Once upon a time!: Tania Smith has written an... - Thyroid UK

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Once upon a time!

diogenes profile image
diogenesRemembering
13 Replies

Tania Smith has written an excellent historical survey of the opinions of the first detailed analyses on thyroid function and treatment in her Canadian blog. It shows that the pioneers had more understanding than today's sheep.

Ingbar and Braverman’s historic study of LT4 monotherapy

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diogenes profile image
diogenes
Remembering
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helvella profile image
helvellaAdministrator

Good, isn't it! :-)

thyroidpatients.ca/2020/12/...

tattybogle profile image
tattybogle in reply tohelvella

I 'Liked' it :)

pennyannie profile image
pennyannie in reply totattybogle

I still trying to work my way through it -

I must be a slow coach today - all I need is some tumbleweed rolling down the street !!!

LindaC profile image
LindaC

Thank you! Pioneers certainly did - The History of Hypothyroidism is sooo rich - whenever possible, I tell 'them' that. 🌲

DippyDame profile image
DippyDame

Thank you for posting another Tania Smith treasure!

Should be essential reading for all medics!

As someone on high dose T3-only my GP insisted that I should dose by test results - I self medicate but a review/surprise blood test result caused her to panic and sounding my heart revealed a murmur. An Echocardiogram followed and revealed no heart problem just a slight thickening of tissue that is most likely congenital.

Absolutely no understanding beyond the spoon-fed basic spiel delivered in modern med schools....and not prepared to listen to the patient. Unlike her colleague who at least conceded that she had to accept a degree of patient autonomy....

Basically a good medic and a lovely person but spooked by the fear that her patient was killing herself on her watch. This should not happen to her either!

I still self medicate, my well-being depends on it.....and told this medic I intended to dose by signs and symptoms as was routine before tests were invented. No response!

Apart from making me angry it also makes me very sad....my relationship with my GP is now compromised

Once upon a time....indeed!

cazmania7 profile image
cazmania7 in reply toDippyDame

How did you come to realise that you were resistant and needed just T3? I wonder how people make the decision to just try T3 and bin off levo

LindaC profile image
LindaC in reply tocazmania7

The best way I found out - finally, years on, I was diagnosed by Dr Skinner, he properly tried me on Levo and at first I felt great, getting up singing/kicking my height (saying, "Yes, I'm back to normal" - my 'normal' was that!) until a few weeks in and I felt so weird and wired. That had me realise that T4 was not what I needed at all but I certainly needed something. I got relief even from the T3 in Armour, putting up with the T4 in there. Dr P had long since told me, "You'll need T3 for life because Armour isn't and never will be enough". 🌲

DippyDame profile image
DippyDame in reply tocazmania7

It was a long process of careful elimination and took over 2 years to reach a therapeutic T3 dose that allows me to function reasonably well.

It's all detailed in my profile....click on my avatar.I have to self medicate (as others in my situation are forced to do) which is not a route I would wish on anyone.

The few medics I have seen just do not understand so I had to learn what I could from reliable sources elsewhere....much reading.

If, or when, I can no longer self source T3 I will be in trouble once again and my body will in all probability start to slowly shut down once more.

It is the last resort.

A geneticist once told me that I may have an as yet undiscovered genetic variant.....we just do not know.

I was hugely fortunate (when I could barely function) to find this forum and the knowledgeable and experienced people who have offered invaluable guidance and support. They know who they are.

My journey need not necessarily be the one you need to travel.....we are all different.

Hope this helps

Take care

DD

cazmania7 profile image
cazmania7 in reply toDippyDame

Thanks for sharing! Did you feel rough coming off T4? After three weeks of a small reduction I have felt unwell twice. Makes me fearful of trying T3 only

DippyDame profile image
DippyDame in reply tocazmania7

I'm afraid I felt unwell for a very long time until adequate T3 eventually overcame the resistance and reached tissue level....After decades of low T3 some of the damage done is unlikely to be repaired now.... I am 75, I guess you are much younger with time on your side!

Levo was keeping me unwell.

T3-only needs patience, time and determination but the degree of those will depend on how serious is each person's problem.

I just knew I had to stick with it until I found my therapeutic dose or end up bedridden and in pain for years, like my maternal grandmother.

cazmania7 profile image
cazmania7 in reply toDippyDame

Wowsers. It’s a brave jump to make and a difficult one to commit too. I am glad that you are now well and that the experiment worked for you. I’m hoping some of the other things I try will fix me before I need to contemplate such a mission!

cazmania7 profile image
cazmania7 in reply toDippyDame

Hey DD, so even though you take a large dose of T3, presumably you’re still within the reference ranges?

When you took a smaller amount was that reflected in your bloods? Which indicated you could increase?

Happy Christmas to you by the way 😀🎄

DippyDame profile image
DippyDame in reply tocazmania7

Tests were devised for levothyroxine but medics seem to consider them the gold standart diagnosis....full stop!

My FT3 is above range and my FT4 and TSH have fallen off the bottom.

It is crazy, mad, silly, rediculous,sad but it seems that if the patient does not respond to levo then medics start to struggle.....just read the posts on here

On high dose T3- only patients tend to find themselves flying solo, self medicating and dosing by signs and symptoms.....which ironically, happened before thyroid tests!

We are far from the norm.

On a low dose without any resistance FT3 level will be reflected in the serum and staying withing ref range is still important. If not at top of range you might increase.

On high dose, with resistance, FT3 is high to create a "push" into the cells. Much of it remains in the serum and can be tested but result will be high. What isn't absorbed sloshes around in the blood until it is excreted.

But, T3 needs to reach the cells/tissues before it gets to work....and apart from monitoring symptoms there is no way to test how much T3 has reached the tissues

Sorry a scrappy reply....just off to check what's cooking!

Greetings....

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