Has anyone run into this AACE article? - Thyroid UK

Thyroid UK

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Has anyone run into this AACE article?

Kalicocat profile image
14 Replies

aace.com/files/final-file-h...

Here is their recommendations on treating hypothyroidism in non pregnant people:

"Data concerning clinical benefit are lacking to support targeting to reach low normal or subnormal TSH levels in the treatment of hypothyroidism (198,199). As a result, in patients who are not pregnant, the target range should be within the normal range. If upper and lower normal values for a third generation TSH assay are not available, the range used should be based on the NHANES III reference population range of 0.45-4.12."

I've been feeling horrible again, my TSH has climbed from 1.06 to 1.85 and she said no to an increase in thyroid meds and even told me that she is stopping levothyroxine treatment in a lot of her patients based on this f***ing paper. I feel like I might as well commit suicide as my quality of life is in the toilet.

They know beyond a shadow of a doubt that TSH greater than 2.5 causes infertility but IT'S OK for everyone who is not pregnant or planning on getting pregnant? What kind of STUPID logic is that??

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Kalicocat profile image
Kalicocat
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14 Replies
Clutter profile image
Clutter

Kalicocat,

So if you felt better with TSH 1.06 what's the problem with your doctor increasing dose so that TSH drops between 0.45 - 1.06 which is within the AACE recommended range?

Kalicocat profile image
Kalicocat in reply to Clutter

I believe she now thinks that she doesn't have to increase the dose until I am out of range. I'm devastated. She's taking her patients off of levothyroxine based on this article. It's like she's gone insane or something. She's always been an awesome doctor, but now I don't know what I'm going to do. It's impossible to get new GPs here and even more impossible to get referred to an endo unless you're a mystery case that they are having difficulty treating, and then they will usually only see diabetics not thyroid patients.

Clutter profile image
Clutter in reply to Kalicocat

Kalicocat,

Buy Levothyroxine online and self medicate?

Kalicocat profile image
Kalicocat

can I do that in Canada without a prescription? I would gladly but I think I live in the wrong country. Our healthcare is getting worse and worse, they pay for less and less and there are no options for private blood tests or ability to get drugs. If you know how I can do that please pm me.

Clutter profile image
Clutter in reply to Kalicocat

Kalicocat,

You should ask on a Canadian forum where you can order private blood tests.

gabkad profile image
gabkad in reply to Kalicocat

Hi Kalicocat,

I live in Toronto. We cannot import drugs. Even if we want to pay out of pocket for blood testing, without a doctor's requisition we can't get it done. No private blood testing permitted. Neighbouring states in the USA also prohibit private blood testing, such as New York State. There's others but right now I can't remember them. I think Pennsylvania permits it.

Kalicocat profile image
Kalicocat in reply to gabkad

gabkad, I just noticed yesterday that the Cleveland Clinic is in Toronto (I'm 60km north of Toronto), has been since 2006. They have an endo, and I think they are private?? I'm going to call them after Christmas to find out more.

gabkad profile image
gabkad in reply to Kalicocat

Very expensive. The only people I know who are patients there are highly paid executives. Good luck.

diogenes profile image
diogenesRemembering

These guidelines are 5 years old. May not seem much but that is a lifetime , the speed at which new knowledge emerges. Everone is a unique individual, not a category. By that I mean that you personally have your own ideal TSH, whose variation is far smaller than the reference range covering everyone. The GP's fatal mistake is "shoehorn" thinking; that if you are "in range" that is good enough. And the article she quotes is also guilty of "shoehorn" thinking. The individual needs of the patient have been lost to mechanical biochemistry and TSH in therapy is misleading and should only be used to discover if the patient has been taking the medication or not or if they are grossly overdoing it. FT3 control is the only way forward in proper control of therapy, but the present system worldwide still is miles behind the new knowledge.

Kalicocat profile image
Kalicocat in reply to diogenes

Diogenes, you are so right. Everything seems to be going completely backwards with thyroid treatment. That same organization reduced the TSH upper limit to 3.0 in 2003 I believe and stated that endos should target the lower end of the range when treating, and now they've swung further in the opposite direction and by doing so have done a lot of patients a HUGE disservice, all likely based on poorly done studies. I noticed most of these newer studies didn't even test for TG antibodies. I've never EVER had TPO antibodies so if my doctor hadn't tested TGAb last year I'd be on long term disability right now. I had head to toe tendonitis when my TSH was just 4 along with shortness of breath and a whole ton of other symptoms. And I was so weak I could hardly lift my frigging laptop bag.

SlowDragon profile image
SlowDragonAdministrator

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

Strongly suggest you find a new GP

Definitely test vitamin D, folate, ferritin and B12

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

Kalicocat profile image
Kalicocat in reply to SlowDragon

Awesome, thanks for the links!!! My vitamin status has been checked and is either too high (B12 and folate - I've stopped supplementing for now - the Bs were in Magsmart that I was taking for magnesium - I had forgotten they were in there) or is above the recommended lower limit mentioned on this forum for ferritin and vitamin D. In fact I've started cutting back on D as it is still within range, but at the upper end.

jimh111 profile image
jimh111

The extact you quote uses references 198, 199. These papers show no improvement when levothyroxine is increased a little or between a high normal and low normal TSH. The authors misunderstand these papers.

Essentially you take a group of patients who are already on levothyroxine with TSH within the reference interval. The first study shows that if you increase the patients' levothyroxine dose a little, they do not improve. This is reasonable, these patients have presumably been optimised on levothyroxine only therapy according to the standard (really substandard) approach. We wouldn't expect fiddling with their levothyroxine a little to improve matters.

The second study looks at patients with high normal and low normal TSH to see if either group does better. Surprise, surprise there is no difference. Again, patients will have been optimised (not by your doctor!) with a TSH that suits them, within the exisiting constraints. Patients who do well on a slightly higher TSH will be treated accordingly and those who need a lower TSH will tend to be treated with a lower TSH.

Drawing the conclusion that a TSH anywhere within its reference interval will give the same result is illogical and bad science.

Note I'm not proposing levothyroxine only therapy or keeping TSH within its reference interval, I'm just commenting on the research within the parameters it is based on.

Kalicocat profile image
Kalicocat in reply to jimh111

Thanks, I'll take this information as well!!

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