eBook in production: We're currently writing an... - Thyroid UK

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eBook in production

diogenes profile image
diogenesRemembering
60 Replies

We're currently writing an eBook to summarise our findings over the last 11 years regarding the control of thyroid activity and implications for treatment. Other reviews have placed emphasis on using the FT4/FT3/especially TSH numbers to diagnose the patient, from a purely statistical basis. Our aim is the opposite. The patient as an individual (as regards response to treatment) is paramount over the numbers. The numbers are useful but not foolproof, if anywhere in the range is wrongly used as an inarguable determinant of success. Numbers dictating knowledge.

I've written before that TSH can be a"false friend" in diagnosing and especially treating patients. This I hope will flesh this out, describing the implications as a preferred procedure in presentation: the patient's story first. Knowledge dictating numbers.

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diogenes profile image
diogenes
Remembering
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60 Replies
TiggerMe profile image
TiggerMe

Fabulous 🤗

helvella profile image
helvellaAdministratorThyroid UK

I think I'd be replying for many of us here, we can't wait!

Nat107 profile image
Nat107

that’s fabulous news x

Recon profile image
Recon

I will buy two - one for me and on to send one to my endocrinologist!

CosmicGirl61 profile image
CosmicGirl61 in reply to Recon

Me too!! Omg and my GP practice!!!!

TaraJR profile image
TaraJR in reply to Recon

One should go to every Endocrinology department!

jimh111 profile image
jimh111

You are in danger of introducing good science into thyroidology.

radd profile image
radd

👏👏👏 great news. Can’t wait!

DippyDame profile image
DippyDame

Brilliant...a light to illuminate dark places!!

Thank you.

TaraJR profile image
TaraJR

diogenes this is such welcome news. Do you have any idea of when it will be published?

diogenes profile image
diogenesRemembering in reply to TaraJR

It'll be a while yet, because our approach needs the greatest care in delivery. One false step, and they will be all over it. But however hard, it has got to be done right.

Nat107 profile image
Nat107 in reply to diogenes

thank you Diogenes this will so helpful for all of us

nightingale-56 profile image
nightingale-56 in reply to diogenes

It most certainly has to be done! And what better group to do it than yours. Thanks to all of you.

Lovecake profile image
Lovecake

Thank you so much for this. 🤩

Really appreciate all your hard work.

Celestialbeing profile image
Celestialbeing

How can we contribute with our stories?

is there a way we can contribute? With accounts or financially?

grauntieannie profile image
grauntieannie

Terrific news, Diogenes! Thank you. Can we subscribe?

AliF profile image
AliF

Brilliant news Diogenes. How do I order an advance copy ? Please also write a press release. This should get some attention/promotion.

dolphin5 profile image
dolphin5

Brilliant - looking forward to it!!! Thank you!!

Lunario profile image
Lunario

That’s fantastic news. I hope we can read it very soon. Thank you! 👍😻🤩

Regenallotment profile image
Regenallotment

👏👏👏👏 and 👏👏👏👏 can’t wait to circulate widely. Could you include a donation link or go fund me for a print version 🌱

CosmicGirl61 profile image
CosmicGirl61

That's fantastic!! 💃💃💃 Well done!! Let's hope it gets the attention it deserves 🙏

RachelP03 profile image
RachelP03

This sounds brilliant, thank you for all you do! Can’t wait to read it and share it!

Musicmonkey profile image
Musicmonkey

Thank you diogenes and team. Looking forward to it.

arTistapple profile image
arTistapple

I am old school. Will there be a real book version? I have no idea how I could disseminate it otherwise. However can hardly wait. Soooo necessary.

Sneedle profile image
Sneedle

This is brilliant. Maybe an opportunity to involve some journalists and create a Big Stink on behalf of so many people who have been made to suffer through what really does look like medical negligence.Thank you. 👍👍

Zephyrbear profile image
Zephyrbear

I am so pleased to see this!!! Like others here, I’ll buy a copy for myself as well as one for the GP surgery and the endocrinologist department I attend! Thank you!

pennyannie profile image
pennyannie in reply to Zephyrbear

How interesting -

It's encouraging that you have an open minded doctor and endo team :

My doctor, despite acknowledging she knew little about Graves and knowing that I was dyslexic refused her copy of Elaine Moore's first book - Graves Disease - A Practical Guide - but I soldiered on and the rift between us continued to widen.

I now self medicate and stay away !!

Zephyrbear profile image
Zephyrbear in reply to pennyannie

The reason my GP and endo are ‘open minded’ is because even they realised that I probably knew more about my condition than they did (in fact one GP even went so far as to tell me so) and were quite prepared to go along with my own regime. Thankfully, they saw a well and well-educated patient before them and were prepared to support me. But my ‘education’ has been entirely down to what I have learned through this forum and ThyroidUK and without it I would still be zombiefied under their terrible TSH/T4 monotherapy led ‘treatment’.

pennyannie profile image
pennyannie in reply to Zephyrbear

Ditto !!

Hopefully the guidelines where you are being treated are on elastic !!

res88 profile image
res88

You might find some interesting information in Dr Donna Hurlock’s book ‘Patient Focused Thyroid Treatment’.

BlueKeith profile image
BlueKeith

I would be interested in reading it

Yervaud profile image
Yervaud

Can we be of assistance?

JUUJOO profile image
JUUJOO

Brilliant, thank you so much. Amazing.

Meno56 profile image
Meno56

Thank you to everyone who is contributing - this forum is amazing. I can’t wait for the book! 🤩

endomad profile image
endomad

Perfect timing. After 8 years of almost uninterrupted T3 only treatment and thyroid resistant, my Dr retires end of this month. He has given me a 12 month prescription to give me time to break in a new dr.

Breadman profile image
Breadman

Wow, thankyou!!! I was rushed into having a total thyroidectomy in Feb 2023 and have had no support whatsoever since then, been left completely to my own devices. Consultant is impossible to get hold of, no one picks up the phone and the secretaries don't reply to emails. Thank God I at least have this amazing forum. Can't wait for the ebook.

Hashiboy profile image
Hashiboy

That's fantastic news and I can't wait to read it. People might also be interested to know Dr Antonio Bianca (former president of the US Thyroid Association) had recently published his book Rethinking Hypothyroidism that explores the rise of T4 monotherapy and reliance on TSH and the increasing scientific evidence against this.

helvella profile image
helvellaAdministratorThyroid UK in reply to Hashiboy

I don't think Bianco has changed his stance sufficiently on TSH and continues to see it as appropriate in circumstances where many others think it inappropriate.

TaraJR profile image
TaraJR in reply to helvella

Agree. But, it was a huge step forward for him to come out and say they've been wrong in the past. I'll try and ask the TSH question on his webinar tonight! (The Thyroid Trust hosting)

helvella profile image
helvellaAdministratorThyroid UK in reply to TaraJR

Have you got a link for that?

TaraJR profile image
TaraJR in reply to helvella

Yes, below. I thought it had been posted, but I'll do a quick one now, in case

thyroidtrust.org/events-lis...

helvella profile image
helvellaAdministratorThyroid UK in reply to TaraJR

Even if it has, people getting to this point in the thread might well be asking "Where is that?" :-)

Thanks.

Hashiboy profile image
Hashiboy in reply to TaraJR

thanks, just booked a ticket

Hashiboy profile image
Hashiboy in reply to helvella

Oh, helvella that's good to know. I've found him helpful to give me confidence talking to my GP and Endo. He is quite T3 friendly and one thing I found very helpful was that he published a paper showing that T4 treated patients with normal range TSH have measurable symptoms like poor blood fat control, higher weight and lower mood that are significantly worse than a matched non hypothyroid population ( i.e. we're not making it up). But totally take your point.

helvella profile image
helvellaAdministratorThyroid UK in reply to Hashiboy

He has moved and said things which needed to be said. But in my view, has not gone far enough and acknowledged the science fully.

lutepavan profile image
lutepavan

Excellent! Looking forward to this.

Haddockfishface profile image
Haddockfishface

Brilliant news and thank you for all your hard work.

jgelliss profile image
jgelliss

Thank you beyond Diogenes. It's been a long and a waited information that both Dr's and thyroid patients need to know and be made aware of for the thyroid patients to feel as well as possible. Thank You and Best Wishes for us all.

BonnieG123 profile image
BonnieG123

An important writing for sure. Thank you.

Peyret profile image
Peyret

I guess I'm in the camp that the figures never lie, now whether TSH is the right figure to track I think is very open to debate. Our local T3 levels vs whatever our serum levels (fT3) I suspect it the important bit. I'll suggest that fT3 is almost irrelevant.

diogenes profile image
diogenesRemembering in reply to Peyret

That's the opposite from right. Total T3 can be misleading because of the wide differences in the transport protein levels in individuals which carry that T3. The more protein, the more T3 load is needed to produce a given FT3. Andthe same effects in the opposite direction. FT3 is needed to detect overproduction of T3 (hyperthyroidism), but is suspect in nonthyroidal illness where it can be low. It's no good for untreated hypothyroidism, but is for monitooring treatment, be it T4 only, combination or T3 only. We aren't numbers and numbers do not define us.

Peyret profile image
Peyret in reply to diogenes

We'll agree to disagree. Most T4->T3 is done locally and not released into the serum. I will agree that T4 ->fT4 is another complexity, hence my comment are "we" measuring the right number.

ZeilaJee profile image
ZeilaJee

Huge job. Good luck and

Thank you!

mrtodd profile image
mrtodd

O wow…. Fantastic

Dakie profile image
Dakie

Fantastic!, I am so overwhelmed by what's right and what's wrong concerning underactive thyroid, diagnosed almost 2 yrs ago and feeling worse than ever.

Hollybushroad profile image
Hollybushroad

Sounds fascinating. Will this be available in book format. I'm a bit old school and a bit of a dinasour really

poppyflower1 profile image
poppyflower1

Absolutely fabulous! You are brilliant! CAN'T WAIT! THANK YOU.

juanitamc profile image
juanitamc

I can’t wait for the book

TRbo profile image
TRbo

amazing, so needed, thank you.

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