Graves disease: Is remission over? Now what?

It's been 12 months since I stopped block and replace (was previously medicated with just carbimazole for a period before starting 12 months of B&R). I thought i was out of the woods - TFTs normal, felt great and was really pleased to be off the meds. Today i received results from a blood test taken last week (a routine TFT check plus I was feeling mild rushes at night/becoming more aware of heartbeat). My BP + pulse were normal at blood test appt. I received my blood results today and disappointed doesn't even describe it:

TSH - 0.02 (below range)

T4 -18.7 (normal)

At this stage i don't have the same symptoms as I did when Graves was initially diagnosed (T4 - 45 and TSH - 0.01). I suffered severe palpitations before initial diagnosis and had also been seen by a Cardiologist who diagnosed unsustained VT - it really wasn't pleasant. Thankfully all of the cardiac issues resolved once the meds kicked in.

Now, my only other symptom in addition to being more aware of my heartbeat is my period is late by 3 weeks (I'm 45 so maybe mother nature at play here).

Please advise, what are the next steps? GP wants a retest in 6 weeks but I feel I need endo input before then. I will contact endo office tmrw.

Can anybody shed some light on my results and what the future holds? Is this subclinical hyper? Please share your experiences!!

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3 Replies

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  • Hi Rosalily it may be that you are starting to go hyper again as tsh is suppressed but your t4 is in normal range so it is a job to say for sure. Try not to worry too much as endo could just put you back on block and replace. I was on and off carbimazole for 12yrs and was fine for all of that time.

  • Thank you Raventhorpe. It's just a waiting game really. I will try and relax about it. Endo agrees with GP and also advised a blood test in 6 weeks. Fingers crossed!

  • You are never "out of the woods" with Graves. I was in remission for about 30 years then it returned, I had no hyper symptoms so was really surprised to be back on the roundabout. Got fed up with the B&R phaffing about so I asked for RAI and got off the roundabout for good 😊

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