Hi, i have had Graves disease for 17 years now, and been in a cycle of long remissions and occasional relapses during that time. Until Covid I was being followed up at a hospital endocrine clinic after the most recent relapse 18 months ago. I came off carbimazole about 10 months ago. Now i am in the community (GP) for follow up with a recommendation from the hospital that i have blood test every 4 months. I have been having what i think are early symptoms of hyperthyroidism and asked the GP for a blood test but results today are for TSH only. Is this the new normal? That even for confirmed thyroid patients that T4 is not tested until an abnormal TSH result comes through?
TSH was 1.05 mIU/L [0.34 - 5.6] for interest. I know that when i am well that the concentration is usually around 2mIU/L. But since mine is, technically, a 'normal' result I suppose i wont graduate through to the next round for T4 testing. I have a phone appointment next week with a GP to ask for that test anyway. And then i will have to wait for another phlebotomy appointment etc.... I guess it will be at least another 10 days from now that i will have the T4 results, even if everything runs smoothly.
Its really frustrating because after all these years, i know when i am getting sick. I usually leave it until i feel quite unwell (because i kind of like the high of having so much energy when i am just a little bit hyper - bad I know). But last relapse i swore to myself that i would take this illness a bit more seriously.
I have seen tests to buy online where I use a finger prick to collect own blood sample. Perhaps this might be the way forward - does anyone know if GPs will prescribe carbimazole on the basis of these mail-order tests? Or would i have to wait for their own tests to come back? I sometimes think that the worst thing about having thyroid disease is not the disease itself, but the frustration of having to deal with the health care system (although of course many people who work in it are great).
Sorry, it has turned in to a bit of rant. All advice or info gratefully received.