Dr Toft and 'Understanding Thyroid Disorders' - Thyroid UK

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Dr Toft and 'Understanding Thyroid Disorders'

Princesspea profile image
15 Replies

Ok, its now reaching farcical proportions with my GP surgery. The head doctor is blocking any of the GPs from even discussing my thyroid, they are refusing to write me sick lines for work and when I was in the other day the GP I saw completely berated and humiliated me but my brain fog is so great at the moment that all I could do was sit there and take it. However they underestimate me and it is now time to start using some of my precious energy into doing some serious reading on this and try and get some of it to stick so I can fight my corner.

So quick question please - Dr Toft and his book, am I correct in saying it is a very good book from our point of view? Is he very knowledgeable on the subject, especially from the point of view of someone with 'normal' blood test results?

The reason I am asking is I have just discovered (DUH!) that he is based in Edinburgh which is about 30 mins from where I live and if he accepts patients.........well you get the idea!

Many thanks in advance

Gail

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Princesspea
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15 Replies
shaws profile image
shawsAdministrator

I cannot answer your question but Dr Toft said in one of his replies that:-

But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.

Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.

******

Has your GP tested for antibodies? If you get a copy of your thyroid gland blood tests and post here complete with ranges and it will enable people to comment (they cannot refuse to give you a copy but remember to get the ranges). If you haven't already done so, ask for a B12, Vit D, iron, ferritin and folate.

Maybe someone who is reading your question knows of an Endocrinologist in Edinburgh and you can also email Louise.Warville@Thyroiduk.org

Princesspea profile image
Princesspea in reply toshaws

Sorry Shaws, I have replied to your post, I have just posted it incorrectly!! lol Please see below.....

Princesspea profile image
Princesspea in reply toshaws

Shaws, sorry another question, I said below that my antibodies are negative but did you mean Intrinsic Factor Antibodies, as that is the test I have had.

shaws profile image
shawsAdministrator in reply toPrincesspea

No. The intrinsic factor will show if there is a possibility of Pernicious Anaemia. Intrinsic Factor is a protein which is necessary for the absorption of B12.

Princesspea profile image
Princesspea

Shaws, thank you for replying.

I have posted results on the board before and taken much notice of the replies so I am now on various supplements, get 3 monthly B12 injections (although I also take sublingual supplements as it was very low) and I also see Dr S who is helping me through, all thanks to the help I have received on HU. I have had the antibodies tested for and it was negative although they never tested for parietal antibodies.

My problem at the moment is (the same as many others) my GP refuses to acknowledge my treatment, test for anything even slightly thyroid related and is beginning to make my life very difficult with regards to anything I require their assistance with. I am one of these people whose thyroid result fall in the 'normal' NHS ranges but I have suffered with the symptoms for over 10 years and was written off with CFS/fibro. I am trying to put together some evidence (through the foggy brain) to try and persuade them to at least do the testing to monitor me. I thought if perhaps I went to see Dr Toft and if he agreed to treat me then my GP might finally sit up and take notice. I am perfectly happy at the moment being treated by Dr S (a lovely man who will hopefully prescribe me T3 on Sunday as T4 doesnt seem to be cutting it) and I realise everything I need can be done privately but I just figured if I can get my GP on side the whole thing would be very much easier on my tired brain. I know there are lots of people in this situation but I am just trying to find my way through all this.

Thank you again.

Gail

Totoro profile image
Totoro in reply toPrincesspea

I've just sent you a message about a good NHS endo I see in Edinburgh and also details for Dr Toft.

I know both that endo and Dr Toft do prescribe T3 for some patients. Anything that these prescribe should be also prescribed by your GP as one is NHS and Dr Toft is highly regarded in the medical establishment and wrote the thyroid booklet in association with the British Medical Association.

All the best,

Totoro xx

Princesspea profile image
Princesspea in reply toTotoro

Thank you so much!

dimdims37 profile image
dimdims37 in reply toTotoro

Hi, I'm in Scotland and trying to find out about as many Endos as possible, but haven't heard of any good ones on the NHS, please can I ask you to message me or post on here who you saw? I'm really struggling to get a GP on board, despite an arms length list of on going symptoms, low immune system with 5th infection in 7 months and all bloods only just within normal range. I can't afford to go private and please ask if you could share that info about the NHS endo you see in Edinburgh? Many thanks :)

dimdims37 profile image
dimdims37 in reply toTotoro

Tried to reply to you re the NHS Endo you see in Edinburgh but I'm not sure it's working ?

Glynisrose profile image
Glynisrose

Toft was also a past head of the BTA and I wouldn't trust him as far as I could throw him.

Princesspea profile image
Princesspea in reply toGlynisrose

Ok, thank you. Have you had an appointment in the past with him? Or just down to the fact he was associated with the BTA?

Gail x

Glynisrose profile image
Glynisrose

He denied for years(as the BTA chair) that T3 was any use to anyone, he helped support the BTA and further THEIR aims, thats enough for me to lose trust in him. He agreed openly with everything on the BTA site (which is not a lot) which is about as much use as a chocolate teapot!!

Princesspea profile image
Princesspea in reply toGlynisrose

Glynisrose,

Thank you, I have read more and have now come to agree with your comments.

thank you

Gail x

WeeB profile image
WeeB in reply toGlynisrose

hey , i felt like this about dr toft too but read some recent things where he may have gone full circle on t3, was on his info on bupa and shires medical and he has actually wrote that he is looking for people who may benefit from combined therapy - looks like he is doing research on it since leaving nhs

I often think we do need a list of endo indicating what types of hypothyrodism he/she would treat as much as what is already provided. I don't mean to sound ungrateful, it has to be said. The current list is super great and I am grateful having the list (!)but it seems people still struggle when choosing who to see (including myself).

I agree that the majority of endo ONLY and EXCLUSIVELY treat classic hypothyroidism (with high TSH) and not much else (translation: pretty much nothing else). Autoantibodies rarely get them interested when we have a full blown symptoms of hypothyroidism and some issues which are easily overlooked by GPs and run of the mill (average) endos who aren't interested in thyroid diseases except classically hypo people.

x

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