What do I do now my TSH hasn't risen and Endo said he would only prescribe T3 if my TSH level rose after reduction of Levo?

[feelold]

I am due to go back to my endo at the end of the month. I have had all the usual tests done for arthritis, celiac, short synthesin, sleep apnia and all have come back negative. Since being asked to reduce my levo the pains in my legs have reduced but I have put on nearly a stone in weight in just 2 months, my memory is still terrible and I am always tired. I have swollen ankles, knees and pains in ankles, knees and hands. Any suggestions on what I can say when I go for my appointment?

[shaws Administrator]

This is a scientific paper which your Endo may like to peruse:-

web.archive.org/web/2010073...

This is what Dr Toft, who was President of the British Thyroid Association stated in an article in Pulse Online:-

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

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).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

email [e-mail] if you would like a copy.

[feelold]

Thanks shaws I will have a good read of this and highlight the key points that pertain to my case before I give it to my endo. I do not know whether it will do any good as he has already told me he follows the guide lines, but I will give it a go. If that doesn't work then I will have to go about prescribing my self as I cannot continue like this for much longer.

[galathea]

Hmm, ask him to tell you which guide lines he follows.... In the uk, there no official NICE. Guidelines..... Only a bunch of nonsense dreamed up by some group of Self appointed experts. NICE guidelines take in to account the views of patients, medics and evidence.....

He is free to follow any guidelines he chooses including those from abroad if he can justify it..... Which he can, because there are no uk guidelines.

[feelold]

Oh well that's reassuring Galathea. He may of mentioned them to me but having a head full of cotton wool (or it feels like it) I struggle to remember exactly what he said. I do remember him saying something about the USA following the same guidelines. I will ask him to explain who set these guidelines up. Thanks