“Will be based on TSH and I would not use free hormone levels in primary hypothyroidism”

[Wired123]

Contained in a clinical letter from my mother’s NHS Endo.

Really surprised of the lack of interest in free hormone, TSH is king for this guy.

Idiot!

What can I send him back to change his mind.

[shaws Administrator]

I think the Endo's statement informs us that some appear not to understand how hypothyroidism affects the patients. Or how to diagnose a patient without blood test. Before blood tests became the No.1 for diagnosing hypo patients, we were diagnosed upon our clinical symptoms alone and given NDTs (natural dessicated thyroid hormones) made from animals' thyroid glands and it contained all of the hormones a healthy gland would do.

There were no blood tests either but we had small increases in NDT until symptoms resolved.

[Wired123 in reply to shaws]

Indeed, complete incompetence by this prat!

I’m hoping somebody has done literature that I can send him relating to TSH being a poor marker.

[shaws Administrator in reply to Wired123]

The more pity is that he seems to have been taught that it is the correct way to diagnose/treat patients, whereas we - the patients - need our clinical symptoms to be of concern and the aim should be that they're resolved. It does take small increases of levo to be gradually increased until we feel well with no clinical sympitoms.

I hope you are able to resolve your symptoms.

[Wired123 in reply to shaws]

The only saving grace is that I gave my mum a detailed letter with her history and symptoms and asked for T3 to be prescribed.

He accepts she’s one of the “small number” of patients who don’t do well on T4 only and therefore T3 trial is indicated.

Along with 3 paragraphs of why T3 is bad, dangerous and not supported by clinical studies!

So he’s going to trial T3 but is most likely going to stop her when her TSH falls further due to T3 addition.

Charlatan!

[Hidden in reply to Wired123]

Why is it though that whenever they talk about a "small number" who don't do well on T4 it never includes the patient sat in front of them!?

[Wired123 in reply to Hidden]

They look at it as similar odds to winning the lottery!

[Hidden in reply to Wired123]

Yes, as if they don't expect to come across anyone who doesn't get on with levo in their whole career!

[Hidden in reply to Wired123]

Sorry - skim read. I thought he was treating you by TSH but not your mum!

[shaws Administrator in reply to Wired123]

We need our TSH to be 1 or lower. He should also test Free T4 and Free T3 at the same time.

My TSH had to reach 100 before I was diagnosed. None of the doctors or specialists I saw had any idea of what was making me symptomatic. Whereas all of our 'older GPs' knew all about clinical symptoms and patients given a trial of NDTs (now withdrawn) and 'NDT' in particular, resolved many patients' clinical symptoms and there were no blood tests but the skill of the doctors. NDTs)natural dessicated thyroid hormones) was the very original replacement from 1892 onwards and it saved lives. Whereas before NDT we just died.

Mum should have blood tests at the earliest a.m. but should not take her thyroid hormone replacement before the test and allow a gap of 24 hours between last dose and blood draw.

[diogenes Remembering in reply to Wired123]

Here is one:

This is the title and abstract. It is available in full to download

Recent Advances in Thyroid Hormone Regulation: Toward a New Paradigm for Optimal Diagnosis and Treatment

December 2017Frontiers in Endocrinology 8 Follow journal

DOI: 10.3389/fendo.2017.00364

Hoermann R, Midgley JEM, Larisch R, Dietrich JW

In thyroid health, the pituitary hormone thyroid-stimulating hormone (TSH) raises glandular thyroid hormone production to a physiological level and enhances formation and conversion of T4 to the biologically more active T3. Overstimulation is limited by negative feedback control. In equilibrium defining the euthyroid state, the relationship between TSH and FT4 expresses clusters of genetically determined, interlocked TSH–FT4 pairs, which invalidates their statistical correlation within the euthyroid range. Appropriate reactions to internal or external challenges are defined by unique solutions and homeostatic equilibria. Permissible variations in an individual are much more closely constrained than over a population. Current diagnostic definitions of subclinical thyroid dysfunction are laboratory based, and do not concur with treatment recommendations. An appropriate TSH level is a homeostatic concept that cannot be reduced to a fixed range consideration. The control mode may shift from feedback to tracking where TSH becomes positively, rather than inversely related with FT4. This is obvious in pituitary disease and severe non-thyroid illness, but extends to other prevalent conditions including aging, obesity, and levothyroxine (LT4) treatment. Treatment targets must both be individualized and respect altered equilibria on LT4. To avoid amalgamation bias, clinically meaningful stratification is required in epidemiological studies. In conclusion, pituitary TSH cannot be readily interpreted as a sensitive mirror image of thyroid function because the negative TSH–FT4 correlation is frequently broken, even inverted, by common conditions. The interrelationships between TSH and thyroid hormones and the interlocking elements of the control system are individual, dynamic, and adaptive. This demands a paradigm shift of its diagnostic use.

[SeasideSusie Remembering]

Wired123

It's the same with my GP, she will only consider TSH and even if I point out FT4 and FT3 are well within range she just rabbits on about "your TSH is suppressed, you are overmedicated". Unfortunately, the only one who did take the frees into account - the Advanced Nurse Practioner who was exceptionally good - has now left so I'm back to where I was before.

The only thing I have that might be anywhere near useful is Dr Toft's article (Dr Toft, past president of the British Thyroid Association and leading endocrinologist who stated in Pulse Magazine - the professional magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He confirmed, during a talk he gave to The Thyroid Trust, that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw(Not working as expected?)

You can obtain a copy of the article by emailing ThyroidUK:

[e-mail]

print it and highlight question 6 to show this doctor that a leading endocrinologist says it's T3 that's more important than TSH.

[Wired123 in reply to SeasideSusie]

Thanks for that, she’s now on T3 so it’s going to be more difficult as her TSH will plummet!

[SeasideSusie Remembering in reply to Wired123]

OK, so if she's on T3 then Dr Toft's quote is not appropriate, it's for patients on Levo only.

But when she's on T3 then the endo who is prescribing it should know what T3 does to TSH and he should know how to interpret blood tests when on T3. If he doesn't know this then he has no idea and shouldn't be prescribing it.

I had a suppressed TSH for many, many years when on Levo only but from the records I've kept for the last 20 odd years it seems that it may be because my FT4 was always high, often over range, because I never felt well and GP kept increasing Levo dose.

[Wired123 in reply to SeasideSusie]

Well absolutely if you read my response to Shaws above you will see the other stupid comments the Endo made yet he’s prepared to prescribe T3 but wants to monitor using TSH.

This is madness and further compounded by the fact she’s Hashimoto’s which means TSH fluctuates at random anyway!

[SeasideSusie Remembering in reply to Wired123]

I despair of them every understanding how to treat hypothyroidism.

Local chap here (my son's friend), same surgery as me, just had a couple of thyroid tests. TSH has come back as 10. GP says nothing to worry about 🙄

My son has told him to get a print out I'll see what I can do to help him.

[Wired123 in reply to SeasideSusie]

TSH of 10 is disgusting! GP needs to be fired for even suggesting there’s nothing to worry about and not offering treatment.

Can you imagine a lawyer advising their client that there’s nothing to worry about when the client has been asked to appear in court?!

[nellie237 in reply to Wired123]

This Endo isn't hiding the fact that he's setting her up to fail is he?

I think I'd have to 'call him on that' if he doesn't monitor FT3, FT4 along with TSH.

It is cruel when he has acknowledged that Mum is a poor converter.

I'd call him on that too, when he tries to cancel the trial due to TSH.

[Wired123 in reply to nellie237]

Funnily enough she had a T3 trail 15 years ago, put on a dose of 20mcg and couldn’t tolerate it so was taken off.

You’re right this again looks like a trial where you are set up to fail.

These people are evil.

[nellie237 in reply to Wired123]

Mmn, Hormones...........tricky stuff...........I don't think meds can efficiently replicate what our bodies naturally do with hormones...........no on/off switch on autopilot, with meds. I don't think 3 months is anywhere near long enough to evaluate either, and I'm just a Levo bod.

"You’re right this again looks like a trial where you are set up to fail". Maybe, we are being too cynical.........Maybe those 3 paragraphs are because he needs Mum to state that she understands and is willing to accept the 'risks'. Also shows that Mum is listening to what he has to say...might help.

[Wired123 in reply to nellie237]

It’s hard with all the brain fog 😂

[Benos123]

The History and Future of Treatment of Hypothyroidism!! ncbi.nlm.nih.gov/pmc/articl...

This a historical reflection on this matter published in 2016 - and which includes:

"In a call to the public, a 1997 British Thyroid Foundation newsletter asked readers to recount personal history of residual hypothyroid symptoms. More than 200 patients responded, 54 of whom specifically mentioned that they did not feel well despite normal serum markers of thyroid function. Because of this surge in symptomatic patients, some clinicians advocated titrating dose by symptoms rather than serum TSH, reminiscent of the period before the 1970s".

and now as your curiosity will surely get the better of you, right down towards the end and just beforethe Footnotes and References there is a well set out and informative history entitled "Trends in Treatment for Hypothyroidism" and which covers the period from 1929 up to 1996.

Enjoy (and I'll ask you questions later) LOLs!!!

[Wired123 in reply to Benos123]

Brilliant

[Luvvy64]

Hi I’ve attached a link to the petition that was brought to the Scottish Parliament in 2013 I think it was and here’s the inventor of the Thyroid function tests pointing out the issues with using it as a sole diagnostic tool!!! fb.watch/8XFq3DF1Qp/

[Poppy_the_cat]

Brain transplant!!! Sorry not wishing to seem flippant as it's clearly a very real situation, but the level of conceit and genuine ignorance that pervades is staggering amongst these so called experts..At a loss to know what to say.

I empathise totally 😔😔😔

[Bearo]

Given that your mum couldn’t tolerate the Leo she was prescribed years ago I hope she will be able to take it slowly with a smaller starter dose this time, as is frequently advised on this site.