I was diagnosed with overactive thyroid over 20 years ago and was prescribed propylthiouracil to manage my symptoms and levels. I have my bloods taken every year and there has never been any reason for concern. I’ve recently requested my next prescription of propylthiouracil and my GP has text me saying that as my thyroid has been stable I can come off my medication as long as I my bloods are checked each year.
I am very uneasy about coming off my meds just like that….I always thought once your thyroid was overactive nothing would make it better and that lifetime medication is necessary to stop the thyroid being overactive…
Your thoughts would be appreciated xx
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Firki68
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Hi , to some extent it depends on the reason for the overactivity in the first place ...
if it was Graves Disease (autoimmune hyperthyroidism) then the overactivity is caused by specific antibodies called TSI (Thyroid Stimulating Immunoglobulins) which are a form of TRab (Thyroid stimulating hormone Receptor antibodies) ........ if / when the level of these antibodies goes down, the overactivity will cease (remission). PTU (or Carbimazole) are usually given for about 18mths to allow time for these antibody levels to go down, and if they do go down , the patient is usually taken off it to see if they remain in remission.. some remain ok , some will relapse quite soon , some will relapse years later , and some will never relapse. So Graves Disease doesn't necessarily mean staying on PTU/ Carbimazole for life.
but if it was caused by a 'hot nodule' (an autonomous nodule producing too much thyroid hormone) then the overactivity would normally be continuous and antithyroid drugs would need to be continued long term... (or more often ~ 'definitive' treatment is given to destroy/ remove the thyroid ~ meaning then the patient becomes hypothyroid and needs thyroid hormone replacement for life)
I had Graves’ disease back in 2012/3. I was treated with block and replace for a year then when my blood levels got where they wanted them I stopped all of my thyroid meds the day after I saw my consultant and I’ve been in remission ever since, so you obviously can stop meds and still be ok.
Have you tried to stop your PTU before?
How much PTU are you taking and what are your thyroid bloods looking like at the moment?.
Have you taken continuously? Ever tweaked dose trialed stopping before?
GP usually do not manage hyper. A specialist should be, & annual blood tests are for stable hypothyroidism (that a minimum) if on anti thyroid blood tests should far more frequent. Eg every 3 months. 6 weeks after any change including pill brands for example.
I think it depends on your original diagnosis for your thyroid being overactive :
Maybe your thyroid levels are stable because you are taking the Anti Thyroid drug ?
What is he basing this suggestion on ?
Have your Free T3 and Free T4 readings changed - compared to previous readings ?
If you have Graves Disease - the TSH is a very unreliable measure of anything and why it is essential to run a full thyroid panel to also include the Free T3 and Free T4 results / ranges especially since you are taking an AT drug that needs close monitoring.
If well on the AT drug and living your best life - I'd stay put - but then I'm with Graves and went through definitive treatment - RAI thyroid ablation - and much more unwell being hypothyroid than I ever was being hyperthyroid :
The AT drug is perfectly safe to stay on long term -
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