15 months of carbimazole

[TLVR]

I'm starting to think that each endocrinologist has their own idea of how to treat graves disease re using AT medication. I've had 4 episodes of graves in 14 years. Each time I'm prescribed B&R at 40mg carbimazole p day for 6 months. With 100mcg of levo for the last 4 months. But I see that other people are prescribed different doses for various periods of time.

My current endo prescribed 40mg p day until my tsh receptor antibodies reduced significantly.

So I was on 40 mg for 9 months! After which I felt terrible and had put on 25% of my starting body weight.

I decided to reduce it to 20mg per day. Basically treating myself, as I had so few blood tests and follow up consultations.

I started feeling better and continued like that for another 6 months and then stopped everything. So 15 months total on carbimazole and levo.

My tshR ab at last blood test had reduced from 6.8U/L to 1.8u/l.

Endo was chuffed with this result.

I feel great atm health wise, but sceptical about the endocrinologist's method.

Has anyone else been treated in this way?

[pennyannie]

Hey there again ;

Well - it's said it takes great skill and experience on the part of the endocrinologist to get the medication right for the individual :

Blood tests tend to lag behind symptoms by a few weeks and with Graves antibodies blocking and/ or stimulating T3 and T4 production at any given time - it is challenging.

I think it also depends on hospital guidelines and the pressure to reduce O/P waiting list times rather than extend them.

Since I was told at my very first hospital endocrinology appointment that I was to have RAI thyroid ablation the following year I now take that to mean there were no experienced endocrinologist within the department.

Looking back, it is true, i never saw the same endo twice and when I questioned this, told that they were all on rotation for just a few months.

I don't think the interest is there - it's an AI disease for which mainstream medical have no answers / solutions other than suggesting definitive treatment.

You already have the research paper suggesting longer term AT drugs the better long term outcome for the patient but guessing in the present circumstances, this would put O/P waiting list times under further additional pressure.