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
Remembering
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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.
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. 👍👍
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!
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.
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’.
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.
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.
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.
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.
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)
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.
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.
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.
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.
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.
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.
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lost in translation...
