Graves relapse - help needed!

[Coast40]

I have been taking Carbimazole for 18 months until Feb 2020 (5mg every other day) and it was balanced and fine for this period. When I first was found to be overactive my T4 was 52 and I was tested for Graves Antibodies which I had on the low side. I started in the last few weeks to feel heart palps, very hot and hot flushes after eating dinner with palps - after a blood test this week was confirmed to be T4 of 72 (0.01 for TSH) which I was really surprised as end of June my TSH was 1.68 so very quickly has gone back to being over active. I feel worse this time than last time, hot flushes and heart racing are the worst bit. Back on Carbimazole 20mg twice a day as before and this got it under control in about 6 weeks last time. I wanted to know for those who have relapsed how quick it happened and how quickly the meds reduce the side effects as above. Any advice most welcome, sleeping is not good as I feel so hot! Feeling a little disappointed it went back so quickly!

[bantam12]

I always relapsed very quickly, within weeks, and each time it was more difficult getting under control again, once my heart started to be effected I had partial surgery and was ok for many years but then relapsed big time again and again so had RAI, job done ✅

[Coast40 in reply to bantam12]

Thanks for your advice. Doc just called to say I will be referred back to Endo, so fingers crossed I will go back to being under control!

[pennyannie]

Hello Coast

If you want to read around Graves Disease and do not know of the Elaine Moore Graves Disease Foundation website you might like to dip in :

It does seem to be a poorly understood and badly treated autoimmune disease and there is much research and advice on the AI component of this disease which you can take an active role in trying to reduce.

Currently, controlling this AI component of the disease seems to be ignored within the mainstream medical arena with their option long term being to remove the thyroid gland and thereby disable the patient, which is far from ideal for the person concerned.

I'm with Graves post RAI thyroid ablation in 2005 becoming very unwell some 8 years on and now manage lingering Graves, thyroid eye disease and hypothyroidism and self medicating as the NHS routinely only prescribe T4 - Levothyroxine hormone replacement.

[Coast40 in reply to pennyannie]

Thanks Penny, I will take a look. It's so frustrating that there is not enough information out there!