I ordered a book and it came today. I think I have ordered the wrong one. I thought it was one of the ones that is recommended on here. It's called Understanding Thyroid Disorders by Dr Anthony Toft. I am really confused from the first pages I read of it as it doesn't seem supportive of those of us whose blood tests come back normal but are still suffering. I don't see the point of reading it at all and wish I'd borrowed it from the library instead so I could take it back again.
The first time I opened it I read:
'some patients are convinced that their symptoms of tiredness, weight gain and feeling low are the result of an underactive thyroid gland even though the levels of the hormone thyroxine (T4) and thyroid stimulating hormone (TSH) are normal.
This mistaken belief has not been helped by numerous articles in newspapers and magazines and inaccurate information on the internet. Unfortunately a few doctors are prepared to diagnose hypothyroidism and treat patients with thyroid hormones even though blood tests are normal or with no blood testing at all. These doctors do not usually have any training in thyroid disease and most stand to gain financially from their activities.
The following answers to questions frequently asked by patients who feel that they would benefit from thyroid hormone treatment may help to convince you that it is not possible to have an underactive thyroid gland if the blood levels of T4 and TSH are normal.'
I know I am easily confused nowadays. Is this one of the books recommended for us to read? If so any idea why as there are plenty of us who fall outside the normal range including me and there is no way now anyone could convince me that I am not hypothyroid?
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Karispitit
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Yes this is the right book Dr Toft does say some helpful things later in the book. He also says some very unhelpful things, so you really have to pick and choose the bits to show your doctor. I'd give the whole thing a read and mark up the good bits - they are there honestly xx
That’s exactly what I did. I read it and chose to use the bits I could use to my advantage.
Hello,
I quite agree with you. I felt exactly the same and I found it insulting and it made me very angry. Fortunately it didn't cost much. My daughter and husband couldn't get a diagnosis from their GP and this book is I assume directed at those who do get a GP diagnosis. I have had correspondence with Dr. Toft too and found him very unhelpful and condescending.
You might find the following books more helpful to you:
Type 2 Hypothyroidism - Mark Starr
Tears behind closed doors - Diana Holmes or Dr. Peatfield's books.
I think his earlier editions were less condescending. I think, due to peer pressure etc, that he has had to moderate his thoughts on this. Perhaps he doesn't have the strength of character that others such as Dr S have to stick to his guns on this one
Didn't realise he had changed what he said in the book, Carolyn. Mine is 10 years old, and has exactly the wording as mentioned by Karispitit. It is certainly not a book I would recommend to anyone. A lot of it is simply untrue and not backed up by research - in my version anyway. I think there are several much more helpful and supportive books especially for anyone who has normal tests, but remains hypothyroid. Jane x
Oh, that's a shame. I thought that there were some things that had changed in the book but perhaps I am mistaken (I wouldn't be surprised!).
I found the book helpful when I was prescribed levo (his comments about TSH needing to be low/suppressed and T4 at top of range) but I can't remember the rest. I shall have to read it again. I suspect I shall feel quite outraged when I read it. I was quite naive at the time I bought it (I''m much better educated now ). I must say that I remember that there was nothing there for people with no diagnosis and normal test results.
I suppose the book has it's uses for those needing an increase in thyroxine dose but probably not much for anything else. It got me my dose increase (GP had to repect a former chair of the BTA (!!!), but unfortunately T4 didn't work for me).
Now off to find and read it. Perhaps it is only useful for those requiring an increase in T4 dose.
I shall have to have a look at the others you recommend. They sound much more interesting anyway
Mine says some people need to have their TSH suppressed and FT4 at the top of the range, or even elevated to feel well.
He goes on to say most will fell well in these circumstances, but a few do not and so a trial of T3 is recommended
He also says that a trial of thyroxine is warranted for people with sub-clinical hypothyroidism but with raised antibodies - to nip things in the bud.
This can be very helpful, but from memory he goes on to say that NDT is not recommended in any circumstances , and as you say he doesn't say anything remotely helpful for those with normal test results
Other books are often better, but this can have it's uses (selectively) with GPs and endos, in a limited range of circumstances. xx
Quite right Clare. I think you've summed it up perfectly.
The interesting thing was that when I wrote to him to get some advice he replied that he was absolutely against using T3 and that "normal" TSH was all that was needed for diagnosis. This was in the very early days of my investigations - maybe 12 years ago?? x x
He was my NHS endo for years and circa 2007/8 prescribed 20mcg T3 for me on top of 175mcg Eltroxin (I think that was dose either that or 200mcg) but would not give me any more T3 and was resolutely against NDT. He retired and I was left without an endo.
Fast forward to 2017 and my GP makes noises about taking me off T3 so I ask for endo referral. Woman I see does not approve of T3 or NDT or genetic tests or any tests unless they are NHS ones.
So I get onto groups like this and FB and try once again to get on top of things. Realise that I am still very hypo so make an appointment to see him privately at the Spire Hospital in Edinburgh as I have heard his views have moderated.
Armed with my DIO2 genetic test which shows I inherited the gene from one parent and don't convert well, and with a full panel of Medichecks results, I see him again.
He doubled my T3 to 40mcg, halved my T4 to 100mcg and wrote to my GP accordingly. He is still against NDT and didn't think my high RT3 was of any consequence. He was unsure of the significance of my practically non existent TSH.
One thing he always did which no one else ever has is examine my neck and hands.
He has changed his views on prescribing T3 and was well aware of the current issues around this.
I almost cancelled my appointment with him as I did not want to waste my money - heard some positive and some negative things - but was desperate so decided to go ahead.
I am glad I did. I think I need more T3 and even less T4 to improve and am seeing him again in January. Not sure how far he is prepared to go on T3 dose and whether he will increase it further but I will do my homework before my appointment and hope for the best.
I copied & pasted the review into a Word file and printed it out to take to my internist. I've had Hashimoto's thyroiditis for >30 years. I recently was tested and had a TSH of 5.4 - and he wants me to continue on my current T4 dose! He did send me for a thyroid ultrasound (when I asked him for a referral to an endocrinologist), but I've heard nothing since. I've been collecting articles, including refereed medical papers, on the relationships between low T4 and thyroid cancer, high TSH and dyslipidemia, and low T4 and cardiovascular disease. As he's been rather insistent that I take a statin - which I refuse to do - perhaps the dyslipidemia connection will work in my favor.
I liked this use the bits that suited me because he was one of ‘ the establishment’ and rightly or wr9ngly I felt it would be more difficult for doctors to quibble with 9ne if their own.
My view of the Toft book is this: It is a get-you-started book that is inexpensive and available enough for almost anyone to get hold of - often within a few hours at their local pharmacy.
Once you have passed the threshold of understanding the basics, its use drops to being something you can take to the GP.
When you go onto other books, they tend to be more expensive, more diverse, less speedily available. Further, in terms of persuading a GP, many are foreign (often USA) which possibly reduces their acceptability to UK doctors. And even choosing which one to get is more because they tend to have their own distinct viewpoints.
In terms of viewpoint, it does tend towards the standard endocrinology view. But even this has its use in the "know your enemy" sense.
He doesn't help patients at all who have normal blood tests and doesn't recognise they have thyroid issues - he neglects them. Dr Skinners book is the best one.
Toft is so condescending he doesn't have any idea how it feels to suffer the way we do and is making money from patients suffering but misdiagnosing them.
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Dr Toft does say some helpful things later in the book. He also says some very unhelpful things, so you really have to pick and choose the bits to show your doctor. I'd give the whole thing a read and mark up the good bits - they are there honestly 
xx
ATA document on Thyroid Hormone Treatment
Critique of Hypothyroidism Basics
Blood results. Comments welcome!
