Quotes that might help your case: Tomorrow I am... - Thyroid UK

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Quotes that might help your case

Portia1974 profile image
20 Replies

Tomorrow I am heading to the GP to request an increase in my dose of Levo and to suggest that out treatment goal should be FT3 right at the top of the range EVEN if that means a suppressed TSH and an over range FT4. My latest results are low but in range and am anticipating my GP potentially being reluctant (but thankfully open to discussing) as to why I feel an increase is appropriate and what my ultimate goal is. I've spent some time compiling some quotes that I think address what I think her concerns might be. It occured to me that sharing them might help someone else in a similar boat and save them some time trawling. So feel free to copy and paste the below if you think they might help your case with your GP/Doctor:

•Many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the ft4 range or a little above. Source: Thyroid UK

•The appropriate dose of Levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5 mU/l. In this case, free thyroxine is likely to be in the upper part of it’s reference range or even slightly elevated – 18-22pmol. Most patients will feel well in that circumstance, but some need a higher dose of Levothyroxine to suppress serum TSH and then serum FT4 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 T3 around 1.7nmol/l (reference 1.0 2.2 nmol/l) Source: Dr Toft via Pulse magazine

•T3 (as made by the body) is about four times as strong (as T4) and is thought to cause most, if not all of the effects of thyroid hormones. Source: Labtests Online

The following are all direct quotes from “Thyroid hormone Replacement – A counterblast to Guidelines. By Dr AD Toft. Published in Journal of the Royal College of Physicians of Edinburgh – 2017

•Guidelines have assumed a clinical and legal importance far beyond that which was ever intended

•We cannot afford to underestimate the level of frustration among patients, exasperated by the “one size fits all” philosophy

•Flawed evidence a suppressed TSH is a risk factor for cardiovascular disease and reduced bone mineral density as serum T3 concentrations were not measured

•Restoring serum TSH concentrations to normal in patients taking LT4 is not the answer for everyone

•A dose of LT4 which restores serum TSH to it’s somewhat wide reference range is associated with lower serum T3 and lower T3:T4 ratios (and) associated with adverse objective and subjective parameters such as increased BMI, lipid profile and feelings of poor health.

•Guidelines (……) have inevitably diminished the importance of listening to the concerns of the patient. One of the foundations of clinical medicine.

•Little attention has been given to a study, important in retrospect, which showed that it was difficult to increase serum T3 into the hyperthyroid range with LT4 unless serum FT4 concentrations were markedly elevated at around 35-40 pmol/l

•Low serum TSH levels in patients taking LT4 did not necessarily indicate overtreatment

•The facts of the matter are that the current guidelines for LT4 replacement therapy in primary hypothyroidism are not fit for purpose.

•We can prescribe doses of LT4 which do result in TSH suppression but are associated with unequivocally normal serum T3 concentrations, as I am unaware that this combination of results has ever been proved a risk factor for atrial fibrillation or reduced bone mineral density, and why should it if the level of the active hormone is normal?

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Portia1974
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greygoose profile image
greygoose

•T3 is about four times as strong (as T4) and is thought to cause most, if not all of the effects of thyroid hormones. Source: Labtests Online

Before using that one, you might like to have a look at this thread:

healthunlocked.com/thyroidu...

Portia1974 profile image
Portia1974 in reply togreygoose

I believe in that thread they are actually technically referencing LT4/LT3 ie the medication no? And dosing requirements of...

Whereas the quote above is about t4 and t3 as produced by the body and that t3 is the more powerful one of the two from a functional point of view. (Rather than x amount of LT3 is equivalent to x amount of LT4) At least that's how I took it. And it also uses the caveat "about" .

Or have I misunderstood?

diogenes profile image
diogenesRemembering in reply toPortia1974

In the healthy body, where T4 and T3 are produced naturally, we can say that 1 unit of T3 is about 5 times or more biologically active than 1 unit of T4. But, considering T4 and T3 therapy, this is a different story. The question we now ask is what amount of T4 do we need to obtain the correct level of T3 for return of health. This is different and unique for each person. And for those who cannot make enough T3 by T4 alone, T3/T4 combination has to be given and this again is unique to each person. There is no formula rigidl;y relating T4 to T3 in therapy. So one can confuse the biological activity of T4 against T3, with the completely different ptoblem of achieving optimal T3 by whatever method of therapy.

Portia1974 profile image
Portia1974 in reply todiogenes

"In the healthy body, where T4 and T3 are produced naturally, we can say that 1 unit of T3 is about 5 times or more biologically active than 1 unit of T4. "

^^^^This is what I interpreted the quote from Labtests Online to be referring to.

"considering T4 and T3 therapy, this is a different story. The question we now ask is what amount of T4 do we need to obtain the correct level of T3 for return of health"

^^^^This is what I interpreted the thread that greygoose shared to be discussing????

So two different things as far as I understand it?

diogenes profile image
diogenesRemembering in reply toPortia1974

Yes

Portia1974 profile image
Portia1974 in reply todiogenes

Ok great. Thank you again diogenes

greygoose profile image
greygoose in reply toPortia1974

Just make sure your doctor understands the difference when you present him with that quote. If he even knows what T3 is!

in reply togreygoose

It's not at all unlikely he doesn't...!

Portia1974 profile image
Portia1974 in reply to

@thecat68 greygoose she's actually pretty good overall and well aware of t3 thankfully. She will step outside of guidelines if I push for it so fairly confident she'll go for this. Previous GPs have been utterly shocking. I'm thankful to have this one. It's more of an informed discussion/debate and a mutually agreed course of action. And while I'd love to have someone who is knowledgeable about everything I'm super grateful to have someone that will at least listen and consider what is put in front of her. (Even if I have to do most of the leg work). Which is a rarity in GPs in my experience.

Thanks for your help as always :)

in reply toPortia1974

That's good as that is often half the battle!

Portia1974 profile image
Portia1974 in reply to

Totally. She's a unicorn really. Completely devoid of ego.

greygoose profile image
greygoose in reply toPortia1974

I'm glad you have an understanding doctor, but you're offering this to others as a means of helping themselves, and not all doctors do know what T3 is. So, your quote has to be made clear, or imagine the confusion that could ensue. :)

Portia1974 profile image
Portia1974 in reply togreygoose

I've made a slight edit that hopefully clarifies for anyone that might misinterpret. People can also read the responses here. I was given to understand though that T3 and T4 do refer to the hormones that the body makes naturally and that when referring to replacement hormone therapy that LT3 and LT4 are used instead (to represent, respectively, Lio and Levo prefixes of the synthetic form of the hormone). Have I misunderstood? Kinda like Dr Toft as quoted above as well.

Portia1974 profile image
Portia1974 in reply togreygoose

Are there really doctors that dont know what t3 is? Or do you think it could be that they are aware of it but simply don't recognise or understand it's importance?

greygoose profile image
greygoose in reply toPortia1974

Not only do some doctors not know what T3 is, I had one that didn't even know what T4 was. Yet he wanted to prescribe me levo!

Portia1974 profile image
Portia1974 in reply togreygoose

Good grief, really? Although I did have one who had to look up what my Sodium Valproate was for so I shouldn't be surprised but heck...

greygoose profile image
greygoose in reply toPortia1974

Yup. Amazing, isn't it. He then had the nerve to tell me that

* women don't have testosterone

* the adrenals have absolutely no connection to the thyroid

* he knew far more about hormones than any endo he'd ever met!

lol

greygoose profile image
greygoose in reply togreygoose

Although that last bit could be true.

Portia1974 profile image
Portia1974 in reply togreygoose

Aaargh! THAT'S the arrogance though isnt it?! I had a Haematologist tell me that he only needed to look at Hb to assess iron status and that iron deficiency had no symptoms anyway. Lol.

greygoose profile image
greygoose in reply toPortia1974

Oh dear. No wonder we're all ill.

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