Dr Toft brought in this regime for blood testing, the TSH test and T4 therapy over 40 years ago. In 2012 there was a conference in Scotland where he did a U turn and stated that not everyone does well on T4 only guided by the TSH test.
I have the notes from that conference.
If anyone would like it then please email me at lynthip@aol.com
All GP's should see this, they are using a regime that the person who invented it does not now agree with! Amazing. Take it with you to your GP.
Gismo333, Dr. Anthony Toft is an eminent endocrinologist, one time president of the BTA and still practising in Edinburgh.
Dr. Robert Utiger created the TSH and FT3 tests but hoped doctors would treat the patient and not the TSH.
wilsonssyndrome.com/creator...
Dr. John Midgeley invented the FT4 test. He is an advisor to TUK and posts as Diogenes. He published research in Clinical Endocrinology demonstrating TSH, FT4 and FT3 are individual and dosing according to population ranges is therefore inappropriate .
Hi thanks for that. Yes I know who Dr Toft is. I was born with a lingual thyroid, all the gland was in my tongue. My local hospital didn't know what to do with me when it swelled, all tests were normal. They contacted everyone including him as far as I am aware but all that came back was the TSH test and T4 therapy. Consequently they killed the gland with RAI, it grew scar tissue and I ended up as an emergency in Guys Hospital in London to have it removed from the base of my tongue. I nearly ended up dumb. If they had just realised that the gland would have shrunk if I was given thyroid hormone, as it was swelling through insufficient thyroid hormone, a goitre, then I wouldn't have been in that mess. After the op I was monitored with the TSH and T4 until in a near coma state, bed ridden and covered with fibromyalgia for 18 months, I couldn't walk, until I found Dr Peatfield who changed my T4 to T3 only, only then did I learn to walk again. I went to the USA to Dr Lowe and he advised on my treatment to rid my body of the terrible pain.
It is about time that this Government realised that this TSH test and T4 only is a major cause of the NHS downfall for if left untreated or undertreated causes major illnesses later on in life.
Gismo333, You should put your background in your profile. Lingual thyroid is very unusual. How old were you when they ablated it?
I was recovering on T3 for 3 months post thyroidectomy. After RAI I was switched to T4, felt poisoned and went downhill until I was mostly bedbound with pain for 15 months. I suspected T4 was the problem as I felt some relief when I stopped it for 4 weeks for more RAI. Endo was insistent that Levothyroxine couldn't be the problem and not bothered that FT3 was below range so I added T3 for a couple of months. Brainfog cleared but physical symptoms didn't so I stopped T4 for 8 weeks without improvement and then stopped T3 too. Symptoms started improving at the end of the first week and disappeared within 2 weeks off meds. As soon as I resumed T4 palpitations and breathlessness started but the next day I added T3 which calmed them down. Been ok on T4+T3 since.
Dr. Lowe is very highly regarded by several members. His death is a great loss. Was he able to cure your pain?
Hi I was terrible, I had to stay in a room for 48 hours and not contact anyone. I had flashing lights and all sorts going on. It was the worst thing I could have done.
I was about 40 when they ablated it. It all went wrong through the menopause as hormones were starting to rage and of course the gland being in my tongue had nowhere to swell. The compression pains in my ears were terrible. Even as a child I was sick and when my periods started the pain was terrible. I have passed out twice. I ended up with a prolapse womb and endometriosis. I had that removed a few years ago by an excellent private surgeon, it took 6 hours. This is also thyroid related as the oestrogen gets too dominant in the body when the thyroid is low.
Dr Lowe was a very dear friend of ours. I went to him when I started to walk again with thanks to Dr Peatfield putting me on T3 only. I don't know how I got to the USA, I just got on a plane and went. Him and his wife, who is also a doctor, taught me so much of what is going wrong with these treatments. They guided me through the treatment, adequate T3, increases every 5th day, massage, exercise to tolerance, ultra sound on a continual beam, without their expertise I think I would have ended up in a wheelchair. We went back several times and they were very good friends of ours, his wife still is. I brought them over to the UK and introduced them to Thyroid UK and held a conference for them where I live. The hall was full but not a doctor in sight.
I proof read their book Your Guide to Metabolic Health and they kindly put my details at the back of their book as they believed my knowledge to be good enough. I can never thank them enough and John's death was a great shock, still is I can't believe he's gone.
I am in no bodily pain now but my tongue is always sore. It was severed to the base. The Professor in Guys Hospital was so upset at what he had to do, he said they could have suppressed it with thyroid hormone but they didn't, the blood tests told them to do nothing.
I'm so sorry you have also been through so much but my pain and suffering has helped many. I am halfway through my book and I will finish it one day.
Gismo333, it sounds terrible and worse because it was so damn unnecessary. I'm doing ok now, work to do on fitness but I'm sure I'll get there. Trying hard not to be bitter about the bad times which were also unnecessary.
I'm glad Dr.Lowe was able to help you and that you were able to help him and his wife in return. His loss must be terrible for you.
Perhaps you could email louise.warvill@thyroiduk.org.uk to see whether TUK will review the finished book.
Yes so unnecessary but somehow it was meant to be. I have met some wonderful people and grown as a person. Both my girls contracted it and I was able to help them with my knowledge. They know more than their GP's already!
I know Lyn Mynott well of TUK and when my book is finished I will email louise. Thank you.
I'm so pleased you are well. I can go skiing, I ice skate, walk miles and feel reasonably well. I can't say I will ever be 100% but then I was never really well as a child, it just got worse. You can hear an echo when I walk, I've lost so many pieces of my body, thyroid, gall bladder, ovaries, womb, tonsils, appendix.
So many people think that they are ok on their thyroid medication but when I ask them what else they are taking they tell me, water tablets, cholesterol tablets, bp tablets, so you know straight away that their T4 isn't working as the thyroid controls all of these conditions.
Keep well x
Gismo333 that is a very sad story-you are amazing to have survived all this! x
Thank you, I won't stop spreading the word until the day I die. I walk down my local town and see all these poor people with huge ankles full of fluid, hardly walking with pain on their faces, it's criminal and so upsetting to watch. The more you learn the worse you feel about it all. Thank you x
I was diagnosed with hypothyroidism when I was in my forties.I saw Dr Skinner in 1998 and I have been on armour ever since. The penny dropped that my Dad who had also been ill for years, might have hypothyroidism too.He had 'profound hypothyroidism' and of course he was given thyroxine which did not work for him.Sadly he would not take the armour thyroid that Dr Skinner prescribed for him. When he died, my Dad's T3 was on the baseline.
I will always think that if my dad had taken the armour his life might have been saved, but I guess it was his choice not to take it.He refused to take armour thyroid because it was an unlicensed drug here.It was very painful for us, that the NHS were so hopeless in treating my Dad. He was given T3 in the last week of his life,but it was too late.
Hi how sad for you but I had the same problem with my mum although she was prescribed Armour by Dr Peatfield when he was prescribing. She was in a home for years and her doctor said I could give it to her daily but he couldn't. On taking the Armour her hair grew back and she looked glowing at age 80. Her doctor changed and he accused me of giving her illegal drugs. Dr Peatfield stepped in and told them that he had prescribed it which stopped them in their tracks. I had to take her to my local hospital and the endo said she must go on T4 only and Dr Toft also said the same when they contacted him which I asked them to do as he knew of my conversion problem. I was horrified. I told them she would die within 6 weeks without T3 as she like myself had a conversion problem. She soon slipped into a coma and died 6 weeks later. I could do nothing as she was in a home.
Nobody gets the blame. They are ignorant beyond belief.
I'm so so sorry to hear such a sad story yet again.It is truly scandalous.As for Dr Toft…no wonder he is now saying that some people may need T3!!!
This is all so very very frustrating for us and like you, i try and spread the word.Thank goodness for this website, where we can share our pain and where people are constantly trying to change things.
It will change eventually, people will change it but in the meantime drug companies rule the roost. If they altered this thyroid issue who would need water tablets, statins, bp tablets and all the horrendous ops that are associated with a low metabolism. I pray I see a change before I die as the suffering out there is so unnecessary.
Keep spreading the word!
Sorry, just to put matters straight, our team at Amersham produced the first commercial FT3 test as well as FT4. Up till then FT4/3 testing was very slow and academic and not suitable for routine labs. Pity that the various copycat manufacturers have made such a fist of both tests, esp FT3.
Well I had all tests done, TSH, FT3 and FT4, still they showed I was in range and fine. I had to fight for my life in the end and it was only a doctor ignoring all tests and putting me on T3 only that I am here today. No test will show how much T3 is entering the receptor sites on the cells, they are just measuring what is in the blood. Until doctors realise this then the agony of patients will continue. Such a sad state of affairs. Doctors have forgotten to listen and look at their patients, they just look at the screen.
I agree that the tests should be intelligently used and that does not mean taking "in range" as a definitive dismissal of relevant symptoms and refusal of treatment. But this does't mean that the tests are useless; they all have their relevant roles to play in the appropriate circumstances. One can readily find out if T3 input into the cells is defective: blood FT3 has to be high in range (or even in resistance above range) and the ratio of FT3 to FT4 for health has to be very large in such patients if on T4 monotherapy. For FT3, in such cases, on T3-treatment alone, the results could well be well above normal for satisfactory outcomes. What I'm trying to do is to establish a logical link between diagnosis, symptoms, test results and treatment for as many people involved as possible. Not everyone: no regime in the world will catch 100% of people and treat them correctly unless the greatest care is given in analysing and treating the exceptions to the rule. The aim is to include as many people as possible by the best diagnostic paradigm, realising of course that the closer you get to 100% success, the more expensive it is to achieve it. And if for no other reason than cost, a line has to be drawn somewhere in practical medical diagnosis - but at the expense of as few people as possible.
Dr Lowe did all the scientific studies and found that the blood tests did little to show the real picture. I have been doing my helpline for 20 years and I haven't found many that do well on blood testing and T4 therapy.
Simple reason. Most people do reasonably well and don't complain. That doesn't excuse dealing properly with those who don't tolerate T4 therapy. I'm afraid I don't agree with Lowe on this.
The problem is reasonably well isn't good enough especially as these people then go on to develop heart conditions and many other vascular problems later in life.
All my bloods came back fine but I ended up in a semi coma state for 18 months and couldn't walk. Dr Lowe's regime which stimulates resistant receptor sites on the cells, which is what I had developed through unconverted T4, was the only way for me. I owe his studies and his dedication my life.
Hi Clutter. Have just come across an old reply of hours . l found the bit about Dr Midgeley's view on ranges very interesting .For clarification does it mean he favours a national set of ranges . I ask this as my hospital lab have Ft4 range of 7.86/14.41pmol/L surely one of the lowest in the UK .
Cheers Skeeter
Skeeter, I don't see anything in his replies to suggest he has an opinion on national ranges.
My understanding is that ranges are statistical averages determined by population samples local to the lab and are also dependent on the analysis technique/machine used by the lab.
If you test in another area where the range is 12-22 the result will be different but it's likely to be within the same percentile of range as your results are now.
No Dr Toft hasn't given ranges but Dr Hertoghe has from his Belgium clinic:
After working the whole week in Switzerland on a report of the
International Hormone Society on the TSH, T3 and T4 reference ranges,
I have sorted out all the studies that suggest that untreated patients
(in primary hypothyroidism, due to a weak thyroid gland) with a TSH
above 1.5 or 2.0 (reference 0.2-4.2) have cardiovascular
abnormalities, more obesity, depression, mortality, etc. enough data
to suggest a change of normal references to healthy references
(0.3-1.5 or 2.0). In case of secondary or tertiary hypothyroidism (due
to a weak secretion of TSH or TRH by respectively the pituitary gland
and hypothalamus), the TSH test itself is worthless. Likewise for T3
and T4, enough studies show that within the actual reference ranges
for T3 and T4, especially the lower half or lower third is correlated
with disease and higher mortality, enough to give serious arguments to
narrow considerably the reference range so that the tests help somewhat.
Of course the clinical condition of the patient (complaints and
physical signs) should predominate in the choice of the treatment as
they are the expression of what is really going on inside the cells.
There is data to support this view too.
Kindest regards
Dr Thierry Hertoghe
Gismo, it would be wonderful if the ranges were altered, particularly the UK's brutal TSH >10 still used widely.
I lay in bed with hardly any hair, crippled and freezing cold for 18 months due to these blood tests. I had to crawl to get to the toilet so I'm afraid nobody on this planet can tell me they work, they don't! If not for Dr Peatfield and Drs Lowe in the USA I would not be here.
Gismo, I know they don't work for everyone. People wouldn't find relief from symptoms when they self medicate if they did.
I spiralled between hyper and hypo for 2 years with mildly elevated TPOab and unequivocally euthyroid bloods. Symptoms and swings continued after hemilobectomy and stopped after thyroidectomy 3 months later. I don't know whether removing the target thyroid stopped swings, whether T3 was helpful, or both. Certainly convinced me that autoimmune attacks aren't asympomatic, which doctors claim, and that replacement hormone may be useful in controlling/relieving symptoms when euthyroid.
Thanks for reply Clutter . It's my hobby horse I'm afraid ft4 ranges I just downloaded next nearest hospital to me labs ranges ie 11.5/22.7 pmol/L and it just seems so much higher than locai hosp where I am tested . l won't even get started on difference in B12 ranges both measured in ng/L .
Thanks again Skeeter
I was not aware that Toft had been given a knighthood. Is this recent, does anyone know?
I was told incorrectly then but his views have completely changed on this regime, I just wonder why?
I felt that listening to him speak at the Scottish Parliament. He almost sounded ad if he was on our side.
Gizmo, you have had a dreadful time, you've hit the nail on the head when you talk about 'reasonably well'. There seems to be no place for 'fine tuning' in the NHS which is a shame. There's a huge difference between being reasonably well and feeling good. The ranges are so enormously, my labs TSH is from 0.5 - 5.5. A huge difference. Telling me I'm 'within the range' is like a red rag to a bull to me. Totally drives me mad.
Anyway, really glad you have made such good progress, just a shame you've had to really suffer to get to where you are now. 😀
Hi there is no place for fine tuning, or any tuning whatsoever. As long as the GP keeps his job it doesn't matter and all looks well on the screen. After removing the gland from my tongue I have no tissue left in my body, nothing, and my GP will not give me any thyroid hormone! My TSH is suppressed and because of this he's running a mile. So not only have they destroyed a perfectly healthy gland, which it was, the Professor said it just hadn't grown big enough and needed some help, they are now stopping me from having any medication at all. Surely there is something wrong here. I have a new doctor now and he said the same as the old one even though I am healthy and look fine with no over stimulation whatsoever. It's criminal to say the least. Dr Hertoghe gives me my T4 and I get the T3 myself from Mexico as it's the purest and the best. He told me to keep away from the endos here as the stress would just make me ill.
Their knowledge of the metabolism is zilch and you only have to walk through your local hospital to see the end result of untreated and under treated hypothyroidism. When you have been in this thyroid world that I have been in for the last 20 years it doesn't take me long to look at a person to know something is drastically wrong.
How many people do you see with very dark circles under their eyes, adrenals, but sadly in this country you either have Addisons or you are fine. There is no in between as far as they are concerned yet the adrenals glands are paramount to good health. All they use to test is a blood test and even that they do wrong as it has to be done right. They would never think of using the simple saliva test which is excellent for showing decreased cortisol levels at 4 points during the day.
It's all beyond belief to me.
I listen to Cameron on the tv stating we must pour more funds into the NHS, whatever for, until you get this sorted you may as well pour it down the drain, a good metabolism is essential for good health.
Dr Hertoghe did studies in Switzerland a while ago and this is what he sent me:
After working the whole week in Switzerland on a report of the
International Hormone Society on the TSH, T3 and T4 reference ranges,
I have sorted out all the studies that suggest that untreated patients
(in primary hypothyroidism, due to a weak thyroid gland) with a TSH
above 1.5 or 2.0 (reference 0.2-4.2) have cardiovascular
abnormalities, more obesity, depression, mortality, etc. enough data
to suggest a change of normal references to healthy references
(0.3-1.5 or 2.0). In case of secondary or tertiary hypothyroidism (due
to a weak secretion of TSH or TRH by respectively the pituitary gland
and hypothalamus), the TSH test itself is worthless. Likewise for T3
and T4, enough studies show that within the actual reference ranges
for T3 and T4, especially the lower half or lower third is correlated
with disease and higher mortality, enough to give serious arguments to
narrow considerably the reference range so that the tests help somewhat.
Of course the clinical condition of the patient (complaints and
physical signs) should predominate in the choice of the treatment as
they are the expression of what is really going on inside the cells.
There is data to support this view too.
Kindest regards
Dr Thierry Hertoghe
TSH suppressed = Blood Clots? 3 clots in 3 months after starting thyroid meds (t3/t4). What to do?
Levothyroxine only or mixed therapy T4/T3; my experience...
Does this look more Euthyroid and less central hypo now?
serum thyroid normal rangesOne Lab, same time, 2 requests, same tests. TWO DIFFEREND RESULTS! Why is that?
