I've been on a block (carbimazole) and replace (Levo) for 4
years, fighting off the medics bearing knives. I'm OK on Levo.

I agreed to try to switch to a “titration” regime, ie reduce the carbimazole and
allow my thyroid gland to produce the right amount of T4 on its own.
For about 4 months ‘its gone OK, review every 6 weeks or so reduce the
carbimazole and Levo a bit. This last time however (down to 10mg carbimazole
and zero Levo), my TSH has shot up to 37. I have mood and slowness symptoms,
maybe others.

OK the questions.

1
I think I should take Levo at low dose for a few days, just to get over the
immediate deficiency. The endo seems to think I should just rely on reducing
the carbimazole (from 10ug to 5ug/day).

2
I think I should have an TRaB antibody test today, as it is known that becoming
UN-euthyroid(?) is a significant risk for the Graves swinging into a full blown
repeat episode, with further eye damage etc as a result. Endo thinks it can
wait for 3 weeks. I think if the TraB is up we need to treat that now
(Intravenous prednisone pulses), not wait until it really gets going.

3
I’m inclined to think I should just forget about a titration regime and go back
to block replace. The study by the top Graves team says it's fine. Elbers L,
Mourits M, and Wiersinga W. Outcome of very long-term treatment with antithyroid
drugs in Graves' hyperthyroidism associated with graves' orbitopathy . Thyroid,
December 29, 2011.
doi: 10.1089/thy.2010.0181

4
Everything I've read says when titrating then review levels every 2-3months.
That seems bonkers to me when it's possible one could become seriously hypo (or
hyper) (or strongly re-actived Graves) inside a few weeks. Is it bonkers? (I
understand that 2 or 3 months is necessary to assess a stable level, if one
wanted to tweak the Levo from 100ug to 112ug or something, but greater vigilance
seems required when you're making big dosage changes)

I'm not asking anyone to criticise my Endo, just some material for discussion
please.

Hello – We’re fellow patients here, not docs, so we can’t give specific medical advice, but here are a few general comments…

I’m guessing you are in Europe or Australia, since Carbimazole is the more commonly prescribed anti-thryoid drug in those location, and the block-replace regimen is not as commonly used in the U.S.. If you are interested in reading the latest U.S.-based guidelines, though, you can check out the “Treatment Options” thread in the announcements section of this forum. Those guidelines recommend the titration (ATD only) approach over the block and replace method, and recommend labs every 4-8 weeks until the patient is euthyroid, then every 2-3 months.

Antibody testing is generally recommended in the U.S. in order to help make the initial diagnosis and to determine when a patient is ready to come off of anti-thyroid drugs. Some eye doctors will also use antibody testing to determine when TED patients have reached the “cold” phase, but not all docs agree that there is a correlation. So I don’t know that the antibody test would be useful to you at this particular point, but if you want it just for your own information – and can pay for the testing, which is expensive – it’s a simple blood test that can be done in conjunction with your other regular labs.

Hope this helps!