Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Graves disease, with orbitopathy. Male age 61
I've been on a block (carbimazole=methimazole) and replace (Levothyrox=Synthroid=T4) for 4 years, now 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.
Thanks
Steve
I've been on a block (carbimazole=methimazole) and replace (Levothyrox=Synthroid=T4) for 4 years, now 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.
Thanks
Steve
Before Titration was 40mg Carb, 100ug Levo, TSH around 1.
Reduction started in May
In July-Aug I was on 20mg Carb, 75ug Levo. TSH on 24Aug was 4. Then went to 10mg carb and zero Levo.
Thanks
There's a recent study somewhere about the number of years to be on meds before trying for remission...I think it might've been 4. So maybe it is time?