Dr Toft counterblast to thyroid hormone replacement guidelines worth reading

[Hyburn]

Dr Toft speaks out on behalf of thyroid patients in the Journal of the Royal College of Physicians, Edinburgh 2017; 47: 307-9. Admits being involved in the guidelines 'was one of many errors of judgement in my long professional career'.

Says he is 'so concerned about the state of advice on the management of primary hypothyroidism’ that he is 'increasingly reluctant to suggest ablative therapy with iodine-131 or surgery in patients with Graves' disease, irrespective of age or number of recurrences of hyperthyroidism.'

rcpe.ac.uk/sites/default/fi...

[Clutter]

Cheers, Hyburn. Just read it and it's an excellent article. Just a shame he didn't point some of it out 20-30 years ago.

lynmynott fyi

[Hyburn in reply to Clutter]

Better late than never, I suppose. I am going to write something around it & mail it out to the Scottish media.

[Fruitandnutcase]

Wow!

[spongecat]

Thank you for this..........and thank you to Dr Toft. Bookmarked.

[Hidden in reply to spongecat]

Also just bookmarked article. Will print and add to my folder to bring to new endo next month. Thanks. irina

[shaws]

Thanks for posting. It's time someone spoke up and he is of the 'old school' and most have retired long ago and as they retired the incoming students haven't been trained adequately.

[Hyburn]

He has retired from the NHS but still consults privately at the Spire Hospital in Edinburgh.

[jimh111]

Thank-you for posting this, very interesting.

Toft's statement 'The previously high doses of LT4 would, by the law of mass action, have overcome any impaired D2 activity in affected patients.' is wrong. High doses of L-T4 leading to elevated fT4 levels with a suppressed TSH will reduce D2 activity. The associated increase in fT3 is due to increased D1 activity, which produces both T3 and reverse T3.

Whilst much of this commentary is welcome we should never forget how Dr Toft as President of the BTA persecuted Dr Skinner and other fine doctors. His abominable behaviour is not mitigated by this current dose of hypocrisy.

[Hyburn in reply to jimh111]

He does not currently favour T3 only treatment & told me RT3 is inert. He is also unhappy with suppressed TSH which I have (and have had for a long time) but did double my liothyronine & half my Eltroxin despite this. My next step is to argue for a trial of T3 only.

[jimh111 in reply to Hyburn]

inert is the wrong phrase. rT3 does not activate thyroid hormone action but does block the action of T3 by an unknown mechanism. It is not inert, if it were it would have no action or effects.

[Hyburn in reply to jimh111]

I agree with you on that. My understanding is that it blocks the T3 receptors.

[jimh111 in reply to Hyburn]

Vaguely remember seeing a paper which suggested it doesn't inhibit T3 by occupying receptors. The mechanism isn't understood.

[Breena in reply to Hyburn]

Item by Susy Cohen also says that rT3 can block cell receptors.

[marigold22 in reply to jimh111]

Dr Toft appears to be extremely hypocritical & arrogant. What's new with an intellectual involved with Thyroid

[Hyburn in reply to marigold22]

He does not come over that way in person & does listen & take on board what you tell him. That said he does have areas he apparently won’t countenance like T3 only treatment or NDT. Am wondering if it might be possible to change his mind about these.

[marigold22 in reply to Hyburn]

I have to admit that I don't know Dr Toft's history. I didn't know the fact that jimh111 stated above ...... "Whilst much of this commentary is welcome we should never forget how Dr Toft as President of the BTA persecuted Dr Skinner and other fine doctors. His abominable behaviour is not mitigated by this current dose of hypocrisy." If he doesn't countenance T3 only treatment he would be no good to me. How can a Thyroid Doctor not even contemplate that a patient has a conversion problem? That is precisely why I nearly died .... a Professor of Endocrinology (earning a vast salary) forced me to return to taking T4 when Dr P had already put me on T3. And Dr. P actually knew the reason why I needed T3 (he said A conversion problem Dahling) - he had read old medical papers. Dr Toft has his head up his a.se. Ignorant pig

[Kitten1978 in reply to marigold22]

As somebody who also almost died on T4...and ndt I can definitely see where you are coming from!

[Nanaedake in reply to jimh111]

So what was the Dr Skinner thing? Have you got a link, don't want to divert post away from topic.

[Hyburn in reply to Nanaedake]

I used to see Dr Skinner in Glasgow many years ago and got prescribed Armour Thyroid which was expensive & didn’t work that well for me, although I know it worked for many of his patients. You could try Googling Dr Gordon Skinner & thyroid.

[Kitten1978 in reply to jimh111]

I agree with you. Still, it's good that he has seen some light and is willing to admit to at least some of his mistakes.

[Hyburn]

I seriously thought about it but I live near Glasgow so a lot of travel for me & like others on here my health is not always great. Also felt there were others who might be better doing it.

[Hyburn]

Can only hope that this encourages others who may have been afraid to put their heads above the parapet to now speak out in support.

[jimh111 in reply to Hyburn]

Dr Skinner did that in 2003 bmj.com/content/326/7384/295 in response to Toft's article about not prescribing liothyronine bmj.com/content/326/7384/295 . Dr Skinner was subjected to over a decade of harassment from Toft's cronies via the GMC which led to his early death.

[jimh111]

I looked at this and considered it. Unfortunately it is a guideline on 'thyroid disease' i.e. limited to problems with the thyriod gland. Regarding hypothyroidism it only considers primary hypothyroidism. Most patients on these forums have more complex isssues including problems with the hypothalamic pituitary axis, deiodinse issues and resistance to thyroid hormone. All these considerations are out of scope. Thus, the battle is lost before it is started - unless the scope is changed. See nice.org.uk/guidance/gid-ng... .

[Hyburn in reply to jimh111]

jimh111 I am heterozygous DIO2 gene, suspect hypothalamus or pituitary involvement but unsure how to find this out and possibly have cellular resistance. Any ideas how I can investigate these?

[jimh111 in reply to Hyburn]

If you have low TSH fT3 and fT4 it would indicate pituitary or hypothalamus issue.

[Hyburn in reply to jimh111]

My TSH is pretty much suppressed at 0.007 and FT4 & FT3 are lowish normal. I have high RT3. Was on 20mcg T3 & 200mcg T4 with these results. Am now on 40mcg T3 & 100mcg T4 & about to do tests again as that is 8 weeks since change. I cannot regulate my body temperature and am often way too hot when others are not.

[diogenes Remembering]

This is just possibly a new beginning, but I'm not over-confident that he will be taken seriously - the powers that be have a lot of face to lose! The interesting thing to me is that not one item of our 20 + paper work was mentioned. And there are indications of wanting to return to the olden days when T3 was not such a problem rather than use modern knowledge to proceed beyond that. However I 'm not going to carp because at least the unsatisfactory state of affairs has been publicised, and we should be thankful for that.

[diogenes Remembering]

And there is of course an element of the "bandwagon" here. That is, Toft scents the way the wind is blowing in various parts of the world, and wants to be regarded as one of the party. It's common for people to climb on the wagon and try to seize the whip to enhance their reputation. But he is not yet up to date, and the new paradigm is not simply a return to the past.

[marigold22 in reply to diogenes]

Until and unless Dr Toft accepts that patients like me actually exist, he will be an arrogant failure. Dr P recognised that my body can't convert T4 into T3 in 1995 without any blood tests - he tested my reflexes which were extremely slow & recognised that my adrenals had followed my thyroid and I was dangerously ill. It was so called intellectuals like Dr Toft who had got me to that stage. A total wasted 36 years of my life and damaged my son mentally and emotionally. Do you wonder why I'm so incredibly angry? When I questioned a 'mere' endocrinologist at the Birmingham QE (teaching hospital) in the Summer 2017, she in turn got angry. They can all rot in hell as far as I'm concerned. Please read my newly updated Profile. Should any person go through that - to hell and back? Let's face it, nothing will change for at least ten years, so I have moved on, got my life back by myself (with the assistance of this fab forum).

[Hyburn in reply to marigold22]

I understand. I myself have been trying to get well, or at least better than I am, for at least 35 years. I don't convert well and have long suspected adrenal problems. Now taking Adrenavive, amongst other things, and have referral to new NHS endo who supports the use of T3 so will see what he has to say. My current NHS endo doesn't but took lots of blood last appointment for testing various things which might shed some light on my condition. I live in hope. Also got 23andme genetic testing done & will send that off for analysis.

[Hyburn]

Update. Dr Toft agreed at my last appointment to put me on a trial of T3 only as I wasn't doing well on the combo. Am now on a divided dose of 50mcg liothyronine a day. About to do another round of testing. Last time RT3 had gone from high back to normal. Symptom wise I reckon I still need more T3 & will discuss that with him at my next appt in December. He is speaking at the Thyroid Trust meeting in London in November if anyone is interested in going. Tix are free on Eventbrite.

[marigold22 in reply to Hyburn]

It sounds to me that your DIO2 gene test will return as at least faulty thyroid gene from one parent (as in my case) or maybe even both parents. That gene test print out was one of the things that swung it for me to keep T3.

[Hyburn in reply to marigold22]

I had DIO2 genetic test done in 2015 and I have gene fault from one parent (both had/have thyroid disease). It was that test which persuaded Dr Toft to give me more T3 & reduce my T4 and ultimately to switch me to T3 only.

[pennyannie]

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