Hi Elaine,

I really appreciate your knowledge & advice in managing my Graves Disease. I am very thankful for you answering my questions in the past. I once again seek your advice.

I have steadily decreased my dosage of Carbimazole since diagnosis & have succeeded in keeping my T4 levels mid range to higher end of normal.

My last visit with my Endo I was told I am in remission due to my TRAB results.

But she wishes for me to stay on Carbimazole until September, because that would mean 12 months of treatment. In her opinion being on it for less than a year increases your chance of Graves coming back.

I am hoping to avoid going Hypo during the final stages of my treatment. I understand from reading your website that 20% of people do. I have never been tested for TSI only TRAB. I could very well have blocking antibodies present, as they don’t test for that specifically.

I really want to make sure that I am not overmedicated during this period.

Here are my most recent results;
01/03/17 – 2.5mg (once a day in the morning)
TSH <0.005 (0.40 - 3.50)
Free T4 17.1 (9.0 - 19.0)
Free T3 4.6 (2.6 - 6.0)

28/03/17 - After continuing on 2.5mg (once a day in the morning)
TSH 0.01 (0.40 - 3.50)
Free T4 14.7 (9.0 - 19.0)
Free T3 4.9 (2.6 - 6.0)
TRAB 1.4 (<1 Negative, 1-2 Equivocal, >2 Positive)

28/04/17 - 2.5mg (once a day) REDUCED to 1.25mg for 1 week prior to blood test
TSH 0.04 (0.40 - 3.50)
Free T4 13.4 (9.0 - 19.0)
Free T3 5.1 (2.6 - 6.0)
TRAB 1.2 (<1 Negative, 1-2 Equivocal, >2 Positive)

03/06/17 - 1.25mg (once a day) for 1 week REDUCED to 1.25mg every 2nd day for remainder
TSH 0.08 (0.40 - 3.50)
Free T4 14.3 (9.0 - 19.0)
Free T3 4.7 (2.6 - 6.0)

I am thinking that I should reduce the frequency of taking my meds further to every 3rd day perhaps or even stop altogether. I would love your opinion on this. Is it ok when on such low doses, to just stop taking it?

Is it accurate that I need to stay on the medication for 12 months minimum?

I am also concerned that if my TSH remains suppressed after I end treatment, that this may cause me to go Hypo. Is that how it works?



Your help is once again greatly appreciated.

Thank you kindly,
Linda.

Hi Linda,

You probably don't need to still be on Carb but you could cut the dose to 0.625 and take it every 3rd day until September. A dose as low as 0.5 mg is effective.
It's true that the TRAb test measures both TSI and blocking TSH receptor antibodies so your level of 1.2 probably does indicate remission although a TSI test would be better. The fact that you're secreting TSH at all suggests that your TSH receptor antibodies are indeed low. I'd probably stay on this very low dose because your doctor asked you to. studies show that people on meds longer, average 3-4 years, end up with the highest rates of permanent remission. But this really does vary. Women who develop Graves' after pregnancy, for instance, often move into remission faster because they typically have a combination of Graves' disease and postpartum thyroiditis.

Staying on meds longer won't up your risk of developing hypothyroidism although when thyroid hormone levels fall too low, there's a better chance of producing blocking TRAb. I'd be sure to take selenium and vitamin D3 if your level is low to help reduce any thyroid antibodies. best, elaine