Thyroxine Doses

Hi Ajs,

So I am no expert but 0.13 sounds pretty good to me! My GP has explained it pretty well to me before. So basically without a thyroid we only have so much thyroid hormone in our bodies supplied by our pills, once we have used that up the TSH increases asking for more hormone for our body basically. If you needed to increase your TSH levels then yes you would decrease your levothyroxine dose. Can you speak to someone at the hospital, maybe your consultant? The maths as you have written it doesn’t seem to add up so I can see why you would be confused. I never just go by what my GP says, I always speak to my specialised thyroid Macmillan nurse who is amazing and always has been! X

Thanks Lydia245.

I'm really pleased it's not just me!

I've emailed the nurse at the hospital, but haven't had a reply yet.

I may try to phone tomorrow.

Thanks again.

I find the numbers stuff really confusing too! My consultant wants my TSH to be 0.2 or less. Got to admit I'm struggling with exhaustion and lethargy since my TT in May, and not sure if my dose of thyroxine can be adjusted. Going for a blood test next week, so we'll see.

Was the nurse helpful AJS?

Hi Alison!!

Im so glad you have posted!! I can't believe it's been 3years since my thyroid diagnosis and I'm still being under my consultant care. She is gave  me a hemithyroidectomy and wait and see approach,however thought I'd be discharged by now! Ive not seen her this year because of the covid situation,just had my bloods done,see her next week and then waiting on ultrasound for neck.

How are you and you wee boy getting on?? I hope coping with covid hasn't been too hard, and you son hasn't been too disconjointed with it all.

It's crap to hear you haven't got your levels correct aswell after it must be about 2 year since your operation.

Stay strong lovely just wanted to comment and say hi, would be lovely to hear from you.

Amanda xx

Hello, I think there are two causes of confusion around TSH and thyroxine doses. The first is the high/low issue. The second is GPs not understanding the targets.
TSH and thyroxine doses are like opposite ends of a seesaw. If the dose goes up, the TSH should go down. So when your doc is saying that the TSH is too high and they want you to drop the dose, it's nonsense. They probably mean the dose is too high (in their opinion) and it needs to go down. If the TSH was indeed too high, they'd need to INCREASE the dose to get it lower. I hope that makes some sort of sense, 

Most GPs see LOTS of people with thyroid problems but very few have patients who've had thyroid cancer.  Hence, they know the 'normal' range they want their underactive thyroid people to get to - TSH at 0.5 to 2.5 or possibly as high as 5 depending on the guidelines they follow. Most will not know that after cancer diagnosis, the oncologists will want your TSH down around 0.1 for the first few years. 

GPs need to give you the dose defined by your specialist and not take their own best guess at it.