Stopping block and replace.

[Billycasper]

I’m wondering if anyone can help with information about what to expect when I stop my block and replace regime of cabimazole 20mg/day and Levothyroxine 75mcg/100mcg alternate days. I’ve been on this for 18 months now. I was diagnosed with Graves from a mildly elevated TSI antibody test (3.25 IUL, range 1.51-3.00).

Extra info on results - Negative = <2.9, Equivocal = 2.9 - 3.3, Positive = 3.3

so from these results the Consultant said I was mildly positive

Trab 1.61 (0 - 2.9).

The Consultant says I should stop all medication completely so I’m not sure how the thyroid will react to this or how long it takes to get back to normal production? Do I need to take it easy at first?

Any advice will be very welcome, thank you.

[asiatic]

I have been on B&R for 6 years. Presently down to 5mg. Carb. /75mcg. Levo. Thyroid levels are good and I feel well. Research now shows the longer we stay on ATM the higher chance of a lasting remission. I believe if I had just stopped I would have become hypo. I had high TRAb . Your low levels may mean you have more chance of remission and you can always restart meds if symptoms return. However, I think I would prefer a gentler approach. Why not go down to 15 then 10 then 5mg. Carbimazole monitoring with blood tests. Why rush things ?

[Billycasper in reply to asiatic]

Thanks for the reply asiatic. I’m pleased to hear you’re doing so well on B&R, long may it last. I’ve already had a word with the Consultant and told him I don’t want any irreversible treatment should I relapse and he has agreed that I can go on Carbimazole only and titrate down so I suppose I’m happy to stop everything at the moment and see how things turn out. Fingers crossed.

[asiatic in reply to Billycasper]

yes fingers crossed. Hope it works out for you. Keep us posted. It is interesting to follow others on the same path. I have been unable to gather much information about stopping B&R as most are weaning off Carbimazole alone. When you need levo as well things become more complicated. As long as we are being well monitored there is room for a little experimentation as to what suits us. Good luck.

[pennyannie in reply to Billycasper]

Just for reference if push comes to shove -

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

ncbi.nlm.nih.gov/pubmed/306...

elaine-moore.com

[Angeliki_]

hello,

I am on the same page as you Are! After 16th months of block and replace therapy , my endocrinologist told me to stop the therapy . I am also wondering what to expect . So good luck to both of us . Finger crossed everything will be fine

[Billycasper in reply to Angeliki_]

hi Angeliki, I’m on holiday in Portugal at the moment so I’ve decided I’ll stop on Sunday on my return to the UK. I’ve got everything crossed 😂. I’ve had a bad week and not been able to get the balance right with the Levothyroxine dose so I’ll be glad to come off everything and see what happens. Good luck to you too.

[pennyannie in reply to Angeliki_]

Just for reference following on from your first post 2 years ago :-

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

ncbi.nlm.nih.gov/pubmed/306...