heard of them when they first set up but had completely forgotten about their existence!

Just been on to their FB sote and made my feelings known beneath the link to their pompous, arrogant statement. It reminds me of the old battle between wise women or witches as they were known, who really cared for people and used remedies that worked, against 'educated' Doctors who balanced humors and bled ill people to death. Nothing has changed has it. A while ago that stuff would have reduced me to helpless tears, but after T3 i am back to my feisty self.

Please, all of you, go on there and tell it like it is, don't let them get away with it.

hope this helps in some way,

endo's are the same everywhere, as mary knows...

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