Thyroid Trust Talk - Simon Pearce

[missrees]

Just wondered if anyone else managed to catch this talk - there's a follow-up coming soon - with Endocronologist Simon Pearce? Any thoughts?

[diogenes Remembering]

I thought this:What (except for item 6) a load of absolute, gold-plated, olympic-medalled rubbish! Item 1): rationalising and improving blood tests from different manufacturers is a desirable outcome, but it isn’t the accuracy of the figure, it’s the use you put it to! Pearce simply can’t grasp the fact that in health, whatever your body conversion efficiency of T4-T3, the thyroid will compensate, until it dies and only then will a problem arise in T4-only-therapy. All of us are genetic mutants in one form or another. FT3 does not significantly alter over a day in health: it only rises by about 10% in the middle of the night, when you won’t be measured anyway. If the thyroid is destroyed and you are on T3 only, then the time between the T3 "spike" on taking T3 and the body response will be quite large. This means that the violent fluctuations in FT3 are not mirrored by the body response which will be "damped down" to a much smaller variation in response. The combination trials so far done aren’t good enough to say anything. Item 5 is just an opinion not backed up by observation - merely a biassed thinking. Finally if the T3 conversion problem is mythical then Pearce is a dragon!. There are loads of references that make him look a fool, but he conveniently skates away from them. I will never forget hs diatribe as a reviewer when we sent our paper “time for a reassessment of the treatment of hypothyroidism" to BMJ. I wondered if he was on something, I certainly wouldn’t take it!

[missrees in reply to diogenes]

Thank you Diogenes! I thought the same. In fact, I went away really angry - felt that he had cancelled Thyroid problems entirely - that we are waste of time and have no real issues - most of us are taking medication that we don't even need and wasting NHS money better spent on more deserving illnesses. No point in blood tests. Wonder why he's working in the field if he's so disinterested in the subject. Awful.

[tattybogle in reply to diogenes]

So if he say's his objection to taking oral T3 is the unphysiological spike , but you say the blood peak is damped to some degree before its action in tissues.. and in one of his answers in the link he admits there isn't a nice way to measure tissue T4/3 levels......

"Lorraine: How can you be confident that T4 in the blood reflects tissue T4? "

"We are not confident of that. As well as measuring TSH which reflects pituitary T4 concentration, we can measure a liver protein called SHBG which reflects thyroid hormone action on the liver. But short of putting your brain or heart in a blender, we can’t accurately measure tissue T4 levels, so we don’t really know."

......... then (assuming the same is true for knowing tissue T3 levels), where's his evidence that T3 spikes do any harm at all to tissue ? surely he can't have any ?

And if there's no evidence that spikes are harmful , how can he use 'unphysiological spikes ' as a justification for not trying T3 on people, to see if it does help symptoms?

Surely having as much (very poor )evidence as he likes, showing "T3 doesn't help lots of people" is no reason to not try it anyway it if may help some ?

.........there were always some people in those studies it did help .. they just weren't in the majority

If there's no harm , what's the problem with trying it ?

Has he found a bit in the NHS ethos that say's "if you're not in the majority, we don't need to try and help you, even if we can ?"

(when i thought of that 'in my head' it was a nice concise argument ..then i tried to write it... and now it isn't, sorry )

[missrees in reply to tattybogle]

Well done for writing it out - yes all of that situation. It’s very confusing to hear that from someone that’s supposed to be on our side. I will go to next session out of curiosity to what he’ll talk about and would like to come up with an argument for him - might use your explanation if I may? Thanks Tattybogle!

[tattybogle in reply to missrees]

please do . good luck with making it come out as a pithy sentence.... there's one in there somewhere.. although i'm sure he'll not give a straight answer, however good the question ..... be nice to make him dance for his supper though.

edit . if his defence is that the NHS can't afford to pay for a hopeful treatment for a minority due to the vast expense of T3 , then since it's just been judged to be rip off by the CMA investigation... the NHS should refuse to pay so much and buy a job lot from Germany.

[tattybogle in reply to missrees]

for his next talk he seems super exited about a paper proving some of us can't tell the difference between one dose and another ....

So What ?

What's that got to do with treating anybody who can tell the difference ?

[shaws Administrator in reply to tattybogle]

This phrase "paper proving some of us can't tell the difference between one dose and another ". Well, we the patients certainy can tell the difference and he talks rubbish about T3 'spiking'. It sounds as if he has swallowed something that made him spout rubbish.!!!!

For me, my body's preference is T3 - it doesn't "spike" and I am healthy and happy on my dose of T3. T4 - my body dislikes and causes terrible palpitations, so much so that the Cardiologist was contemplating putting an implant in heart 'to see what was going on'. T3 the following week calmed heart down to a normal pace and I've been on it ever since. My health is stable and have no unpleasant symptoms that I had on T4.

Thank God we've got scientists like yourself who are more interested in helping relieve clinical symptoms and restoring health, instead of someone who wants to be 'noticed' due to the comments when all they want is RECOGNITION of some sort.

[AS14]

Professor Pearce is my doctor for a parathyroid problem he used to treat my hypothyroidism too, I stop letting him treat my thyroid few years ago. Hes very good with the parathyroid problem keeps me pretty well, no issues at all but im afraid I cant say that for thyroid treatment.

He didnt seem to want to know about my thyroid symptoms, was dismissive when I asked him questions, eg my low FT3 and just kept saying as long as my tsh remained at 2 not to worry about the “ other numbers”.

I think he was surprised that I had some clue as to what I was saying but dismissed everything I said any way.

My last appointment for thyroid with him I asked for a trial of T3, it was a flat out no it wouldnt work for me. I pointed out that despite increasing doses of levothyroxine while my FT4 raises my low FT3 barely moves and my TSH lowers and he wont let it get any lower than 2 anyway.

Tried several times to talk him, it was a waste of time and after he stared down at my notes during my very quick appointment I thought its a waste of time trying .

I asked for my appointments to be with the parathyroid nurse after my last appointment,

[missrees]

How do you medicate your hypothyroidism now AS14? Do you take T3 and does it help you?

[AS14 in reply to missrees]

Im using ndt, self medicating. Im not well yet though need to fix my low iron

[humanbean]

Is there a link to this talk or a transcript?

[missrees]

Here's the upcoming talk

thyroidtrust.org/events-lis...

And here are some of his answers post last talk:

docs.google.com/document/d/...

[tattybogle in reply to missrees]

Thanks for the link to last talks answers .. while reading it the word 'weasel ' kept coming to mind ... can't think why .

[Gingernut44 in reply to tattybogle]

I haven’t read them yet, I prefer my blood pressure where it is and not so high that steam can be seen coming out of my ears

[Hidden in reply to tattybogle]

I’m afraid reading his answers to the last talk left me furious : after listening to the talk I was simply stunned.

What really made me angry in his answers was the statement that patients who ‘think they need T3’ are selfishly depriving more needy patients from access to the NHS budget . He cited CF patients. My closest friend has 2 children with CF - she would be truly horrified that he said that. If this is truly his thinking then I would deem him unfit to practice medicine.

Not for the first time in life, I am confronted by someone whose arrogance exceeds his knowledge and compromises his ability to deliver therapeutic results. I won’t waste my time listening to him again.

[ElephantShrew in reply to missrees]

i did not know about the answers doc! thankyou so much for linking.

That's a... interesting read

[Hoxo]

I came looking on the forum to see if anyone had mentioned this. His second talk due soon.

[Hoxo]

He says that the best way to monitor t3 levels for patients on T3 medication is by measuring TSH. I though recent studies show that there is no inverse TSH:FT3 relationship? Has he got this wrong?

[diogenes Remembering in reply to Hoxo]

Yes

[Hoxo in reply to diogenes]

It would be great if someone could point out that research paper to him on the questions session.

[diogenes Remembering in reply to Hoxo]

This one may do so. It compares FT3 in the same patient(s) with and without hypo symptoms. The graph shows that the position of FT3 change and its magnitude between the two states is entirely individual and shows no general trend.

Functional and Symptomatic Individuality in the Response to Levothyroxine Treatment

September 2019Frontiers in Endocrinology Follow journal

DOI: 10.3389/fendo.2019.00664

Projects: Assessment of T4/T3 control of TSH and percentage of total corporeal T3 contributed directly by the thyroidSyndrome TComplexity in Medicine: Practical Problems, Their Definitions, Models, and Solutions

Rudolf Hoermann,John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich.

[knitwitty in reply to diogenes]

Diogenes is there any way you could attend the next talk and bombard him with some pertinent questions, you seem to have a far superior understanding of the problems we hypos face.

[diogenes Remembering in reply to knitwitty]

Unfortunately not. I'm 86, have the knee joints as supple as a bronze statue and looking around and down, feel that only the brain is functioning properly.

[knitwitty in reply to diogenes]

Bless you, so glad you make the contributions you make they are very helpful to us all, delighted to hear your brain is functioning so well and firing on all cylinders.I guess I shall just have to fume at my computer whilst he spouts his nonsense like he did in the last talk.

Thanks for all you do.

[Buddy195 Administrator]

I joined the first session on line but my questions were not answered, so I wouldn’t hold out for a response. I get the feeling the ‘speaker’ cherry picks the questions he’d like to answer!

[Gingernut44 in reply to Buddy195]

Of course he does

[ElephantShrew in reply to Buddy195]

just to check but are your questions included in the doc linked above? my questions weren't answered in the webinar either but in the document he has answered my questions

[Buddy195 Administrator in reply to ElephantShrew]

Thanks. I will recheck, but did fill in the feedback form afterwards.

[Hoxo]

Just seen on Twitter that he has had a hemithyroidectomy for a cancerous thyroid nodule. I wonder if being on the other side of the Endo clinic consultation desk will change his views and I wonder if he’ll think thyroid medication no more than a placebo now.

[Hoxo in reply to Hoxo]

twitter.com/simonhspearce/s...

[tattybogle in reply to Hoxo]

Well, Well..... this could be be interesting . ( and he is being treated by Newcastle Endocrinology dept.... that should be interesting too.)

..... of course he might be just fine with just half a thyroid,....

and if he's not, he might find Levo is just wonderful ....

... but if he doesn't , will he be man enough to admit it ?

I'd like to say we welcome him with open arms into the 'thyroid' community .... but i'm finding it a bit difficult to get the words out .

<sarcasm ON>

It would be a great loss if 'imaginary' fatigue symptoms and a 'normal ' TSH meant he was unable to continue his wonderful work.

<sarcasm 0FF >

[Hoxo in reply to tattybogle]

His tweets said thyroid cancer so I guess he will have a suppressing dose of a Levothyroxine if that’s what they still do.

[tattybogle in reply to Hoxo]

oh yes .. didn't think about that side of things, i don't know much about the cancer implications if only half was taken out.

[missrees in reply to Hoxo]

Fantastic detective work @Hoxo - how interesting!