A little hors d'oeuvres for Bianco's upcoming book - Thyroid UK

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A little hors d'oeuvres for Bianco's upcoming book

diogenes profile image
diogenesRemembering
15 Replies

I hope this is downloadable for those interested. It is an interview by a journalist with Bianco to display the scope of his upcoming book (Chicago University Press)

medscape.com/viewarticle/97...

medscape.com/viewarticle/97...

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diogenes profile image
diogenes
Remembering
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15 Replies
Yeswithasmile profile image
Yeswithasmile

Well I am liking that interview. Thank you diogenes 👏🏻👏🏻

helvella profile image
helvellaAdministratorThyroid UK

It appears that we could end up in the seemingly paradoxical situation in which those who do acceptably well on levothyroxine are the ones with genetic oddities, etc.

So why do most patients report feeling fine with LT4 alone? "We do not have the answer to this question. Multiple factors could explain it, including genetics," he told Medscape Medical News.

(From the until-now orthodox viewpoint that levothyroxine is all most need with T3 being required only by those with genetic oddities.)

Litatamon profile image
Litatamon in reply to helvella

I am not sure that there as many who do well on t4 only as they think. I asked my endocrinologist, who does not even test t3, if she has any patients on it. She told me all are doing well on t4 only. And she has to go back to her days as a resident to remember a patient who needed it. Since we all know *all* is most definitely impossible, people have to be sourcing elsewhere under her care or just excepting a sub par result.

carorueil profile image
carorueil

Thank you for this information. Was prescribed LT3 a long time ago when wasn't doing well on levo but endo didn't know how to 'manage it'... no other endo every suggested it since!

shaws profile image
shawsAdministrator in reply to carorueil

The Endos rarely prescribe LT3 due to its high cost. People remain unwell and cannot have normal health and wellbeing without it.

carorueil profile image
carorueil in reply to shaws

weirdly one endo did prescribe it here but she didn't know how to dose it - I felt great one day and crashed the next.. I don't remember it being more expensive than levo here (France).

TSH110 profile image
TSH110

Thanks for posting

Has Tessnow never heard of NDT - no combination pill indeed! No idea who Tessnow is but I’m glad he’s not treating me. I guess this lot want to make a shed load out of slow release t3 and seem to be keen to keep NDT well out of the picture.

Charlatans?

diogenes profile image
diogenesRemembering in reply to TSH110

I think the word is "misled". It's assumed that because FT3 peaks shortly after dosing that the patient is temporally hyperthyroid as regards body function. So the assumption is that the body swings in harmony with the FT3 swing between doses. But this cannot be so. It takes time for the body to respond to a given T3 dose, by which time the FT3 is on the way down. So the "wave" of T3 will be followed by a much smaller wave of body response. So actually, sophisticated T3 derivative molecules give the reassuring stability of FT3 when it might not be needful, either in the short or long-term. And there are simpler T3 derivatives that seem to work almost as well. I'm thinking of T3-sulphate or -glucuronide which are the T3 products excreted by the kidney. These aren't patentable as they are natural products. So development of the sophisticated T3 derivative may not be needed.

TSH110 profile image
TSH110 in reply to diogenes

That’s very interesting. I can discern absolutely no sign of any peaking of T3 when I take NDT. At first I did have to divide the dose or I felt weird, then later on wiped out. But over time this stopped and one dose a day was fine. I experience dosing as very smooth and fully integrated with no blips whatsoever. Just occasionally I forget to take it, I presume because it feels absolutely normal. I feel a lot better on NDT than I did for years with the undiagnosed thyroid disorder. You begin to wonder when did you actually feel “normal”. I suspect things were not quite right from my 20’s onwards - all that energy , always on the go like a crazy woman. I often felt like I was as high as a kite. Was I just energetic or hyperthyroid? Then the increasing bouts of tiredness and exhaustion . Were the bits in between normal? I feel where I am now is about as stable as it’s ever been.

shaws profile image
shawsAdministrator

I have recovered my health on T3 alone thankfully. With T4 all I had were severe palpitations and many overnight recordings by Cardiologist who couldn't figure out what was the cause.

carorueil profile image
carorueil in reply to shaws

I was very unwell on T4 hence the search for NDT which has helped me a lot.. Been stable on same dose for years until major stress trigger last year which definitely has messed me up (still ongoing). I had the palpitations/weight loss etc with T4 overmedicated which was confirmed much later. Just wish endos who prescribe NDT know how it actually works! I've even contacted ERFA to see if they have any documentation that I can bring along when I finally do see my endo in October (figured best to avoid emails... )

shaws profile image
shawsAdministrator in reply to carorueil

I couldn't tolerate T4 at all but by the time I was, finally, diagnosed TSH was 100.

I had never heard the word hypothyroidism and neither did any of the people I paid for an answer to my clinical symptoms. Whereas all of our older doctors could diagnose upon our symptoms alone (no blood tests then).

I was glad to be prescribed anything I thought might resolve syptoms but it was a while before I realized it was T4 that was causing severe palpitations.

Your Endo might not be willing to prescribe NDTs even though they were the very original lifesaver since 1892. Some might be willing so I hope yours will do so.

carorueil profile image
carorueil in reply to shaws

Well I was overmedicated with T4 (ended up having a seizure) amazingly when I stopped T4 brain scan normal & been on NDT for 11 years and no seizure..Other endos (in Ireland) confirmed I'd been put on levo way too soon & way too strong.. My current endo does prescribes NDT it's just that she seems obsessed by THS - so have been having email 'chats'... as she's in Dublin and I'm in France (with Covid it's been complicated). Figure best option is to find some 'guide' to explain to her how NDT works (ie not like levo) so that she'll accept that as my TF3 and TF4 have slightly improved on increasing NDT meds and I feel better, even if the TSH has gotten lower.Last email from her secretary had the ominous 'heart health' implying NOT doing what she said wasn't an option. That's why I think I'll wait til I actually physically see her in October and hope she accepts how NDT actually works.. Email exchanges don't really work ditto phone calls... It can be tiring dealing with this... thanks -forgot to say also got a heart murmur from being on levo (had been seeing doctors since birth so that would have shown up decades ago if it had been there)... Unfortunately in France French doctors tend to give you a mega dose of everything rather than starting on a low dose... it can be tiring, hence my switch to the Irish endo..

shaws profile image
shawsAdministrator in reply to carorueil

Most doctors put all of their responses to blood test results just on the TSH only. I take T3 only and am well with no symptoms.

Few request FT4 and FT3.

carorueil profile image
carorueil

Oh I always ask for FT3 and FT4 and the antibodies, I've always done the whole lot of them.. Don't really care if endos aren't interesting in antibody numbers I am.. It was the fact my THS was 6 that triggered by whole saga ... had no symptoms etc, so can definitely agree with that!

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Just thought it interesting

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