And yet 'they' still deny it is important ! - Thyroid UK

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And yet 'they' still deny it is important !

posthinking01 profile image
22 Replies

Found this today and thought it worth posting on here - not sure if this has been done before but I haven't seen it prior to today so here goes.

thyroidpatients.ca/2018/08/...

I wonder what those two scientists would think today - how their brilliant work is being 'denied' to the detriment of patient's health.

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posthinking01
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22 Replies
FallingInReverse profile image
FallingInReverse

Excellent article on so many fronts, thank you for posting!

posthinking01 profile image
posthinking01 in reply to FallingInReverse

Isn't it just - I'm also not sure how many people have seen the Dr. Toft 'talk' about T3 hormone - I always wondered how in 'the old days' thyroid patients seemed to thrive - he will explain how and why - I had 'words' with Dr. Toft many years ago in answer to his remarks to the BMJ that thyroid patients were 'imagining' their problems (he used a bigger word than this but it meant the same) - he was at the time President of an organisation we all know - when he retired - they seem to go private and give the patients exactly what they were denying was a problem previously - he is now a good one !

youtube.com/watch?v=HYhYAVy...

Sorry about any ads on the above link just skip.

Hope this helps !

A

Wua13262348 profile image
Wua13262348 in reply to posthinking01

Many thanks for posting this. It answers so much for my particular situation. It really strikes a cord. This , I think , is the missing piece of my jigsaw!

FallingInReverse profile image
FallingInReverse in reply to posthinking01

Can you reply with the title of the YouTube video and maybe the channel it’s posted on. Link isn’t working for me so I will search directly with that info.

posthinking01 profile image
posthinking01 in reply to FallingInReverse

Sorry about that - try u tube Thyroid Trust Toft Talk or Thyroid Trust website ?

FallingInReverse profile image
FallingInReverse in reply to posthinking01

Got it thank you!

posthinking01 profile image
posthinking01 in reply to FallingInReverse

Well done !

arTistapple profile image
arTistapple

Pitt-Rivers quote “The moral of this story has convinced me that it is rash to assume that one is ever at the end of the elucidation of a biological train of events.”

It must be infuriating for scientists working on genuinely important work being constantly ‘cherry picked’ or alternatively ignored by endocrinologists. I don’t think other ‘specialisms’ suffer to quite the same degree. In endocrinology they really are openly putting stoppers on progress.

This information is about real scientific thinking and the complete opposite of our medics. Most of them have shut the door on scientific thinking. A bunch of modern day Luddites.

I can’t remember who said “medicine is both science and art” or something along those lines. It’s rare to see either, never mind both attributes, in today’s medics.

Thanks for putting up this incredibly interesting piece of work and totally agree with your well made point:

“..how their brilliant work is being ‘denied’ to the detriment of patient’s health.”

posthinking01 profile image
posthinking01 in reply to arTistapple

Agh the wheels of improving the health of the nation move very slowly indeed and it is only because of courageous people like these people below - the Lind's and Marshall and Warren etc. that have improved the very same health of the nation albeit in a small sphere - I followed Marshall and Warren's work back in the early 80's and know that he (Marshall) injected himself with H Pylori bacteria because his work was being somewhat discredited - he infected himself then 'cured' himself with the two antibiotics he had found worked for the bacteria in question.

en.wikipedia.org/wiki/Barry...

Lind - it took over 100 years plus before anyone took notice. Only when the navy were suffering from such shortages of crew due to deaths by Scurvy did they finally do something about it. How many lives could have been saved but for the ridiculous closed shop of medicine. Only 700 men in one sail expedition survived out of 2,000 crew.

Scurvy is a disease caused by a deficiency of vitamin C. Symptoms of scurvy have been recorded in Ancient Egypt as early as 1550 BCE12. In Ancient Greece, the physician Hippocrates described symptoms of scurvy, specifically a "swelling and obstruction of the spleen"1. In 406 CE, the Chinese monk Faxian wrote that ginger was carried on Chinese ships to prevent scurvy1. Some of the earliest evidence for a disorder suggesting scurvy dates to 3800–3600 BCE2.

Dr Lind's "Treatise of the Scurvy", containing a celebrated review of literature on the disease, appeared in 1753, by which time he was a practising physician in Edinburgh.

He prided himself that he had conquered a condition which "during the last war, proved a more destructive enemy, and cut off more valuable lives, than the united efforts of the French and Spanish arms".

But it was not until 42 years later that the Admiralty first issued an order for the distribution of lemon juice to sailors. Historians still debate why it did not act upon Dr Lind's discovery earlier.

How long will we have to wait before the medical profession understand how wrong they are about thyroid treatment - they have forgotten more than they know today ! From research I have undertaken and personal experience - I am firmly of the opinion that Scurvy is an adrenal gland issue - Vitamin C is more prominent in the adrenal glands than anywhere else in the body as it is needed to produce the hormones needed to keep our hormones in balance. Onward and upward as they say !

arTistapple profile image
arTistapple

Got distracted by helvella post on yet another paper on Low T3 with reference to heart issues. Upward and Onward! It’s Hobson’s choice for us.

serenfach profile image
serenfach

I am convinced some doctors still believe in the wandering womb!

Hashiboy profile image
Hashiboy in reply to serenfach

That made me laugh.

Hashiboy profile image
Hashiboy

Thanks for the link. It was very interesting to read the history of T3.

posthinking01 profile image
posthinking01 in reply to Hashiboy

It was interesting wasn't it - all the years I have been researching this subject and had never seen that document or known about the scientists involved.

Wua13262348 profile image
Wua13262348

Thanks for posting. That is absolutely fascinating. I had no idea . It is a pure disgrace that in 2024, her work (1950s) has made so little impact in helping patients. Diogenes , I think, when he gave evidence to the Scottish Parliament, said he could see us coming full circle back to NDT in the future. waveylines Certainly a ringing endorsement for members like Waveylines who need NDT. It places importance on T1 andT2 which T4 mono dosing and combined T4/T3 dosing lack, and from an impeccable and expert source- a vindication of NDT.

Off to watch your other Dr.Toft video.

posthinking01 profile image
posthinking01 in reply to Wua13262348

Let me know what you think of the video !

Wua13262348 profile image
Wua13262348 in reply to posthinking01

I posted a reply to thank you for posting the video also, but it doesn't seem to be showing on the site! Thank you so much for posting the Toft video. It was invaluable! I have the missing piece of the jigsaw now in my particular case. So helpful! The video was 2018 , I think. I think research has moved on a bit since 2018, so some of what he said has likely been superceded. The question from the absentee , Lesley, read out at the end, was particularly relevant to me. Unfortunately, being at the very end, and Lesley not being in the audience, meant the question and answer didn't get a full enough reply.

So , in answer to your question- I thought the video invaluable. Can't thank you enough for the insight into what Dr.Toft would think of my particular problem. He would tell me I was going to have a hyperactive thyroid in 5-10 years, due to having multi nodular goiters, which he considers toxic. The goiters do seem to have been secreting T3, as my FT3 was 6.5(3.1-6.8). Not toxic though-still in range. FT4 was 5.5 (12-22), TSH 4.02 (0.27-4.2)- TSH still in range.He said multi nodular goitres happen because they are secreting Growth Factor. I assume growth factor is Growth Hormone. I believe I have been secreting Growth Hormone, as my feet are 3 sizes bigger as an adult. My thyroid genetics are for TRab antibodies and predisposed to Graves, hyperthyroidism. I have the poor signalling double mutations, lots of us forum members have. The goiters secrete independently of the HPT axis .And yes, my TSH was in normal range when FT4 was minus 65% through the range. I have DIO1 mutations which he does not seem to be up to date with. Taking the DIO1 mutations into account, coupled with the fact I have a double CBS mutation which causes up-regulated selenium and an UNDERACTIVE thyroid- hypothyroidism, my T4/T3 readings are reflecting 2 different sets of genetic mutations:

On 50mcg levo, TSH 1.16(0.27-4.2), FT4 12.7 (12-22) 7%, FT3 5.87(3.1-6.8) 74.86%., with 2 nodules.

On 63mcg levo, TSH 0.31(0.27-4.2), FT4 17.0 (12-22)50%, FT3 4.6(3.1-6.8) 40.54%, with 3 nodules.

On 72mcg levo, TSH 0.20(0.27-4.2), FT4 20.0 (12-22)80%, FT3 4.9(3.1-6.8) 48.65% On 75mcg levo, TSH 0.09(0.27-4.2), FT4 21.9 (12-22),99%,FT3 5.5(3.1-6.8) 64.86%

Unmedicated, with one 2cm nodule:

, TSH 4.02(0.27-4.2), FT4 5.5(12-22), minus36%, FT3 6.5(3.1-6.8)91.89%

Prolactin , always raised in Hypo, plays a role in regulating the thyroid regardless of the HPT axis. Thyroid Canada, states that FT3 plays the defining role in what the TSH will be, and the HPT axis is secondary to this.

37 years of TSH only readings completely misses showing what has been happening for years. Even adding an FT4 reading, you miss what is going on. I had a reading 10/4/13 of TSH 0.04(0.2-5.0). FT4 19.4 (9-21), when not medicated . FT3 not measured, but low, as cholesterol was 6.5. All parties keep denying this blood test exists.

I have copied "Thyroid Hormone Replacement-a Counterblast to Guidelines" written by Dr.Toft, and referred to in the video. I look forward to reading it, and think it is going to come in mighty handy!

Edit: I think Growth Factor is different from Growth Hormone. I actually do have a mutation, marked, "likely benign" in my genetics report. It is TGFB2 which produces transforming growth factor-beta receptor 2, also TGFBR2 which encodes transforming growth factor-bta receptors 2, though marked benign. TGFB2 mutation I have is unique to me , as marked "not observed".

 posthinking01

posthinking01 profile image
posthinking01 in reply to Wua13262348

So pleased it helped - I was amazed that patients were on 200 mcg of T4 years ago so no need at that amount for T3 as conversion would have happened at that level !

Wua13262348 profile image
Wua13262348 in reply to posthinking01

I was amazed too. I think they said doses of 200mcg-400mcg were used as a replacement for NDT. This would make sense of waveylines being told by Endos that she would need 380 ish???mcg liquid levo coming off NDT as a replacement, when Waveylines thought the equivalent to be around 183mcg????, from memory.

I have edited my last reply to you, but don't know if you will have been alerted I have edited it to add a bit of information at the end.

posthinking01 profile image
posthinking01 in reply to Wua13262348

Will take a look

posthinking01 profile image
posthinking01 in reply to Wua13262348

Growth factor and growth hormone are two different things - I once had GH deficiency - took injections didn’t help !

Wua13262348 profile image
Wua13262348 in reply to posthinking01

I've edited the longer reply again for a 2nd time!

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