Email to Dr Anthony Toft

Hi All

Earlier I wrote an email to Dr Anthony Toft regarding the impending ban on t3 prescribing and the current failings of thyroid testing and treatment. I also asked what he would suggest as a way forward for change.

He very kindly replied within the hour ! ! and this was his response

Thank you for your kind message. I am pleased to hear of your significant improvement. The problem is that of a sole supplier of Liothyronine in the UK, charging exorbitant sums for a medication which costs pennies to make and can be obtained for a few euros in Italy and Greece. The anecdotal evidence for using adjunctive Liothyronine is strong among those who see large numbers of patients. If the hormone were cheap there would be no problem in prescribing it. We have the ludicrous situation of it being easier to ban its prescription in the NHS rather than address the basic issue. I have written an article about the treatment of hypothyroidism which I will try to get published to raise the profile of the current very unsatisfactory management of thyroid failure as practice is dominated by guidelines. I am leaving on holiday in a few hours and will be unavailable until .....

Good to hear his views and that he has an article hopefully soon to be published which can highlight our plight

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oldestnewest

Well done for thinking of contacting him, and I think that was pretty good of him to get back so quickly, given he's going on hols.

BTW wonderful to hear you're doing well on T3 😊.

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Many thanks SolsticeSS, yep definitely getting there, I even had a random feeling of happiness the other day, quite a new concept for me lol ! Definitely down to the t3

I know I was stunned he replied so quickly and as you say just before his hols !

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What a very good response, well done for emailing him and obtaining it! Let's hope his article is well received and also that the NHS begin to invite tenders for the sourcing of drugs and medications - most other government departments and businesses do this.

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He has "the name and the reputation" so he will get published, even if he writes complete nonsense. I'm not a fan of Dr Toft as he used to be stuck in his T4-only position but if he is singing a different tune now and he is FINALLY listening to what we are saying we can use his influence to help our cause.

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That's how I feel Kitten1978 . If it is a case of him changing his opinion due to now being in private practice, that is a shame. Although I believe the pulse article and book were written before he went private.

I chose to write to him because it was his appearance on 'trust me I'm a doctor' that started my journey of discovery, which now means I'm feeling better. That combined with him being relatively high profile and his reputation due to the positions he's held. So hopefully yes its someone influential on our side.

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His guidly conscience is his own problem to deal with. We need people with high profiles on our side and the fact that he is "a convert" my work to our advantage. It would be good if he ever was brave enough to write about his own professional journey, the evolution of his beliefs and elaborated on what led to him changing his mind ;) Thank you for emailing him!!!!

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Kitti1 He prescribed 20mcg of T3 for me while he was still an NHS consultant at Edinburgh Royal Infirmary.

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I agree Kitten1978, I used not to think much of him either, but it's so encouraging to know that he's changed his mind and will hopefully be listened to by others. My own GP told me recently how badly thyroid patients are diagnosed and treated, using the wrong tests and the wrong meds (as if I didn't already know!) and I wondered where he'd got his information from and what he'd been reading to know all this and even talk to me about it. Word is definitely getting out there!

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Can I have the name of that wonderful doc ? Seriously though Ive got quite a good one. I'm educating her but at least she's prepared to listen. Could you quiz him on why he is saying that and like you said where he got his info from ? I would be fascinated to know

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I was also interested in where he had all that info from...not from the mainsteam medical training I bet...

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Kitten1978 I think Dr Toft keeps up-to-date with research and what is going on with patients though I did not actually ask him about that. After I saw him, I sent the latest BTA response to the NICE consultation and he replied thanking me and said 'At last some positive action.'

I did suggest to him that perhaps he should apply to be on the committee and sent him the link to that. Just think what someone like him could do if he decided to set the cat among the pigeons?

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Dear Hyburn,

Thank you for trying to encourage Dr Toft to support very much needed improvement in the standards of thyroid disease treatment in the UK. I just hope he won't sit on the fence and ALSO takes some positive action. Making sure that patients are getting the best possible treatment is doctors' responsibilty after all. I'll keep all my limbs crossed your persuasive skills and gentle encouragement will succeed ;) Take care

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I am not a gently encouraging type. More forceful.

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I'M GLAD TO HEAR IT ;)

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He has changed his mind Kitti.

He put me on 20 mcg T3 before he retired from the NHS in 2009. Saw him privately last week & he increased this to 40 mcg & halved Eltroxin to 100 mcg. He was prepared to accept my DIO2 genetic test result though said RT3 was 'inert' & of no consequence. I also have high RT3. He has written to my GP saying I am one of those patients who needs T3 as I don't convert well. I think I need to switch to T3 only but this is a step towards that so am hopeful that I am heading that way. He said he was unsure of the significance of my practically non existent TSH.

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Hello

I found your post amongst old ones and wanted to check if you had posted this yesterday. Would you recommend me to visit him? I have been on T3 for 18 moths but am having problems re high BP and low heart rate and my GP hasn't a clue!

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Yes I did post this yesterday. How much T3 are you on? If too much T3 your heart would be racing not slow.

I had previously seen him on the NHS before he retired and he had given me 20 mcg of T3. In 2015 I had the DIO2 gene test done which shows I have inherited the defect from one parent (though both have thyroid disease). I also have high RT3. Did thyroid ultravit panel with MediChecks last month plus selenium and magnesium. Took these results plus my NHS ones going back to 2015. Both show my FT4 low end normal and MediChecks show T3 low end normal. My TSH is non existent. He agreed I did not seem to convert well and doubled my dose of T3. I've to get tests done again in 8 weeks and see him again. I know I need to switch to only T3 but need to do this gradually so I can get the meds on the NHS. I also have HBP but not low heart rate (as far as I know). My Vit D was very low so am on NHS prescribed supplements for this. My NHS endo is also referring me for endoscopy for coeliac disease which runs in my family as I was diagnosed with IBS more than 30 years ago and there is clearly something wrong with my absorption as I am deficient in other vits and minerals too. I want to rule this in or out so I know what I am dealing with as GP did coeliac blood test and when it came back normal refused to do further tests despite guidelines which said they should.

I think what swung it for me was the DIO2 genetic test which confirmed I don't convert T4 to T3 efficiently. This was done by Genova Diagnostics. If you get it through the Thyroid UK charity there is a discount.

I don't know whether he would be able to help you but if you arm yourself with tests and take copies, he might be able to. It is £200 for the first appointment and £120 thereafter. The Spire Hospital is next door to Edinburgh Zoo.

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I am on 56 1/4 at present. I am gradually increasing the T3 as my heart rate is so low but this isn't the first time of stopping and then restarting and nothing seems to move it.

everything was progressing well HR 80s BP fine until I went to Crete in May when HR rate dropped and BP rose.Even Dr P can't understand why.

thanks for all your info

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WOw that was an amazing reply. I thought he was our arch enemy a while back. I want to kiss him. Well done for email. We are winning.

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We are going to if I've got anything to do with it mandyjane . Grasping baton firmly as we speak 👍

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My issue has not been so much about T3 although that comes into it but being undiagnosed because of tsh levels. I am wondering whether to email him about that or wait for his article. Anecdotal evidence he says well thats us. I think I will try to email him. Maybe wait a couple of weeks.

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That's very much my main issue mandyjane Diagnosed 30 years ago and defo been under medicated for most if not all of that time. Ive spent 20 years of my life taking pro plus to be able to go to work and just as many years on n off antids. I feel ive been robbed of my life because of the idiotic testing and treatment matrix.

I did mention it in equal measures in my email to him. I think by the sounds of it his article will address that also.

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I'll pm you his email address tomorrow

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Thank you Kitti. I wonder what has softened him. Looking back at previous posts he has been a real pain in the backside.

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I think he has flip flopped back & forth a little over the years. As long as he's leaning our way now that's the main thing.

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I would also like Dr Toft's email address if thats ok Kitti1 - I saw endo Dec 16 & advised T3/T4 combo, which currently my GP supports 😊 I am feeling so much better after 11 years of struggle & popping pain killers antiD's anti inflams & PPI's - not to mention the fortune its cost my hubby's private health cover company! Unfortunately it has come too late to save my 33 year career in nursing, which I had to reduce hours down to 18 weekly 4 years ago & have not worked for nearly a year! So much loss due to being inadequately treated! Please would you send it to me via private message? Many thanks 😊

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Yes the diagnosis issue is VERY important!

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I think Dr T is of an age where he was trained on clinical symptoms and before levo became the replacement for NDT.

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I think he is in his late 60s.

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What a wonderful response and thank you for taking the time to write to him.

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He certainly seems to be a man of generous spirit. Not a problem re emailing. I wasn't sure if I'd get a response directly from him, as his email address wasn't hard to get hold of ( unlike Michael Mosley's ! ) I expected a secretary response probably. So extra nice to get such a swift personal reply.

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Thats great news, well done for emailing him, it's brill he took the time to email you back personally and so quickly.look forward to seeing his article in print.

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Kitti1

Did you ever find Mosley's email? All

I managed was one of those awful contact me panes. I tried twittering on his bit a few times but never got a response of any kind probably all done by an assistant. You'd think he'd get his teeth into the scandal that is thyroid medicine it has the makings of a superbly shocking TV series to drive up viewer numbers - mad women locked up in the attic and incarcerated in mental asylums, gruesome and horrible way to die, poor greyhounds dreadfully experimented upon, thyroid gland transplantation, Chinese well ahead of the game, the marvel of NDT, modern advances = backwards step in treatment and alleviation of symptoms, T3 scandal, big pharma lies about NDT to push profits from levothyroxine. Millions left feeling ill unable to work and dying of related untreated conditions not to mention the scandalous mental illness myth and completely unnecessary antidepressant pedalling. Úk completely out of touch with the rest of the world in diagnosis and when to treat the condition. Modern day institutionalised abuse of women by men - it has every thing needed for compelling viewing.....

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Hi kitti

Glad to hear you sounding chipper!!!

I've been seeing my gp as not seeing my endo until September. My gp wrote to my endo saying they had increased my levo dose and I was having a t3 test done privately.

I got a copy of the letter the endo wrote back to the gp today. Basically the endo saying I was an idiot for wasting my money testing my t3. That the BES (British endo society) do not agree that t3 is required expect in very rare and exceptional circumstances.

The endo then went on to say was I taking my tablets at optimum time! I've been on the bloody things for year and she asks that question now!!!

We need Dr Anthony Toft !!!!! We need someone to fight our corner!!!

We need the gp's, endo and NHS to stop making excuses !!!

Oooohhh I could rant for hours!!!!

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That was a good response. I do hope that doctors will listen to him when he produces his paper and he doesn't get shouted down.

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He is considered an expert so I think his views will count and could be influential.

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Well done for wiriting. i think his response confirms what I have been saying all along it is down to COST. The NHS are thinking of ruining people's health because of cost.

I hope they very strongly start a major price war with the drug companies, it would be so easy for them to do and should have been done years ago, after all they have been prescribing paracetamol for years at £42 a pop!

They simply do not know how to mange their budget. They receive millions so just spend it willy nilly. They act like a millionaire and just buy the first thing that comes to hand, they need to shop around! They then stick with that supplier! I never have understood this! Having worked in the NHS I have seen the waste first hand and I always found it incredulous. Unless this radically changes, the NHS will forever be skint and will be looking for drugs to drop to the dettriment of health. I wonder if they are still spending £10 for a stapler!

The public need to wake up too. They can save the NHS money, missed appointments, stockpiling meds, continuing to get the meds they do not need etc Yes, to these people they may think 'how can it possibly affect the NHS, it is only a couple of quid' to you yes, but times that up by the amount of people who feel the same way and it results in millions of lost dead money! If a medication that could make you better is being threatened with withdrawal because the NHs cannot afford to prescribe, you better believe your conscious should not let you waste NHS resources.

The current way hypothyroidism is diagnosed is way off the mark but, again, I fear this is not being changed to the more holisitic diagnosis pathway (symtpoms, temp, pusle etc, ie the old way of diagnosing and widely found privately) due to COST. If they went back to the old way of diagnosing they would have to be treating thousands more people. To keep it as it is keeps many people ill but saves them money. I really think they know this and surely someone, somewhere, is not sleeping well at night.

I also find it interesting that once diagnosed and on treatment you are only considered well treated if your blood results are better than what it takes to get a diagnosis! To me, if a person has symtpoms and their blood results are not in that 'sweet' spot, they should be diagnosed! I am not sure what it is but, lets say if you are in treatment they want your TSH to be less than 2, I believe all people, treated or not should be diagnosed if their TSH is over 2. if, without a diagnosis you are deemed normal with a TSH up to 5, then why are you not kept at this level on treatment!? None of it makes sense, apart from using these figures not to diagnose and therefor save money.

I believe they know they are failing many people. It is cost related and they will fight to not change it.

The people running the budgets (not the government who gives the money) need to take proper control of their budgets and look around for better prices and use their status to get better deals. The NHS needs to grow some and lay down the rules to the drug companies, get them competing. i am sure prices would drop if the people buying their products (ie health providers) stopped/or threatened to stop buying them!

Right, must get to work lol

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Here Here

Someone definitely needs to grow some

I'm just reading a very interesting piece by TPA. amongst other interesting and very valid points made within the piece is this

" Despite studies bringing into question the safety and effectiveness of L-T4 monotherapy for a large minority of patients suffering continuing symptoms of hypothyroidism and confirmed harm the BTA encourages L-T4 as the only preferable approach for all who have been diagnosed with hypothyroidism. This is an incorrect analysis. There is mounting evidence which suggests that conventional ( allopathic ) endocrinologists, drug companies and the BTA profit financially from their mutual support thus depriving some thyroid patients of good health and well being."

Its quite scary what we are up against.

Although surely someone can make the government see that the current testing and treatment matrix is not just costing thousands of individuals a decent quality of life but also costing the country an unnecessary fortune. for all the medications prescribed for all the symptoms and subsequent complications of under treated / diagnosed hypothyroidism. In addition to the welfare costs of a section of society unable to work because someone is getting a fat back pocket from their continued compliance with the profiteering of the drug companies. How much exactly is the government paying out to people who are too sick to work and how much taxes are not being paid by people like myself that would be so much happier with a rewarding career rather than an existence on benefits.

tpauk.com/main/article/tpa-...

You need to click on the - read the whole rebuttal lower rin the text to find my extract

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I hope someone can but who???

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Kitti1

Have you posted the link to Sheila's rebuttal on the T3 Action Facebook group page? It would be useful to post it there ;)

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Yes it is a good piece isn't it. Me do a link on T3 Facebook ? I'm afraid I struggle writing a post ! I can't get my head round how Facebook works. I cant ever find what I've posted on a second visit or find replies. I just seen to have a mental block where facebooks concerned 😂

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Would you mind if I post it there, please? It's a good rebuttal ;)

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Not at all !

I've sent you an email by the way with all that info in 👍

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O.K. I'll have a look at it tomorrow morning. I'm off to a pharmacy to buy more ...drugs ;(( and then some quality time with my nephew ;))

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When I started on t3 5 or 6 years ago the price for 28 tablets was around £28 but they still weren't keen to prescribe.

Jo xx

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I agree that this is NOT only about cost, or even mainly. Its about the whole thing, All the extra money the drug companies can make from all the symptoms people continue to live with and doctors prescribe for.

Bulletin 121 was released in July 2015 ( I think ) by the BTA, which reiterated the Royal College of Physicians policy statement drawn up ( by a panel of experts ! ) in 2011. The statement basically recommends monotherapy for the treatment of hypo.

thyroiduk.org.uk/tuk/guidel...

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I kind of does boil down to money again! The drug companies are making loads so want to keep it that way, and the NHS are losing so want to keep it that way! lol

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That's an excellent response. I believe that throughout his career he has prescribed T3 to some patients to add to their T4.

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Yes he has. I am one of them. He was my NHS endo and prescribed 20mcg of T3 for me while at Edinburgh Royal Infirmary but he wouldn't increase the dose. He has recently though to 40mcg.

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Why cannot the BTA permit the prescription of the 'other T3's available in the UK on 'named patient basis' as is permitted. rather than stopping T3 altogether for patients left in desperate straits.

thyroiduk.org.uk/tuk/treatm...

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Who knows ?

I suspect the motives to give T3 the boot completely may be quite sinister, it seems to begger belief in this day and age. But trying to fathom an alternative motive leaves me at a loss. .

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I love this forum 😊 There are so many times that I search for something and get hooked onto a thread and forget my original search... bear with ....this is related..... I think😞.

Well, not too many weeks ago someone, I'm sure it was a regular member, posted a link about how it's almost impossible to change the mindset of people and why, and this last reply Kitti1 made me try to find it.

So in my quest to find it I got distracted with this about T3 and as many on here know, this is another round on the roundabout topic.

It reinforces the thinking that the medics ( and big pharma) want T3 out of the picture for good. And our current episode seems to be another nail in the coffin.

What's also interesting is that it's written by Jerome ...... could that be you Jeromexx ?

dailymail.co.uk/health/arti...

Found it within this thread of 3 years back.

healthunlocked.com/thyroidu...

On with my search for that post about changing minds 😁

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I completely know what you mean re getting side tracked and ending up on here for hours on end lol Good isn't it

That article is very interesting, possible but seems unlikely to be just a coincidence.

Hope you find what your looking for

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Here we go... what got me thinking about this is was your mentioning of the motives to stop T3. Well, rereading this makes me wonder... it might not be anything to do with a motive...

posted by cwill theoatmeal.com/comics/believe

healthunlocked.com/thyroidu...

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Well Dr toft seems to have changed his mind set because he has been a pain in the bum for us for years in some ways. I would say that you can change minds but doing so is most effective when peoples minds are changed by a change in attitude of the prevailing culture. Like a shoal of fish changing direction rather than one or two swimming in what would be perceived as the wrong direction.

For example 30 years ago or more a claim of childhood sexual abuse by an adult was considered a delusion by nearly all psychaitrists. People were locked away for a lifetime sometimes for making such a claim. Then some Drs began to question this attitude, there were less hospital beds so people were able to talk more freely to freinds about their memorys. Then some well know people spoke publically and suddenlly there was a big change in direction. A doctor would now be a laughing stock for suggesting such a disclosure was delusional.

I think we are at a point when significant numbers hopefully including Dr Toft are turning in the same direction as us.

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I agree that nowadays people are more and more free thinking. Aside from abuse (of all types) there is of course religion, sexuality, PTSD, domestic violence and probably more. In general people are more prepared to stand up and put their heads above the parapet. However, that seems to be for us ordinary mortals. For some reason the 'professionals' and those with big egos or who have been put on a pedestal, seem very fixed in their thinking and almost unable to say things have changed, thinking has moved on, or we were wrong.

But I don't see any point in putting some one down *once* they have changed their thinking aka Dr Toft. How does that help? So yes it is a wonderful thing he has changed, now he needs to help change the thinking of others, so, in my mind, positive support will be more effective in this aim.

Re the attachment - Even when facts are *proved* if we are entrenched in our beliefs, changing for some seems to be hard to do.

Let's hope his report makes waves 😊 and he has a tsunami of support on this forum.

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mandyjane presumably Dr T was leaving patients ill when working in the NHS as he wasn't prescribing anything other than Thyroxine. I'm glad I wasn't a patient of his cos I reckon I'd be flippin' furious that he's done a complete volte-face when it involves money, how does he live with himself?

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Whilst our GPs continue to dole out antidepressants .... and no doubt sleep very well too 🙄

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Fair point SolsticeSS but they're generalists after all and the surgery receive £1,600 for every new diagnosis of depression.

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WHAT ? Seriously cinnamon_girl ? Is that all surgeries, all surgeries receive that for each new diagnosis ?

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Kitti1 yes, GPs receive QoF points for managing particular conditions. Hypothyroidism was removed from the list a few years ago. Then there's the follow-up consult for depression which earns more QoF points.

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OMG ! That's shocking ! Especially if hypo has been taken off, a patient presents with symptoms, including depression, doc thinks blood test ? Ner, here have some anti-D's !

What a stupid system ! Any idea why hypo was removed ?

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Page 83:

nhsemployers.org/~/media/Em...

Scroll down to QoF points:

practiceindex.co.uk/gp/blog...

Sorry, don't know why hypo was removed but I think it earned a very low number of points. Crazy when you think that Levothyroxine is one of the top 5 most commonly prescribed meds in the UK.

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I guess in principle its a good system. I just wish the doctor that missed my dads heart problem symptoms had taken more notice of this. As an ex smoker ( not COPD ) they just kept changing his inhalers rather than sending him for tests on his heart. For a man of general good health, one of those people who never got ill with anything, to die at the age of 74 was wrong. By the time he started having heart attacks, at least 18 months after the start if his symptoms, he was dreamed to weak for the op.

Makes many blood boil !

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So £1600 for a 10 minute slot and the cost of a prescription. Nice little earner (shock horror gob open emoji).

Yes. I take your point, but to be fair, if we are going to slate and slam every endo or medi that turns to see the light, and constantly remind ourselves of what they've done wrong before, how will that encourage any of our eminent medics to do the same? Is that not a different form of what the medics do to the likes of Kendrick or the High fat diet Doc (forget his name) i.e find something to discredit them?

Money. like it or not, sadly, does make the world go round.

I know that some on here might say, ok for you SolsticeSS you've not been ill for decades and had your life ruined. Well, actually all of us have our own story, and mine doesn't have to match others' on a like for like basis to be significant. But that's not my point.

If we want to change thinking we surely must let go of what's been before. Thankfully my hubby now understands much of the nuances of thyroid condition, but he didn't always. Like many I felt let down that he didn't believe me. Now that he does, I don't constantly peck at him, reminding him of the time he didn't. Where would that get me?

I'll now await the onslaught against this view!

Edit - This link to Henry Marsh gives an insight to the frustrations of working within the NHS, and whilst he has done some miraculously brave stuff, that has come off, he too admits to mistakes and the constraints of working in the NHS.

"Apparently Mr Marsh's decision to retire has been hastened by the threat of disciplinary action, at the hands of an NHS manager, for wearing a wristwatch on his rounds. There is no evidence of the risk of infection being infinitesimally increased by the wearing of such. What a bloody loss. And what a bloody, splendid book"

theguardian.com/books/2014/...

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cinnamon_girl I got T3 from Dr Toft when he was my NHS endo.

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I seen dr toft. I feel his views(or public ones) have changed since becoming totally private. People will only see him if he can improve them. I found him to be lovely. However my gp still ignored his opinion!! And refused to prescribe t3

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Cubby81 Can you complain to the senior partner or someone in the NHS hierarchy? How can a GP refuse to do what a more qualified and eminent doctor suggests? When Dr Toft wrote to my GP saying he wanted my T3 doubled I got a phone call from the practice to say my prescription was waiting on me.

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I think it is interesting that Dr Vanderproof has also gone private. Did he do so because he wanted more freedom in his treatment protocals. Having read his twitter account though it doesnt appear that way but he must realsie he needs the support of forums like ours to have a really successful business. I much prefer private health care to NHS as private health care the doctor is working for the patient not some bloody government. I would like to be given a yearly budget for my health for me to decide how to spend with perhaps the NHS only providing emergency treatment.

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Vanderproof? I think you mean Vanderpump?

markvanderpump.co.uk/

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Thank you Kitti1 ;)

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Hi all, I'm a newbie to this site. I was diagnosed with Graves' disease some years ago but during pregnancy it seemed to disappear, then reappear after the birth of my child then disappeared again. Three years down the line I've been feeling awful for the last 6 months. My THS levels are coming back normal, I asked my GP to carry out T3 and T4 tests, they said the labs wouldn't do it. I asked to be referred back to the endo clinic at ninewells hospital, this apparently could take till October. I am lucky enough to have a private route through my husbands work, and I am going to be calling tomorrow to make an appointment with Dr Toft. Can anyone advise if they think he is my best option? I'm seeing he seems to have changed his tune of late on the simple THS tests, I don't want to travel all the way from dundee to Edinburgh and feel let down when I could just wait till October and see prof lees at ninewells. Thanking you in advance for any comments

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Oooohhh this sounds just like me. How did you get on, going private xx

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