Endo believes I am hyperthyroid! T3 only 4 years - previously hypothyroid

[Agapanthus]

I have been forced to see an endo to review my T3 only medication due to the issues with CCGs. I thought he was reasonably sympathetic as he seems happy for me to stay T3 only, until I read his letter to my GP, and now I am feeling very upset.

He found my TSH levels 'alarming' as they are under the range and he wants to bring them back in range (though happy for them to be at the bottom). He also was not happy that my last official FT3 showed above range (I was tested unexpectedly just after I took my T3 dose, so retested at my own expense and did not take the dose beforehand and was then under range).

I have agreed to try and lower my dose and see how I am - so far have taken my 55 daily mcg (spread over 3 doses) to 45 mcg x 3 doses, and have to repeat the TSH next week. It is the suggestion that I am hyperthyroid that upsets me, as I explained how carefully I checked my pulse, BP and temperature. Resting pulse was mostly in the 70s, BP low/normal, temp on low side. After 3 weeks on new dose, resting pulse down to the 60s, BP low/normal, temp on low side though rather variable right now so not sure what that is about, but could be the change in the dose. My temp is rarely 37.0

I am being sent off for bone density scanning (I am OK with that), and possible 24 hr ECG to check for tachycardia runs. I would hope that all of these will demonstrate that I am NOT hyperthyroid. I gather that other signs are sleeplessness (I usually sleep fine, except tonight when I am awake due to the anxiety this letter has caused me!), diarrhoea, weight loss, sweating. I really don't have any of these - I did lose weight on T3 but very slowly. I do not have diarrhoea. I do not sweat (do not have to use antperspirants now I am 64). Is there something I have missed here? I know they are obsessed with the TSH but surely they take note of body signs also?

[greygoose]

No, they don't. That's the whole trouble. They have no idea what the body signs are. It's all about the TSH as far as they're concerned. They really don't understand any of it - how it works and what it does to us when we're hypo.

Are you buying your own T3, or is it prescribed? If you're buying your own, just ignore them. Otherwise, just tell them it's your body and you will take the risk - if risk there be!

And I do wish doctors - who should know better! - wouldn't talk about 'going hyper', when what they really mean - although they probably don't know it - is 'over-medicated'. You're hypo, you cannot suddenly reverse the trend and go the other way.

[Agapanthus in reply to greygoose]

Thank you Greygoose. You have put your finger right on it - they certainly should NOT say hyperthyroid in my situation and 'overmedicated' which is what they believe is much more accurate.

Yes, if I was on my own T3 then I would put 2 fingers up to them, but as it is, at the moment I am still trying to hold on to my NHS supply. I have decided that I will take this as far as I can cope with, and then no further. I could even just carry on taking a bit extra for most of the year, and then drop my dose a few weeks before my TSH test is due.

If my body temperature keeps dropping then he really should take that on board as a sign, but I doubt that he will.

[greygoose in reply to Agapanthus]

You could do that, if you don't run out of T3. But, don't give up the struggle. Keep chipping away at his resistance. He should know a lot more about his 'speciality'. It might, eventually, get through to him!

[Agapanthus in reply to greygoose]

I intend to write to him next week with a copy of an article by Paul Robinson who probably knows a lot more about T3 dosing than he does. This endo has never encountered anyone like me before (ha ha!) - never met anyone on T3 only so what does he know? He won't of course be impressed by an article from a mere patient, even if an informed one!

[greygoose in reply to Agapanthus]

That's the problem, isn't it. They despise their patients, and think we know nothing - aren't capable of knowing anything! As if going to med school bestows some sort of magical power on them, that we don't have - they can understand all this, but we can't! I think they confuse med school with Hogwarts!

[Agapanthus in reply to greygoose]

Ah but there are the studies that confirm their teachings on the Holy Grail of TSH.........(actually I only know of one, but I am guessing that there are more?)

[greygoose in reply to Agapanthus]

I don't actually know of any.

[Agapanthus]

endocrine-abstracts.org/ea/...

There is this one, but of course it's not about T3 it's T4, but the endo says it's about the TSH not the thyroid hormone so he believes it when it says it's a problem. Someone posted this study a few weeks ago when I posted just after I had seen the endo.