I’ve had Graves’ disease twice in the past, both times treated successfully with carbimazole. I came off carbimazole just over a year ago and felt great. Blood tests at 3 and 6 months were both within limits. I had a horribly stressful time in autumn and winter which I think was the trigger for my latest bout. I’ve been feeling edgy and am struggling with my running so I took a medichecks kit and I’m through the floor in TSH with accompanying high t3 :(
I was told it would likely reoccur so not shocked but the last time, the consultant said next step was radioactive iodine or surgery, neither of which are appealing. I’m not sure why I just can’t take carbimazole constantly and why being hypo on thyroxine seems to be preferable to being hyper on carbimazole?
has anyone experienced radioactive iodine or removal surgery or indeed on a permanent maintenance dose of carbimazole? If you had the treatment are you now hypo and is that easier to deal with? Please share your experience
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Autoimmune disease
Graves disease back again…what next?
LoveItOrListIt · 27/04/2022 21:36
ACatCalledLola · 05/05/2022 11:08
@TooManyPJs thanks for all of that. That’s really useful for me too as I’m also refusing thyroid removal or destruction so far. My consultant said there wasn’t an issue with carbimazole long term except that the graves may break through it eventually. I get the impression that an under active thyroid is cheaper and easier to treat and we can be handed back the the GP to manage so it’s the easy option for consultants to destroy the thyroid and hand us back over. Maybe I’m being cynical but they really do seem to push for this from the beginning. When my meds have been off I’ve noticed that I definitely feel better in myself when I’m slightly overactive rather than even slightly under active. The parameters of normal thyroid levels are going to be different for everyone and I don’t want to go under active and be stuck there because I’m being told my levels are fine.
Thatsajokeright · 06/05/2022 18:39
OP - it's cheaper to be on thyroxine for sure. Underactive Thyroid is also considered something a GP can deal with so they can get you off the books.
Don't forget to consider that you may not do well on thyroxine. I didn't. There are alternative hormone replacements you can take but not readily available on the NHS. My CCG has just stopped all T3 prescriptions and the NHS won't prescribe NDT (unless you're married to Michael Gove). So you may find yourself in the same situation I am; £100 a pop for a private consultant and £250 a quarter on a private prescription.
Push hard to stay on carbimazole if you still feel good on it. There's no reason why you can't.
Also recommend having a look at the thyroid forum on healthunlocked.com
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TooManyPJs · 06/05/2022 18:54
Why is your prescription costing you £250 a quarter?!? Is that for NDT?
I pay £125 for a follow up consultation. No fee for writing the prescription. And the T3 20mcg tablets cost 50p a tablet. I only take 10mcg a day so cut with a pill cutter.
Thatsajokeright · 06/05/2022 18:39
OP - it's cheaper to be on thyroxine for sure. Underactive Thyroid is also considered something a GP can deal with so they can get you off the books.
Don't forget to consider that you may not do well on thyroxine. I didn't. There are alternative hormone replacements you can take but not readily available on the NHS. My CCG has just stopped all T3 prescriptions and the NHS won't prescribe NDT (unless you're married to Michael Gove). So you may find yourself in the same situation I am; £100 a pop for a private consultant and £250 a quarter on a private prescription.
Push hard to stay on carbimazole if you still feel good on it. There's no reason why you can't.
Also recommend having a look at the thyroid forum on healthunlocked.com
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