Graves Disease

[Boaby]

I was diagnosed with Graves 2 years ago and was successfully treated with Carbimazole. Edicrologist has now advised me to stop taking it(was only on 5mg for most of the time) now a bit anxious at what comes next. Anyone else had similar experience? If so interested to know how it went going forward.

[Lalatoot]

That is standard procedure. Once you have been on a small dose for a while and your thyroid hormone results are in the normal range, carbimazole is stopped to see if you have gone into remission.Some folks have years of normality. Others begin to go hyper again soon after stopping.

I had 3 trials of stopping but had to restart carbimazole each time. The endo I was with for the last trial was not happy with long-term carbimazole use and I never felt right on it so I had RAI and became hypo.

[Boaby in reply to Lalatoot]

How long were your periods of remission?Now that you are hypo are you feeling ok?

[Lalatoot in reply to Boaby]

Periods of remission were only a few months. My friend and I both had RAI. She takes levo and is just fine.

I did not do well on levo and my endo wasn't much good at getting me on a high enough dose so it has taken many years for me to start to get well having adding liothyronine to the levothyroxine. I was not well when on carbimazole either so I don't regret having RAI.

[pennyannie]

Hey there again:

From memory you have been on a low dose of Carbimazole for a couple of years now and hopefully if you choose to stop the AT medication you maybe well and fine.

Anxiety is a common symptom of Graves and if you wish you stay on the endocrinologist O/P list a little longer, just ask to extend your care package.

Do you have any current T3 and T4 blood test results and ranges there to share with forum members and have your Graves antibodies been rerun and are now negative ?

Did you manage to get your ferritin, folate, B12 and vitamin D levels tested as these should be maintained at optimal level to help support you through this phase of the disease ?

pubmed.ncbi.nlm.nih.gov/338...

[Boaby]

Hi yes I have been on low doze for a couple of years now and feeling great. Hence the anxious feeling now about the way forward. Graves Antibodies were re run and were negative. Have to have full bloods again after 6 weeks without meds so it is just a waiting game now. 🥴