Thyroid UK
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What have I done?

Think I have shot myself in the foot! When I saw endo in December I offered to try cutting my T3 down from 20mcg to 10mcg per day in view of the excessive cost of the drug.

Received copy of letter that he sent to GP and he is saying that if my blood tests are okay - and he only ever gets the TSH tested, he is one of those who doesn't consider FT3 as being of any importance - then he thinks I should come off it altogether.

This has panicked me a bit because if it is taken away I know it I will never be able to get it again.

I thought he would appreciate me suggesting that I try halving my dose, but I wasn't intending to give it up completely.

I have to get a blood test done in about 4-6 weeks and then he will be writing to GP again:(

13 Replies
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Pity you didn't record the consultation

British Thyroid Association state if you do not wish to stop T3 you do not need to

Some helpful links from Clutter

healthunlocked.com/thyroidu...

Why T3 should not be stopped

healthunlocked.com/thyroidu...

Typical posts after T3 stopped

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

3 likes
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Respond to your GP referring to Endo's letter.

If you are adding T3 to T4, tell your doctor you only agreed to reducing your dose of T3 due to the pressure from the Endo and have given it a try but you feel much better on your original 20mcg of T3.

Also copy and highlight the following to show your GP and tell him that Dr Toft, Distinguished Endocrinologist and Physician to Queen when she is in Scotland and who believes the many need T3/T4 combination.

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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This is dangerous if you've been on T3 or joint therapy for years. It simply is not a sensible option to switch to T4 only and hope as if by magic your body will adjust straightaway. Your body has got used to the therapy you now have, and forcing it to do something different will cause real problems, which unhappily may be unable to be overcome.

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diogenes Do you think this is this the same if you start taking T3 after your body has adapted to LT4 only? Can someone start taking T3 without problems if their FT3 is low even after years on LT4?

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All changes in therapy need time to act. If you are lucky it can be sooner, if not, difficult. There's no simple answer. One's person's experience can't be suggested as applying to someone else. Remember, remember if nothing else; we are all individuals and our responses to change are unique to ourselves. That's true in health or on treatment.

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Thanks for your replies, I wish I had kept my big mouth shut now.

Think I will ignore having the blood test he wants done in 4-6 weeks time and try and string it out until I see him again in April and then say that I only offered to try cutting down and never intended to give it up completely. He is adamant that liothyronine makes no difference whatsoever, so I suppose I was lucky he let me have it in the first place:(

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I wouldn't say you 'offered', it sounds like you felt coerced. Good luck.

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No actually he didn't mention it at all, it was me who brought it up and suggested that I try cutting down.

However, I didn't mean stopping it altogether, it was just really to see how I would feel on half the dose of T3 and thus save the NHS some money.

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Forgot to say, my last two prescriptions for liothyronine have been from different companies - the first Morningstar and the last one from Teva. Has anyone else had this? It was always Mercury Pharma in the past. Does this mean it is getting cheaper?

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There was some discussion on the forum some months ago saying that despite TEVA launching a version of T3, it's cost has not been reduced but I don't know what's transpired since.

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Why did you do it?

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Purely because I felt so bad about the rip off cost of T3 and thought if I suggested trying to cut down it could at least save half of that cost. I didn't think he would immediately think he could stop me having it altogether.

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Silly ... it's not your fault that the purchasing "professionals" in the NHS couldn't get a good deal on a roll of doggy poop bags ...

Why should your health be compromised because some civil servant can't do a decent job - you and your parents paid their taxes and should enjoy what that buys.

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