I am in absolute shock. The GP has just rung me about reducing my levothyroxine down to 100mcg from 125. I said I was not happy about it and she said the usual because my TSH was very very low she had to do it. On pennyannies great advice I said in the nicest way do you know I have had RAI and she said no and I said why would you want to stimulate something that is dead and she said I was absolutely right. I was completely shocked. She said she will not reduce the levo and she will make sure they will not go by my TSH in the future. What a result. Thankyou everyone for your invaluable support and advice
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Wilky21
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That's brilliant that the doctor listened to you. It's a pity their training in dysfunctional thyroid glands are so poor as the majority seem to only look at a TSH and I doubt they actually know what TSH means (thyroid stimulating hormone).
You must be given top marks for changing a doctor's attitude plus 'fighting your corner'. Plus, the doctor accepting you had more knowledge than she had.
When I spoke to one of my gps because he was diagnosing by tsh I said but I don’t have a thyroid, his reply was ‘ the pituitary gland doesn’t know that’ I said well in 2 years, it’s taken a long time to work it out then. He said nothing.
Hello. My TSH was 0.01. I have had the RAI treatment and I have Graves. The TSH cannot be used to measure my thyroid as after the RAI it’s now been killed so why would i want to stimulate something that doesn’t work. I should be measured by T4 and T3 Hope that helps
Totally agree that TSH alone is no use as a measurement. Need t4 and t3, and even reverse t3 in an ideal world.
But even if you have had RAI, your TSh reading is still important. I would not get too stuck on the ‘not wanting to stimulate something that does not work’ as I’m not sure it’s a complete argument. 0.01 is nearly non detectable TSH and it’s over suppressed. I have had RAI due to thyroid cancer and kept my TSH over suppressed initially but even in my case, the guidelines are .5 and after a few years of that look to increase jt . This is because over suppression is not good long term for your health.
Also remember that RAI does not guarantee total ablation of the thyroid. Although probably in your case that’s not an issue as it is in mine.
All in all what I wanted to say is beware of keeping your Tsh that low if you don’t need to.
just out of interest,I'd like further explanation of the logic of this argument too please.
I agree that using TSH to adjust dose by is a poor idea , compared to using FT4/FT3, (for everyone not just those with no thyroid). Congratulations on getting Gp to dose by FT4/3. Result
But i thought that the pituitary (and hypothalamus?) 'reads' the circulating blood levels of T4/T3 and produces TSH accordingly.
So, i can see an argument that there may be something amiss with the pituitary, preventing it making enough , or producing too much TSH (secondary/central ?)
But i can't follow why it makes a difference if the T4/T3 comes from the thyroid or from replacement hormone tablets ? How does the pituitary know the difference ?
The hypothalamus and the pituitary respond to thyroid hormone levels in the blood. They don't "know" that the thyroid is non-functioning.
The most important argument for someone who has had RAI, in my opinion, is that people who've had Graves' or hyperthyroidism from some other cause will often have an extremely low/suppressed TSH due to long-term high thyroid hormone levels.
Once the high thyroid hormone levels are discovered treatment should be given to lower them... But in many cases where TSH has been low for a long time the TSH doesn't react to lower thyroid hormone levels in the normal way. The TSH can stay extremely low or too low permanently after being hyperthyroid.
If TSH doesn't respond to low thyroid hormone levels then it can't be used to monitor whether treatment is at the correct level.
Hi no worries ask away. My thyroid was going way too fast and this happened a few times so the specialist decided RAI would be the best treatment for me. It is a capsule or liquid form which you swallow and it absorbs quickly into the bloodstream and concentrated from the blood by the thyroid gland where it starts destroying the gland cells. Following this you have to take levo for the rest of your life because consequently you have no thyroid.
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