Advice needed re Levo.: I've been quite happy on... - Thyroid UK

Thyroid UK
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Advice needed re Levo.

beaton
beaton

I've been quite happy on T3 only for a few years now but about a year ago locum doctor didn't like my low TSH and referred me back to endo. A different one than I had seen before. She wanted to change my prescription, lowering T3 and adding T4 until I was on T4 only. She didn't tell me this at the time but put it in writing to my gp. So I never changed my prescription and carried on as I was on T3. This has flagged up now so I was called into my own gp. He wants me to add T4 to keep the endo. happy and so the bloods come back ok. We agreed to add 25mcg. T4 and reduce T3 from 80 to 60 mcg.

Last time I asked what is T4 neede for I was told heart. This time I was told bones.

So still not sure if adding T4 will be good for my health or not and I've just read on Thyroid uk that too much T4 speeds up bone loss.

So confused. Can anyone help please.

7 Replies
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SeasideSusie
SeasideSusieAdministrator

beaton Well I think they're talking out of their bottoms. Presumably you were feeling fine on T3 only so why change your meds. Oh yes, because TSH was low. Well, they don't know much then because taking T3 will suppress TSH. The only test result that matters is FT3. If that is in range then you are fine.

And by reducing your T3 by 20mcg, which is roughly equivalent to 80mcg thyroxine, and adding in 25mcg thyroxine, they have in fact lowered the level of thyroid hormone you will be getting.

My guess is that it's something to donwith how much T3 costs but of course they won't admit to that.

Personally, if I had been happy on T3 and they wanted to do this with my meds, I would be insisting on a FT3 test and as long as that was in range I would refuse to change my meds. If that caused them a problem I would say I would self source T3 and continue as I am and would they continue to monitor my level.

If you agree to what they want it will probably make you unwell. If you feel OK and want to stay that way you need to fight your corner.

beaton
beaton in reply to SeasideSusie

Thank you Susie, my thought exactly. Never got on with the endo. when I met her. She wouldn't answer questions and had a very high handed approach to patients. I think my GP is just toeing the line. I did say if my T3 was stopped I would get it elsewhere.

Next time a doctor makes up some excuse why being on T3 has harmed something politely request they test for that specific problem, request a specific test e.g. bone profile test with vitamin D, electrocardiogram and point out that logically as you have been on T3 for years the damage will already be obvious.

They are very unlikely to do the tests especially if you can think of an expensive one for them to do due to cost and the fact you don't need it.

If they do do a test it is likely to be a cheap alternative so post a new thread here and someone should find evidence to show why the test is ineffective.

beaton
beaton in reply to bluebug

Great idea thanks Bluebug.x

Go by how you feel not numbers. TSH is useless when you are taking any form of thyroxine.

Thanks Glynirose, I agree but how do I get through the blood test? I know if I don't agree (to some extent.) they will take my T3 away. I've already told my gp how I feel and that I am prepared to buy T3 on the internet. He is under pressure from the Endo. to conform regardless of his own feelings on the subject.

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