Direct measurement of T3 likely vital say resea... - Thyroid UK

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Direct measurement of T3 likely vital say researchers

FAB-jellybean profile image
13 Replies

This may have already been shared but I just came across an article about a new study that has stated that "It is important to note that the more typically measured biomarkers for thyroid function (T4 and TSH) are poorly linked to free T3 levels," Lawton and colleagues wrote.

The ratio of TSH:T4 explained only 1.7% of variation in T3 levels, they noted, which suggested that TSH and T4 may not be accurate surrogates of free T3.

Thus, "direct measurement of free T3 is likely vital to properly stratify the effects of HPT-axis variation," they maintained.

"Improved methods for measurement [of T3] and further investigation of the role of free T3 in clinical conditions may be high yield," according to the researchers.

The full published study is in the article but this is a quicker, easy read. Link below. Can we dare to imagine that this is a glimmer of hope that we are finally getting somewhere?? As someone who was diagnosed with fibromyalgia when in fact I had low T3 syndrome that was picked up by a rheumatologist in 2016 but never followed up by anyone (only found out when I got a copy of my medical notes a year ago). I was finally prescribed T3 2 years later in 2018 after researching myself and fighting my case with my GP for an endo referral. And now on an almost optimum dose after a wobble when I started HRT (info in my profile Bio). But the difference in my wellbeing has been like night and day. It would be really nice not to have a fight at every blood result about my <0.1 TSH level but I think that's going take an extra level of understanding.

medscape.com/viewarticle/di...

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DippyDame profile image
DippyDame

This makes me see red.....again!

They are restoring/ reinventing a wheel which has lain buckled in a ditch for the last 50 odd years.

Improved methods for measurement [of T3] and further investigation of the role of free T3 in clinical conditions may be high yield," according to the researchers.

My surgery routinely included FT3 in testing until 2000 for the obvious reason that it is the active thyroid hormone and one of the most important hormones in the body.

The powers that be thought they could simplify testing so decided TSH was the gold standard test.....the beginning of problems for many thyroid patients who for one reason or another had an impaired HPA -axis or poor absorption.

Our now departed and much missed diogenes, wrote the following -

thyroiduk.org/testing/histo...

I continually rant about the lack of FT3 tests because it was that in part that led me to decades of ill health.

Adequate cellular T3 is vital to good health

Thyroid disease is so badly treated now that, I would suggest, it is reaching crisis level....one only needs to read the posts on this forum to learn and understand this.

Medical schools need to change their teaching methods relating to the thyroid gland, it's function and thyroid disease....it has to happen!

Right now I'd suggest we thyroid patients are hard up against medical, financial and political will and until that barrier is breached nothing will improve.

Prof Bianco is reported as saying that "we need to do a better job of developing a precise assay for T3"

Indeed!

The difficulty, as I see it, is that in testing we depend on serum levels of inactive T3 ( FT3) which for most people translates/ equates to cellular/ tissue level causing no problems....but not for everyone.

Ideally, measuring cellular/ tissue level would be key because T3 only becomes active once it reaches the nuclei of the cells and attaches to the T3 receptors......but developing that is a near impossible task given the different types of tissues in the body and their different requirements for T3.

Patients with a form of thyroid hormone resistance where T3 does not readily enter the cells - and we have no way of knowing how many there might be - are left in a position where test results are no longer reliable markers. Signs and symptoms and clinical evaluation are all that is left....and the patient has to rely on those to determine a therapeutic dose.

It's a difficult road to travel.

They need a supraphysiological dose of T3-only and that is not an NHS treatment

The late Dr John Lowe, a T3 expert, did considerable work in this field....reading and following that very possibly saved my life.

Just my opinion....I've probably said more than enough enough!!

waveylines profile image
waveylines in reply to DippyDame

Well said Dippy Dame.The madness of thyroid testing and treatment continues it's decline.... It shocks me too. It's not even cost effective to test just TSH as people end up on more and more medications to manage symptoms of under treated or inappropriately or non treated hypothyroidism. It is scandalous.

Then doctors wonder why we become patient experts!!

mstp profile image
mstp in reply to DippyDame

Thyroid disease is so badly treated now we are reaching crisis level.... to me this seems to resonate with the plight of those postmaster at the moment who for years fought unlistened to. Is there any way we can find a good playwright I wonder..?

FAB-jellybean profile image
FAB-jellybean in reply to mstp

This is a very good point!

posthinking01 profile image
posthinking01 in reply to mstp

I said the same that the thyroid scandal is exactly that - in fact I was actually threatened by a Dr who phoned me late at night not giving his name - because I was going for a second opinion - I can’t divulge all that was said because I am still upset about it and too frightened to report it - I was sub clinical and suffered for 15 years before getting help and serious damage has been done to my health which is ongoing !

FAB-jellybean profile image
FAB-jellybean in reply to posthinking01

I'm so sorry to hear about your awful experience but I hope in time you can find the courage to report the incident. These God-syndrome doctors only do what they think they can get away with. I was in the same position for 13 years and by the time I was finally treated my TSH was 150 (no T4 or T3 results but hate to imagine). Additional T3 is helping me now but I have all those years of damage to heal, if that's even possible. Sending you healing hugs.

posthinking01 profile image
posthinking01 in reply to FAB-jellybean

Thank you for your kind reply sorry to hear you suffered too !

Gillybean1 profile image
Gillybean1 in reply to posthinking01

You are not alone, me too, awful nasty mean demoralising ....downright text book bullying. We must pick ourselves , if we can, keep positive, know you are definetely not alone, take notes/dates not names specific, and collate our info. For the sake of others, a time will come. I am sorry you have had to suffer too Postthinking01. Every best wish, G

FAB-jellybean profile image
FAB-jellybean in reply to DippyDame

I hear you and agree with every word. Thank you for your reply DippyDame

1Cazza profile image
1Cazza

you used the same description as I did to my 2 endo’s, have been asked the question 2 times now

Endos. “Can you describe the difference”

Me “yes night and day” .

serenfach profile image
serenfach

I have just sent a 4 page report to WLAMS (the labs in Wales) stating why testing T3 is so important. It contained many links to papers, and how the perceived savings to the NHS do not materialise as the patient still feels ill, and returns to the GP, and is sent to various clinics and further tests, all at increasing cost.

The protocols are in place when to test T3 (TSH out of range) but they dont happen. They also claimed that GPs can ask for T3 to be tested if necessary. So the protocals are not being met, which could be seen as negligence or a legal issue.

I will give them a few weeks to reply, and then take it further. I will let you know.

FAB-jellybean profile image
FAB-jellybean in reply to serenfach

Brilliant serenfach , go you! I'm SW Scotland and very lucky to have so far had my T3 tested at every annual bloods since 2018 because I tell the nurse I need it as I take T3 so need to know it's not over/under. I really hope that becomes regular practice across the UK for every thyroid patient at least annually. Really interested to hear their response. Best of luck.

Sususulio profile image
Sususulio

I would add pharmacists to the list in need of education too, I have twice been told on a pharmacist review that I should consider reducing my Levothyroxine dose. At the time my TSH was over 2, achieved in part by missing a couple of doses in the lead up to review…. Also it seems a lucky dip in terms of whether the labs follow instruction my GP requested T4 but only the TSH came back 💁

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